The Personality of Chronic Fatigue




Distant light among water

Studies suggest that chronic fatigue may not only have the power to change a person’s personality but that certain personality traits may also put a person at higher risk of developing chronic fatigue. One recent study, in particular, examined the personalities of both people diagnosed with chronic fatigue syndrome and victims of medically unexplainable chronic fatigue not meeting criteria for chronic fatigue syndrome.

Study participants diagnosed with chronic fatigue syndrome had to have experienced medically unexplainable fatigue that limited their daily activities for at least six months with four of the following symptoms: headache, muscle pain, joint pain, sore throat, tender lymph nodes, significant impairment of memory or concentration, unrefreshing sleep, and unusual postexertional malaise.

The study, published in Psychotherapy and Psychosomatics, found that chronic fatigue syndrome victims scored higher in neuroticism, a measure of vulnerability to negative emotional states such as anxiety or depression, than both people without fatigue and people with medically unexplainable fatigue. Victims of medically unexplainable fatigue, however, still scored higher in neuroticism scores than people without fatigue. The researchers also found a reverse pattern with extraversion, one’s level of activity and sociability. Chronic fatigue syndrome victims were the least extraverted, and people without fatigue were the most extraverted. Although these results were solely correlational, in another study, chronic fatigue syndrome patients rated themselves as higher on neuroticism and lower in extraversion when they were ill then when they were well.

The reduced levels of extraversion may indeed be a result of fatigue rather than a risk factor for fatigue. It is possible that neuroticism is also either a result of the fatigue itself or a result of the same factors which are causing the fatigue. On a psychological level, chronic fatigue may lead to greater emotional burden due to feelings such as worry, frustration, and aloneness that victims of chronic unexplainable fatigue often experience. This emotional burden might, in turn, lead to higher neuroticism scores. Chronic fatigue could alse cause or be the result of an impaired physiological response to stress.

The two groups of participants with chronic fatigue had similar levels of agreeableness and conscientiousness which were lower than the scores of people without fatigue. Agreeableness is a measure of the tendency to be cooperative and compassionate towards others, and conscientiousness is a measure of such traits as being organized, planful, and self-disciplined. Whether agreeableness and conscientiousness decrease after onset of the chronic fatigue or are risk factors for chronic fatigue is unclear.

The study also found that a disproportionately large number of chronic fatigue victims had personality disorders, or maladaptive behavior patterns. Twenty-nine percent of people with unexplainable fatigue and 28 percent of people with chronic fatigue syndrome had at least one personality disorder. The most common personality disorder found among people with chronic fatigue syndrome was obsessive-compulsive personality disorder, a personalitydisorder involving a maladaptive obsession with perfection, rules, and organization. Maladaptive behavior patterns may in fact be risk factors for developing chronic fatigue. A past study followed sets of twins for 25 years and found that high stress and emotional instability, which are both causes and results of maladaptive behavior patterns, increased the risk for developing chronic fatigue-like illness.

Interestingly, another study examined patients with multiple sclerosis, a fatiguing illness which, like chronic fatigue syndrome, has an unknown cause, and found that the multiple sclerosis patients had about as many personality disorders as the chronic fatigue syndrome patients. Maladaptive behavior patterns thus may be risk factors for both chronic fatigue and multiple sclerosis.

Although about a quarter of people with chronic fatigue syndrome are disabled enough that they are either unemployed or receiving disability compensation, only about half of people with this disorder actually consult a physician about their illness. This can perhaps be partly attributed to the lack of knowledge among physicians about the nature of unexplainable chronic fatigue as well as to the limited number of current treatments. Understanding the personality behind chronic fatigue will bring the victims of medically unexplainable chronic fatigue one step closer to getting proper help.

References

Buckley L, MacHale SM, Cavanagh JT, Sharpe M, Deary IJ, & Lawrie SM (1999). Personality dimensions in chronic fatigue syndrome and depression. Journal of psychosomatic research, 46 (4), 395-400 PMID: 10340240

Johnson SK, DeLuca J, & Natelson BH (1996). Personality dimensions in the chronic fatigue syndrome: a comparison with multiple sclerosis and depression. Journal of psychiatric research, 30 (1), 9-20 PMID: 8736462

Kato K, Sullivan PF, Evengård B, & Pedersen NL (2006). Premorbid predictors of chronic fatigue. Archives of general psychiatry, 63 (11), 1267-72 PMID: 17088507

Magnusson AE, Nias DK, & White PD (1996). Is perfectionism associated with fatigue? Journal of psychosomatic research, 41 (4), 377-83 PMID: 8971668
Nater UM, Jones JF, Lin J-MS, Maloney E, Reeves WC, & Heim C (2010). Personality Features and Personality Disorders in Chronic Fatigue Syndrome: A Population-Based Study. Psychotherapy and Psychosomatics, 79 (5), 312-318 PMID: 20664306

Pepper CM, Krupp LB, Friedberg F, Doscher C, & Coyle PK (1993). A comparison of neuropsychiatric characteristics in chronic fatigue syndrome, multiple sclerosis, and major depression. The Journal of neuropsychiatry and clinical neurosciences, 5 (2), 200-5 PMID: 8508039

Taillefer SS, Kirmayer LJ, Robbins JM, & Lasry JC (2003). Correlates of illness worry in chronic fatigue syndrome. Journal of psychosomatic research, 54 (4), 331-7 PMID: 12670610

White C, & Schweitzer R (2000). The role of personality in the development and perpetuation of chronic fatigue syndrome. Journal of psychosomatic research, 48 (6), 515-24 PMID: 11033370

  • http://xmrv.blogspot.com pochoams

    Trying to stigmatize a patient with a chronic illness such as MS or CFS with sentences like: “you are sick because of your personality, is your fault” is really the biggest bullshit you can throw to a patients face, and it is also devastating for the patient.

    Just for you to know, a new human retrovirus called XMRV has been associated to 87% of CFS patients, and is present in 4% of healthy donors.

    Wether XMRV ends up to be the physical cause of CFS or not, what is clear is that CFS patients do have an immune problem that allows XMRV to be present, and immune problem that is far to be related to a personality disorder!

    • http://brainblogger.com Julnar Issa, BS

      Hi Pochoams,

      As I explained to some of the commenters below, the researchers were not trying to state that mental illness leads to chronic fatigue syndrome or that CFS is a mental illness. They were merely noting that a large percentage of CFS sufferers have had experiences with chronic stressors or psychological difficulties. This may be because of the mind-body connection. It is well-established that chronic stress weakens the body’s immune system and makes people vulnerable to physical illness.

      This is not the fault of the sufferer. People cannot be blamed for any stressors or psychological difficulties that they experience in their lives.

      CFS researchers have a long way to go before determining what single retrovirus or combination of factors causes the set of symptoms known as chronic fatigue syndrome. This research finding that the XMRV retrovirus appears to exist only in CFS sufferers in the North America and not in the UK may be of interest: http://www.ncbi.nlm.nih.gov/pubmed/20066031.

      • Willow

        This cohort is not people with CFS. It is mostly made up of people with Major Depressive Disorder and other non-CFS fatigue, and people who are not fatigued at all but are depressed.

        Jason LA, Najar N, Porter N, Reh C. “Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition”. Journal of Disability Policy Studies. September 2009 vol. 20 no. 2 93-100.

        The Centers for Disease Control and Prevention (CDC) recently developed an empirical case definition that specifies criteria and instruments to diagnose chronic fatigue syndrome (CFS) in order to bring more methodological rigor to the current CFS case definition. The present study investigated this new definition with 27 participants with a diagnosis of CFS and 37 participants with a diagnosis of a Major Depressive Disorder. Participants completed questionnaires measuring disability, fatigue, and symptoms. Findings indicated that 38% of those with a diagnosis of a Major Depressive Disorder were misclassified as having CFS using the new CDC definition. Given the CDC’s stature and respect in the scientific world, this new definition might be widely used by investigators and clinicians. This might result in the erroneous inclusion of people with primary psychiatric conditions in CFS samples, with detrimental consequences for the interpretation of epidemiologic, etiologic, and treatment efficacy findings for people with CFS.

        The difference between Fukuda (official CDC 1994 definition) and “Empirical”/Reeves surveys:

        Fatigue
        Fukuda–severe fatigue (defined as mental and physical exhaustion, not sleepiness and not lack of motivation) that patient reports is substantially reducing activities, is not resolved by rest, and is not from ongoing exertion. Must have lasted at least 6 months.
        Reeves–above criteria is considered to be satisfied if two items from the standard MFI survey reveals relatively increased rate of either general fatigue or reduced activity not necessarily connected to fatigue.
        Exhaustive fatigue is required under Reeves.

        Reduction of activity:

        Fukuda–decrease in activities secondary to specific CFS symptoms such as fatigue and cognition difficulties.
        Reeves–decrease in activities relative to population, for any reason (including secondary to personal/emotional problems)
        CFS symptoms causing the reduction in activity is not required under Reeves. Debilitation is not required (considers a full 25% of the population to have a pathological reduction of activities)

        Fukuda CFS-diagnostic symptoms:
        Fukuda–At least 4 of the symptoms must be concurrently present, not pre-dating fatigue (i.e. they must be related to the illness at hand). All 4 must be continuous or recurring.
        Reeves–At least 4 of the symptoms must be present over the previous month, and the score of severity x frequency of combined symptoms must be at least 25 (any one symptom can get up to 16).
        Reeves does not assess the comparative onset of these symptoms with “fatigue” (as they consider it above), and asks only about the previous single month, so the symptoms need not be related to the disease at hand. One doesn’t need 4 symptoms all continuous or recurring, or otherwise significant.

        See also:

        Jason L, Brown M, Evans M, Anderson V, Lerch A, Brown A, Hunnell J, Porter N. “Measuring substantial reductions in functioning in patients with chronic fatigue syndrome.” Disabil Rehabil. 2010 Jul 9.

        Purpose. All the major current case definitions for chronic fatigue syndrome (CFS) specify substantial reductions in previous levels of occupational, educational, social, or personal activities to meet criteria. Difficulties have been encountered in operationalizing ‘substantial reductions.’ For example, the Medical Outcomes Study Short Form-36 Health Survey (SF-36) has been used to determine whether individuals met the CFS disability criterion. However, previous methods of using the SF-36 have been prone to including people without substantial reductions in key areas of physical functioning when diagnosing CFS. This study sought to empirically identify the most appropriate SF-36 subscales for measuring substantial reductions in patients with CFS. Method. The SF-36 was administered to two samples of patients with CFS: one recruited from tertiary care and the other a community-based sample; as well as a non-fatigued control group. Receiver operating characteristics were used to determine the optimal cutoff scores for identifying patients with CFS. Results. The SF-36 Role-Emotional subscale had the worst sensitivity and specificity, whereas the Vitality, Role-Physical, and Social Functioning subscales had the best sensitivity and specificity. Conclusion. Based on the evidence from this study, the potential criteria for defining substantial reductions in functioning and diagnosing CFS is provided.

        • Sue

          People with depression do get fatigued, but not everyone does. Some people are the opposite. Fatigue due to depression/ psychiatric illness doesn’t feel remotely the same as that caused by ME or CFS. There are many people like myself with OCD or Obsessive Personality Disorder on CFS clinic boks. Many people with psychiatric labels i.e. major depression are languishing on mental health wards, but do actually have ME, but they are told it doesn’t exist. And it’s too easy for ME people to think that all those with a psychiatric label aren’t entitled to their diagnosis of ME. Just trying to say that those of us who have mental illness/psychiatric label doesn’t mean we are all suffering from depression and aren’t very sick with ME and using our wheelchairs for the fun of it.

          • Anonymous

            your line of think sucksw you maqybe need to know someone that has it

      • Willow

        Correction:
        Exhaustive fatigue is not required under Reeves.

        • Anonymous

          until you understand deppressional fitiuge you will get everytime fatiuge is not the same as being tiered or worn out

      • Just Saying

        Julnar Issa said: “As I explained to some of the commenters below, the researchers were not trying to state that mental illness leads to chronic fatigue syndrome or that CFS is a mental illness. [...] This is not the fault of the sufferer. People cannot be blamed for any stressors or psychological difficulties that they experience in their lives.”

        Your words are saying one thing. The Title of this article, on the other hand “The Personality of Chronic Fatigue” is saying something entirely different.

  • polly

    This is the biggest load of bollocks ive read in ages , make me well and ill show you what being extroverted means , i dont have a lot of choice in the fact im pretty introverted at the mo seeing as im virtually housebound .

    I think you would find if you conducted this study on any chronic illness you would get virtually identical results . You cannot exactly go out and paint the town red when you are ill , just surviving on a daily basis is difficult . I have yet to meet a seriously ill person who is able to go out and be extroverted and enjoy life to the full . If they were they wouldnt be seriously ill now would they .

    As the poster above points out the human retrovirus XMRV is currently being studied in connection with ME/CFS . Isnt it time the psychology brigade admitted defeat and admitted that yes actually ME/CFS is a physical disease and not a psychiatric one and any psychiatric problems suffers do develop are a consequence of the illness and not the cause of the illness.

    I also take offence to being called a VICTIM . Im not a VICTIM im a person with a chronic illness who enjoyed life to the full before becoming ill .Ask a person with ME/CFS what they will do when they are well they will come out with a whole list of things , ask a person who is depressed what they would do and they probably wouldnt answer .

    Tine to start looking at REAL research for this god damn awful illness , that will pinpoint the biomedical cause of this and time to ditch the psychobabble in the bin where it belongs .

    • http://brainblogger.com Julnar Issa, BS

      Hi Polly,

      The results from the research draw the same conclusion as you. They found that people become more introverted after they fall ill. This makes sense because anyone who is ill or fatigued does not feel like doing very much, as you stated.

      The researchers are not, in any way, denying that biological factors such as viruses are causing the chronic fatigue syndrome. They were simply noting that a large number of CFS sufferers have had experience with chronic stressors. It is well-established that chronic stress leads to vulnerability to developing physical illnesses. CFS researchers, noting this, have tried to determine if helping people cope with stress would help strengthen the body’s response to the illness. Research has found that cognitive behavioral therapy and graded exercise therapy may help some CFS sufferers.

      Finding a physical treatment for CFS has proven to be elusive. However, managing CFS by managing stress can help some find some relief. For a discussion of some treatments studied for CFS, follow this link: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2907931/.

      • polly

        Research has found that cognitive behavioral therapy and graded exercise therapy may help some CFS sufferers.

        You dont mention the fact that Research has also found that cognitive behavioral therapy and graded exercise therapy may also cause great harm to some CFS sufferers.

        Myself being one of those people . I attended a so called ME clinic and I so wish I hadnt and that I had listened to my own body , I probably wouldnt be in the state I am now .

        I really cannot see how wasting valuable research money on research which to be honest a child of 5 could have guessed the outcome . (doesnt take a genius to work out that someone with a chronic illness is going to be more introverted than extroverted does it ? ) can possibly be morally , ethically or financially justified in any way whatsoever .

        There is Vital research crying out for research money that is being denied at the expense of research such as this . There really is no logic in such descisions .

  • https://accounts.google.com/ServiceLogin?service=blogger&hl=en&passive=86400&continue=http://www.blogger.com/blogin.g?blogspotURL%3Dhttp://www.dancingwiththesandman.blogspot.com/%26zx%3D1p Andrea Pring

    In future, might I suggest the author does a little more ‘in depth’ research before he puts pen to paper. 1/3 of Chronic Fatigue Syndrome sufferers also have POTS (Postural Orthostatic Tachycardia Syndrome), a condition that produces symptoms similar to those of general anxiety disorder. Symptoms of POTS include: racing heart, palpitations, anxiety, sweating, breathlessness, chest pain, dizziness, syncope, weakness, tremour, nausea, vomiting, diarrhoea, etc. POTS, a form of dysautonomia, is caused by a dysregulated autonomic nervous system and has NOTHING to do with a person’s mental state. Time to ditch this outdated and farcical ‘belief system’ for one that looks at the wider picture. If you carry on spouting this sort of nonsense you are liable to look stupid. Don’t say I haven’t warned you.

    Benrud-Larson, L. M., Dewar, M. S., Sandroni, P., Rummans, T. A., Haythornthwaite, J. A., & Low, P. A. (2002, June). Quality of life in patients with postural tachycardia syndrome. Mayo Clinic Proceedings, 77, 531-537. Full text: AID=112&UID=

    Brunner, L. S. & Suddarth, D. S. (2000). Assessment of cardiovascular function. In S. C. Smeltzer & B. G. Bare (Eds.), Brunner and Suddarth’s textbook medical-surgical nursing (pp. 532-563). Philadelphia, PA: Lippincott Williams and Wilkins.

    Fischer, P. (2007). Postural orthostatic tachycardia syndrome. Mayo Clinic Podcast. . mayoclinic.org/rss/heart-podcast.xml/view.htm

    Goldstein, D., Robertson, D., Esler, M., Straus, S., & Eisenhofer, G. (2002). Dysautonomias: clinical disorders of the autonomic nervous System. Ann Intern Med., 137, 753–763. Full Text

    Grubb, B. P. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.

    Grubb, B. P. (2002, October). The heterogeneity of symptoms related to dysautonomia. Symposium conducted at the meeting of the National Dysautonomia Research Foundation Northwest Ohio Support Group. Toledo, Ohio.

    Grubb B. P., Kanjwal, Y., & Kosinski, D. J. (2006). The postural tachycardia syndrome: A concise guide to diagnosis and management. J Cardiovasc Electrophysiol., 17, 108-112.

    Grubb, B. P., & McMann, M. C. (2001). The Fainting Phenomenon: Understanding why people faint and what can be done about it. New York: Futura Publishing Company.

    Low, P. A. (2000, July). Orthostatic intolerance. National Dysautonomia Research Foundation Patient Conference. Minneapolis, Minnesota.

    Robertson, D. (1999). The epidemic of orthostatic tachycardia and orthostatic intolerance. The American Journal of the Medical Sciences, 317, 75- 77.

    Thieben, M. J., Sandroni, P., Sletten, D. N., Benrud-Larson, L. M., Fealey, R. D., Vernino, S., Lennon, V. A., Shen, W. K., & Low, P. A., (2007). Postural orthostatic tachycardia syndrome: the Mayo Clinic experience. Mayo Clin. Proc. 82, (3), 308-313. Full Text

    • http://brainblogger.com Julnar Issa, BS

      Hi Andrea,

      I was aware that many people with POTS meet the criteria for chronic fatigue syndrome. The researchers in this study did not discriminate between people with POT and CFS sufferers who did not have POTS.

      Even after taking POTS out of the picture, not everyone with CFS has the same symptoms. At this point, it is not even known if everyone with CFS has the same illness or if there’s two or more illnesses that have similar symptoms and that meet the current criteria being using to define CFS. However, for the purposes of this study, the researchers diagnosed people as having CFS if they experienced medically unexplainable fatigue that limited their daily activities for at least six months with four of the following symptoms: headache, muscle pain, joint pain, sore throat, tender lymph nodes, significant impairment of memory or concentration, unrefreshing sleep, and unusual postexertional malaise.

  • Allspice

    I really have no idea how your cohort of patients were chosen. But I am happy to see you did not include us suffering from ME in your trial. Although there could be some crossover of ME/CFS
    For those you did choose I feel heart sorry. I hate the way people such as yourselves who pretend to be professionals do treat people with true psychiatric illnesses, you discriminate against them, malaign them and constantly put them down.
    Is this a third world country we are living in where the mentally sick are so inhumanly treated and humiliated for your money wasting trials.
    What next? Opening up Auschwitz type camps to experiment on the mentally ill?
    To think that money is wasted on such crap (and make no mistake crap is all it is as you well know)whilst there are so many struggling to survive is deplorable.
    How you could feel proud at the end of a days work doing what you do defies belief. You are all of low moral fibre and without integrity. This report has sickened me.

    • http://brainblogger.com Julnar Issa, BS

      Hi Allspice,
      The researchers wrote that they used random digit dialing to phone-screen 12,000 residences in Georgia. They ended up interviewing 5,623 people between the ages of 15-93. Based on these interviews, they determined if people met criteria for chronic fatigue or for being well. If you want to read the details of the study, follow this link: http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000319312.

      The research study states that the study participants were only interviewed via phone than completed a clinical assessment. The healthy and unwell participants were treated in the same way.

      I did not conduct the research study and was not involved in the study in any way. However, I do not believe the researchers were trying to say that chronic fatigue syndrome patients are mentally ill or that people suffering from mental illnesses should be discriminated against or mistreated. They are saying that they found that there are a greater percentage of people with chronic stress or other psychological difficulties in the population of chronic fatigue sufferers than in the population of people without chronic fatigue. No one knows why this is the case, however, it indicates that stress may be a significant contributing factors in people’s vulnerability to the illness. This would explain why many people experiencing stress or other psychological difficulties appear to be more likely to develop the illness. It is, in fact, well-established that chronic stress leads to later vulnerability to illness.

      • Anonymous

        This sounds like the “Reeves” cohort or the so-called CDC empiric definition. And the study(s) you cite are likely Reeves personality disorder studies. It is widely agreed among physicians who actually see and work up patients with CFS that the CDC phone screen study is not an accurate way to select for CFS. They basically called a bunch of people and asked them if they were tired. If you look at the details of that cohort, some large percentage of people hadn’t even sought out medical attention for their so-called “fatigue”. If you have ever met a real CFS patient, you’d understand that the symptoms of CFS are so severe that no CFS patient in their right mind would go without seeking medical care and diagnosis of their symptoms. It is impossible to judge if someone has CFS over the phone because there are a considerable amount of other fatigue causing illnesses that take extensive labwork and physical examination over the course of many months to rule out. MS, practically any known infectious disease, various cancers, pretty much any endocrine condition, etc.. none of which can be screened for on the phone.

        Real CFS patients exhibit a cluster of symptoms and immune abnormalities that is remarkably similar from patient to patient. These include profound fatigue (not sleepiness), post exertional fatigue, low v02 max and anaerobic threshold scores (in contrast to psychogenic fatigue which isn’t measurable via exercise tests), low NK cell counts and function, profound memory and concentration problems (with corresponding reproducible abnormal SPECT scans), low body temperature, autonomic instability, flu like symptoms (swollen glands, headaches, body aches, sensitivity to sound and light.. etc), low or 0 SED rate, and it increasingly looks like elevated IL-8 (although that is getting fleshed out with the XMRV research).

        The Dr. Reeves and by extension the CDC program under him is not a good authority on CFS, they have largely ignored it for the past 30 years. What money they did get to study it, they misdirected to other illnesses. Basically they watered down the CFS definition so that they could mental health research with the money earmarked for CFS. They in no way were studying
        “real” CFS. And in fact, Dr. Reeves was swiftly removed from his post after XMRV was associated with CFS over a year ago.

        Stress can add to any illness. But people fight in wars (very stressful) and never develop “CFS”. People come from abusive households and/or are very traumatized throughout life, but they can still run on a treadmill and test normal on an exercise test. The can remember things and reason with their minds. They don’t have flu like symptoms all the time. And if you reverse the logic here.. people obviously have had personality disorders for ages and 99% don’t even have one symptom in common with CFS.

        The study you discuss at best states the obvious–that sick people aren’t happy about being sick. And that sick and tired people are less social (introverted) and people who aren’t sick are more extroverted. It them goes on to mention people who were tired were more likely to be “neurotic” and “perfectionist”. You can’t draw any meaningful conclusion from that observation. There are plenty of neurotic and perfectionist people who don’t have CFS. And there are many people with CFS who aren’t high strung. And of course sick people aren’t as social, THEY ARE SICK. Trying to attribute causation there makes no sense. This study does nothing but try to blame people with a real physical illness for their own suffering.

        Please take the time to learn about CFS more before writing more about it. There is a lot of mis-information out there, and unfortunately the studies you quote fall into that category. Its harmful to people with actual CFS when studies like this are discussed in the media as having any thing to do with CFS.

        • Anonymous

          I also refuse to believe any sort of “illness behavior” pattern has any sort of effect on the outcome of a major infectious disease. I don’t think something like drug resistant TB cares what you are thinking as its destroying your lungs. Polio could care less if you are happy, sad, perfectionist, lazy, neurotic, etc.. neither could smallpox, or HIV. MS doesn’t spare your legs from disability if you are nice to it and think positive thoughts. Stress can make a herpes outbreak more likely, but you have to actually have been exposed to the herpes simplex virus for it to have any effect at all. So while outlook can certainly have some impact on quality of life within the constraints of serious illness, it can’t make it go away and it probably has only minor ability to modify your susceptibility in the first place. Psychology has it’s place in society, but overreaching into the realm of serious illness like CFS at best delays real research into the cause and at worse causes harm by blaming patients for their illness and pushing treatments on them that are a waste of money or possibly physically harmful. (GET, CBT to get them to do things they aren’t physically capable of doing).

  • KL

    Chronic fatigue is a symptom of many diseases, so what they are saying is that people’s personality changes when they get Cancer, AIDS, MS, because they too get chronic fatigue. Really solid bit of research that. Ha! But ME/CFS is not the symptom chronic fatigue, and it will surprise you to know that many people who have it do not have the symptom chronic fatigue. Let’s be honest, these studies were selecting people who have a mood disorder, and excluding those with ME/CFS. It is therefore flawed, and wasted precious funds that should go into understanding the biology of the disease. Much like the funding for stomach ulcers was wasted until scientists started to look at the biological cause, and provided an actual cure.

    99% of doctors will know nothing about ME/CFS, so don’t you think it is about time that serious funding was targeted at biomedical research instead of continuing to leave people suffering and dying from the disease? It’s not like this is a orphan disease, where so few are affected, that serious money cannot be justified. Millions have ME/CFS. It’s not like it is considered to be like hay fever. No, Governments assess that it is as serious as Cancer, or AIDS. So where are the millions of dollars in research funding? Why does this disease get less than hay fever? Could it be that it will cost millions, even billions to sort out, and Governments are tying to keep it cheap by producing this type of trash research? And it’s working too, because you just feel for it. But what if you catch it next? Where will your power be then, now they are deciding that you have a personality disorder? Ain’t it cheap!

    Now check out XMRV, and really take a look at what is happening there.

    • http://brainblogger.com Julnar Issa, BS

      Hi KL,
      You are exactly right that chronic fatigue is a symptom of many diseases. The researchers did separate the study participants into groups. They had a group of people who met criteria for chronic fatigue syndrome and people who, while they did not meet criteria for CFS, did experience chronic feelings of fatigue. People who were placed in the chronic fatigue without CFS group had to have medically unexplained chronic fatigue meaning that they did not have cancer, AIDS, MS, etc.

      As I explained to Andrea above, not everyone with CFS has the same symptoms. It is not even known if everyone with CFS has the same illness or if there are two or more illnesses that have similar symptoms and that meet the current criteria being using to define CFS. For the purposes of this study, the researchers only included CFS sufferers who did experience fatigue.

      As I explained to Allspice, the researchers used random digit dialing to phone-screen 12,000 residences in Georgia. They ended up interviewing 5,623 people between the ages of 15-93. Based on these interviews, they determined if people met criteria for chronic fatigue or for being well. If you want to read the details of the study, follow this link: http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000319312. Participants were only interviewed via phone then completed a clinical assessment.

      I agree that funding should go into educating doctors about what is currently known about CFS. There isn’t much doctors can do to help a patient if they don’t aren’t able to even figure out what is happening to their patients.

      Researchers have studying the XMRV retrovirus. It is not a subject they have dropped. Scientists are approaching the problem from both the biomedical and the psychological perspective in hopes of finding treatments that both directly target the body and that help strengthen the body through stress-coping mechanisms.

      • KL

        Hi Julnar Issa

        The study you refer to used the Empiric definition 2005. You will now argue that it is the same as the Fukuda 1994 definition, but clearly it cannot be, if the prevalence rates for CFS have increased more than ten fold. Unless you are saying that somehow more people have become infected in that time? Furthermore the Empiric definition excludes most people who met the Fukuda definition. So when you claim that this study is looking at CFS – what are you actually talking about? Because it is not the disease that all the patients and careers here are talking about.

        Now, the CDC states that when a patient has neurological signs and symptoms, then it cannot be CFS. Well again, that is what the patients and careers here are talking about. We do have neurological signs and symptoms. Doctors can see them, and admit to seeing them frequently, but the people creating this type of trash, amazingly pretend not to have seen them, or to have read studies on them, and then don’t allow them into their personality studies. How very convenient.

        So in this study they were really looking at Jo Blogs on the street, and dividing them up by a very weak set of criteria. Oh, and people with CFS, according to the CDC, are not meant to have cancer, AIDS, MS, etc. either. But we do magically seem to get higher rates of certain cancers. Funny that. Wonder why? I guess we wont know if we choose to educate doctors on what we don’t know, as opposed to funding biomedical research and then training doctors in what has been discovered. But this of course would be to ignore all the numerous things that biomedical research has revealed already. Like mitochondria disfunction, or vascular dysfunction, evidence of persistent viruses, abnormal response to exercise. I could go on and on. But this small group of psyches you seem to think are making scientific breakthroughs will continue to pretend this research doesn’t exist, and build models that don’t account for it. While we remain ignored, and loose our lives to this disease.

        This argument of not knowing if all patients have the same symptoms is moot if they are not being studied in the first place. Secondly, how will subgroups ever be discovered if funding of biomedical research is not forthcoming? Trying to define a disease by one symptom is barmy to say the least. If this is really what should happen, then we should destroy other disease to include them in this study of fatigue. For example, Parkinson’s, MS. We don’t know the cause of them either, and like them we have plenty of evidence of the biomedical dysfunction in this disease (not the Empiric definition) But that’s not going to happen, because this small group of psychs can’t get their hands on them now, because there would be a public outcry. Unfortunately for this disease, it’s cheaper for Government’s to help the psychs out, and pretend that somehow sufferers are to blame. So now patients not only have to deal with the disease, but also prejudice and bigotry. Which has also seeped into those doing these dud studies.

        To suggest that random digit dialling is an acceptable way to choose patients is laughable. You should be studying the sickest patients if you are serious about making any discoveries. But again this is moot, because it is not the disease they are studying.

        It is also blatantly not true that doctors cannot treat these patients. There are already drugs that can be used to alleviate many of the biological abnormalities, for instance reactivating viruses, or POTS. It is totally unethical that this is not happening. What a disgrace. How dare they deny such sick people what is available to any other human being on the planet. Even the poorest in the world have a better chance of obtaining treatment. I don’t know how you can possible side with these disgusting abusive bullies.

        As for XMRV, which isn’t even needed to support the reams of what we already know about this disease. We will know a great deal more than yourself about this research and how it is developing, or being sniffled. It’s in our interest to do so, but not in the interest of the psychs. And it is looking very promising.

        I will leave you with this thought. They used to say that stomach ulcers we caused by stress, some dub, uneducated doctors even today will try and claim the same thing. There was a billion dollar drug industry built around that crappy claim, all attempting to lower the acidity of the stomach. Now through actual research, the biomedical type, we know it’s a bacteria, and is treated very quickly. Finally people don’t have to have hugh chunks of their insides removed, because some twit thinks it will help them. Now we can use the biological knowledge of the condition to treat it. It will be the same with most things, and it’s time to ditch this tripe.

  • Dave

    Stupid!!!

  • Cai Davies

    What a complete nonsense in the 6 years I have had M.E I had tried every psychological trick in the book, nothing worked! Chronic fatigue syndrome is probably caused by viruses and as stated by the guys above.. Still it need a heck of allot of research. I would like to say that there IS only ONE chronic fatigue syndrome and there is NO other illness like it nor chronic fatigue “like” illness, And as personality disorders ..More introvert? Pfft obviously you are gonna be if some individuals have lost there jobs because of the illness or housebound, lost a few friends cos of it.. Losing everything that made you to have confidence before…your gonna become less introverted because you’ve lost confidence no need for rocket scientist to know this.. Chronic Fatigue Syndrome is a REAL physical disease it’s time for it to depart from this kind place..

    • Anonymous

      Hi Cai,
      You are right that a lot more research needs to be done on chronic fatigue syndrome. I think everyone agrees on that. There is recent research connecting the retrovirus XMRV with CFS as someone mentioned above. There is also research indicating that there are many patients who do not have the retrovirus: http://www.ncbi.nlm.nih.gov/pubmed/20066031. Ultimately, the research on what factor or combination of factors are causing CFS is very much still inconclusive.

      All the research done on personality and chronic fatigue is not denying that a virus or any other biological factor is causing the chronic fatigue. Instead, it is looking more at the mind-body connection. It is well established that chronic stress leads the body to be more vulnerable to illnesses in the long run. This suggests that people whose bodies are worn from stress may not be able to fight the virus or other factors causing CFS in the same way that someone else’s body might, allowing the virus to take over their bodies and turn into a chronic illness. This would explain why some people get CFS while others don’t even if both are exposed to the same virus.

      Although you did not experience any relief from cognitive behavioral therapy or other psychological tricks, I have heard of CFS sufferers who said they did experience relief from psychological therapies. There is also research indicating that cognitive behavioral therapy can work for some people. Here is an article discussing some treatments that have been found to be effective for CFS: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2907931/?tool=pubmed. Everyone is different, though. What doesn’t work for one person may still work for another.

      I also agree that pretty much anyone is going to become more introverted when they are experiencing illness and disabling fatigue. I imagine that anyone would find that to be the case when they note their feeling and behaviors when ill or fatigued.

      • http://brainblogger.com Julnar Issa, BS

        Sorry, I forgot to log in when I wrote the above.

        • KAL

          It is probably worth mentioning that infection with a pathogen is also considered a form of stress. Researcher and ME/CFS expert Ron Glaser has done some very interesting research exploring the mind/body connection between ME/CFS, stress, and viral infection.

  • Don

    I hope no taxpayer dollars were spent on this poorly designed study. Look at the personalities of ME/CFS patients before and after getting sick compared healthy controls and you may have something of interest. A few people do recover from this illness and you may learn something here. If doing the same thing over and over expecting a different outcome is the definition of insanity then the psychiatric industry should stay busy looking at each other. Time and again throughout the short history of this so called science they have attempted to explain away real disease as mental illness only to later be proven wrong. We have shut down the snake pits, stopped electrocution and lobotomies so we are making progress against this mentality but a close eye needs to be kept to keep this profession from stepping backwards. Malpractice suits may also be a good deterrent. If an illness goes untreatet due to the patient being convinced their disease is just a “personality disorder” then you certainly have done harm.

    • http://brainblogger.com Julnar Issa, BS

      Hi Don,
      As I stated in my comment to Allspice above, I do not believe the researchers were trying to say that chronic fatigue syndrome patients are mentally ill. They are saying that they found that there are a greater percentage of people with chronic stress or other psychological difficulties in the population of chronic fatigue sufferers than in the population of people without chronic fatigue.

      There have been studies in the past showing that cognitive behavioral therapy and graded exercise therapy help some chronic fatigue syndrome patients. This may be because of the mind-body connection. It is well-established that chronic stress makes people more vulnerable to physical illness. Certain psychological therapies, on the other hand, may strengthen the body’s physical systems.

      One purpose of the study is to help determine what kinds of stressors or psychological problems people with chronic fatigue have in order to determine if different people with chronic fatigue might benefit from different types of treatments as well as to determine possible risk factors for developing chronic fatigue. However, this research is merely correlational and still has a long way to go.

    • Anonymous

      almost all treatments will work for one and not the next guy, even when your on meds it will change over a year or less it depends on how sick you are

    • _beltie

      Mental illness is REAL disease = dis ease.
      To a sufferer their thoughts and feelings are as real as yours, and like yours, have neuro-physiological and endocrine correlates.

      CFS sufferers (I was one) are passing the cruelty done to them by CFS-deniers or CFS=psych. contingent, by doing to the mentally ill what has been done to them.

      You ask for compassion, yes you deserve it, but please give it to others who suffer too.

      • Willow

        hi Beltie,

        Most people with ME or CFS do recognize that people with psychiatric-classified disease have real, biomedical diseases and suffer unfair stigma.

        The “mental illness” that we say is not being treated as a real illness is the “you just need to get out more” stigma kind, as if we had cabin fever or boredom or some such thing that truly isn’t a biomedical disease. Sadly, this happens to real psychiatric-classified patients, too, I know (thus unfairly treating these diseases as if unreal also). Psychiatric-classified diseases have also gotten the short end of the stick because only a limited scope of research has been done and these diseases remain only partially treatable.

        Another problem we face is that lots of people with fatigue from various undiagnosed causes, from lupus to major depressive disorder, are lumped together and called CFS patients and studied as if that would tell us something about CFS. Because MDD also doesn’t have an approved diagnostic marker, and because we get so much “must be depression” (when many of us aren’t depressed, but rather have muscle weakness and orthostatic intolerance and other such things that make activity difficult), and because of the obvious bias of certain investigators, it’s easy for some to assume there could be lots of MDD patients in the “CFS” groups when we know the researchers aren’t taking care to diagnose carefully. It’s not that MDD isn’t important–it is, and needs to be studied more thoroughly than it has so far–but studying MDD should be done to learn about MDD, not to learn about ME/CFS. Obviously (though it doesn’t seem so obvious to everyone, looking at how research is being done) we need to study ME and CFS patients to learn about ME and CFS.

        all the best,
        Willow

        • _willow

          Hi Willow, I take your points and totally understand your frustration. I have been there myself. I am addressing the researchers with dodgy research models as much as the sufferers. I think it’s helpful to remember, and to remind them that diabetes, Parkinson’s and stomach ulcers were once thought to be “all in the mind”. It’s the sad legacy of the Descartian mind-body split is so deeply rooted in our culture. Thankfully it is now slowly being discredited. Also a lot of people including medics use the word psychological when they mean neurological.
          Good luck, wishing you health
          _beltie

  • Anonymous

    It obvious to tell when somebody writes on this topic and they’re speaking bullshit. They call cfs patients chronic fatigue patients. Stop trying to justify this shit!

    • http://brainblogger.com Julnar Issa, BS

      I don’t call them chronic fatigue syndrome patients because they did not meet diagnostic criteria for CFS. They were merely people who experienced chronic fatigue in their daily lives. Some of the people in the study, however, did meet criteria for CFS.

      • Willow

        You did talk about both CFS and CF. Some of the people in your citations use the terms interchangeably, since they do not see a consequential difference between CFS, CF, burnout, ideopathic fatigue, and psychiatric fatigue. I could not tell from your article whether you were following this “Wessely school” convention, but it appeared that this might be the case.

        • http://brainblogger.com Julnar Issa, BS

          I wasn’t paying attention to the schools of thought of the particular researchers of the studies when I wrote the article. The results are purely data-based. However, the way in which they define chronic fatigue and chronic fatigue syndrome does affect the results that they get. If you haven’t already read it and would like to read the research publication in full, it is here: http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000319312.
          Thanks for your comments.

    • Anonymous

      you are just plain ignorant as to what s happening

  • Willow

    All this has been very well disproved by better studies. People should not waste their time and resources maligning patients in studies like these, and waste the time and resources of scientist who have to correct them by publishing counter-balancing studies in the literature. Please see:

    Eleanor Stein, MD, FRCP(C), “Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists” http://www.cfids-cab.org/MESA/Stein.pdf
    [Explains how assessments designed for physiologically healthy people are used to sort ME/CFS patients inappropriately into psychosis categories, and what psychological conditions are actually expected.]

    Trigwell et al. “‘Abnormal’ illness behaviour in chronic fatigue syndrome and multiple sclerosis.” BMJ. 1995 Jul 1;311(6996):15-8.
    Scores on the illness behaviour questionnaire cannot be taken as evidence that chronic fatigue syndrome is a variety of abnormal illness behaviour. [any physiologically ill person, such as the MS controls in this paper, would produce the same result]

    Fossey et al. “Sleep quality and psychological adjustment in chronic fatigue syndrome.” J Behav Med. 2004 Dec;27(6):581-605. PMID: 15669445
    Narcolepsy and CFS participants were very similar on psychological adjustment… Our data suggest that primary sleep disorders in individuals with CFS are underdiagnosed in primary care settings and that the psychological disturbances seen in CFS may well be the result of living with a chronic illness that is poorly recognized or understood.

    Courjaret J, Schotte CK, Wijnants H, Moorkens G, Cosyns P. (U Hosp Antwerp) “Chronic fatigue syndrome and DSM-IV personality disorders.” J Psychosom Res. 2009 Jan;66(1):13-20. Epub 2008 Nov 22. PMID: 19073288.
    RESULTS: The results indicate a striking lack of statistical significant differences between the CFS sample and the Flemish control group at the level of dimensional Trait scores, number of criteria, and prevalence rates of personality disorder diagnoses.

    Taylor RR, Jason LA. “Sexual abuse, physical abuse, chronic fatigue, and chronic fatigue syndrome: a community-based study.” J Nerv Ment Dis. 2001 Oct;189(10):709-15.
    Compared with healthy controls, childhood sexual abuse was significantly more likely to be associated with outcomes of idiopathic chronic fatigue, chronic fatigue explained by a psychiatric condition, and chronic fatigue explained by a medical condition. None of the abuse history types were significant predictors of chronic fatigue syndrome. A closer examination of individuals in the chronic fatigue syndrome group revealed that significantly fewer individuals with CFS reported abuse as compared with those who did not.

    Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. “Illness experience, depression, and anxiety in chronic fatigue syndrome.” J Psychosom Res. 2002 Jun;52(6):461-5. PMID: 12069870
    Lack of illness legitimization ranked high as a source of dissatisfaction for CFS patients, and it may aggravate psychiatric morbidity. Many CFS patients believed that staying within what they felt to be their physical limits would improve their condition. This belief, and possibly an accompanying sense of control over their symptoms, may alleviate psychiatric morbidity.

    Brown MM, Brown AA, Jason LA. “Illness duration and coping style in chronic fatigue syndrome.” Psychol Rep. 2010 Apr;106(2):383-93. PMID: 20524538
    A sample of patients with chronic fatigue syndrome was recruited to assess coping strategies and illness duration. It was hypothesized that adaptive coping strategies would be higher among those with longer illness duration. Those in the longer illness duration group reported higher use of active coping, positive reframing, planning, and acceptance, and lower use of behavioral disengagement than those in the shorter illness duration group. No significant differences were found between the two illness duration groups for physical impairment or symptom severity, but the long duration group revealed a lower percentage of participants who were working than the short duration group. These findings suggest that individuals with longer or shorter duration of the illness have differences in coping styles but not differences in physical impairment or symptom severity.

    Jason LA, Najar N, Porter N, Reh C. “Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition”. J Disability Policy Studies. September 2009 vol. 20 no. 2 93-100. http://www.cfids-cab.org/MESA/Jason-10.pdf
    The authors’ research group proposes that selection criteria for CFS cases have broadened and provides data indicating 38% of those with a Major Depressive Disorder were misclassified as having CFS under the new CDC empirical case definition.

    Merz S. [Chronic fatigue syndrome. More and more differential diagnoses suggest a new view of this syndrome]. Lakartidningen. 2002 Aug 22;99(34):3282-7. PMID: 12362846
    Several CFS definitions have been developed over the years, and it is common for investigators to erroneously compare studies based on different definitions, which nevertheless all use the term CFS. Much of our “understanding” of CFS does not apply to the small group of patients who fulfill the current (1994) CDC definition.

    Jason LA, Helgerson J, Torres-Harding SR, et al. “Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability.” Eval Health Prof. 2003 Mar;26(1):3-22. PMID: 12629919

    Note: even the more specific of the commonly used definitions, Fukuda (1994 CDC), does not make the hallmarks of ME, such as post-exertional malaise, required as diagnostic/selection criteria, so one cannot tell how many of the study participants have ME (myaglic encephalomyelitis, the neuro-immune disease the first CFS description was attempting to describe).

    Jason LA, Evans M, et al. “The Development of a Revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Case Definition,” American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010

    • Willow

      I repeated this info without the negative comments at the beginning (and without the links, as I was hoping that would make it post straightaway), so you may take down this comment if you like.

  • Willow

    Please also note these replicated findings:

    Cook DB, O’Connor PJ, Lange G, Steffener J. “Functional neuroimaging correlates of mental fatigue induced by cognition among chronic fatigue syndrome patients and controls.” Neuroimage. 2007 May 15;36(1):108-22. Epub 2007 Mar 3.PMID: 17408973

    Lange G, DeLuca J, Maldjian JA, Lee H, Tiersky LA, Natelson BH. “Brain MRI abnormalities exist in a subset of patients with chronic fatigue syndrome.” J Neurol Sci. 1999 Dec 1;171(1):3-7. PMID: 10567042

    Fletcher MA, Zeng XR, Maher K, et al. “Biomarkers in chronic fatigue syndrome: evaluation of natural killer cell function and dipeptidyl peptidase IV/CD26.” PLoS One. 2010 May 25;5(5):e10817. PMID: 20520837

    Jammes Y, Steinberg JG, et al. “Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses,” J Intern Med. 2009 Aug;266(2):196-206. Epub 2009 May 19. PMID: 19457057

    Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH. “Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome.” Am J Med Sci. 2003 Aug;326(2):55-60. PMID: 12920435

    Siemionow V, Fang Y, Calabrese L, Sahgal V, Yue GH. “Altered central nervous system signal during motor performance in chronic fatigue syndrome.” Clin Neurophysiol. 2004 Oct;115(10):2372-81.PMID: 15351380

    Milhaylova I, et al. “Decreased Expression of CD69 in CFS in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells.” Neuro Endocrin Lett. 2007 Aug;28(4):477-83. PMID: 17693977

    Light AR, et al, “Moderate Exercise Increases Expression for Sensory, Adrenergic, and Immune Genes in Chronic Fatigue Syndrome Patients But Not in Normal Subjects,” J Pain, 2009 Jul 30. [Epub ahead of print] PMID: 19647494

    Hollingsworth KG, Jones DE, Taylor R, Blamire AM, Newton JL. “Impaired cardiovascular response to standing in chronic fatigue syndrome.” Eur J Clin Invest. 2010 Jul;40(7):608-15. Epub 2010 May 23. PMID: 20497461

    Meeus M, Mistiaen W, Lambrecht L, Nijs J. “Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue?” Anticancer Res. 2009 Nov;29(11):4717-26. Review. PMID: 20032425

    Whistler T, Jones JF, Unger ER, Vernon SD. “Exercise responsive genes measured in peripheral blood of women with chronic fatigue syndrome and matched control subjects,” BMC Physiol. 2005 Mar 24;5(1):5. PMID: 15790422

    Sorensen B, et al. “Transcriptional control of complement activation in an exercise model of chronic fatigue syndrome.” Mol Med. 2009 Jan-Feb;15(1-2):34-42. Epub 2008 Nov 10. PMID: 19015737.

    Pietrangelo T, Toniolo L, et al. “Functional characterization of muscle fibres from patients with chronic fatigue syndrome: case-control study,” Int J Immunopathol Pharmacol. 2009 Apr-Jun;22(2):427-36. PMID: 19505395

    Lo S, Komaroff A, Alter H. et al. “Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and in healthy blood donors.” PNAS 2010 Sep 7;107(36):15874-9. Epub 2010 Aug 23. PMID: 20798047

    Lange G, DeLuca J, Maldjian JA, Lee H, Tiersky LA, Natelson BH. “Brain MRI abnormalities exist in a subset of patients with chronic fatigue syndrome.” J Neurol Sci. 1999 Dec 1;171(1):3-7. PMID: 10567042

    VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR. “Postexertional malaise in women with chronic fatigue syndrome.” J Womens Health (Larchmt). 2010 Feb;19(2):239-44. PMID: 20095909

    Hoad A, Spickett G, Elliott J, Newton J. “Postural orthostatic tachycardia syndrome is an under-recognized condition in chronic fatigue syndrome.” QJM. 2008 Dec;101(12):961-5. Epub 2008 Sep 19.PMID: 18805903

    Jason L, Benton M, Torres-Harding S, Muldowney K. “The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS.” Patient Educ Couns. 2009 Nov;77(2):237-41. Epub 2009 Apr 8. PMID: 19356884

    Guilleminault C, Poyares D, Rosa A, Kirisoglu C, Almeida T, Lopes MC. “Chronic fatigue, unrefreshing sleep and nocturnal polysomnography,” Sleep Med. 2006 Sep;7(6):513-20. Epub 2006 Aug 24. PMID: 16934523

    Maes M, Twisk FN. “Chronic fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways.” BMC Med. 2010 Jun 15;8:35. PMID: 20550693

    “ME/CFS: A Clinical Case Definition [abridged version of the 2003 Canadian Clinical Case Definition]”
    http://cfids-cab.org/MESA/me_overview.pdf

    Spotila J. “Post-Exertional Malaise: Perception and Reality.” http://www.cfids.org/cfidslink/2010/080402.asp Review.

  • Willow

    Would you find it appropriate to seek a correlation between personality and multiple sclerosis, Guillian-barre syndrome, Lupus, Lambert-Eaton syndrome, cancer, or Myasthenia Gravis?

    I thought not.

    It’s similarly inappropriate to seek a correlation between personality and ME/CFS. It’s insulting and degrading, and it contributes to the difficulty patients experience in obtaining appropriate and compassionate medical treatment.

    • Willow

      Even if you intended to differentiate between CF and CFS, many people are unable/unwilling to make such differentiation. Such studies are certainly harmful to ME/CFS patients, and likely harmful to other fatigued patients as well.

    • http://brainblogger.com Julnar Issa, BS

      Hi Willow,
      I do not believe that the researchers produced this research with the intent of insulting or degrading anyone. Instead, they were seeking a better understanding of the sorts of chronic stressors that people with chronic fatigue and chronic fatigue syndrome face in order to help develop better treatments for sufferers. The exact cause of CFS is still not known so determining proper treatments is still difficult. Research has found that graded exercise therapy and cognitive behavioral therapy may help some people. This extensive amount of research on this subject could be dropped, however, it would leave many people who could be gaining at least some relief through treatments would be without any sort of treatment until something else comes along.

      Furthermore, traits like perfectionism, introversion, neuroticism, etc. are not necessarily negative traits although they do often make a person’s life more difficult. All personality traits have both positive and negative aspects to them. Traits like extraversion, optimism, etc. can also been seen in a negative light although they aren’t normally seen that way in our culture.

      I also do not believe that it is anyone’s fault if they are suffering from chronic stress, maladaptive traits, or any sort of mental illness. To me it is sad that someone should be degraded if they have any of these problems or personality traits.

      • KL

        But for the overwhelming majority of ME/CFIDS people, CBT/GET either have no effect or make them worse. It is barbaric to force this upon them, because they clearly have a serious disease that is made worse by these fad treatments. In the UK, NICE now claim that CBT/GET are only supportive, so they cannot really therefore be called a treatment anyway. It is a political football used to deny these people their basic human rights.

        Look at GET. It is dangerous for these patients. It has be proven again and again. The biomedical research shows that they have multiple abnormalities in areas of the body responsible for energy production and usage. How can anyone justify it’s use.

        CBT on the other hand makes not a blind bit of difference if the reason you cannot stand up is because of the disease, and not because you do not have a disease. And research has shown this repeatedly. Stop helping these bigots!

      • Andrew

        The problem with these assertions about stress is they are non-scientific. They are not based on longitudinal studies that measure stress response (ie cortisol etc) levels at the onset of the disease, nor are they based on demonstrations on how these stress levels lead to a CFS like disease state. They must explain the specific immunological profiles shown in the literature – research by De Meirlier, Jason, Light amongst many others. Shaheen Lakhan has already reviewed some of this research in the review article he recently published.

        Of course these abnormalities tend to only show up when using rarer cohort definitions that have incidence of less than 0.5%. Rather than the CDC ‘empirical’ or Oxford definitions that have produced estimates of over 2%. The difference may well be measuring apples and oranges.

        (In a similar vein, any suggestion personality correlations with disease ultimately requires testing before and during onset of the disease itself if cause and effect is to be demonstrated.)

        MDD etc on the other hand is often associated with elevated reported stress, with elevated cortisol levels to boot.

        CFS on the other hand is associated with mildly low to normal cortisol. Now some second-rate psychiatrists that don’t understand how to do a controlled study have suggested this is somehow due to burnout of the gland. Yet the same reductions in cortisol response can be measured in those who have a low stress environment. The problem with these saliva cortisol studies is they don’t control for the day of the week that the testing is done (or explicitly tested on weekdays!). And since a majority of CFS patients are not working, the result may simply be due to this lower stress environment. Indeed there have been more than a few studies that measured a similar reduction in cortisol in healthy individuals between workdays and days off.

    • Willow

      Julnar,
      Association of a disease with stress, maladaptive traits, and the like tends to prevent some doctors from performing in-depth investigations into medical causations of symptoms such as shortness of breath, muscle weakness, and the like, which often have biomedical causations. I frankly don’t care whether any insult is intended. The effect is the same regardless of intent.

      Fatigue patients, ME/CFS or not, are regularly patronized by their physicians from whom they are seeking medical help, by reason that the physician believes the patient is suffering from need of a new hairstyle, primary deconditioning, or lack of positive thinking. I am not making any of this up. These are obviously not the cause of this disease (although some general fatigue patients may benefit from activity, and depressed patients usually will as well).

      CBT/GET is much overrated. GET can help some fatigued people, usually to feel “a little better,” but it is harmful for ME/CFS because of the pathologies involved (pathologically strong and lengthy cellular oxidative stress; pathological immune response to exertion; pathologically quick depletion and pathological failure to restore cellular energy; sometimes cardiac problems; often hypovalemic problems; etc.).

      See:
      Twisk FN, Maes M. “A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS.” Neuro Endocrinol Lett. 2009;30(3):284-99. Review.PMID: 19855350

      CBT has not been shown to have any objective benefit over the long term, although when properly used (improper use attempts to convince the patient s/he is not actually sick), coping and pacing skills can be of benefit.

      See: Carruthers et al. “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols” J CFS, Vol. 11(1) 2003, pp. 7-115 (pp 46-49).
      Explains that most CBT/GET studies are done on fatigued patients using the name but not any specific criteria for CFS, and that results are not as uniformly or as strongly beneficial as reported, and refusal and drop-out rates may be very high. Assessment is chiefly subjective. Some CF patients may see modest improvement; but ME/CFS patients report adverse effects, consistent with the definitions and clinical and research findings.

      Price JR, Mitchell E, Tidy E, Hunot V. “Cognitive behaviour therapy for chronic fatigue syndrome in adults.” Cochrane Database Syst Rev. 2008 Jul 16;(3):CD001027. Review.PMID: 18646067
      As you can see, it claims effectiveness based on “symptoms of fatigue,” a purely subjective measure, and states, “The evidence base at follow-up is limited to a small group of studies with inconsistent findings. There is a lack of evidence on the comparative effectiveness of CBT alone or in combination with other treatments, and further studies are required to inform the development of effective treatment programmes for people with CFS.”

      ME/CFS is no more a disease of unknown etiology than is Guillian-barre syndrome. See the research above for a small sample of pathology. Because ME/CFS is highly politicized and because there are “definitions” based on the single symptom of fatigue, the pathologies are not well accepted (since they do not extend to the patients with, for example, major depressive disorder, who have been misclassified as CFS patients).

      There are actually a lot of things doctors can do to relieve symptoms and perhaps even to address underlying pathologies, without resorting to treating purported personality traits (which, again, have been disproven in CFS). Dr. de Meirleir and Dr. Lerner both have models and protocols to this end. It’s still possible that XMRV could be the answer as well (it’s difficult to find, research is in the early stages, and researchers are using different sorts of patients under the name of CFS, all of which could contribute to the inconsistent findings… at the XMRV International conference, de Meirlier and Invest in ME/WPI are reporting positive findings in Europe, by the way, although these are not yet published).

      I’m not sure what treatment is related to personality disorder? If there is such, the research you refer to needs to be more specific about what patients it applies to. CF and CFS is way too broad a sample. At the moment, such studies are seriously hurting people who should have other treatment options available, but these options are unconscionably denied because of the unscientific psychogenic/psychoperpetuative models of CFS, of which the personality trait and maladaptive coping opinions are important components.

      You mentioned that you had not given any consideration to the various schools of thought on CFS. It might be a good time to start learning about that. The Wessely school includes Wessely, White, Sharpe, Reeves, and others, and these ignore or make light of biomedical findings, preferring to believe that CF and CFS are caused by improper focus on one’s symptoms or body processes; being too stupid to recognize whether a symptom is normal or pathological; being on the one hand too stupid to realize that one shouldn’t go from being sick (as with the flu) straight to running marathons, and on the other hand too stupid to realize that physical activity doesn’t hurt a healthy person (which they believe these patients basically are). And, again, that maladaptive coping, escape avoidance behaviors, the blaming of symptoms on physical disease, and personality traits play roles. Integral to this model is the opinion that CFS is an illness behavior but not a true disease.

      The biomedical school recognizes that ME/CFS is a neuro-immune disease with objective biological abnormalities such as low function of NK cells, abnormal activation of T cells, bioenergetic muscle cell dysfunction, lesions on the brain, low oxygen flow in the brain. None of which can be caused by stress or deconditioning. This school includes Dr. Leonard Jason of DePaul University (psychologist), Dr. Anthony Komaroff of Harvard University, Peckerman A, Fletcher M, Light AR, Lerner M, de Meirleir K, Jammes Y, and others.

  • Anonymous

    Ms. Issa – You’ve repeated this thought several times in your responses to various comments: “It is well-established that chronic stress weakens the body’s immune system and makes people vulnerable to physical illness.” And yet, after serious research, I have found NO support for the idea that chronic stress leads to chronic fatigue syndrome when CFS is defined in such a way as to exclude “chronic fatigue” and clinical depression. None. I would challenge you to find that “missing link.” And while you’re at it, take some time to look into how the CDC created the name “chronic fatigue syndrome” to describe an illness that had immune and neurological symptoms and then over the years began using those very symptoms to exclude patients with them from their studies. That is why those of us who are very ill do not trust any study which is not careful in its cohort selection. The studies you based your blog on, and provided links to, are sloppy at best and harmful at worst. If you’re really interested in learning about chronic fatigue syndrome, I would suggest you start with a document that accurately defines CFS here: http://cfids-cab.org/MESA/me_overview.pdf

  • Irene Fuerst

    I hate to contribute to the storm of criticism, but I too thought this was a poor article. The finding that a misunderstood, chronic, disabling condition causes stress is like noting that coffee is stimulant: more of a “duh” moment than an “aha” moment. More interesting would be comparing people with CFS to people with other diseases that cause significant disability.

    • KAL

      There is a difference between a poorly written article and poorly done research. In this particular instance the author’s responses and correct use of research and citation are appropriate and well considered. Disagreement is allowed. :D

      • KL

        A good article will include information on the studies that show this position to be wrong. It will also analyse which version of events is more likely. As so many others have proven here, it is not this research which should be trusted.

  • Willow

    Also, please see:

    Eleanor Stein, MD, FRCP(C), “Assessment and Treatment of Patients with ME/CFS: Clinical Guidelines for Psychiatrists”
    “Rate of psychiatric disorder in ME/CFS similar to other chronic, disabling medical conditions such as RA; abt 30-40% (Thieme et al, 2004; Hickie et al, 1990; Fiedler et al, 1996). Type of questionnare can affect prevalance (50% using DIS vs. 25% using SCID) in ME/CFS populations (Jason et al, 2003); DSMIV is recommended (Spitzer et al, 1992; Williams et al, 1992).

    “Rate of personality disorder is similar to that as the general populations (10%) and lower than in depression (Thieme et al, 2004) (Pepper et al, 1993; Saltzstein et al, 1998; Chubb et al, 1999). There are studies which report higher rates of psychological distress using the MMPI (Blakely et al, 1991) in CFS as compared with healthy controls, however it has been argued that MMPI is not an accurate assessment in people with chronic medical condtions because the items were derived and normed based with physical healthy subjects. When used in cohorts with chornic illness, the physical symptoms load to the ‘hyperchondriasis’ and ‘hysteria’ scales resulting in false positives (Pincus et al, 1986; Goldenberg, 1989).

    “Despite the preponderance of research to the contrary, a group of primarily British psychiatrists continue to publish that ME/CFS is caused and exacerbated by faulty self-perception and avoidance behavior. … [these] are personal opinions of the authors.”

    Trigwell et al. “‘Abnormal’ illness behaviour in chronic fatigue syndrome and multiple sclerosis.” BMJ. 1995 Jul 1;311(6996):15-8.
    “Scores on the illness behaviour questionnaire cannot be taken as evidence that chronic fatigue syndrome is a variety of abnormal illness behaviour.” [any physiologically ill person, such as the MS controls in this paper, would produce the same result]

    Fossey et al. “Sleep quality and psychological adjustment in chronic fatigue syndrome.” J Behav Med. 2004 Dec;27(6):581-605. PMID: 15669445
    “Narcolepsy and CFS participants were very similar on psychological adjustment… Our data suggest that primary sleep disorders in individuals with CFS are underdiagnosed in primary care settings and that the psychological disturbances seen in CFS may well be the result of living with a chronic illness that is poorly recognized or understood.”

    Courjaret J, Schotte CK, Wijnants H, Moorkens G, Cosyns P. (U Hosp Antwerp) “Chronic fatigue syndrome and DSM-IV personality disorders.” J Psychosom Res. 2009 Jan;66(1):13-20. Epub 2008 Nov 22. PMID: 19073288.
    “RESULTS: The results indicate a striking lack of statistical significant differences between the CFS sample and the Flemish control group at the level of dimensional Trait scores, number of criteria, and prevalence rates of personality disorder diagnoses.”

    Taylor RR, Jason LA. “Sexual abuse, physical abuse, chronic fatigue, and chronic fatigue syndrome: a community-based study.” J Nerv Ment Dis. 2001 Oct;189(10):709-15.
    “Compared with healthy controls, childhood sexual abuse was significantly more likely to be associated with outcomes of idiopathic chronic fatigue, chronic fatigue explained by a psychiatric condition, and chronic fatigue explained by a medical condition. None of the abuse history types were significant predictors of chronic fatigue syndrome. A closer examination of individuals in the chronic fatigue syndrome group revealed that significantly fewer individuals with CFS reported abuse as compared with those who did not.”

    Lehman AM, Lehman DR, Hemphill KJ, Mandel DR, Cooper LM. “Illness experience, depression, and anxiety in chronic fatigue syndrome.” J Psychosom Res. 2002 Jun;52(6):461-5. PMID: 12069870
    “Lack of illness legitimization ranked high as a source of dissatisfaction for CFS patients, and it may aggravate psychiatric morbidity. Many CFS patients believed that staying within what they felt to be their physical limits would improve their condition. This belief, and possibly an accompanying sense of control over their symptoms, may alleviate psychiatric morbidity.”

    Brown MM, Brown AA, Jason LA. “Illness duration and coping style in chronic fatigue syndrome.” Psychol Rep. 2010 Apr;106(2):383-93. PMID: 20524538
    “A sample of patients with chronic fatigue syndrome was recruited to assess coping strategies and illness duration. It was hypothesized that adaptive coping strategies would be higher among those with longer illness duration. Those in the longer illness duration group reported higher use of active coping, positive reframing, planning, and acceptance, and lower use of behavioral disengagement than those in the shorter illness duration group. No significant differences were found between the two illness duration groups for physical impairment or symptom severity, but the long duration group revealed a lower percentage of participants who were working than the short duration group. These findings suggest that individuals with longer or shorter duration of the illness have differences in coping styles but not differences in physical impairment or symptom severity.”

    Jason LA, Najar N, Porter N, Reh C. “Evaluating the Centers for Disease Control’s Empirical Chronic Fatigue Syndrome Case Definition”. J Disability Policy Studies. September 2009 vol. 20 no. 2 93-100.
    “The authors’ research group proposes that selection criteria for CFS cases have broadened and provides data indicating 38% of those with a Major Depressive Disorder were misclassified as having CFS under the new CDC empirical case definition.”

    Merz S. [Chronic fatigue syndrome. More and more differential diagnoses suggest a new view of this syndrome]. Lakartidningen. 2002 Aug 22;99(34):3282-7. PMID: 12362846
    “Several CFS definitions have been developed over the years, and it is common for investigators to erroneously compare studies based on different definitions, which nevertheless all use the term CFS. Much of our ‘understanding’ of CFS does not apply to the small group of patients who fulfill the current (1994) CDC definition.”

    Jason LA, Helgerson J, Torres-Harding SR, et al. “Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability.” Eval Health Prof. 2003 Mar;26(1):3-22. PMID: 12629919

    Note: even the more specific of the commonly used definitions, Fukuda (1994 CDC), does not make the hallmarks of ME, such as post-exertional malaise, required as diagnostic/selection criteria, so one cannot tell how many of the study participants have ME (myaglic encephalomyelitis, the neuro-immune disease the first CFS description was attempting to describe).

    Jason LA, Evans M, et al. “The Development of a Revised Canadian Myalgic Encephalomyelitis-Chronic Fatigue Syndrome Case Definition,” American Journal of Biochemistry and Biotechnology 6 (2): 120-135, 2010

  • John

    The OP wrote- “Maladaptive behavior patterns thus may be risk factors for both chronic fatigue and multiple sclerosis”.

    An entirely reasonable alternative to the rather bizarre suggestion above would be that the questionairres used in these studies were unsuitable for use with people suffering from chronic illnesses, as they have a tendency to report finding higher rates of supposed ‘personality disorders’ not only in CFS and MS, but also rheumatoid arthritis as well. If you look at the general types and specific examples of questions asked in these questionairres and apply a modicum of critical thinking, this possibility veers directly towards becoming quite a distinct probability. Questions such as ‘I don’t go out as much’ and ‘I am not as healthy as my friends’ are completely and utterly ridiculous when used in an attempt to claim a person who answers affirmatively, and who is also suffering from a chronic illness, is suffering from a ‘personality disorder’.

    Talk about not seeing the forest for all those goddamn trees!

    “More interesting would be comparing people with CFS to people with other diseases that cause significant disability.”

    Good studies do exactly this, and have found exactly that- that CFS patients answer similarly to MS patients in these types of studies. What a load of rubbish.

  • Caroline H

    These are simply your opinions about CFS and you do not appear to be qualified enough to know the actual facts? However they are out there and I am sure that you know how to conduct a search for them but I will help you anyway. :o) Try this for a starting post – http://www.meassociation.org.uk/ In future, please don’t insult 17 million people (approx) worldwide with this sort of drivel. Thank you.

    • KAL

      Caroline,

      The author is not claiming to be a ME/CFS expert, but is correctly citing authors and studies. As many others have noted in this thread there is other research that does not support the conclusions of the researchers cited.

      • Caroline H

        No problem. I am having a foggy day. :o/ I just get so weary of this fight for recognition that we have a real illness. Makes me a bit defensive.

        • KAL

          Sounds reasonable to me.

          • http://brainblogger.com Julnar Issa, BS

            Caroline,
            Thanks for your honesty. Your feelings are very understandable.

            KAL,
            Thank you for putting that into words so nicely. I am not claiming to be an ME/CFS expert and am glad you recognized that. And, I am merely describing the results of this research study as a writer. Again, thanks for recognizing that as well!

            The advantage of posting something like this is that it does promote a lot of discussion and awareness. My goal in writing this was solely to share knowledge and not to purposely bring harm to anyone.

  • TS

    “Pochoams says:Trying to stigmatize a patient with a chronic illness such as MS or CFS with sentences like: “you are sick because of your personality, is your fault” is really the biggest bullshit you can throw to a patients face, and it is also devastating for the patient.

    Just for you to know, a new human retrovirus called XMRV has been associated to 87% of CFS patients, and is present in 4% of healthy donors.

    Whether XMRV ends up to be the physical cause of CFS or not, what is clear is that CFS patients do have an immune problem that allows XMRV to be present, and immune problem that is far to be related to a personality disorder!”

    I do hope you will take note of the comments this person makes before you write any more complete bollocks about the ‘personalities’ of those with the discrete neurological illness Myalgic Encephalomyelitis, which the self-serving psychiatric profession have renamed ‘CFS’ in order to deliberately muddle it with psychological fatigue.

    WORLD HEALTH ORGANISATION (W.H.O.) DEFINITION OF M.E.

    ” ME/CFS is an acquired organic, pathophysiological, multi-systemic illness that occurs in both sporadic and epidemic forms. Myalgic Encephalomyelitis (ICD 10 G93.3), which includes CFS, is classified as a neurological disease in the World Health Organization’s International Classification of Diseases (ICD). Chronic fatigue must not be confused with ME/CFS because the “fatigue” of ME/CFS represents pathophysiological exhaustion and is only one of many symptoms. Compelling research evidence of physiological and biochemical abnormalities identifies ME/CFS as a distinct, biological clinical disorder.”

    The WHO ICD 10 Classification system is binding and mandatory on the UK & USA Government. They just ignore this.

  • KAL

    The question of how cohorts are defined as having CFS is not insignificant in this case.

    Article citations use at least three different definitions. The Reeves paper referred to uses the “Reeves definition” (Reeves et al 2005)which has been shown to include a significant number of people who do not meet the 1994 Fukada standard (Jason et al 2009) having only an affective disorder. Anytime you mix people who do not have a disease with patients who do it biases the results and conclusions and muddies the waters to say the least. Misattribution can lead to inappropriate treatment and “help” both for patients with organic disease and those who have only affective disorders.

    And while the authors may subscribe to Eysenck’s “Big Five” model not all researchers do. Following Jung’s model it could just as easily be argued that those with a preference for introversion are better able to withstand the social isolation imposed by public and professional stigma as well as the well-documented physical severity of the disease. Regarding the physical abnormalities, please check the peer-reviewed literature as there are too many citations to properly cite here – over 5,000.

    This also raises the question of attribution. Fatigue is a vague word that means something different to all people – being egocentric people tend to define it by their own experiences not necessarily the actual experience of the patient. It is basically the equivalent of a man attempting to give a first person account of childbirth.

    The inappropriate use of instruments such as the Chalder Fatigue Scale, which has a demonstrated ceiling effect, also contributes to the confusion. Post-exertional malaise unrelieved by rest and last 24-hours or longer is not only unusual, it is organically pathological. The failure to differentiate between organic pathology and function may also bias results. As well, the partial use of physical symptoms of disease to define both depression and anxiety can result in misattribution as well. One would also question whether the disorders described were situational or pre-morbid as well as the disease stage of the patient assuming they were actually a ME/CFS patient.

    It is also possible that the maladaptive behaviors or personality traits observed in some ME/CFS patients may arise not from the actual fatigue, however that is defined, but the experience of severe, sustained public stigma. Anxiety and depression would be a normal response not only to having a severe disease, but to the resulting isolation as well.

    And yes, @Don, public tax dollars did fund this study. Funding information can usually be found just before the reference section of any study. Authors are also expected to list conflicts of interest there. The Lancet refers to conflicts of interest as existing if “…authors or their institutions have financial or personal relationships with other people or organisations that could inappropriately influence (bias) their actions. Financial relationships are easily identifiable, but conflicts can also occur because of personal relationships, academic competition, or intellectual passion.”

  • Hanna

    I hope one day people like you will be held liable for the tremendous harm they have caused for so many people.

    Once you or someone you love becomes a “victim” of ME/CFS, you will eat your own words and be ashamed to have provided a platform for this kind of crap.

    This has nothing to do with science.

    • KAL

      Hanna,

      Your strong feelings are very legitimate, but the author of this article is not the same person as the authors of the study which may have done so much harm.

      • Hanna

        KAL, I know, but giving this more space is just as bad!

        • Willow

          She also provided space for a lot of really good information about ME/CFS to be posted in the comments.

          • http://brainblogger.com Julnar Issa, BS

            Hanna and Willow,
            You both make good points, and I don’t know whose side I agree with more. I think it would make a really good discussion: Is it better to share information from studies like this on a blog or is it better to keep them quiet?

            I do hope that a large majority of the people who come to this post are reading the discussions in the comments and not just the article. Comments are one of the great things about a blog.

            And Willow, you have done an awesome job of defending your side :)

          • Willow

            Thanks. :) Compiling the research took me a long time (and I continue to devote as much energy as I can steal away, to updating and expanding it), but I now have it readily available for sharing with the world for educational purposes.

            And thanks for listening, Julnar. That means a lot.

            Hardly anyone is aware of the information in the comments here except a handful of researchers and physicians, about three reporters, and those who have this disease themselves or who have a close family member or friend with this disease.

            So, would you consider writing a new post on the (much-ignored) biomedical aspects of ME/CFS?

            Google seems to like your site (I came here through my Google news notifications). :)

  • gdwllseeker

    I have had CFS for over 30 years. I concur with some of this study. It’s not a condemnation in my opinion, but a clue as to what might help in recovery. Whole health approaches have helped me most – stress reduction and relaxation in particular but not exclusively.

    A Norwegian study has discovered more factors than just personality. But it does list personality traits. I found the “Abstract” and “Background” portions of this summary helpful.

    http://www.behavioralandbrainfunctions.com/content/5/1/10

    I believe that CFS does not have a singular cause and thus ascribes to no magic bullet cure. This study and others may give clues to cause and possible treatment. So far those of us who deal with this disability day to day have to patch together our own best remedies.

    • KL

      Yes, stress doesn’t help when you have a serious illness. But this research is blatantly flawed, and the conclusions back to front. They have had 25 years to make this treatment work, clearly it does not.

      • gdwllseeker

        What treatment are you referring to?

        • KL

          GET and CBT or the like. When they are based on there being nothing wrong with the patient. Obviously 25 years is based on the CFS creation, whereas ME has been highjacked for much longer.

    • Willow

      Stress reduction and relaxation are beneficial to everyone, healthy and sick. This does not actually treat any disease. It makes people feel better by making healthy body processes work better (not by fixing the diseased ones, except in a small subset of cases of depression and anxiety). This is not specific to any particular biomedical disease.

      To associate personality trait or stress with any particular disease is generally unhelpful. However, to associate stress or personality with a hotly contested biomedical disease whose patients are often denied assessment and treatment on the basis that they are falsely thought to merely imagine their debility… is unethical.

      The author of this blog seems to have been unaware of the politicized context of this disease and the fact that treatments are denied on a philosophical basis (rather than a scientific basis such that none are available, which is the PC party line and is false like all the PC party lines) prior to this post, so I am not extending the charge of bad ethics to the blog author.

    • Willow

      Goodwillseeker,

      I looked at that study and I think i know why you like it. Having a serious, largely untreated disease makes it difficult to cope, and you may feel that the article is sympathetic.

      However, the article is arguing that being unable to cope (because of weak genes and whatever else) is causing people to be ill and remain ill. They think bad coping skills cause the immune problems and other components to our disease.

      By this theory, CBT should cure us. Do you think talk therapy and making changes to your behavior (including increasing your activity) and improving your coping skills will make you well? Unless you have some disease other than CFS, it will not and I suspect you already know this and would be upset by the suggestion that this would cure your disease.

      To the general audience: Longitudinal studies show that people who get CFS (and other forms of persistent fatigue lumped in under, say, the Oxford criteria) do not have maladaptive coping skills as a pre-conditioning factor. Rather, people who get CFS are normal, active, well-balanced people. When first noticing the effects of disease, there is not collapse into sickness behavior, but rather a persistence in continuing normal day-to-day activities as much as possible, which indicates perfectly healthy coping skills.

      The person cannot know, at this point, that this is going to be a condition which may last for ever and that rest early on might be curative per Ramsay [an experienced ME clinician and researcher who literally wrote the textbook on ME], especially since doctors today advocate the opposite; the normative coping response, after a decent interval of having had the flu and then realizing this one isn’t going to end, is to get out of bed in the morning and go to work, which is exactly what is done by patients in the early stages of ME/CFS, and this applies to many with CF as well (although CF patients didn’t get their illness after having had flu or other infectious insult).

  • KL

    Hi Julnar Issa

    Please don’t take any of these comments personally. I’m sure no one here wants to make you feel ban or anything. We are only trying to stop this type of research from happening. A very quiet war is going on here, between doctors and patients who support biomedical research into this physical disease, and those who are trying to keep everything cheap and psychosocial. We are fighting for our lives.

    • http://brainblogger.com Julnar Issa, BS

      Hi KL,
      I really appreciate your comment. It is hard not to take the comments personally. I do think a lot of good discussion came out of this. All of you who have posted about all the politics and the “quiet war” going on have brought these issues to the forefront, and I think anybody who visits this page and reads the comments will learn a lot from all this and be well-informed, which is a very good thing.

    • Willow

      I would like to second that comment. Please don’t take it personally. There is a lot of well-deserved indignation towards Reeves, Wessely, & co, but that doesn’t apply to you.

      I can tell from your article and your comments that you were trying to present a balanced approach (you did mention that MS had a similar profile, for instance, and that introversion was likely to be a result, not a cause, of disease) and were simply unaware, previously, of the problems and ethical breaches associated with the study of CF and ME/CFIDS.

      • http://brainblogger.com Julnar Issa, BS

        Thanks, Willow.
        I actually had a question to ask you. In this particular research study do you feel that there were ethical breaches involved? Also, do you feel that the data was accurate given the definition of chronic fatigue and CFS that the researchers chose to use?

        • Willow

          Also, I was answering two questions: was the study accurate, and was it ethical. Part of my statement had to do with accuracy. The numbered answers also had to do with ethics. Ethical concerns merely because they misrepresented facts (i.e. lied), but more importantly because this misrepresentation, as I mentioned, contributes to the lack of proper assessment and treatment of ME/CFS patients. That’s the short answer.

        • KAL

          Julnar,

          I’m weighing in a bit late, but have been on deadline. Misconduct is all in how you define it. The authors of the primary personality study you cited have in the past been reviewed by authors who were simultaneously being funded by them. That would be considered misconduct by most. As well, one of the other reviewers for the paper also wrote an editorial to go with the paper I’m referring to, but did not reveal that he was also a reviewer for the paper as would have been appropriate. As I noted elsewhere on this thread, conflict of interest doesn’t have to be financial. In this case it is what the Lancet editorial staff refers to conflict of interest caused by “intellectual passion.”

          Back in 1988 a group of psychiatric liasions chose a group of diseases considered organic and decided to use them to boost psychiatrist Georg Engel’s 1977 biopsychosocial theory despite the not insubstantial biomedical research already in the literature.

          And if you know your psychiatric history you will know that psychosomatic medicine was considered dead in the water at the time. Through a combination of outspending biomedical research as well as the usual “friends in high places” this relatively small group of psychiatrists managed to thoroughly muddle the literature. Friends outside of the UK and the University of Washington where these researchers were based include researchers at the Department of Defense and the CDC. Meta analysis of ME/CFS is more or less impossible because research on one group cannot be extrapolated to other groups defined by substantially different definitions all using the same umbrella term.

          Is that misconduct? Perhaps not in the traditional thinking, but it can easily be categorized under conflicting intellectual passions. Unfortunately as noted by patients on this thread the result has been a population with a severe immune disease that has been underserved in the extreme. Disagreeing with the biomedical explanation for symptoms is the not the same as the symptoms being “medically unexplained.”

          Several patients have asked if you would write about the biomedical which is not your focus. But, I think if you were to contact neuroscientist Dr. Gundrun Lange; psychologist Dr. Leonard Jason at DePaul University and/or Dr. Fred Friedberg president of the IACFS and one of the authors you cited in your references you would get a much different picture which might balance some of the other research you are more familiar with.

        • Willow

          Someone else showed me how to find a personality test online, and I’d like to say that this should not be used in any seriously ill patients in any case whatsoever. It was developed and normed in healthy people and it cannot be at all accurate in sick people.

          For example, if you ask someone: do other people do more for you than you do for them?
          A debilitated person will have to answer yes, whether or not the person has the character/personality trait of neuroticism (selfishness) or whichever was being measured by that question.

          These would have to be totally rewritten with a debilitated population in mind, in order to be useful for a sick/debilitated cohort. Even if the debilitation were less severe.

          For me, for example, yes, other people do more for me, but it absolutely cuts me up inside that I can’t help people like I used to when I was well. My current actions are based on my physical inabilities, not my personality and character traits and how I think of (or fail to think of) others.

          Similarly, the questions assessing depression should be revised to consider that there might be grief/loss from the disease, and lack of vitality due to physiological causes, and so forth. And anxiety also might be from the disease (especially when untreated, and patients often cannot find a doctor who can properly assess and treat them, and inappropriate treatments and models are offered instead of science-based treatments and models) and does not necessarily represent any actual psychologically-based condition but rather represents a rational response to real world circumstances. In such case, it doesn’t need to be diagnosed as a separate (or as a psychiatric) disorder.

          For the next step in understanding the Wessely school, see:
          http://www.satori-5.co.uk/word_articles/me_cfs/prof_hooper_3.html
          The Mental Health Movement: Persecution of Patients?
          Document prepared for the Countess of Mar by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, in collaboration with members of the ME community, Department of Life Sciences, University of Sunderland

          Although this report is prepared for and presented in Britain, the Wessely school and the NICE guidelines have considerable influence in America and around the world. The world is beginning to wake up to the reality, but this is a slow process and needs considerable stimulation. Although science apparently has the attention of the NIH, the CDC is as stiff-necked as ever, and most physicians and the social services are as misinformed as ever.

          Meanwhile, patients are suffering.

      • Willow

        Yes, there were ethical breaches in that

        1) they used the title of CFS for their patient population, which disease title was assigned to patients who clearly had myalgic encephalomyelitis (ME, an infectious neuroimmune disease), yet they studied patients who were fatigued (and some who may have been not actually fatigued but depressed) for various reasons, few of whom have CFS by any specific definition (and even with a reasonably specific definition for CFS, only a portion of those would have ME). Furthermore, these authors are expressing suspicion of signs and symptoms of ME/CFS which do not fit their opinion of CFS as a psychotic disorder; see the Switzer et al. study (of which Reeves was an author) where they failed to find XMRV in an Empiric inclusion cohort and expressed suspicion that symptoms such as tender lymphs (!), balance issues, ataxia, and such would likely indicate some other disease.

        2) they claim to have used the Fukuda definition, but this is a false claim. They used the Empirical criteria, which is not the same at all. It uses the framework of the Fukuda but destroys the specificity of the requirements. (Whether or not this was intentional, it has this effect; this has been demonstrated by research which the authors have ignored; this has been demonstrated by their own research where they have noticed “matching was not maintained” between patients and controls, because the people they identified as having “CFS” initially do not necessarily have it later… i.e. people change from time to time whether they have “CFS” or “ISF”, yet other studies consistently rate the recovery from ME/CFS to be 0-8%, so maintaining matching should not be a problem when the criterion used is valid)

        3) Rather than studying personality traits in disease in general and how these come about in diseased populations, how they can be useful (you mentioned all personality traits have positive aspects), and how the patients can be helped… they have targeted a particular disease to associate with personality disorder and maladaption. While some people, such as yourself, do not blame others for having such traits, this is not the response of the general public or of physicians and researchers in general (as well as social services personnel). General response is to assume that the named disease (whether or not the name is appropriately applied) is a bunch of whiners and fakers. Again, this is detrimental both to the progress of research, and to the assessment and treatment of individual patients.

        4) Rather than compare ill patients to similarly ill patients, they have compared ill patients to healthy patients.

        I’m a biologist, not a psychologist, so I am not familiar with some of the surveys they mentioned in this study to detect psychosis. However, I would strongly suspect that the instruments they used would have a similar effect to the ones mentioned in Stein, such that the fact of having a disease sorts one into the categories of paranoid and avoidant, so one is wrongly classified as having a personality disorder merely because one is sick when the assessor expects one to be physiologically well but somatizing.

        It is hardly surprising that a cohort of people with various depressive conditions and other causes of fatigue have at least one item from a list including depression and avoidance. Wessely school psychiatrists love to say that people who have CFS (who have actual physical weakness) are displaying escape-avoidance behaviors by being disabled.

        So, in my opinion, it’s probably not valid even for the non-CFS group studied. The facts that depressed people have depression, and tired people don’t engage in as much activity… is not worth mentioning, much less spending resources on to study.

        If there are some genuine neurotic people in that cohort (as is likely just from the prevalence in the general population), they can study those separately under their own disorder name, for the purpose of understanding and helping them. Perhaps some such study can reduce or eliminate the stigma of these labels.

        Back to the study at hand, it’s bad form to study these traits under the name of other diseases. Especially one so maligned as ME/CFS, at which point it becomes bad ethics as well, because it’s contributing to the mistreatment of this disease (as well as other diseases misclassified as somatization disorders and ideopathic fatigue) and these patients.

      • Willow

        Also, something I couldn’t figure out how to put into words previously (brain fog), is that this cohort is a random, unreproducible conglomeration of varied conditions. There is no unifying disease or other characteristic (the symptom of fatigue or fatigue and depression are not unifying, since “fatigue” has multiple meanings and multiple causations, and “depression” likewise has multiple facets and causations). You would get a somewhat different proportion of these varied conditions in your sample each time you apply the Empirical inclusion criteria.

        As such, this cohort has no value as a study set. There’s a saying from computer programming, “garbage in, garbage out”, which would apply very well here, both to the authors’ preconceived expectations and to the useless data set (note that I’m talking about the inclusion criteria, not the patients themselves, who I’m sure are valuable members of society).

        Again, this is directed at the authors of the study, many of the members of the CDC’s CFS unit, and the Wessely school in general, not at you, Julnar.

        • http://www.the-confidant.info Graham W

          Julnar: Well done for managing to maintain the flow in this extraordinary debate. It has obviously touched the buttons of several people, and you’ve done an extraordinary job handling the inappropriately projected blame.

          Willow: I think your methodological concerns are all appropriate, but to extrapolate them as “ethical breaches” seems a little extreme. The researchers might, with hindsight, have conducted the study in different ways and with different cohorts but ‘ethical’ implies that someone or something might have been expected to suffer as a result and I don’t see how that could be true.

          General: The term ‘introverted’ is not a description of the tendency of someone to go partying or whatever. It is a measure of the extent to which someone is internally self-referring and able to ‘recharge’ themselves. The finding is important in the treatment of people presenting with chronic fatigue as it does suggest, as several people commented, that group based interventions, those involving regular attendance at a day-centre, and those held in public spaces, may be less likely to work. Much more research would be needed either way, but it is a useful pointer towards more likely positive outcomes from one-to-one interventions.

          • Willow

            Graham, I wrote an explanation which is awaiting moderation, and said I would explain “rather than” referring you to all the comments on the whole page… but reading more of the comments as well, would also be useful. Julnar also mentioned she hoped people were doing that, since she also believes the comments are very informative. You can skip the parts about inclusion criteria since you already understand that… but there is a lot more here. :)

      • Willow

        Graham,

        Understanding that the selection criteria is inappropriate is a good start, but if you don’t understand how harm can come to anyone, you must not have read many of the comments to understand the larger context. Rather than refer you to all the other comments…

        Walk with me for a moment into an alternate universe, because that is perhaps the clearest way to explain. Let’s say that US doctors didn’t know much about Tuberculosis, and it was a fairly new disease to the medical world (some years ago). There were some outbreaks around Europe, and some doctors in England studied, characterized, and named it, wrote textbooks, and the WHO made a listing under pulmonary disease.

        The US had some outbreaks, and one at Lake Tahoe got some special attention. Doctors there called in the CDC. The media noticed this was a popular resort area and began calling the disease the “Yuppie Flu.” They ignored the fact that the disease wasn’t limited to rich tourists but also waitresses and other people of all income classes. The CDC came with a junior member who looked at a few patients, wasn’t too interested, and went back to Atlanta.

        The CDC had to name the disease, however, and write a case definition. This they did rather carelessly, and christened the disease, “Chronic Breathlessness Syndrome” (CBS). They ignored pleas to use the established name of the disease, Tuberculosis, and they classified the disease as idiopathic, since they had not identified an infectious agent or settled on a disease process.

        Since the case definition was not exact, it included persons with bronchitis (which was also not a known disease) and panic attack, both of which included the symptom of breathlessness.

        The British government liked this development and British psychiatrists wrote a new case definition, with the new name, based entirely on the symptom of breathlessness (the only required feature of the definition was chronic debilitating breathlessness). Many of their patients with this definition had panic attack. They told all their TB and bronchitis patients they had CBS, and referred them to psychiatry clinics, and began treating them with a protocol designed for panic attack.

        The US government noticed that panic attack treatment was relatively cheap, and began to use that as well.

        Unfortunately, one of the components of the treatment made TB patients very much worse.

        Society in general and doctors in particular had always been suspicious of TB because a causative agent had not been identified, because current medical testing procedures did not identify the disease process, and because (for the physicians) the CDC had classed it as an idiopathic illness. Since it is now being treated as panic attack and since many bronchitis patients eventually improve, they feel they are justified in the belief that TB is not a serious or real condition.

        Health authorities specifically told doctors not to carry out any tests for TB except to rule out asthma and other known diseases, and not to use any treatments specific for TB, even though there were some tests and treatments shown by research to help some or most TB patients. There were even biomarkers suggested for TB. Because these did not work for bronchitis and panic attack, health authorities specifically said not to use them except in research.

        TB represents ME/CFS
        bronchitis represents CF
        panic attack represents primary anxiety and depressive conditions

        Back to this universe…

        This study is, unfortunately, one example in a whole school of thought. This school of thought methodologically mischaracterizes an infectious neruo-immune disease (ME/CFS), which the WHO has classified as neurological, as if it were a form of of hypochondriosis.

        Again: http://www.cfs-news.org/jason.htm (scholarly article)
        http://www.healthreform.gov/communityreports/delaware/delaware_19711.html (petition to government)

        By this mischaracterization, especially when authored by the health authorities as this article was, research into the biomedical pathologies is foregone by those who carry the most responsibility to carry it out and discouraged among other parties.

        Furthermore, patients, besides being denied treatment based on medical advances which should have taken place by now, are denied investigation into treatable comorbid conditions (just another complaint of a hyorchondriac), denied investigation into treatable symptoms and complications of the disease (heart failure, pain, etc. is merely an expression of CFS which has no particular cause and is thus untreatable, is the typical wrong attitude), and often don’t even ask anymore for medical intervention (from being patronized too much, and because from having untreated condition, we feel so awful all the time we miss important indicators of adverse changes… i.e. instead of complaining too much, we actually complain too little).

        ME/CFS is like a three-way cross between MS, Lupus, and AIDS. And often untreated or seriously undertreated. Yet instead of researching the actual pathology and treatment of this serious debilitating disease, the CDC is publishing personality studies (of which this is only one example of many) on such unscientifically-derived cohorts of a conglomeration of other diseases not including any significant amount of CFS (and no ME at all), but using the title of CFS, and, in all probability, using funding that was supposed to go towards ME/CFS research.

        If that’s not gross misfeasance and an ethical breach, I would like to know what is.

        • Willow

          correction; in the alternate universe, the treatment is designed to treat panic attack in hypochondriacs.

          i.e. CFS is not treated as if it were a mental disease; it is treated as if it were purely an imaginary condition (Britain), or as if it were a condition triggered by stress (emotional or physical) and maintained by imaginary factors (America)… but in any case, it is not thought (by health authorities and other members of the Wessely school) to be an actual disease but rather something the patient can be brought out of via modifying thought and behavioral patterns. This opinion is contrary to all scientific evidence.

  • JB

    Hi Julnar,

    I sympathise that it’s hard not to take comments personally but, on the other hand, I’m sure you will understand that it is even harder for people sick and disabled by ME/CFS for many years, not to take comments about links with the disease we contracted, through no fault of our own, with personality disorder and other such nonsense. We have had take this nonsense for decades now and it’s wearing very thin. Over that time, other conditions, such as Parkinsons, MS and Alheimer’s, have received and continue to receive funding for biomedical research, while CFS (ME) has seen its funding poured into psychological research that get us no further forward in finding cause or treatment.

    CBT and GET are NOT treatments for disease, they are adjunctive therapies, which have been shown not to impact positively on ME/CFS in the long term. GET is postively harmful to ME patients, for biophysical reasons well-documented by research (heart, muscle, mitochondria function, low blood volume etc.) CBT helps patients in general to come to terms with adjusting to living with chronic illness, which is why some people are helped (not cured!) by CBT, but the protocol used for ME/CFS patients (certainly in the UK PACE trial) is based on the stated false premise that there is no organic disease process at work in the ongoing symptoms of ME/CFS and that the symptoms are psychosomatic. Also, CBT and GET are all that are on offer for ME/CFS patients in the UK National Institute for Clinical Excellence guidelines, which the CDC approve of, yet which were the subject of a judicial review as they are not fit for purpose.

    This is not because of a lack of understanding about the disease, this is because of deliberate ignoring of the 5,000-odd biomedical research papers and patient evidence of what helps to manage their symptoms.

    I appreciate your comment in reply to KL that, “I think anybody who visits this page and reads the comments will learn a lot from all this and be well-informed, which is a very good thing”.

    I hope and believe that you are one of those who will learn a lot from the comments here, in line with the Editor’s note that, “Brain Blogger adheres to ethical principles and journalistic integrity.” There is no reason why you should be an expert on the subject, but if you plan to write about it again, I hope that you will read up on the research cited by others above and take a critical approach to the psychologically-biased research, rather than accepting it as good science and ethically sound without question.

    There has been a systematic campaign spanning decades, led by psychiatrists of the Wessely School, to make the neurological condition Myalgic Encephalomyelitis disappear and replace it with the far more benign-sounding Chronic Fatigue Syndrome. You may ask yourself why it was necessary to change the name of a disease. PET and SPECT brain scans show the brain lesions involved in ME and autopsy shows damage in the spinal fluid and basal root ganglia, so ME is a perfectly adequate and accurate description of the disease. Not only was the name changed but the criteria for CFS was diluted in revisions over the years, to the extent that the current CDC criteria for CFS bears no resemblance to ME and does not include any neurological signs or symptoms. Without going into detail here, the reasons are most likely a combination of political and financial.

    As for XMRV, the retroviral link with ME was first discovered 20 years ago by a promising young researcher, Elaine de Freitas, whose work was quickly quashed by the CDC. This would have happened again to the XMRV-ME/CFS research if it were not for the confirmatory findings of the Lo/Alter research being leaked and news of it travelling around the globe via the internet (XMRV and the MLVs found by the NIH/FDA are of the same family of gamma retroviruses. Dr. Reeves of the CDC is strongly influenced by the Wessely School and had predicted the negative outcome of the CDC XMRV study, saying the culprit of CFS is more likely to be sexual abuse and an ability to handle stress. Frankly, that’s mass slander. ME itself has always been known to be post-infective, hence its alternative name at WHO ICD-10 G.93.3 of Post-Viral Fatigue Syndrome. The “unexplained” bit was why the ongoing and often variable symptoms when the inital viral trigger has gone? This could well be explained by the fact that a retrovirus writes itself into the DNA and so never leaves the body. Recent research also showed that XMRV quickly migrates from the blood and invades almost every organ of the body. That would explain the multi-systemic nature of ME/CFS. Other research suggests that the retrovirus can lie latent until triggered, that could explain the variation in severity in symptoms between individuals and the relapsing/remitting nature of the illness. Obviously, none of this is proven yet as the research is still in the early stages but we never will have the answers until adeqaute funding for this biomedical research is allocated. Renowned scientist Dr. Judy Mikovits, of The Whittemore Peterson Institute, which is leading the way in this cutting edge research, was turned down SIX times for research grants, yet the NIH repeatedly claimed that no biomedical research was being done because no proposals had been put forward!

    I am sure you can understand how galling it is, then, for us to read of yet more poorly designed and executed, psycho-babble clap-trap research of the kind that you have reorted on here.

    I realise that BrainBlogger takes a biopsychosocial perspective if illness in general but the psychosocial tag attached to the biophysical illness, ME/CFS, has caused no end of mis-understanding among the medical profession and the public about this disease and has enabled all the funding for research and so-called “treatments” to be syphoned off to psychiatrists and psychologists. We have had enough of it. It needs to stop now.

    It is rarely mentioned that ME/CFS reduces life-expectancy by 25 years and that it can be fatal. Millions of people worldwide are very sick, disabled and dying slowly from this disease. We have already lost the lives we once had. We are a mixed bunch of people who simply contracted a disease of viral origin.

    BrainBlogger’s Editor’s note also says, “look forward to biomedical discovery and invention!” On that we will agree. I would ask you, Julnar, and Editor Shaheen, to balance this article by reporting on the biomedical aspects of ME/CFS as shown in previous research and the cutting edge research taking place at the Whittemore Peterson Institute, a non-profit organisation set up to find a cure for neuro-immune disease by founders whose daughetr has ME/CFS. Please also join us in lobbying for government and NIH support for the WPI and urgent public funding for this long-neglected and sorely-needed biomedical research. Thanj-you.

  • Hanna

    Hi Julnar,

    I’d like to apologize for the way I attacked you earlier.

    I really appreciate the fact that you published all the comments and that you seem genuinely interested in why a lot of people are offended by this study.

    Having lived through the nightmare of being hospitalized, too weak to leave my bed and in great pain, and being forced to sit up in a wheelchair, being denied food and assistance with toilet tasks because doctors think nothing is wrong with my body, I have lost all faith in the medical profession.

    If there’s one thing I know then it’s that this disease destroys lives and leaves nothing but horror in its wake.

    One day all the mechanisms will be figured out, and only then will the world be able to see how cruel we have been treated.

    As someone suggested, I would very much like to see a blog post by you that highlights this side of the story.

  • JB

    On the subject of deaths from ME/CFS:

    Sophia Mirza, mentioned above, died in the UK in 2005 from acute renal failure arising from the effects of CFS (ME) as recorded by the coroner, and the specialist autopsy that her mother, Criona Wilson, commissioned, showed evidence of damage consistent with a true diagnosis of M.E.

    Here is an extract from Criona Wilson’s website:

    “Unfortunately, it was decided by the pathologists that ‘CFS is the modern name for M.E.’ and so the term CFS was used for the inquest instead of the correct name of M.E. But despite that, this inquest shows very clearly that the name Myalgic Encephalomyelitis IS correct (as opposed to ‘CFS’ or Myalgic ‘Encephalopathy’) because there is clear evidence of inflammation of the spinal cord as well as that Myalgic Encephalomyelitis is a debilitating neurological illness which can sometimes be fatal, as it was for Sophia. Today, 13th June 2005, the inquest into the death of Sophia Mirza was held in Brighton Coroners Court, England. The cause of death was stated as ‘acute renal failure as a result of CFS’ The pathologist also said – ‘ME describes inflammation of the spinal chord and muscles. My work supports the inflammation theory. There was inflammation in the basal root ganglia.’”

    http://sophiaandme.org.uk/

    Sophia’s was not the first death recorded as due to ME/CFS and there have been others, but many deaths from ME/CFS go unrecorded as such,because the cause of death is either not thought of as related to ME/CFS, since many doctors do not believe it to be a physical illness, and some deaths may be recorded as ‘unexplained’. Such a case was recently reported in UK, where the deceased had been described by her doctors as having nothing wrong with her, “other than a diagnosis of chronic fatigue syndrome”. The short piece may be read here:

    http://www.hertsad.co.uk/news/death_of_quite_fit_and_well_harpenden_woman_a_mystery_1_443234

    Some ME/CFS sufferers commit suicide because of the never-ending isolation and pain, such as the recent tragic cases of Annette Upton, who committed suicide weighing just 5 stone, and Lynn Gilderdale,whose mother Kay was moved to assist her suicide after 17 years of pain and suffering.

    Memorial lists of people who have died from ME/CFS may be found via the following links:

    http://www.ncf-net.org/memorial.htm

    http://www.hfme.org/mememoriallist.htm

    You can see how people would respond to being told that their friends, children, parents, spouses, had died from a condition arising from a personality disorder and how their lives might have been saved or prolonged if only they had had treatment to modify these personality defects.

  • Andrew

    The cited study does not properly control for the selection biases of participating in a trial run by psychiatrists.

    Several studies have shown that when compared to patients with other chronic diseases, there is no statistically significant difference in personality dimensions. There have also been several studies which used healthy controls but still did not find statistically signifiant differences.

    The only way to really prove a cause an effect is to do a large longitudinal study which measures perfectionism, neuroticism BEFORE the patients become ill.

  • Alex Tanner

    I was excited to see some research had been done on this topic as I had plenty of anecdotal evidence correlating personality and chronic fatigue. My husband’s comment was that anyone who knows people with CFS is aware of the personality type which is vulnerable to this condition. Hang on -read on! I am utterly floored at your findings. What is the point of looking at the personalities of people who already have this condition? Don’t you have any idea of how it is to have CFS?
    Our vibrant daughter with a first class honours degree, triathlete, extravert party-girl, always organising social events, up at 5 am to train in the pool or on track, riding her bike to work, spending long hours on the job, but having the compassion to do voluntay work for a 3rd world country began to notice she was less interested in seeing her friends. Shortly after that she found she physically could not get out of bed, could not even make a fist. 18 months down the track she has her CFS diagnosis and cannot work, but does a little voluntary work. She longs to be the girl she used to be.
    Until she got this condition
    neuroticism: 0
    vulnerability to negative emotional states: 0
    extraversion: 10
    level of activity and sociability: 10
    agreeablesness: 10
    conscientiosness: 10 (almost extraordinary self-discipline)
    She is, when most unwell, subject to anxiety and worry and to depression (who wouln’t be?) Her sociability is also very low at these times and her brain fog, one of the symptoms, makes planning and self-discipline impossible.
    Through our daughter’s illness we have met other young women with this affliction and all of them have been very high achievers with very similar personalities to our daughters, participting fully and joyfully in life until their world changes.
    Your research strikes me as pointless and your conclusions are according to my experience quite contrary to the truth.

  • John

    Also, CBT and GET are in no way treatments for CFS. The entire research literature on the subject of CBT/GET in CFS (which is comprised of a handful of poor quality studies) is pretty much a complete pile of BS when you examine the methodologies used.

    Not to mention that the entire premise of CBT/GET in CFS is based on the faulty assumption that there is no underlying pathophysiology occuring in patients (in direct contradiction to the biomedical research literature) but rather the patient is simply suffering from a bad case of psychoneurosis combined with a phobic avoidance of exercise.

    When you advocate the so-called psychosocial/functional/psychosomatic ‘model’ of CFS, basically you are a)infantilizing the patient, b)ignoring the patient’s lucidity, c)ignoring the available biomedical research literature on the subject, and d)ignoring the quite expansive history of patients suffering from as-yet unexplained illnesses who are told that it’s all in their heads, examples of which include multiple sclerosis, autism, and asthma.

    Basically a large number of psychiatrists and psychologists have used any illness they could in order to try and give themselves importance/credibility/usefulness among their peers who practice legitimate sciences, and CFS patients are merely the latest in a long line of victims of these psychoparasites.

    So you might be able to see why patients take offense to poorly written articles such as these, which go a long way towards preventing adequate biomedical research and treatments for their illness.

    1. For instance there has not been one single study in this area which reported objective outcome measures such as actometer data, with a recently published review of three CBT studies by the same group of authors actually reporting that actometer data had been taken in these three studies, and guess what- there was no difference whatsoever in activity levels between the ‘treatment’ and control groups. This data initially only came out in a government report with patient groups then publicizing the findings. Talk about selective reporting of data; if this data had been included in the original studies do you think they would even have been published in the first place?(1)

    2. Even the subjective outcome measures used are a pile of crap- the Chalder fatigue scale, the most oft used outcome measure, has an extremely low ceiling, meaning that the majority of CFS patients score at or near the top at the beginning of ‘treatment’. This means that adverse outcomes cannot be reported due to patients not being able to score higher at the end than they did in the beginning, which also skews the results towards so-called improvement, since that’s the only direction the scale can go, even if very few of the patients were to report it!

    Given that CBT based on activity and GET are consistantly rated on patient surveys, taken across time and countries, as being the treatments which most often make patients worse, sometimes severely, combined with the literally dozens of biomedical research studies which have shown objective abnormalities in patients in response to exercise, ranging from decreased blood flow to the brain, altered muscle membrane excitability, increased complement activation, etc., patients being made worse by the supposed ‘treatment’ is a major concern, especially when post-exertional malaise, or the worsening of symptoms following even trivial exertion, has been the hallmark symptom of the illness in question for the past 50+ years!

    3. Patient selection- most of the CBT/GET studies use the less restrictive ‘Oxford’ criteria for CFS, with the Oxford criteria only being used by psychiatrists and psychologists in the UK and the Netherlands who believe CFS to be a behavorial disorder. In fact the Oxford criteria were developed by these psychiatrists and psychologists as a direct response to the 1998 ‘Holmes’ CDC definition, which they percieved to be ‘too biomedical’. Since the Oxford criteria is less restrictive and centers mainly on ‘fatigue’, and since the psychiatrists and psychologists who use it consider CFS to simply be a more ‘medical’ name for anxiety disorders and/or depression, studies which use the Oxford criteria include many patients suffering from anxiety disorders and/or depression along with true CFS cases, with biomedical CFS researchers expending great amounts of effort to try and exclude people with anxiety disorders/depression from their CFS studies.

    4. Several CBT/GET trials have had excessively high dropout rates, up to 42% in one study, which were not included in the final results, even though patient dropout is widely regarded to be a proxy measure of harm.

    5. The recently published FINE trial in the UK, which used what the authors called ‘pragmatic rehabilitation’, reported only a ‘clinically modest’ reduction in fatigue combined with no improvement whatsoever on physical functioning, which was the other primary outcome measure. The ‘pragmatic rehabilitation’ in question consisted of telling patients that there’s nothing physically wrong with them (which is in direct contrast to the vast majority of the published biomedical literature) and they need to get off their a$$es, although stated in purely ‘non-judgemental terms’. This is not an exaggeration, I have the patient handout written by one of the trial protocol authors and whose previous work the FINE trial was based on. It’s a complete joke and makes one wonder whether millions of pounds of taxpayer monies were wasted due to the poor methodologies and exaggeration of one therapist.

    6. There is also the question of post-viral fatigue syndrome (PVFS), with a recent study(2) reporting that rougly 10% of patients who came down with a number of viral illnesses such as EBV, Ross-River virus, and Q-fever when on to have an extended recovery period (PVFS) lasting more than 6 months, although 95% of these individuals were recovered at 1 year follow up and 99% were recovered at 2 years post-infection. How many of these individuals, who would have gotten better regardless, are included in CBT/GET studies?

    ——————

    1. Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G. How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity. Psychol Med. 2010 Jan 5:1 -7. [Epub ahead of print]

    2. Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group.
    Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study.
    BMJ. 2006 Sep 16;333(7568):575. Epub 2006 Sep 1.

  • Liv

    As previous people have stated, of course our personalities have changed due to endless suffering and due, in part, to the continuing disbelief have received from some members of the medical profession on our troubled journey. Surely there are enough of us with CFS to be believed?
    I collapsed a few hours after a hockey match 13 years ago and I had planned this collapse subconsciously (according to many a doctor)!!? I had felt weakness before this put had completely dismissed it as a prolonged mild cold. I believe the way I have been treated throughout my illness (13yrs) has lead to the intense mental anguish and distress which I later developed but, I learned to trust my instincts and now refuse to let anyone make me feel like a liar. Unfortunately, I still do experience distress and pain so intense that just ‘being’ is insufferable. I have left the doctor’s feeling completely and utterly demoralised and like I couldn’t bare to live another moment as they kept insisting it was a ‘subconscious pattern of thought’ that as causing this agonising illness.
    I have been through extensive CBT and also put my heart and soul into the lightning process. Oh my how I wanted to make that my cure. It supports me now but has never cured me. Through CBT, I meticulously began to unpick and analyse every thought pattern and read books on healing and on emotional intelligence. I completed the self help course on the internet called ‘mood gym’. I concentrated so much on my thoughts that it drove me insane and worsened my weakness and all the other symptoms because I created yet more of the damaging emotion…frustration. I became paranoid and anxious and an intense confusion ensued. I relapsed severely.
    I battled to understand how I had created this monster. I was willing to believe this at points as it was an attractive option to belive that if i ‘did it’ to myself I could ‘undo it’. They also said that if you believe it has a psychological cause then you are more likely to recover. Bullshite. I believed I had ceated this for so long and I ended up seriously damaged, psychologically. In fact, what those doctors fail to realise is that they are subjecting us to some sort of mental abuse.
    Yes, there are people wose off than me and I am ever compassionate.
    Luckily, I now have a wonderful doctor who never doubts me for a second. I remain as determind as ever to get up tomorrow morning. I have hope and a vivid visualisation of how I will be and this helps me to live through each challenging moment. It is so very refreshing to hear the majority of people on this site supporting and believing us but please, if there is a doctor reading this, please make your patient feel believed. It is the single most important thing you can do for that person. I wish all fellow sufferers well.

    • Willow

      Slight redirect… “make your patient feel believed” … yes, but be sure that is because the patient is believed. There are biological reasons for post-exertional crash, feeling of infection, etc. As we continue research, we will continue finding biological reasons for more symptoms. This is a biomedical disease and deserves to be treated like one, just the same as if it were myasthenia gravis or tuberculosis.

  • FedUp

    “Maladaptive behavior patterns thus may be risk factors for both chronic fatigue and multiple sclerosis.”

    Or the definition of ‘maladaptive behaviour patterns’ needs serious revision. Maladaptive behaviour is one of those definitional mirages that psychiatry is so besotted with, and has convinced itself it can reliably and objectively determine, largely free of context it would seem. I ain’t convinced.

    “only about half of people with this disorder actually consult a physician about their illness.”

    This is seriously disputable. It depends mainly on which definition you choose to use. The broader and more inclusive and psychiatrically biased the definition (eg Oxford, and Reeves CDC criteria), the more likely it is that those patients have not consulted a doctor about it. To the absurd point where some of these patients (in the Reeves CDC definition study) apparently didn’t even know they were sick!

    Whenever you discuss a paper on CFS (or ME), you must consider which definition was used. Some of them are even mutually exclusive.

    “Understanding the personality behind chronic fatigue will bring the victims of medically unexplainable chronic fatigue one step closer to getting proper help.”

    The unjustified assumption being that personality drives, or is at least significant, in causing this disorder. There is also plenty of good evidence that it plays no part in it, something most psychs very conveniently forget to mention when expounding their theories of it.

    “People cannot be blamed for any stressors or psychological difficulties that they experience in their lives.”

    True, but we get blamed for not going along with the superficial and often quite destructive interpretations and associated ‘therapies’ that are forced on us (and they are often forced on us, one way or another). And, of course, out here in the real world, that is not how putative ‘personality associations’ are seen by most doctors and the broader community.

    “It is well-established that chronic stress leads to vulnerability to developing physical illnesses.”

    But not inevitably. What about the large portion of patients who do not report pre-onset stress? It gets better: Using cortisol levels for a proxy measure of stress, there is no correlation until several months after patients get sick. Meaning, at best, that any stress issues are a result of being sick, not the cause. (And, once again, it does not occur in all patients. Even further undermining the stress as cause argument.) Findings that have considerable and not very welcome implications for the personality-as-cause school of thought. Does this finding stop them singing that hymn? Not one little bit.

    “and unusual postexertional malaise.”

    This symptom (or more accurately, the delayed component of it), is the main differentiating symptom, IMHO.

    “All the research done on personality and chronic fatigue is not denying that a virus or any other biological factor is causing the chronic fatigue. Instead, it is looking more at the mind-body connection”

    That is simply not true. Plenty of those on the psych side openly dismiss that possibility, or relegate it to secondary status. You need to be a lot more critical of the claims made by your colleagues in this area. They are not playing with a straight bat.

    “There have been studies in the past showing that cognitive behavioral therapy and graded exercise therapy help some chronic fatigue syndrome patients.”

    Those claims are hotly disputed. The studies on which they are based are seriously flawed to put it mildly. For a start check out the outcome measures they use, almost entirely subjective, and when they do use objective measures (and could be bothered to report them), guess what?, they show no improvement at all, and even worsening! Warning bell, or what? Bet the psychs didn’t tell you that.

    “I also do not believe that it is anyone’s fault if they are suffering from chronic stress, maladaptive traits, or any sort of mental illness. To me it is sad that someone should be degraded if they have any of these problems or personality traits.”

    Well then you need to start taking some of your colleagues to task for the way they have been portraying us. All dressed up in pseudo-scientific, pseudo-compassionate language. But still an appalling and deliberate misrepresentation of the research and us.

    “It is hard not to take the comments personally.”

    Fair point. But how the hell do think we patients feel after years and decades of this kind of nonsense from medical ‘experts’ and society in general? We are getting humiliated, scorned, abused, and denied basic support and proper treatment from every direction on the basis of work like this paper. There are some researchers who seem to think they have no responsibility to how the broader society uses their work, if people misuse it is sad but not their problem. Well, that is totally unacceptable, especially when their work is being used as the basis for this kind of mistreatment and for often very punitive public policy, and private insurance policy. They must stand up in public and collectively and firmly reject this use of their work. Otherwise they are directly complicit in the consequences, and we can only conclude they approve of such misuse.

    Most of the behavourial ‘therapies’ seem to consist of placing us in intolerable double binds. If we accept their view and go along with them we get sicker, often permanently. If we don’t our refusal is used as evidence for their interpretation and as justification for the very same therapies, including threats (and sometimes actual) removal of financial and social support, up to sectioning of patients, including removal of children who have the disorder from their families

    We are also lied to as part of their therapeutic model, on the basis that we can’t handle the truth. Is that acceptable? Pity we can still read the peer reviewed literature, so that tactic doesn’t really work. Backfires quite badly, actually. Just makes patients angry and contemptuous of medical professionals and their ‘science’, and quite rightly.

    Some influential researchers even claim the only reason their precious behavourial therapies don’t work, is because patients “choose” not get better. That we are at least to blame for remaining our predicament. Don’t believe me? Check out the work of people like Prins JB, who claims an astounding 70% cure rate. Pity nobody else can reproduce it.

    Please explain how we are supposed to deal with this attitude and treatment, at both the emotional and practical survival levels, on top of often very serious physical problems? I am damned if I can figure it out. And yet, for merely being human, and expressing legitimate frustration, anger and contempt at this destructive authoritarian pseudo-scientific nonsense, we are condemned with psychobabble and morality plays. You know, bullshit.

    It is beyond all belief, yet it happens all the time, and is sanctioned by the authorities.

    “Rather than studying personality traits in disease in general and how these come about in diseased populations, how they can be useful (you mentioned all personality traits have positive aspects), and how the patients can be helped… they have targeted a particular disease to associate with personality disorder and maladaption. While some people, such as yourself, do not blame others for having such traits, this is not the response of the general public or of physicians and researchers in general (as well as social services personnel). General response is to assume that the named disease (whether or not the name is appropriately applied) is a bunch of whiners and fakers. Again, this is detrimental both to the progress of research, and to the assessment and treatment of individual patients.”

    This is right on the money.

    “Walk with me for a moment into an alternate universe, because that is perhaps the clearest way to explain. Let’s say that US doctors didn’t know much about Tuberculosis, and it was a fairly new disease to the medical world (some years ago). [And so on...]“

    Very good analogy.

    •••••

    And I am sorry, but after nearly 30 years of this drivel, with all the losses associated with it, I don’t accept the merely misguided and over enthusiastic intellectual (ideological) passion excuse any more. It is now spilling well over into clear abuse and manipulation of the scientific process. How else do you explain that otherwise reputable journals, like the BMJ, have published virtually nothing on the biomedical side, and yet happily pump out reams of papers and opinion pieces on the so called psycho-social aspects? This goes way past mere individual bias. In some cases the selectivity of the papers, data, and the interpretations made of it, is so extreme and blatant that I believe there is good grounds for calling it fraud.

    Endless repetition of psycho-social catch words (code words) like patient perception, perpetuating factors, iatrogenic, denial, personality, social reinforcement, functional, somatisation (despite it being widely accepted that this concept is problematic to put it mildly), etc. All coupled with lovely descriptions of the conceptual model underpinning the behavourial approach, but little acknowledgment of how weak the evidence for it is and how much evidence directly contradicts it. For example, they constantly talk about physical de-conditioning being a critical part of the process, but the evidence for that assumption directly contradicts it. Yet they get away with this in the so called rigourous peer reviewed literature.

    It is all very articulate, formally proper, and superficially persuasive, but it remains pseudo-science. Unfortunately it has an accumulative snowball effect on the reader, including experts, and on broader research and clinical attitudes towards us, and they way we are treated, regardless of its veracity. It has now become straight propaganda.

    It leaves us patients with little choice but to start being politically active, which, of course, is then interpreted as undue influence on the noble objective scientific process. We can’t win.

    You need to stop taking these papers and claims at face value. The hard reality is that your precious peer review quality control has seriously failed in this area. It has become polluted with ideology and politico-moral fads. I find it interesting that it is usually easy to get a vague generic concession from researchers and clinicians that peer review is imperfect, and sometimes fails, even fails badly. But amazingly it is never in the area being discussed, and certainly not in their area of work. Amazing. It is always somebody and somewhere else.

    However you cut it up, the way we have been treated is one of the great scandals in modern medicine. But I hold little hope that the perpetrators of this appalling situation will ever be held properly accountable. They have played their political cards well, and made sure they have high level political protection, and a whole stack of get out of jail free cards to play when the heat gets too much.

    What are you, as an apparently honest and ethical medical scientist, who cares about patient welfare, going to do about it?

  • http://www.filosofaconciencia.blogspot.com Mariana Lojo

    Hi, I’m interesting about how pain is related with impaired physiological response to stress. Also, I wish to know how do you explain “the pain experience” in the assumptions of this article.

    Thanks, Mariana.

  • Rachael

    I totally agree with your observation, that certain people have a susceptibility for CFS and introversion which is hardwired from birth may be that link. I am an artist and a introvert. My CFS was triggered after intense aerobic exercise. I pushed myself beyond my limit. It was probably something I should not have been doing; just wasn’t built for it.

    Research shows that introverts have higher levels of certain types of brain arousal and are more sensitive to some kinds of stimuli. They actually do have more brain activity in their frontal lobes than extroverts. Many introverts are also gifted. You can’t make an extrovert into an introvert or vise versa, but this is not something that extroverts understand. The long term results for the introvert include “exhaustion, depression, lack of joy”.

    A lot of people suffering from stress may not realize it but they may be introverts. One of the biggest differences between introverts and extroverts is how they react to stress. They are not built like “extrovert machines” and are under constant stress trying to cope in a world designed by and for others. They need to re-charge their batteries; something that doesn’t fit into this non-stop world that extroverts have created.

    I have always been aware that my body needed protection from anything that was unnatural or unnecessary and am extremely sensitive to the side effects from prescription drugs, alcohol, aspartame, even vitamin supplements, all of which leave me feeling very unwell.

    I am not convinced that CFS is the result of XMRV virus. I have had CFS for over twenty-five years and have long suspected dopamine/endorphin depletion to be a factor in chronic fatigue syndrome. Dopamine can act like a brake. I believe that CFS is linked to dopamine/endorphin depletion and an inability to restore dopamine levels in the brain. If you are lacking in dopamine, exercise, stress etc. will only increase the depletion and cause more fatigue, “flu-like-symptoms”, pain etc. That is why it is important for people with CFS to pace themselves, or they will find themselves running on empty (crashing).

    It is assumed that almost every illness in today’s world is caused by an immune system that can’t defeat an invader, but what they are over-looking is the damage that can be caused by an immune system that doesn’t know when to quit.

    Autoimmunity is known to have a genetic component and tends to cluster in families as different autoimmune diseases. Even though there is some universally accepted knowledge about autoimmunity and its victims who are mostly women, autoimmunity has yet to be embraced by the medical community. Autoimmune diseases strike women three times more often than men and CFS is diagnosed two to four times more often in women than in men. I believe you have to have the genetic predisposition to develop CFS, which very well may be introversion and that there are many triggers.

    This may also explain why children who become autistic are also introverted; the genes and the gun.

  • Barbara Stott

    Bring back the yuppi flu party!

    A good friend was diagnosed with ME. Although she was inteligent and educated, she mistook the initials for MS and was left with the impression that she had a debilitating incurable physical illness.

    The result was a worsening of her real physical symptoms. Whether the cause is physical or psychological, the symptoms are just as real to the person experiencing them and no less physically debilitating.

    After months she phoned to explain that she had been too ill to return my numerous phone calls.

    Whilst I felt entirely sympathetic about her ME and the physical effect and the dificulty of maintaining social interactions, emphasising the difference between ME and MS led her very quickly to conclude that she had spent months being depressed about being depressed. A common problem that a medical involvement had only made worse.

    Everyone in her ME support group was dealing with the same mistake that they were suffering from from an incurable physical illness.

    How do you motivate someone to resume physical activity and social interaction without imposing the pressure that many people cannot deal with when they are depressed?

    Invite everyone you know to a party. If you haven’t done anyhting thay can get the house cleaned. If you have cleaned but the food isn’t ready, they can help with the food, but hopefully the party starts on time.

    I don’t have any empirical results. Does anyone else?

    What do you do for someone who has been depressed/chronically fatigued for so long they have no one to invite? Should that be the focus of a depression support group?

    • Willow

      There is that detail where ME is a debilitating uncurable physical illness.

      There is other literature and supporting info on this page.

      For convenience, I’ve included info here, too. See these studies (most of which are quite well replicated):

      Jammes Y, Steinberg JG, et al. “Chronic fatigue syndrome combines increased exercise-induced oxidative stress and reduced cytokine and Hsp responses,” J Intern Med. 2009 Aug;266(2):196-206. PMID: 19457057
      (altered muscle membrane excitability, unique profile of oxidative damage quite severe and prolonged and different from sedentary people, lack of cellular repair protiens)

      Kerr JR. “Enterovirus infection of the stomach in chronic fatigue syndrome/myalgic encephalomyelitis.” J Clin Pathol. 2008 Jan;61(1):1-2. Epub 2007 Sep 14. Review. PMID: 1787311. http://jcp.bmjjournals.com/content/61/1/1.full

      Siemionow V, Fang Y, Calabrese L, Sahgal V, Yue GH. “Altered central nervous system signal during motor performance in chronic fatigue syndrome.” Clin Neurophysiol. 2004 Oct;115(10):2372-81. PMID: 15351380

      Cook DB, Lange G, DeLuca J, Natelson BH. “Relationship of brain MRI abnormalities and physical functional status in chronic fatigue syndrome.” Int J Neurosci. 2001 Mar;107(1-2):1-6. PMID: 11328679

      Milhaylova I, et al. “Decreased Expression of CD69 in CFS in relation to inflammatory markers: evidence for a severe disorder in the early activation of T lymphocytes and natural killer cells.” Neuro Endocrin Lett. 2007 Aug;28(4):477-83. PMID: 17693977

      Prognosis here:
      http://www.mefmaction.comMECFSFM/Articles/CausePrognosis/Prognosis/tabid/1168/Default.aspx

      1. There is no known cure for ME/CFS.
      2. The prognosis for ME/CFS is poor. Joyce et al[1] did a systematic review of prognosis studies for chronic fatigue and chronic fatigue syndrome.

      Prognosis studies indicate that less than 10% of chronic fatigue syndrome patients return to pre-morbid levels of function and most remain significantly impaired.1 Pheley concluded that “complete recovery from CFS is rare”.[2]

      Hollingsworth KG, Jones DE, Taylor R, Blamire AM, Newton JL. “Impaired cardiovascular response to standing in chronic fatigue syndrome.” Eur J Clin Invest. 2010 Jul;40(7):608-15. Epub 2010 May 23. PMID: 20497461

      Meeus M, Mistiaen W, Lambrecht L, Nijs J. “Immunological similarities between cancer and chronic fatigue syndrome: the common link to fatigue?” Anticancer Res. 2009 Nov;29(11):4717-26. Review. PMID: 20032425

      Jason L, Benton M, Torres-Harding S, Muldowney K. “The impact of energy modulation on physical functioning and fatigue severity among patients with ME/CFS.” Patient Educ Couns. 2009 Nov;77(2):237-41. PMID: 19356884
      (pacing actually does help a bit)

      Guilleminault C, Poyares D, Rosa A, Kirisoglu C, Almeida T, Lopes MC. “Chronic fatigue, unrefreshing sleep and nocturnal polysomnography,” Sleep Med. 2006 Sep;7(6):513-20. PMID: 16934523

      “ME/CFS: A Clinical Case Definition” [2003 Canadian Definition, abridged] http://cfids-cab.org/MESA/me_overview.pdf

      Spotila J. “Post-Exertional Malaise: Perception and Reality.” http://www.cfids.org/cfidslink/2010/080402.asp Review.

      So why this biomedical basis of ME/CFS so poorly understood? Definitional confusion, and Politics.

      Jason et al. “Politics, Science, and the Emergence of a New Disease: The Case of CFS” Am Psychol. 1997 Sep;52(9):973-83.
      (free full text at

      Ray, Weir, Cullen, and Phillips (1992) found no significant relation between indexes of perceived CFS illness severity (e.g., frequency of symptoms, course of illness, disability, and severity of illness) and emotional distress. Moreover, the lack of an independent relationship between these two variables could be one of the bases on which people with CFS attribute their illness to physical rather than psychological causes.

      But please read the whole article–it’s very good, explanatory, and quite important.

      Merz S. [Chronic fatigue syndrome. More and more differential diagnoses suggest a new view of this syndrome]. Lakartidningen. 2002 Aug 22;99(34):3282-7. PMID: 12362846

      Several CFS definitions have been developed over the years, and it is common for investigators to erroneously compare studies based on different definitions, which nevertheless all use the term CFS. Much of our “understanding” of CFS does not apply to the small group of patients who fulfill the current (1994) CDC definition.

      Hooper M. “Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research.” J Clin Pathol. 2007 May; 60(5): 466-471. PMC1994528

      Jason LA, Helgerson J, Torres-Harding SR, et al. “Variability in diagnostic criteria for chronic fatigue syndrome may result in substantial differences in patterns of symptoms and disability.” Eval Health Prof. 2003 Mar;26(1):3-22. PMID: 12629919

      Maes M, Twisk FN. “Chronic fatigue syndrome: Harvey and Wessely’s (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways.” BMC Med. 2010 Jun 15;8:35. PMID: 20550693

    • Willow

      There is also the complicating problem where people with primary depressive conditions are misdiagnosed as having CFS. This is a misdiagnosis which prevents these patients from getting the best available treatment for the diseases which they have. They ought to be re-diagnosed with the proper diagnostic classification and treated for the very real (and mostly physiogenic) and debilitating conditions they actually have.

      This approach will also help the people who actually have ME/CFS, so this completely different real and debilitating condition can be better understood. (There still needs to be subgroups or further disease divisions among the remaining ME/CFS patients, as was called for by the Fukuda [1994 official CDC] definition and as has been mentioned by numerous researchers in countless papers.)

      Lumping together a large array of similar and dissimilar conditions under the label of ME/CFS does nothing but hurt all of these patients, each of which has a very real and usually debilitating disease.

    • JB

      Utter drivel. I am sure that being mistakenly diagnosed with any incurable disease may make some people depressed and that that depression amy exacerbate physical symptoms but this has absolutely nothing to do with the disease ME (also known as CFS).
      How do you explain the fact that the majority of ME/CFS patients are NOT told they have an uncurable illnes, but instead are told that there is NO disease process at work causing their ongoing symptoms – and yet, they remain ill and die prematurely?

      Are you suggesting that brain lesions (similar to those of AIDS patients) are caused by simply believing that you are ill? How extraordinary. I am a strong believer in the power of the mind but there is a limit to believability.

      You have cited one case. Let me cite my own case. I was physically and mentally healthy – never had a day off work from a job that was wonderfully rewarding and kept me both physically and mentally active – when I was laid up in bed for 4 days – yes, 4 days, no deconditioning there then, with a mild flu-like illness, from which I recovered and returned immediatly to work.

      In the following weeks i began to develop symptoms I had never before experienced, such as extreme muscle weakness, muscle aches, dizziness, sensitivity to light, noise and fumes and physical exhaustion unrelated to the level (my usual level) of physical and mental activity, which I now know to be called post-exertional malaise. I made light of these symptoms – laughed them off and did not seek medical advice until they had persited for several weeks, during which time I continued to work full-time, but had had to stop all out-of-work-hours activities, needing to sleep and rest, neither of which alleviated the symtoms.

      The GP told me it sounded as though I had Post-Viral Fatigue Syndrome and that it would work its way out of my system in about a year. I believed this and continued to do as much as possible in the belief that it was just a matter of time before I resumed normal health and functioning.

      That was 19 years ago.

      Trust me, if severity of symptoms was simply a matter of belief, i would still be working full-time at a job I love, with an active social life and my usual exercise routine, instead of ill-health retired for 6 years, housebound for the past 2.

      Go elsewhere with your home spun housewives tales.

  • Vatsalya

    good job Julnar!

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  • http://www.charmedcounseling.com Joeleen Schnettler – Spokane Counseling

    It’s about time CFS is an “official” recognized illness in the medical community. There is evidence to suggest that CFS is a mental disorder but also enough evidence to support that it is also a medical conditions as previous posters have suggested. Either way I hear that a biopharmiceutical company called Hemispherx Bio has been working on a drug (the past 30 years I believe) called Ampligen. Seems to be quite the cure all but may actually be beneficial to CFS patients.

    • Willow

      Hi Joeleen, thanks for your support. Yes, ampligen seems to benefit some ME/CFS patients and I don’t see any good reason not to approve it.

      You may find this recent article by Elinor Stein (an MD and a psychiatrist) helpful:
      http://www.psychiatrictimes.com/print/article/10168/2123915

      best,
      Willow

  • posting a response

    This is a letter which the journal declined to publish, but has since been posted on-line:

    Personality studies of the chronically ill may do more harm than good.

    In their recent article, Nater et al. [1] compare the answers on two personality questionnaires [2,3] that were provided by Chronic Fatigue Syndrome (CFS) patients, controls with disruptive but less serious ‘insufficient fatigue’ (ISF) and healthy controls. Perhaps unsurprisingly, the two groups suffering from health problems agreed to statements such as “I expect other people to do favors for me even though I do not usually do favors for them” at a greater rate than healthy controls. This led to the diagnosis of personality disorders in 29% of CFS patients, 28% of ISF patients and 7% of well controls.

    The impact that living with a chronic illness has upon an individual’s life could alter their assessments of themselves in many different ways. For example, Nater et al. report that a quarter of CFS patients are unemployed or on disability benefit; this might be expected to increase the likelihood of patients agreeing to the statement “I see myself as thrifty, but others see me as being cheap”[2], without being an indication of a greater prevalence of obsessive-compulsive personalities. The use of personality questionnaires to diagnose personality disorders amongst the chronically ill may lead to misleading results if such confounding factors cannot be accounted for. Nater et al. note (p316), “studies comparing CFS to other chronic illnesses, such as multiple sclerosis, did not find differences regarding the prevalence of comorbid personality disorders” and this result would seem to be repeated again here.

    Coverage of Nater et al.’s work [4,5,6] followed a news release titled ‘Is Chronic Fatigue Syndrome A Personality Disorder?’[7], and promoted the notion that those suffering from CFS are liable to be suffering from severe personality abnormalities related to non-compliance with treatment suggestions. Given the design of the study and the manner of its presentation, such coverage is not surprising. While Nater et al. focus upon the possibility that it is CFS patients’ personalities which lead to a damaging lack of trust and confidence in health care professionals, it could be argued that these are reasonable responses to the negative stereotyping and stigmatization which patients already face [8,9,10], and which papers that casually emphasise the role maladaptive personality features may play in CFS are likely to worsen. Such problems are especially worrying given the concerns raised about the broad criteria the researchers used to define CFS, which appear to lack both sensitivity and specificity. [11,12]

    While Nater et al. note many of the limitations of their work, and chose to include a control group suffering with health problems which was absent from their initial presentation of results [13], great care needs to be taken with the design and presentation of such studies in order to ensure meaningful results are gathered, and that they are not used to legitimise the crude profiling and stereotyping of patients. Otherwise, patients agreeing with the statement “Others will use what I tell them against me” [2] might be displaying prescience, not paranoia.

    [1] Nater UM, Jones JF, Lin JM, Maloney E, Reeves WC, Heim C: Personality features and personality disorders in chronic fatigue syndrome: a population-based study. Psychotherapy and Psychosomatics. 2010;79(5):312-8

    [2] Hyler SE: Personality Diagnostic Questionnaire-4+ (PDQ-4+). New York, New York State Psychiatric Institute, 1994.

    [3] American Psychiatric Association: Diagnostic and Statistical Manual of Mental Disorders, ed 4, text rev (DSM-IV-TR). Washington, American Psychiatric Association, 2000.

    [4]‘Is Chronic Fatigue Syndrome A Personality Disorder?’ rehacare: http://www.rehacare.com/cipp/md_rehacare/custom/pub/content,oid,27211/lang,2/ticket,g_u_e_s_t/~/Is_Chronic_Fatigue_Syndrome_A_Personality_Disorder.html Accessed November 21, 2010

    [5] ‘Is Chronic Fatigue Syndrome A Personality Disorder?’ Medical News Today: http://www.medicalnewstoday.com/articles/207006.php Accessed November 21, 2010

    [6] ‘Tired and Tested’, Metro. November 9, 2010:27 http://e-edition.metro.co.uk/2010/11/09/ Accessed November 21, 2010

    [7]‘Is Chronic Fatigue Syndrome A Personality Disorder?’ Journal of Psychotherapy and Psychosomatics, AlphaGalileo: http://www.alphagalileo.org/ViewItem.aspx?ItemId=89186&CultureCode=en Accessed November 21, 2010

    [8] Drachler Mde L, Leite JC, Hooper L, Hong CS, Pheby D, Nacul L, Lacerda E, Campion P, Killett A, McArthur M, Poland F. The expressed needs of people with chronic fatigue syndrome/myalgic encephalomyelitis: a systematic review. BMC Public Health. 2009 Dec 11;9:458.

    [9] Patients with chronic fatigue syndrome are not treated properly BMJ. 2004 June 5; 328(7452): BMJ doi: 10.1136/bmj.328.7452.0-e

    http://www.bmj.com/content/328/7452/0.6.full. Accessed November 21, 2010

    [10] Newton JL, Jones DEJ. ‘Making sense of fatigue’ Occupational Medicine 2010; 60(5): 326-329

    [11] Kindlon T. Criteria used to define chronic fatigue syndrome questioned. Psychosom Med. 2010;72:506-7 [12] Jason LA, Evans M, Brown A, Brown M, Porter N, Hunnell J, Anderson V, Lerch A. (2010). Sensitivity and specificity of the CDC empirical chronic fatigue syndrome case definition. Psychology. 2010;1:9-16.

    [13] Nater UM, Jones JF, Lin JM, Maloney E, Reeves WC: Abstract 1747: The Role of Personality in Chronic Fatigue Syndrome: Findings from a Population-Based Study. 2009. American Psychosomatic Society 67th Annual Meeting.

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Julnar Issa, BS

Julnar Issa, BS, is a former scientific researcher now focused on bringing the knowledge of research to the general public as a freelance writer. She holds a Bachelors degree in biomedical engineering with a minor in psychology.
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