Chronic Fatigue Syndrome – An Inside Look




Water reflections

While performing research for my next article, I found a paper in The Open Neurology Journal reporting the results of a scientific study which confirmed both the presence and the level of cognitive impairment in people with chronic fatigue syndrome (CFS). As I was reading the study, I thought “Aha! Finally. A study that confirms cognitive deficits!” My interest and excitement was due to my own experience with CFS and the many difficulties I have experienced over the past fifteen years; as well as the knowledge of how this information will help other people afflicted with this crippling illness.

I had entered nursing with a lot of anticipation and many ambitious plans for the future. After working a few years on a critical care unit, I decided to change my focus and began working as a visiting nurse for a local home health care agency. One wintry day, I fell while going down the outside stairs and sprained both my ankle and shoulder. Nothing to worry about, right? A few weeks of rest and recuperation and I would be good as new and back to work. This is where all of my plans went straight off the rails and I found myself in a situation where I had no control and very little understanding and support from the medical community.

I was bedridden for almost two years; many days lacking the energy to lift my head from the pillow. The headaches were crippling, my sleep pattern was horribly disrupted, and the aches and pains were awful. As if this wasn’t bad enough, my brain had become so muddled and fuzzy that I was unable to understand what I was reading, my concentration, memory, and ability to focus was gone, and I struggled to find the correct words when speaking.

There was this huge disconnect in my brain that prevented me from identifying and understanding exactly what I was experiencing, and I was unable to effectively communicate the deficits and the severity to my doctors and family. Anyone who has had the misfortune to develop CFS knows how difficult it is to explain exactly how badly you are feeling and to describe the problems you are having with thinking, memory, and concentration; especially since people with CFS usually do not look physically ill.

What made the entire situation infinitely worse for me was the fact that I was an RN. I had all this medical knowledge stored somewhere up there in my brain, but I was no longer able to access any of it. Not being able to accurately communicate my problems and how my life was being affected became a source of embarrassment and shame to me, and I gradually withdrew from actively pursuing medical care or attempting to explain to my family why I was not working anymore.

This brings me back to the study. Up until now, scientists have been unable to accurately measure the level of cognitive impairment being reported by people with CFS, and were not even able to say with certainty that cognitive impairment actually existed. In this study, of the over 500 participants, 20% of people with CFS were found to have significant cognitive impairment; while only 4.8% of the control group was found to have any level of cognitive impairment.

People with CFS were found to have attention deficits, more incorrect answers on tests, and did not process information as rapidly as people without CFS; their memory was impaired, their reaction times were much longer, they were slower to process information and also had slower motor speed; they were easily distracted, and had verbal difficulties. People with CFS showed a higher level of mental fatigue when tests were repeated, and researchers were able to conclude that the level of cognitive impairment a person experiences is greatly affected by the degree of mental fatigue they are experiencing.

A very strong association was found to exist between a person’s complaints of mental fatigue, their illness severity, and their level of cognitive impairment. In addition, the level of cognitive impairment experienced was found to not be affected by the presence of psychiatric illnesses or medications. Those among us who have been dealing with this medical mystery finally have a study to that proves that memory, concentration, and attention problems really do exist.

Fortunately, I have gradually improved over time and was able to find a way to return to work while limiting my physical activity and stress level. I still have some of the symptoms of CFS: I become very tired and do not have the stamina for a lot of physical activity, and when I am over-tired my brain becomes fuzzy and I am unable to concentrate. This study has confirmed what I knew all along, cognitive deficits in CFS do exist. To this day, I couldn’t say whether CFS is a disease or an illness state; but I can tell you what CFS is not… I am not lazy, I do not want to be ill, and what I am experiencing is not a figment of my imagination.

References

Capuron L et al. Cognitive dysfunction relates to subjective report of mental fatigue in patients with chronic fatigue syndrome. Neuropsychopharmacology. 2006 Aug;31(8):1777-84.

Majer, M., Welberg, L., Capuron, L., Miller, A., Pagnoni, G., & Reeves, W. (2008). Neuropsychological Performance in Persons With Chronic Fatigue Syndrome: Results From a Population-Based Study Psychosomatic Medicine, 70 (7), 829-836 DOI: 10.1097/PSY.0b013e31817b9793

Thomas M et al. An Investigation into the Cognitive Deficits Associated with Chronic Fatigue Syndrome. The Open Neurology Journal. 2009; 3: 13-23.

  • Debbie

    OMG this is me! My problem is I cant get any doctor to diagnose this as my problem. What do I have to do to get the help I need?

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  • Carolyn Starner RN BSN

    Debbie (and anyone else who may be asking), find a support group in your area. Support groups have a wealth of information about doctors who are specializing in CFS and cutting-edge treatments. Good luck!

  • Debbie

    Thank you so much Carolyn! I am searching for one as we speak. If you have any other suggestions along the way I would love to hear them

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  • Tammy

    Debbie, OMG is exactly how I feel. This is so me it’s actually crazy. I stopped going to school because I couldn’t learn anything. I feel really dumb like an airhead. And in school I was an honeroll student with no issues. Now my husband is really about to leave me because of the Laziness, as he calls it. My kids are suffering because I lay around all day instead of taking them out like I should. I live in Massachusettes, does anyone know who I could contact or how to go about it??

  • Carolyn Starner RN BSN

    Tammy, check out this website: http://www.ncf-net.org/. You may be able to find doctors or support groups in your area. Good luck, and hang in there!

  • Debbie

    Carolyn, Thanks for the web address you gave Tammy. I checked it out. I AM Epileptic. Am trying to find Nurologist here.

    Tammy, Ive decided to become pro-active in my own health care (as exhausting as it is). Ive printed off the articles that seem to pertain to me. Im scheduling an appt with a counselor and trying to find medical help too. Right now its the best I can do but at least its something. God Bless!

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  • Tammy

    Thank You for the information. I am just starting the research process so any little bit will be a great help. I actually see my PCP tomorrow so we will see what happens with that?? I have a feeling he is not going to take me seriousely, but I need to start somewhere. I will keep you posted! Tammy

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  • Alan

    Dear Carolyn

    First apologys for spelling, typos etc- it comes with the ME.

    I have suffered from ME/CFS for over 15 years- diagnosed- after much misery and suffering circa 1996/7.
    In this period it has me two careers- the first a highly active, high profile, complex, long hours, career as a Technical Manager/Master Carpenter in the West end theatre overseeing all aspects of stage and technical production both backstage and front of house. I returned to work 99/2000 circa- first as a volunteer then later as the first ever waged senior national advocate for a unique NGO- working with drug users seeking, needling or having provlems for treatment for problems related to their drug use (mainly opioid users ). Another high profile, high stress post- I thought this time 2000 I had the ME under some control – the waxing and waning manageable especially as I could work from home unless traveling to cases. comferences, meetings, training others, speaking, etc. I even got a Royal College of General Practicioners post grad diploma in ‘Substance misuse’ and co-authored thgeir guidlines on methadone prescribing(pub 2005)- little did I know and I had no awareness at the time of the cognitive problems -. I noticed the odd little thing- but nver really put it all together- I thoughtI knew all I needed to know about ME and had stopped reading up on it.

    I did start to feel increasingly stressed and fatigued – but ascribed this to the ME’s waxing and waning, that was until my office administrator started to call and ask why I kept spelling words wrong- why I could not fill in case tracking forms I had designed. I was finding it increasingly difficut to multi task-(something before ME I did with ease) and could not recall hour long telephone conversations, cases, etc- from earlier in the day let aside what I did the day before. As ever the case with ME when it springs another nasty suprise on you I thought I was going ‘mad’. A large part of my work involved writing and suddenly I semed to be becoming dyslexic in mid life!

    I was in tears- I used to train Consultants- Doctors and others- I would speak on the same conference platforms as internationaly renkowned experts and Goverment Ministers- at 2005 -7 I found myself becoming increasingly unable to work- even from home- I was tired all the time -again- I started to recgnise the old demon was back- not that it had left but I thought I had it under control- little did I know then what I know now. The ‘waxing and waning stooppped’ and the ME returned in a far more malign form than ever before.

    My memory is shot- as is my self esteem. I can rarely walk more than a couple of hundred yards and that’s if I’m on strong pain killers and anti inflammnatorys.

    I had to leave a job I had loved in 2007 and am now severely disabled- I bruise without knowing why- ME is described as a ‘multi-systemic’ condition (disease in lght of the XRVM virus discovery?)- aftter 20 years of restricted excercise I now also suffer from a host of secondary conditions- diabetes- chronic deppresive states- panic attacks- hyper sensitivety to stress ,anxiety & auditory/visual stimuli. My immune system is shot- I suffer from vascilitus- Arhtitis- the ME related joint and muscle pain is compouded by this latest development.

    It has cost me a 30+ year relationship- I no longer have any social life- live in poverty- and am a single father to boot. I go to bed wading through a wall of mud in lead boots- and I wake up the same. I suffer IBS & irritable bladder- a visit to the supermarket can cost me a week in bed. I have to remind myself where I leave my reminders- all the coping strategies have proved of no avial. Even resting my hand’s on my thighs causes acute pain and bruising at times. My bodys ability to regulate tempreture is shot.
    I have to take clothing for all conditions whenever I manage to get out of the house. Wlking from a street into a local shop can leave me drenched in sweat- other times I am cold for no apparent reason. It’s as if my bodies own thermostat has gone awol.

    ANd it always has another nasty suprise in store- just when you think it cannot get any worse- it can and does. Eye. mind and motor coordination are difficult – hence the typos- and then there is the withering- soul destroying lack of understanding on the part of others of just what I and others like me are going through. It has cost me much of the joy’s of fatherhood.I am now 50 and just coming to terms with having being diagnosed as suffering diabetes to boot. A direct consequence of years of inability to excercise means I’ve doubled my body weight- with all the attendent health and self image/body dismorphia problems that come with that. So on top of the joint and muscle pain I experience with ME I now suffer additional pain in my hips and thighs and- lest we forget- I’ve also developed arthritis to just further compoud the problems I face. Just because you have ME doesn’t mean nor preclude you developing /experiencing other chronic health problems, disease and conditions. However having ME compounds them and makes them harder to manage/live with.

    At least the XMRV retro virus breakthrough seems to suggest that what I havelong suspected may be true- That ME is not some ‘psycho-somatic’ condition- that I’m not dissembling, pretending to be ill, and that all this time a retro virus- like HIV/Hep C et-al is the pathegenic cause or key as to how and why so many of us 17,000,000+ counting globaly- and that’s on the low side as many Doctors still fail to recognise the illness and there remains no ‘test’ for it. Although if the XMRV virus research findings are confirmed in further research this may change in years to come ( so far other studies inidicate that some 90%+ of patients diagnosed with ME seem to be carrying this retro-virus- which originated in wild field mice- the first study -news of which was relaeased in October this year- seemed to suggest circa 70+ % so the latest news appears to validate the initial research findings)

    Unfortunately as with all retro viruses- these are the most difficult to treat- they hijack your bodies cells own DNA(I’m grossly simplifying this) in order to replicate themseves- making them hard to identify- and even harder to treat. There is still no cure for HIV/Aids and huge sums have been spent on research into that- ME attracts very little research funding by comparison. The XMRV retro virus is also mplicated in certain cancers, MS, and one begins to wonder about Lupus etc? Another multi systemic disease which -so far- has no identifiable pathogenic cause.

    The problem with retro viruses is how do you kill the patheogen without killing the host? Ask anyone who has been treated for Hep C- even the latst pegylated medications remain at heart- hit or miss chemotherapy and the treatment- which dosent always work- is by no means pleasant- indeed some subsequently are diagnosed with CFS/ME.

    WHICH BRINGS ME TO A POTENTIAL TIME BOMB- blood screeing and transfusions- if- as seems increasingly likely the XMRV virus is the pathogen behind this blight- then it can be transmitted via blood, body fluids and secretions. I believe the Candian Goveremnt is now alrady initiating screeing of all blood donated for the retro-virus. AS for prevalence in ‘high risk groups’ well drug users- intra nasal and /or intraveinous will be at considrable risk yet ‘drug use’ and/or habituation is deemed to automaticly exclude the individual from diagnosis of ME. Nonsense- this is just clinical prejudice and belief as opposed to evidence base medicine which tells us more about the Dcotors own moral, ethical and belief systems than it does about the presenting patients health and condition(S)..
    .
    Anyway I’m veering off topic- I’m one of the lucky ones in so far as I have had the support of two GP’s who have a special interest and experience of working with ME patients- many do not have such experience or knowlege base- as for those without access to health care- in less afluent parts of the world or where ME is still not recognised for what it is – they suffer in silence- their own body and mind a personal hell.

    ME sucks the life out of living- it saps strength- identity, the mind becomes a sieve- my lymp glands balloon up and down like yo-yo’s on springs- and there will be NO CURE IN MY LIFETIME – SIMPLE- AS FOR MY-OUR- FUTURE PROGNOSIS- IT LOOKS PRETTY BLEAK- sorry- my hand eye co-ordination means I often hit the wrong button. I have only recently learnt about ME’s ‘attack’ on the cardio-vascular system- which again explains some of the new array of problems I’m been experiencing.

    Catching a bug that others shake off in days takes weeks to clear up. I suffer repeated bouts of thrush and cystitis- as for my sinuses and cheek bones- which is where it all started- my head swelled up like a balloon- with puss and fluid- due to an unknown infection which took root and then never seemed to clear up comepletely. I still suffer bouts where the old ‘enemy’ returns or pop’s it’s head out of it’s favourite hiding hole- the upper sinues and eye socket./upper cheek bone The damage to my facial nerves/muscles & saliva glands is such that I often dribble without feeling it especially when the ME is flaring up.

    The worst – no one of the worst aspects is how new symptoms manifest- there have been times when I questioned my sanity- my own body- you end up blaming yourself and feel a burden- a drain – on all those who love or once loved you. I have lost all my friends- I have no social life- I struggle to make ends meet- and I used to pay 40% tax- lived a middle class Guardian readers lifestyle living and working in central London.- never resented paying tax at all- I was on PAYE. ME , becoming incapacitated and then severely disabled has left me feeling stigmatised, marginalised and riddled with guilt because I am dependent on benefits- one of the shameless caste- a ‘scounger’ -one of the loafers- indoloent and feckless ‘vermin’ the son and the wealthy- loathe so much. The class hatred and bigoted abuse that is projected at those of us who have the misfortune to become ill- sick- unemployed- disabled is withering – you cannot escape exposure to it and you cannot but help internalise such constant demeaming abuse – ultimately it shatters self esteem and I’ve long concluded that class discrimmination is as corrosive as racial hatred and discrimmination. The language used to describe and condem us- would- quite rightly- be deemed unaccptable if used in racial, religious or sexual/gender contexts. But class hate- that’s ok.

    I will be on opioid pain releif for the rest of my life- no worry- it beats suffering- and will do me no harm at all- but getting dose increases for breakthrough pain is a nightmare. You feel like Mark Lester in Oliver ‘Please sir can I have some more’……

    So I truly empathise with you and all who suffer this much maligned, much misunderstood, marginalised and marginalising, atrophying , devastating, DISEASE- I will no longer use the term ‘condition’- The tragedy is that many in the ‘caring professions’ continue to believe that it’s all in our mind. That it is deppression, not a real illness- that we are hypocondriacs- you see peoles eye’s glaze over when ever you try to explain why you the way you are- and I’m going to have to leave it at that- as my hand is now in too much pain to continue typing , my vision is blurring – as the eyes get fatigued, and my mind is begining to falter- so I’m off to rest -again.

    I wish you well – sincerely so- best: Alan J

  • Scott

    Wow, I know exactly what you’re going through. I went to the doctor for pretty much the same thing and they didn’t know what to do so they subscribed me some zanex and sent me packing. I took 1 zanex when I got home and slept for 14 hours but it didn’t help.

    I still have the symptoms but I am used to it now. I found that exercise and alot of sleep seem to help. Not enough sleep makes it worse.

  • Karen

    Supplementing with Whole Food and eating whole foods eventually may help with chronic fatique syndrome. It is estimated 85% of degenerative disease could be prevented by just changing diet. If you do supplement use whole food not fragrmented vitamins. If you have any question send me a quick email

  • _beltie

    Carolyn, it’s interesting (but tragic) that a fall, possible whiplash and/ or Traumatic Brain Injury was at the start of your CFS. This is anecdotal but I know a lot of people with CFS who had whiplash and or TBI that either kicked off the CFS, or was in their prior medical history. This should be looked at. I’m not negating viral theories for this terrible condition, I think it is a “syndrome” : different overwhelms to the body (acute or chronic) can kick it off and everyone has different constellations of symptoms. What they thought was CFS in me was food intolerance I believe caused by prior way over medicating (by the medics) of me with antibiotics and no probiotics, but I’d also had TBIs. Luckily I am now better. The problem is medics, and people, find complexity difficult to deal with. I told them that 150 years ago Doctors thought bleeding people was right, so hpw are they so confident of being “right” in their views now? In 150 years time there will be more knowledge and they will think differently. Never trust an arrogant Doctor!

Carolyn Starner, RN, BSN

Carolyn Starner, RN, BSN, is a freelance researcher, registered nurse, and writer, focusing on medicine and health-related topics. Her main areas of interest are geriatrics and public health education.
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