Carolyn Starner, RN, BSN – Brain Blogger Health and Science Blog Covering Brain Topics Wed, 30 May 2018 15:00:03 +0000 en-US hourly 1 Chronic Fatigue Syndrome – A Medical Mystery Sat, 08 Aug 2009 13:00:47 +0000 Medical mysteries pop up every now and then that are either misdiagnosed or dismissed as either a psychosomatic or a psychological disorder. Chronic fatigue syndrome (CFS) is one of these mysteries and identification of a cause, or even whether the disease actually exists, continues to elude scientists. My previous post focused upon my own personal experience with CFS; in this post I would like to turn the focus to a brief history of CFS and an exploration of current medical studies.

CFS was first described in 1984 when a cluster of people in Nevada and California presented with the classic symptoms of unrelenting and debilitating fatigue unrelieved by sleep that had lasted for six months or more. In addition, these people had symptoms of muscle and joint pain, headaches, stomach and intestinal upset, and problems with memory, attention, and concentration. A diagnosis is made by a process of elimination since there are no physical signs or medical tests currently available to diagnose CFS.

During the first few years following the identification of CFS, much of the medical community and scientists held the belief that CFS was a psychosomatic manifestation of an underlying psychological disorder. Symptoms of CFS are similar to the neurasthenia seen and described by scientists over the past 200 years; these disorders have also been called neuralgia, chronic mononucleosis, myalgic encephalomyelitis, and post-viral fatigue.

CFS has been linked to Epstein-Barr virus and human herpesvirus 6; however, study results have not been conclusive and the presence of these viruses does not always result in the development of CFS. Depression has been a common diagnosis, with as many as 80% of people affected with CFS misdiagnosed.

A very large number of studies have been performed since 1984; most with inconclusive results. There are four studies that have been conducted in the past four years that stand out from the rest of the crowd:

The first study found that perforin, a protein found in natural killer cells and T cells, was much lower in people with CFS. Perforin is necessary to maintain a healthy immune system; a deficiency may contribute to the development of CFS, and the measurement of perforin may turn out to be a biomarker that can be used to diagnose CFS.

The second study found that the volume of gray matter in the brain was significantly lower in people with CFS. A positive correlation was found between the level of physical activity and the amount of gray matter; the lower the level of activity, the lower the volume of gray matter. The researchers concluded that the debilitating fatigue and memory, attention, and concentration problems experienced by people with CFS may be due to this change within the central nervous system.  

The third study was also concerned with the memory, concentration, and attention problems, and explored the similarity of these symptoms to people affected with D-lactic acidosis. Anaerobic bacteria in the gut produce high levels of lactic acid; levels of these bacteria were significantly higher in people with CFS with the result of higher levels of D-lactic acid. The researchers concluded that high D-lactic acid levels may also explain why mitochondria (the ‘power-house’ of cells) have been found to not function correctly in people with CFS. Measurement of D-lactic acid levels may prove to be of use as a clinical lab test for the diagnosis of CFS.

The final study held the belief that CFS is a condition caused by many factors. Cytokines are produced as a response to inflammation and their levels affect natural killer cell activity. Researchers found that cytokine levels are higher in people with CFS. T cells, which are involved in the immune response, are activated in abnormally high numbers, but lower levels of immunity at the cellular level were seen. A number of biomarkers were identified that are positively related to CFS; these biomarkers may possibly be used as a diagnostic test.

Other diseases were considered to be psychosomatic in the past before sophisticated diagnostic testing was developed and the underlying cause of the disease could be identified. Diabetes mellitus was considered to be a psychosomatic illness prior to the discovery of blood glucose and insulin and the negative effects an alteration in their balance had upon the human body. Scientific understanding of this disease was only possible once medicine and science had progressed and were able to develop sophisticated diagnostic testing methods.

Over 800,000 people in the United States and around 240,000 people in the United Kingdom are affected with CFS. The majority of the scientific community now acknowledges that CFS does actually exist. While scientists have not yet identified the underlying cause of CFS or a definitive diagnostic test; and still cannot agree whether CFS is an illness state or disease entity, those of us who are affected with this mysterious disorder can take comfort in the fact that scientists continue to search for answers to this mystery.


Daugherty SA et al. Chronic fatigue syndrome in northern Nevada. Rev Infect Dis. 1991 Jan-Feb;13 Suppl 1:S39-44. PMID: 1850542

Floris P. de Langea, Joke S. Kalkmanb, Gijs Bleijenbergb, Peter Hagoorta, Jos W.M. van der Meerc, & Ivan Tonia (2005). Gray matter volume reduction in the chronic fatigue syndrome NeuroImage, 26 (3), 777-781 DOI: 10.1016/j.neuroimage.2005.02.037

Griffith JP et al. A Systematic Review of Chronic Fatigue Syndrome: Don’t Assume it’s Depression. Prim Care Companion J Clin Psychiatry. 2008;10(2):120-8. PMID: 18458765

Lorusso L et al. Immunological aspects of chronic fatigue syndrome. Autoimmun Rev. 2009 Feb;8(4):287-91. Epub 2008 Sep 16. [doi] 10.1016/j.autrev.2008.08.003

Maher KJ et al. Chronic fatigue syndrome is associated with diminished intracellular perforin. Clin Exp Immunol. 2005 Dec;142(3):505-11. [doi] 10.1111/j.1365-2249.2005.02935.x

Sheedy JR et al. Increased d-lactic Acid intestinal bacteria in patients with chronic fatigue syndrome. In Vivo. 2009 Jul-Aug;23(4):621-8. PMID: 19567398

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Chronic Fatigue Syndrome – An Inside Look Tue, 04 Aug 2009 13:00:06 +0000 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.


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.

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Neglecting Unilateral Neglect Tue, 21 Jul 2009 13:00:15 +0000 Unilateral neglect (UN) is a debilitating cognitive deficit following traumatic brain injury with long-term implications to both the person affected and the health care system. In the United States, UN affects up to 200,000 stroke survivors, with the incidence and severity of UN increasing with age. However, UN is rarely recognized by the health care team and current post-stroke testing is not specific enough to provide for a definitive diagnosis of UN. As a result, people with UN are under-diagnosed and under-treated; or, when diagnosed and treated, do not receive adequate rehabilitation due to financial constraints imposed by the Medicare system.

UN is most common following damage to the right hemisphere of the brain from stroke; although illness or traumatic brain injury are also linked to the development of UN. When functioning normally, the right hemisphere of the brain is attentive to both sides of the world with a global focus and the ability for prolonged attention while the left hemisphere is attentive only to its opposite side with a centralized focus and shorter attention span.

The wide range and complexity of UN symptoms and the presence of other sensory or motor deficits due to stroke contributes to the high rate of missed diagnoses. A disorder of input and/or output, a person affected with UN will either completely ignore the side opposite to the brain injury or feel that side is totally unimportant; to the extent of not recognizing their own limbs. All deficits are more severe in those affected by UN following stroke and are more likely to be permanent than in people who do not have UN in conjunction with stroke.

People with UN are able to see, hear, and move but do not recognize, listen to, or understand their world. A person with input disorder, also called inattention, will ignore odors, sounds, touch, and sight on the side opposite to their brain lesion; this inattention may also include ignoring one side of hallucinations, dreams or memories. A person with output disorder will not use their limbs opposite to the lesion, despite having the ability to do so; or will only be able to move a limb within the recognized space, but not within the ignored space.

A person with UN will ignore the left side of their visual field, or will be able to see both sides but ignore the left half of each object within the visual field. They will only dress or care and protect one side of their body; will only eat food on one side of their plate; will only look to one side; will completely ignore objects or people on the affected side; or will walk into walls or furniture on the effected side. People are usually unaware of the presence of their deficits due to UN, unlike when other sensory and motor deficits are present following stroke.

Inpatient rehabilitation facilities receive a set amount of money from Medicare, based upon guidelines for each illness or disease. These prospective payment systems limit a patient’s length of stay regardless of their level of functioning upon discharge and have been found to have an impact upon the outcome of people with UN. A person affected with UN does not progress quickly during rehabilitation, requires a long time to recover, and is discharged with a low level of functioning. In addition, people with UN are less likely to return to their homes and live on their own following stroke, and have an increased risk for falls or other injuries.

People are now living longer; the incidence and severity of UN will continue to rise, straining an already overburdened health care system. UN has impacted the elderly today and will have an impact upon aging baby boomers in the very near future. Additional research is needed to ensure early and accurate diagnosis through appropriate testing methods; targeted and effective treatment modalities need to be developed; and the health care team must be educated to increase awareness of this often neglected complication of stroke. Modification of the prospective payment system within the current Medicare system is also needed that recognizes the increased rehabilitation requirements for this group of stoke and brain injury survivors.


Gillen R et al. The impact of the inpatient rehabilitation facility prospective payment system on stroke program outcomes. Am J Phys Med Rehabil. 2007 May; 86 (5): 356-63. doi:  10.1097/PHM.0b013e31804a7e2f

Gottesman RF et al. Unilateral neglect is more severe and common in older patients with right hemispheric stroke. Neurology. 2008 Oct 28;71(18):1439-44. doi: 10.1212/01.wnl.0000327888.48230.d2

Jepson R et al. Unilateral Neglect: Assessment in Nursing Practice. J Neurosci Nurs. 2008 Jun; 40 (3): 142-9.

Wee, J., & Hopman, W. (2008). Comparing Consequences of Right and Left Unilateral Neglect in a Stroke Rehabilitation Population American Journal of Physical Medicine & Rehabilitation, 87 (11), 910-920 DOI: 10.1097/PHM.0b013e31818a58bd

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