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We Aren’t In Kansas Anymore: Chronic Fatigue Syndrome & the Politics of Disease
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- Last Updated: 07 December 2015 07 December 2015
We Aren’t In Kansas Anymore: Chronic Fatigue Syndrome & the Politics of Disease by Rik Carlson, founder of the Vermont CFIDS Association, is both an easy read and a very informative book. All ME/CFS or FM patients should read it because they will be able to relate to the author, while non-patients may find it difficult to follow mainly because they have no way of understanding and feeling the symptoms Carlson describes so well. At times Carlson uses salty language but it is not offensive.
This book takes the reader on a trip through the ME/CFS world from many perspectives. Carlson beautifully captures the framework from the point of view of the patient, initially getting ill and not being able to function, expecting to recover and not being able to recover, through to the political stage and explaining how advocacy plays such a major role in medical care. During this time, he kept careful logs on what he tried, what was working for him, and what was not. Carlson employed anything that would help him—from pills to supplements—and shares that in the book. He also writes how important it was to have tremendous family support along the way.
In this book he is able to put into words what so many patients feel but can’t express: the day-to-day struggle of surviving, controlling pain, cognitive impairments, fights with the medical system, fights with the insurance system, the disability system, and finally, the hope of getting better.
When Carlson finally received a diagnosis, he set out on his own to learn all he could about the illness and what treatments were available. Using the narrow window of cognitive time he had on some days, he used his computer to do research about ME/CFS. While telling his own story, he manages to successfully integrate the history of ME/CFS in the USA from the 1980’s to current times, the historical stance the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health (NIH) took on ME/CFS, as well as the overall political system of inertia.
The first two chapters give us autobiographical information about Carlson. He then weaves together his background as a business man, his ride into ME/CFS territory, the rollercoaster of symptoms he faced, the problems within the medical community as to whether it is real or not, and his understanding of the big picture. Carlson, to date, is still ill but has learned to live within his envelope of energy.
The Issue of Illness "Reversal" and the PACE Trial
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- Last Updated: 20 November 2015 20 November 2015
IACFS/ME Statement on the PACE Trial, reprinted with permission
[The IACFS/ME is the International Association for CFS/ME—an international association of researchers into ME/CFS]
by Fred Friedberg, PhD
President, IACFS/ME
February 24, 2011
The much publicized UK-based PACE trial (Lancet, Feb. 18th; see full text of article) reported positive outcomes for patients with CFS/ME who were treated with cognitive-behavior therapy (CBT) or graded exercise therapy (GET) in comparison to a standard medical care condition or an adaptive pacing condition. The adaptive pacing condition was intended to help patients adjust their activity levels according to their available energy (based on envelope theory). The findings were similar to previous CBT and GET studies in CFS. This trial was unique in incorporating a pacing condition and recruiting a very large sample. That said, we have concerns about how the trial was reported.
We certainly support any effective treatment for CFS/ME, medical or behavioral. Behavioral interventions are helpful for a number of major medical conditions (cardiovascular disease, diabetes).
Illness “reversal” and behavioral intervention
The most fundamental concern we have is focused on the type of causal model that was linked to the CBT and GET conditions in this study. The model, based on the application of cognitive-behavioral and physical conditioning principles, predicts that properly designed behavioral or exercise interventions will “reverse” the CFS illness. Not improve symptoms/functioning or provide better management, but “reverse” the illness. This term implies that the illness can be cured (or something close to it) with behavioral techniques.
If one assumes such a direct correspondence between behavioral treatment and curative outcomes, then the illness is by implication a psychiatric condition. Once this assumption is made, then research efforts to assemble a biomedical model of CFS are more likely to be delegitimized. And the public’s perception of the illness as simply being tired is again reinforced. Perhaps this is the most unfortunate aspect of the PACE trial: The omission of any reference to the medical complexity of this illness.
Furthermore, when one compares the study goal of illness “reversal” to the reported outcomes, the support for such reversal is modest at best: 30% of GET and CBT patients achieved normative physical functioning—but the 30% figure was in comparison to 15% who achieved such normative function in the standard medical care control condition.
Thus a more accurate statement of this finding would be: An additional15% of patients in the CBT and GET conditions achieved normal functioning in comparison to standard medical care. The critical standard of clinical significance is that a therapy results in restoration of normal function. But their own data do not support reversal outcomes above and beyond standard medical care for the vast majority of their subjects in the CBT and GET conditions.
Question of CFS/ME diagnosis
In addition, the 15% advantage over standard care for patients in CBT and GET can be further questioned given that at least 1/3 of all patients did not meet the strict international criteria for CFS (Table 1 in study)—the diagnostic protocol most often used in published studies. Strict criteria for CFS are linked to poor prognosis and conversely, subjects who don’t meet strict criteria for CFS have better outcomes. So the PACE trial folded in a significant number of subjects who do not have CFS according to standard criteria. Again this dilutes the significance of their findings as it makes it more difficult to generalize to the population of people who do have CFS.
To put behavioral approaches in context—they can be quite helpful, but they hardly meet the standard of clinical significance that would elevate them to curative interventions. If this had been made clear in the study, it would have provoked far less controversy and debate.
Media mis-reports
Finally, the media message from this study has often been: “Exercise is good; Rest is bad.” Although the PACE trial authors did not issue such a statement, I think there is some responsibility to explain to the media that this type of recommendation is simplistic and potentially harmful for patients with CFS/ME. Activity and exercise recommendations must be based on a thorough evaluation and a sensitive individualized approach, not the broad brush that has become the take home message of this study.
Fred Friedberg, PhD
President, IACFS/ME
Numerous, unique proteins found in CFS compared to chronic Lyme Disease
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- Last Updated: 25 November 2015 25 November 2015
February 2011 ended with considerable buzz in the media regarding the discovery of distinctive proteins in the cerebrospinal fluid of Chronic Fatigue Syndrome (CFS) subjects.
CFS patients were compared to healthy controls and to individuals who had been previously treated for Lyme Disease (LD). LD was chosen for comparison due to two symptoms such patients share with CFS patients—fatigue and cognitive dysfunction—which, according to the study, has made it difficult to tell the two illnesses apart. The study was led by Dr. Steven Schutzer at the University of Medicine and Dentistry of New Jersey and the combined efforts of researchers from multiple departments at the University of Medicine and Dentistry of New Jersey; State University of New York, NY; Albert Einstein School of Medicine, Bronx, NY; Columbia University Medical Center, New York, NY; Pacific Northwest National Laboratory, Richland, WA; and Uppsala University, Uppsala, Sweden.
Their collective research yielded an in-depth description of proteins which are distinct to CFS—actually, many hundreds of proteins were detected and determined as being clearly unique for each disease. This data may advance the science that will eventually be able to explain the pathogenesis of CFS. “Distinct Cerebrospinal Fluid Proteomes Differentiate Post-Treatment Lyme Disease from Chronic Fatigue Syndrome” was released by Schutzer, et al, on an open-access journal, PLoS ONE, Vol. 6, Issue 2, e17287.
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Notice about names
The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS.
Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.