Rest, Pacing and Stress: What Every ME/CFS Patient Should Know

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Last Updated: 21 November 2015 21 November 2015

"Rest, Pacing and Stress: What Every ME/CFS Patient Should Know " by Sarah Myhill, MD. This article provides very helpful advice to patients on how to pace their activities to use and preserve their energy to stave-off relapses and promote recovery. The article recommends specific actions and guidelines to assist patients in their everyday life.

There are two points in the article which patients should notice. First, some of the guidelines are inflexible: it would be very hard to follow the suggestions as written. But if one takes the prescriptions as  flexible guidelines, then they are very constructive.

Also, Dr. Myhill mentions that ME/CFS patients have a "personality" that can make them sick in the first place. This is not proven and the reader should try to ignore the statement in light of the benefit of the overall article.

Finally, Dr. Myhill cites dysfunction in the mitochondria as a primary element in ME/CFS. She includes includes links for summaries of some of her journal articles.

In one article there is a mention of heart failure in ME/CFS. Heart failure, in the common understanding of the term, has not been shown in ME/CFS.

Summary and comments on the 2011 NIH videocast "Demystifying Medicine - Chronic Fatigue Syndrome: Is there a virus?"

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Last Updated: 25 November 2015 25 November 2015

“Chronic Fatigue Syndrome: Is there a virus?” was a course presented as a live lecture on February 22, 2011—part of the Demystifying Medicine 2011 series sponsored by the National Institutes of Health (NIH). According to the NIH, these courses are “designed to help bridge the gap between advances in biology and their application to major human diseases.” These programs include a wide variety of topics and are intended primarily for medical students, fellows, clinicians and healthcare professionals as well as those seeking academic credit. After the program has aired, the recorded videos are available for viewing at the NIH website. [2015 editorial note: The video is no longer available, but some of the slides are. See below.]

This lecture, approximately 2 hours long, was created to help “demystify” recent research, share current thoughts and discuss future plans regarding a virus (more specifically, a retrovirus) and its association with CFS. The three key speakers were Drs. Shyh-Ching Lo, a scientist from the Food and Drug Administration (FDA) with a long history in mycoplasma research, Harvey Alter, a senior NIH investigator who is recognized for his work with hepatitis, and Fred Gill, Chief of Internal Medicine Consultation Services at the NIH Clinical Center.

Introduction by Dr. Alter

Dr. Harvey Alter provided background information about research developments surrounding CFS, more specifically, studies over the last couple of years which have sparked a lot of interest and hope as well as much debate. The first part of his presentation starts at the 5 minute point, lasting for about 15 minutes, during which he goes over the initial XMRV discovery and subsequent studies—it is brief but informative. Dr. Alter speaks again at the end of this program and discusses a study that will take place in the near future (within next 6 months), which in his opinion, should settle the XMRV debate. [2015 editorial note: The study did settle the controversy in 2012. The detection of XMVR was the result of lab contamination of samples in labs that also had mice.] (Dr. Alter's slides are available separate from the videocast at http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Alter.htm)

First speaker, Dr. Fred Gill

Prior to Dr. Gill’s presentation, one of his patients spoke about her rapid onset and experience with CFS.  Out of respect for a fellow person with ME/CFS, we are not including any part of her testimony and applaud her courage and honesty.

Dr. Fred Gill began his part of this course by stating the thoughts and viewpoints he would be sharing represents the “party-line/ CDC, NIH” community. It sounded like one of those situations when someone tries to convince an audience that he “gets it” while saying how many others don’t or uphold even worse opinions.

Having said so, a good deal of the information presented by Dr. Gill was outdated, including his point that CFS is a “real illness.” Whether CFS is a real illness was severely questioned during the 1990s and early 2000s by the NIH and CDC. At this point the debate should be over—it is a real illness. In tracing the “supposed” history of CFS, he reverted back to the assumption that the “neurasthenia” of 1869 (termed by Dr. Beard) was an early form of CFS (i.e. a type of nervous exhaustion). Although this has been stated before, it seems only an inept speculation based on superficial symptoms which morphed over time into some vague psychiatric category. In his presentation of his case the patient’s history was sloppily told. The patient presented a straightforward account of her illness with many potential teaching aspects almost completely missed by Dr. Gill.

When discussing the diagnostic process, Dr. Gill stated that routine blood work such as a blood count, sedimentation rate, chemistry screen, and TSH levels are the only recommended tests. He stated that advanced studies (i.e., to check immune system, viral loads, or orthostatic hypotension), based on his own experience and findings by the CDC, were found not to be worthwhile and are not recommended. 

He further stated there has not been any proven association of CFS with earlier viruses (like Epstein Barr Virus and other HHV (human herpes viruses)) nor are there any documented differences in patients with CFS and healthy controls as far as orthostatic intolerance (OI) goes.

Despite these symptoms being part of 1994 diagnostic criteria (which Dr. Gill favors), he specified that fever can only be acknowledged if/when it goes over 100.3F; lymph nodes might be painful, but rarely present as lymphadenopathy; and joints and muscles might also be painful, but they don’t limit motion. Dr. Gill described patients with CFS as being previously highly functioning individuals who come with subjective features of CFS which tend to fluctuate over time.

His recommendations are Cognitive Behavioral Therapy (CBT) and graded exercise therapy (GET) as two of the most beneficial treatments for CFS and to support this, he cited the recent UK-published PACE study as objective proof that CBT and GET do work. In response to one of the questions during the Q&A session on epidemiology, Dr. Gill thought CFS is more dominant in affluent and educated societies, but said there were no solid studies.

It would be an understatement to say that the information presented about CFS by Dr. Gill for a significant portion of this course (about 45 minutes), was very deficient and much of it could be regarded as “disinformation,” especially given the targeted audience of medical students and providers.

Second speaker, Dr. Shyh-Ching Lo

Dr. Lo’s presentation starts at the 65 minute point into this course and lasts for about 40 minutes. His material was highly technical and might be found too detailed by the average person to fully comprehend, but it definitely provided great insight about how XMRV / MLV tests were conducted and what might have led to the discrepancies in results of other studies. Unfortunately, the videocast of this course did not show any of his slides  and many of the captions contained errors in the words/terms used or they were completely omitted. However his slides can be viewed separately at http://demystifyingmedicine.od.nih.gov/DM11/02-22-2011/2011-02-22-Lo.htm.

Dr. Lo went over various testing techniques used in his study with Dr. Alter.

Dr. Lo reported their study found that the gag and env sequences from CFS patients were more closely related to polytropic mouse endogenous retroviruses than to those of XMRVs.  He recommends the use of highly sensitive assays, like mitochondrial sequencing.  He further pointed out that the CDC had used a mitochondrial sequencing technique different from the Lo/Alter study, which in Lo’s opinion, affected the sensitivity of the test.

Other XMRV studies were reviewed and reasons were given for different results such as geographic region, patient groups, mixture of different disease in groups, variations in PCR protocols used, the kits used for testing and amplification of signals, preparation and processing of tests, and tissues that most likely were contaminated with mouse DNA.  Dr. Lo repeatedly defended the Lo/Alter study results for their accuracy. They also detected differences in titers, which were found lower in patients who were in the ‘wax and wane’ stages. Lastly, Lo stated that disease association with test results is not yet known.

Conclusion by Dr. Harvey Alter and upcoming NIAID study to end XMRV debate

Dr. Alter concluded the course by raising questions about etiology—is CFS linked to a virus/ viral agent?  Did the diversity of sampling sites or potential contamination outside of the study sites (where specimens were drawn or something different about the patients themselves, like common treatments they had received) create the mixed results?

Dr. Alter reported on an upcoming study, sponsored by the National Institute of Allergy and Infectious Disease (NIAID) and headed by Dr. W. Ian Lipkin, which is designed to resolve the XMRV debate.

This study will include a large population of “classic cases” of CFS, using the Canadian criteria (patients who had an acute onset). Samples will be sent to Dr Lipkin’s offices where they will be prepared and coded in triplicate. Panels will be developed and sent to those labs where patients were previously tested for XMRV. Each lab will use their own assays and submit their coded results. The codes will be broken at the coordinating center.

The results will be published either way. If these tests are all negative, the conclusion will be that "the original findings will be considered unconfirmed."  If, on the other hand, the results do show that the virus can be consistently detected in patient samples but not in controls, or in different ratios in patients vs. controls, then the original findings will be considered to have been confirmed. 

This data should be available within the next 6 months. If an association is confirmed, this does not establish causality.  Further work will be required to look at that question.

[2015 editorial note: The tests were all negative, so the original findings were considered to be unconfirmed. See Dr. Komaroff's impression given to MassCFIDS in late 2011 and the report of the definitive study in 2012.]

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.