ME/CFS Primer/Education Newsletters Volume 10, Issue 3 • August 2017

Volume 10, Issue 3 • August 2017

August 27, 2017
IACFS/ME Newsletter
Volume 10, Issue 3 – August 2017
Editor Alison C. Bested MD FRCPC
 

Contents


IACFS/ME President’s Letter

Dear Members and Colleagues,

Since my last letter, there have been some positive developments. As of this writing, it appears that funding for the National Institutes of Health (NIH) will not be cut; instead, a draft spending bill in Congress allows for a 3% increase, which is modest, but certainly a welcome change in direction. Also about 10 grant applications were recently reviewed at NIH for the new $6 million collaborating research centers for ME/CFS. So we have new expanded research possibilities on the horizon with the funding of the new centers, likely to begin in 2018.

ME/CFS Funding at NIH and the Need for New Scientists

Cort Johnson has written a well-researched and thoughtful article on the history of the CFS grant review committee at NIH.

As reported by Cort, we have seen major changes in the CFS grant review committee since its inception in 1999. The good news is that the percent of funded ME/CFS applications has gone up considerably since 2010, averaging about 30% annually over the past five years. This is much higher than NIH application averages overall (about 15%). However, the annual number of ME/CFS grant applications submitted to NIH has declined precipitously from the forties in the 2000s to about 20/year since 2010. This is a very small number of applications for an illness this complex and challenging. Bottom line: We need many more new researchers to enter the field to accelerate progress toward understanding and treating ME/CFS. With an increasing number of scientists, more grant applications will be submitted and more projects will be funded.

The PACE Trial: New peer review commentaries

The July issue of the Journal of Health Psychology contained a series of mostly critical commentaries on the controversial PACE trial, a large randomized trial of behavioral interventions for ME/CFS that reported good success for graded exercise therapy (GET) and cognitive-behavior therapy as compared to control conditions. (Mary Dimmock also reports on this in the newsletter below.)

The critical commentaries focused on overstating the effectiveness of the PACE trial, the changing of criteria for improvement that favored better outcomes, conflicts of interest of the trial authors, and many other criticisms. The PACE trial authors defended themselves point by point in one of the articles. As these arguments have been aired many times in other forums (including our Association journal), I will simply refer interested readers to our journal and the Journal of Health Psychology for further reading.

Adverse Impact on Research of the PACE Trial?

To me, the most misleading and damaging aspect of the PACE trial was contained in the subsequent reporting of “recovery” outcomes for a small minority of patients in the original trial. As a full restoration of health is rare in this illness, the publicity generated by the reporting of such inflated outcomes has led to the erroneous conclusion that simple behavioral interventions such as GET is all that these patients need. This can have the effect of delegitimizing the illness even more and may discourage biomedical research on ME/CFS.

We have one possible indication of this negative effect: I outlined above the roughly 50% decline in NIH grant applications on ME/CFS since 2010; Note that the PACE trial was published in 2011. Is this a coincidence or a possible negative impact of trial publicity lessening scientific interest in developing new grant proposals to study the illness? More generally, misleading reports that inflated the benefits of the PACE trial, which were widely cited in the mass media at the time, may have further undermined illness credibility with the research community. It’s impossible to make definitive conclusions about this, but the full and ongoing airing of the shortcomings of the PACE trial is certainly a welcome development.

Newsletter

A big thank you to Alison Bested, our new newsletter editor, for taking over this important responsibility. Our newsletter is published 3x a year. We welcome your commentaries, letters, and reports on ME/CFS related activities and events.

With best regards,

Fred Friedberg, PhD
President
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)
www.iacfsme.org


Welcome Message from the Editor

Welcome to summer 2017!

This newsletter will cover a wide variety of topics including the 2017 Invest in ME Conference, our IACFS/ME Conference, difficulties with problematic ME/CFS research, specifically, the PACE trial and the latest research abstracts.

Read Dr. Ros Valling's Summary of the June 2017 Invest in ME Conference:

“I was privileged to attend the 12th Invest in ME International Conference on 2nd June in Westminster, London. This followed a 2-day colloquium where many of the top International ME/CFS researchers had gathered to discuss their work. At the conference, there was a full day of presentations by a wide range of International speakers on a variety of associated topics.”

Read the Report.


Recent Commentaries on the PACE Trial

PACE Update

Author: Mary Dimmock

Following a 2016 article by Dr. Keith Geraghty describing the flaws of the PACE trial, the Journal of Health Psychology solicited commentary from both sides of the PACE trial debate. The result was an August 2017 Special Issue on the PACE Trial of 19 peer-reviewed articles providing differing perspectives on PACE. In his editorial introducing the special issue, editor David Marks stated the PACE debate “reveals an unwillingness of the co-principal investigators of the PACE trial to engage in discussion and debate.” Further, he noted, it “leads one to question the wisdom of such a large investment [£5million] … on what is a textbook example of a poorly done trial.” Marks concluded “ME/CFS research has been poorly served by the PACE Trial and a fresh new approach to treatment is clearly warranted.” This is the first time that a journal has taken such a significant position on the PACE trial.

The special issue of The Journal of Health Psychology can be found here.

Cytokine Research Update

The research from Dr. Montoya’s group is very encouraging because it shows further evidence that ME/CFS is a physical illness with inflammation present in the body of patients with ME/CFS. Using cytokine testing to evaluate, there were “17 cytokines that correlated with severity (of the patients’ illness)”, the majority of which “(13) were proinflammatory cytokines likely to contribute to many of the patients’ symptoms”.

Congratulations to Dr. Montoya and his wonderful research team! Read the article.

All the best to you and yours,
Alison

Alison C. Bested MD FRCPC
Editor
International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME)

www.iacfsme.org

Board Activities

Proposals for modifications to the US ICD-10-CM submitted in July 2017: Board member Lily Chu and Mary Dimmock, with the input of IACFS/ME Board and other members, submitted to the US Centers of Disease Control and Prevention's National Center for Health Statistics our recommendations for the ICD-10-CM. As many of you know, ICD-10 coding not only affects provider reimbursement and health insurance coverage for care for patients in the USA but also may provide information on the epidemiology of ME/CFS and influence healthcare resource planning and research funding. Lily and Board member Jon Kaiser also wrote about these issues in the December 2015 Newsletter.

The Board proposed the following:

a) Removing “Chronic fatigue syndrome, NOS” from R53.82 "Chronic fatigue, unspecified", in the Symptoms and Signs chapter

b) Adding “Chronic fatigue syndrome” to the neurological chapter at G93.3

c) Modifying the G93.3 title term to “Postviral fatigue syndrome, Chronic fatigue syndrome, and Myalgic encephalomyelitis”

d) Adding separate G93.3 subcodes for the terms “Chronic fatigue syndrome,” “Myalgic encephalomyelitis,” and “Postviral fatigue syndrome” (i.e. G93.30, G93.31, G93.32)

e) Revising existing exclusions as needed and adding exclusion for “chronic fatigue.”

f) Removing the word “benign” from “benign myalgic encephalomyelitis” so the term used is “myalgic encephalomyelitis”

See this link for details. The NCHS meets in September of 2017 to discuss and we hope that our submission will be selected for discussion.

 


Opinion Corner

GETSET Study

In June 2017, researchers from the UK published the GETSET study, which found that graded exercise, delivered as guided self-help, was both safe and “improved symptomatic fatigue and physical functioning.” Dr. Todd E. Davenport of The University of the Pacific and the Workwell Foundation has reviewed the study and found problems similar to that seen in PACE – lack of objective measures, problems with patient selection and a strong bias toward psychological over biomedical explanations. Further, Davenport noted that only 42% of patients received even a moderate amount of treatment, but the authors failed to assess the impact of treatment adherence on treatment effect. Finally, he questioned the authors’ interpretation of improvement as clinically meaningful, particularly since the level of change specified as “clinically meaningful” for the Chalder scale was significantly less than the change required for lupus and rheumatoid arthritis. Davenport concluded that GETSET is another “false start” to the clinical trials that the field really needs.

Davenport’s full review can be read here.


Research

Summer 2017 Abstract Round-up: Thank you to Dr. Ros Vallings for compiling interesting abstracts published over the summer of 2017 here.


Events and Announcements

Educate your Government Representative:

Has your government representative ever heard of ME/CFS? How much do they know (or don't know)? Consider contacting them to educate them about ME/CFS and how it impacts you, as patient, caregiver, supporter, researcher, or clinician. Members of the Board and IACFS/ME have contacted their government representatives over the years to educate their representatives about what ME/CFS is, its public health impact, the need for increased research funding, and patients' desperate search for knowledgeable, sympathetic care.

Recently, in the US, advocates compiled a list of 45 Senators, out of 101 total, who have been contacted in the recent past about ME/CFS. See the list here. If your Senator is on this list, contact them to tell your story and thank them for their support. If he/ she is not on this list, then it's doubly important to contact them! Even if you are not totally versed on what you "should" say, what can/ should be done, the latest science, etc., elected representatives pay attention to what their voters value and will look at any documents or news twice in the future that contains the words "ME/CFS". To find contact information, look here for US Representatives and here for Senators. Across time, multiple contacts by different people from different groups pays dividends. A short phone call or e-mail takes only a few minutes. If you would like to write about your experience contacting your representative in a future edition of this Newsletter, write us at Newslettereditor@iacfs.org.

These tactics apply to any democratically-elected government outside the US as well.

A Tribute to Dr. Bruce Carruthers

 

 

It is with sincere sadness, I learned of Dr. Bruce Carruthers recent passing. Bruce was a brilliant man, who was so loved by all who knew him. As a Physician, Friend and Colleague I shared in many memories with him over a thirty-year history. There was no finer, caring or compassionate Physician, and those who shared their stories with him, found a kind and gentle listener; who not only believed them, but did everything he could to help them! This included coming out of retirement more than once to continue to treat and support his patients!

His legacy leaves many years of dedicated research, medical care, published writings, teaching both medical and yoga students, and being a stellar member of the human race! His presence may have left us, but his work lives on. I know he takes with him the love, appreciation and respect of all who know just how very special a man he was!

My Condolences to his family, his friends and his Patients; for we know how very fortunate we were to have known this great and wise man, and have him in our lives! RIP Bruce. You Will Never Be Forgotten!

Sherri Todd
BC Director - The National ME/FM Action Network

July 31, 2017 | Coquitlam, BC


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