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NIH: time for real scientists to study ME/CFS

The US National Institutes of Health (NIH) has announced several measures to boost research into ME/CFS, although full details of its proposal and funding allocations are yet to be released.

Broadly, a multi-institute study at the NIH Clinical Center will begin, focusing on patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) who have had rapid onset of symptoms.

Also, the Trans-NIH ME/CFS Research Working Group will shift from the Office of Research on Women’s Health. No single NIH institute, office or center will have single oversight for research on ME/CFS. 1

With regard to the measures, NIH Director Francis S. Collins said: “I am hopeful that renewed research focus will lead us toward identifying the cause of this perplexing and debilitating disease so that new prevention and treatment strategies can be developed.”

UK psychiatrists lack the right skillset says Collins

Some ME/CFS patients see this latest NIH announcement as signaling a US shift away from the UK’s psychiatric focus on the illness, triggered in part by the distorted media coverage and corresponding patient backlash in that country after the publication of a follow up evaluation of patients involved in the 2011 PACE trial.

NIH Director, Francis S. Collins, M.D., Ph.D.
NIH Director, Francis S. Collins, M.D., Ph.D.

According to the authors of the PACE trial, cognitive behavioral therapy is an effective treatment for ME/CFS, one that could return patients to a normal life, an assertion that has been widely condemned in several recent reviews, notably by journalist David Tuller and James Coyne, Professor of Health Psychology at the University Medical Center, Groningen, the Netherlands.

After the NIH announcement, Collins reached out to ME/CFS advocate and former science writer for the Washington Post, Brian Vastag and they spoke briefly about the UK situation.

Vastag later posted details of that conversation on a public forum: “As an aside: I mentioned the problems in the UK, saying that psychiatrists had hijacked ME/CFS. Collins said, ‘They don’t have the right skillset.’ That’s a political way of saying: Uh, yeah, it’s time for real scientists to study this thing.”

Vastag recently conveyed a passionate appeal to Collins for increased funding for ME/CFS research in which he noted: “On the list of illnesses the NIH studies, ME is near the bottom in funding, ranked 231 out of 244. “It received $5 million in 2014, less than hay fever, which cripples no one.”

NIH to focus on subset with rapid onset of symptoms

NIH will design a clinical study in the NIH Clinical Center with plans to enroll individuals who developed fatigue following a rapid onset of symptoms suggestive of an acute infection. The study will involve researchers from NINDS, the National Institute of Allergy and Infectious Diseases, National Institute of Nursing Research and National Heart, Lung, and Blood Institute.

The primary objective of the study is to explore the clinical and biological characteristics of ME/CFS following a probable infection to improve understanding of the disease’s cause and progression.

NINDS Director Walter J. Koroshetz, M.D., will chair the Working Group along with Vicky Holets Whittemore, Ph.D., the NIH representative to the U.S. Department of Health and Human Services’ Chronic Fatigue Syndrome Advisory Committee.

More than 1 million Americans affected

NIH’s latest shift on ME/CFS is being guided by a recent Institute of Medicine report, that recommended new diagnostic criteria and a new name for the disease (Systemic Exertion Intolerance Disease), and an NIH-sponsored Pathways to Prevention meeting that generated a position paper and report with recommendations for research strategies.

According to the Centers for Disease Control and Prevention, ME/CFS is estimated to affect more than 1 million Americans, and has been reported in people younger than 10 years of age and older than age 70. ME/CFS is an acquired, chronic multi-system disease characterized by systemic exertion intolerance, resulting in significant relapse after exertion of any sort.
 
 

01000000+

People with ME or CFS in the USA

The disease includes immune, neurological and cognitive impairment; sleep abnormalities; and dysfunction of the autonomic system, which controls several basic bodily functions. These symptoms result in significant functional impairment accompanied by profound fatigue. Additional symptoms may include widespread muscle and joint pain, sore throat, tender lymph nodes and headaches.

Effects of the illness can range from moderate to debilitating, with at least one-quarter of individuals with ME/CFS being bedbound or housebound at some point in the illness and many individuals never regaining their pre-disease level of functioning. Because the pathology of ME/CFS remains unknown and there is no test to diagnose the disease, studies to date have used different criteria for diagnosis, which has limited the ability to compare results across studies. Additionally, many of the published studies are based on small study populations and have not been replicated.

About the NIH

NIH, the nation’s medical research agency, includes 27 Institutes and Centers and is a component of the U.S. Department of Health and Human Services. NIH is the primary federal agency conducting and supporting basic, clinical, and translational medical research, and is investigating the causes, treatments, and cures for both common and rare diseases. For more information about NIH and its programs, visit www.nih.gov.

  1. Edit: An earlier version of the article noted that the Trans-NIH ME/CFS Research Working Group will move to the NINDS.  The statement:  No single NIH institute, office or center will have single oversight for research on ME/CFS. is more correct.
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Written by Russell Logan

Russell Logan worked as a magazine publisher and editor until forced into early retirement through ill health with ME. He has battled with moderate to severe ME for 25 years. He now lives in Noosaville, Australia.

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  1. In the past few years there has been some serious changes that have occurred in the US approach to M.E. While the XMRV research led nowhere (though nothing has actually been disproved), research scientists who for the first time noticed “CFS” realized it was not the silly disease of silly women that had been portrayed by NIH and CDC. We had good scientists and good universities working on our disease before, but their institutions had disapproved of it – and in several cases, the researcher quit working on it because it might cost them their position. There was a reason for that – large universities live on grant money, and CFS research didn’t bring in any grants.

    Now, however, we have at least two top US universities, Columbia and Stanford, who have top researchers involved in the biomedical parameters of “ME/CFS” (as NIH now calls it) – and their institutions are backing them up. This time the universities are not upset with the researchers for focusing on a stupid topic – this time they want to know why NIH isn’t coughing anything up for what is increasingly obvious: “ME/CFS” is a significant, life-altering and life-threatening disease that will in the end change the way we think about body systems. They are no longer displeased they have researchers working on this – but they want to know why NIH isn’t funding them.

    The sad case of Ron Davis’ son has propelled him into the mainstream, determined to find an answer, and he is a highly respected geneticist. That has helped us as well (and I hope they can find some way to help the young man).

    The IOM and P2P reports, while not as thorough as I had hoped (they were both rushed and they insisted on using amateurs) have both turned out better than I had expected and – I suspect – better than NIH and HHS had planned. There is work to be done.

    Finally, as more attention begins to be paid to the disease, it is hard to escape the harsh reality: 25 years after CDC adopted the idiotic name “Chronic fatigue syndrome,” there are at least 850,000 adults out there with a very serious disease, and they have no idea what’s wrong with them. There is no other way to look at it except as a terrible failure on the part of the agency that is charged with “disease control and prevention.” Had they been at work when they were supposed to – for example – Ron Davis’ son would not still be sick.

    We all knew that once serious scientists really LOOKED at this disease, they would realize how important it is. It has just taken far too long for that to happen. I hope this is the turning point we have been waiting for.

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