Moving Toward Answers in ME/CFS

Woman in bed

Thinkstock/Katarzyna Bialasiewicz

Updated September 27, 2017: The National Institutes of Health (NIH) will award four grants to establish a coordinated scientific research effort on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The total cost of the projects for fiscal year 2017 will be over $7 million, with support from multiple NIH Institutes and Centers that are part of the Trans-NIH ME/CFS Working Group.

The grants will support the creation of a consortium made up of three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC). The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS. The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.


Imagine going to work or school every day, working out at the gym, spending time with family and friends—basically, living your life in a full and vigorous way. Then one day, you wake up, feeling sick. A bad cold maybe, or perhaps the flu. A few days pass, and you think it should be over—but it’s not, you still feel achy and exhausted. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are forced to leave your job or school and are unable to participate in any of your favorite activities; some days you can’t even get out of bed. The worst part is that your doctors don’t know what is wrong and nothing seems to help.

Unfortunately, this is not fiction, but reality for at least a million Americans—who suffer from a condition that carries the unwieldy name of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a perplexing disease that biomedical research desperately needs to unravel [1]. Very little is currently known about what causes ME/CFS or its biological basis [2]. Among the many possibilities that need to be explored are problems in cellular metabolism and changes in the immune system.

A number of studies suggest that abnormalities in cellular metabolism, a complex biological process that the body uses to create energy [3][4][5], may underlie ME/CFS. A recent study of metabolite pathways in blood samples from people with ME/CFS reported a signature suggestive of a hypometabolic condition, similar to a phenomenon biologists have studied in other organisms and refer to by the term “dauer” (a hibernation-like state) [5]. A number of other studies have suggested that changes in the immune system may play a causal role in ME/CFS [6][7][8], either due to a post-infectious autoimmune process or due to a unknown chronic infection.

To date, most studies in ME/CFS have looked at relatively small numbers of people with ME/CFS and employed different methods—and rarely has a finding been replicated. Given the heterogeneity of the illness and complexity of the assays, rigorous confirmatory studies in larger groups of people with ME/CFS are necessary to provide the evidence base for effective therapy development. ME/CFS, as much as any other disorder, is in need of a concerted effort by the scientific community to understand its biological basis.

The NIH is committed to stimulating additional research to reveal the causes of this debilitating disease. ME/CFS is such a complex condition, affecting so many body systems, that we do not know where the answers will come from. Informed by results from a 2014 ME/CFS workshop [9], NIH initiated a call to action to all of its relevant Institutes and Centers in October 2015. The resultant NIH research effort, led by Trans-NIH ME/CFS Working Group, leverages an impressive scope of expertise across the NIH to attack this research gap.

The Trans-NIH ME/CFS Working Group recently solicited research applications to seed a nationally coordinated approach to understand the cause(s) and mechanisms of ME/CFS. In January, NIH issued two Funding Opportunity Announcements (FOAs). These FOAs seek to establish a research consortium for ME/CFS research, including a coordinating center to facilitate collaborative science among the sites and enable widespread data sharing. The consortium will provide a foundation upon which rigorous ME/CFS research can build to make new discoveries, validate research findings, and attract new investigators from various disciplines to study ME/CFS.

The research consortium is just a first step toward growing an innovative and vigorous research community to focus on this disease. The NIH is always open for other scientists to submit research grants on ME/CFS, and most NIH funding goes to these regular grant proposals, which are reviewed on a three times per year cycle. In addition, a variety of other research initiatives were recently launched. The NIH awarded seven Administrative Supplements to expand ME/CFS research in current grants. These projects use state-of-the-art technology to pinpoint genes that may be involved in the disease and to reveal how specific immune cells play a role in ME/CFS. Some of these projects will zero in on potential biomarkers, which are desperately needed to help with diagnosis and for tracking disease progression. Descriptions of these awards can be found at: https://www.nih.gov/mecfs/funding.

The NIH is also initiating ME/CFS research at the NIH Clinical Center in Bethesda, MD. Led by Dr. Avindra Nath, an expert in neurovirology and infections of the nervous system, dozens of investigators from seven of NIH’s Institutes and Centers will carry out an extremely detailed and comprehensive evaluation of several dozen people with ME/CFS, focusing on those whose symptoms can be clearly traced to an infectious-like illness and who have been sick for less than five years. These volunteers will undergo a comprehensive battery of tests, including blood draws and brain scans, to help researchers learn more about the clinical and biological features of this disease.

One of our goals is to improve communication about these research efforts to individuals with ME/CFS and advocates who have been affected by this devastating disease. We host regular telebriefings, which enable NIH staff to update the community on our activities and provide ME/CFS stakeholders with an opportunity to ask questions and offer their perspectives. You can learn about NIH’s ME/CFS-related efforts and briefings by visiting the ME/CFS website at www.nih.gov/mecfs. If you would like to receive periodic updates from NIH by email, please visit the ME/CFS website and click on “Join our listserv.”

We recognize and empathize with the suffering experienced by people with ME/CFS and their frustration that so little is known and so little research has been done to find answers. We aim to change that. The NIH is committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition.

Note: Walter Koroshetz, M.D. is Director of the National Institute of Neurological Disorders and Stroke (NINDS), NIH; Francis Collins, M.D., Ph.D., is the Director of the National Institutes of Health (NIH).

References:

[1] Beyond myalgic encephalomyelitis/chronic fatigue syndrome: Redefining an illness. Institute of Medicine. Washington, DC: The National Academies Press. 2015.

[2] Workshop Resources, NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Office of Disease Prevention, NIH. 2014 Dec 9-10.

[3] Metabolic profiling indicates impaired pyruvate dehydrogenase function in myalgic encephalopathy/ chronic fatigue syndrome. Fluge Ø, Mella O, Bruland O, Risa K, Dyrstad SE, Alme K, Rekeland IG, Sapkota D, Røsland GV, Fosså A, Ktoridou-Valen I, Lunde S, Sørland K, Lien K, Herder I, Thürmer H, Gotaas ME, Baranowska KA, Bohnen LM, Schäfer C, McCann A, Sommerfelt K, Helgeland L, Ueland PM, Dahl O, Tronstad KJ. JCI Insight. 2016 Dec 22;1(21):e89376.

[4] Metabolic profiling of a myalgic encephalomyelitis/chronic fatigue syndrome discovery cohort reveals disturbances in fatty acid and lipid metabolism. Germain A, Ruppert D, Levine SM, Hanson MR. Mol Biosystems. 2017 Jan 31;13(2):371-379.

[5] Metabolic features of chronic fatigue syndrome. Naviaux RK, Naviaux JC, Li K, Bright AT, Alaynick WA, Wang L, Baxter A, Nathan N, Anderson W, Gordon E. PNAS. 2016 Sep 13;113(37):E5472-80.

[6] Cytokine network analysis of cerebrospinal fluid in myalgic encephalomyelitis/chronic fatigue syndrome. Hornig M, Gottschalk G, Peterson DL, Knox KK, Schultz AF, Eddy ML, Che X, Lipkin WI. Mol Psychiatry. 2016 Feb;21(2):261-269.

[7] Impaired calcium mobilization in natural killer cells from chronic fatigue syndrome/myalgic encephalomyelitis patients is associated with transient receptor potential melastatin 3 ion channels. Nguyen T, Johnston S, Clarke L, Smith P, Staines D, Marshall-Gradisnik S. Clinical & Experimental Immunology. 2017 Feb;187(2):284-293.

[8] Illness progression in chronic fatigue syndrome: a shifting immune baseline. Russell L, Broderick G, Taylor R, Fernandes H, Harvey J, Barnes Z, Smylie A, Collado F, Balbin EG, Katz BZ, Klimas NG, Fletcher MA. BMC Immunol. 2016 Mar 10;17:3.

[9] National Institutes of Health Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Green CR, Cowan P, Elk R, O’Neil KM, Rasmussen AL. Ann Intern Med. 2015 Jun 16;162(12):860-865.

Links:

Chronic Fatigue Syndrome (Medline Plus, National Library of Medicine/NIH)

Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness (National Academies of Sciences, Engineering, and Medicine, Washington, D.C)

63 thoughts on “Moving Toward Answers in ME/CFS

  1. I’m sorry to say, but this sounds like more of the same to me, 20-30 years of “study” with no real movement on treatments. Please read the RFIs from your own NIH working group. Ampligen is mentioned 209 times and Rituximab is mentioned 37 times. Where is the research into treatments and not just the causes? These drugs have been shown to treat the worst aspects of this disease in many cases. Do we need to fully understand a disease before we start treating it? Why can’t effective treatments be studied or made available in parallel to this work?

  2. The NIH has done. Nothing,hardly any research money , do you realize there is more money put into Male baldness?Come on! I know 3 people that where friends of mine that have died of cfids, fibro. It is the worst disease ever, I have had it for 23 years, my husband has had it for 32 years, and all we here is psycho. Babble from you people.You say your going to research cfids , yet I have heard this for 23 years! … More government beaurocracy!

  3. This is great news for millions of patients around the world! We need a treatment as soon as possible. There are way too many young and vibrante people locked up in their homes by this disease, that would love to work, pay taxes, have children and contribute to society. Thank you for every effort! This greeting from Helsinki, Finland.

  4. I left an earlier comment praising this blog, and I still am very glad to see it. However, the NIH must start funding Ron Davis and his work at Open Medicine Foundation. Professor Davis and his team of Nobel laureates and members of the National Academy of Sciences have discovered more in the past two years, with no federal funds, than the NIH has in the past 35. You’ve refused him funding because he has not come up with acceptable hypotheses; HE should be the one dictating terms to YOU. He is like an explorer heading across the sea to find what is there, instead of sitting safely in his cubicle hypothesizing about whether the earth is flat or not. You have it in your power to actually DO something for the millions worldwide whose lives have literally stopped; if you do nothing else, adequately fund Professor Davis and OMF. Can you imagine what they would be able to do if they actually had enough money? On a practical note, it would save the NIH money in the long run, besides helping to restore lives.

  5. Why aren’t you studying and helping severe patients? I’ve been sick since 1983, when I had a severe strep throat and mononucleosis at the same time. I’ve been waiting 33 years for appropriate medical care! I’m missing my own life, my own body. I’m missing children that I never got to have and branches in my family tree that will never exist because of the politics of this disease. I’m emaciated, bedridden, in an incredible amount of pain and too ill to leave my home now. I no longer have medical or dental care. When are you going to study the sickest among us? When are we going to get homecare and care through telemedicine and technology? Why as a group, must people with ME lobby congress, have a congressionally appointed committee for our disease, protest and make documentary films to get you to do your jobs? Why do we have to hear the old familiar, ignorant, sexist, hateful, disease denialist biases from members of your own institutes and invited speakers? Why must we tolerate them working on research for our disease? What kind of health care system does this to patients? What kind of health care system leaves its sickest patients to suffer endlessly in pain and isolation in their homes or homeless, disbelieved, with some of us dying and others taking their own lives?

    After decades of discrimination, misinformation and stigmatization, your current approach, funding, research and timelines to address this public health crisis are tragically and heartbreakingly inadequate.

    • Mary, there is hope.
      But it is not with the NIH.

      Researchers at Stanford are making HUGE strides on this front.
      For a real mood boost (even for ME/CFS sufferers!), look at this article, very recently released:

      http://www.meaction.net/2017/02/22/stanford-team-announces-breakthrough-in-mecfs-research/

      If the link does not work, use these key words in a google search:
      february 22 2017 stanford team update me/cfs

      The references at the end of this NIH article make NO acknowledgement of any research being done by the Montoya/Davis team at Stanford. Plus, the NIH article states that there are differences between “typical CFS,” and what they are labeling “atypical CFS.” This implies that their position all along regarding “typical CFS” will remain intact – that it is a psychosomatic illness.

      I’m coming to the conclusion that it is in the interest of those suffering (including me since 2002) if the NIH stays out of this. Their money COULD be well utilized. However, the NIH repeatedly turns down grant requests by researchers who ARE making progress.

  6. So saddened to read the comments from all these people suffering for so many years. Please DO something, NIH!

    • My fantasy is that NIH decides to adopt ME/CFS as its primary medical challenge for the decade, that it finally acknowledges that this illness is as debilitating as any and all other illnesses, that other illness kills people ending their lives on earth while ME/CFS kills people who remain living on earth, requiring heroic and epic efforts to remain alive.
      Ah, fantasy is a wonderful mental survival tool ——–

      • I’m coming to the conclusion that it is in the interest of those suffering (including me since 2002) that we are best off if the NIH stays out of this. Their money could be well utilized by those already making HUGE strides with only private donations. However, the NIH repeatedly turns down grant requests by these brilliant and dedicated researchers.

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