The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Discussion in 'General ME/CFS News' started by leokitten, Oct 29, 2015.

  1. leokitten

    leokitten Senior Member

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    NIH takes action to bolster research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

    The National Institutes of Health is strengthening its efforts to advance research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a disease for which an accurate diagnosis and effective treatment have remained elusive. The actions being taken include launching a research protocol at the NIH Clinical Center to intensely study individuals with ME/CFS and re-invigorating the efforts of the long-standing Trans-NIH ME/CFS Research Working Group with the National Institute of Neurological Disorders and Stroke (NINDS) as the lead of a multi-institute research effort.

    “Of the many mysterious human illnesses that science has yet to unravel, ME/CFS has proven to be one of the most challenging,” said NIH Director Francis S. Collins, M.D., Ph.D. “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.”

    NIH’s direction on the disease 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. 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.

    In an effort to remedy this situation, 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.

    NIH will also be considering additional ways to support ME/CFS research in the extramural research community. Since the root cause of ME/CFS is unknown and the manifestations of the disorder cut across the science interests of multiple NIH institutes and centers, a trans-NIH working group will be needed to assist that plan. 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. One goal of the group will be to explore how new technologies might shed light on what causes ME/CFS. The Working Group includes representation from 23 NIH institutes, centers and offices.

    About the National Institutes of Health (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.

    NIH...Turning Discovery Into Health®

    ###

    ________________________________________________________

    The CFSAC Support Team

    Email: cfsac@hhs.gov

    Website: http://www.hhs.gov/advcomcfs/index.html
     
    Snow Leopard, Mij, viggster and 34 others like this.
  2. Cheshire

    Cheshire Senior Member

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  3. Sasha

    Sasha Fine, thank you

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    Great news, leokitten! This is the key bit, I think. The trans-NIH group have been useless for years, because no-one took the lead.
     
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  4. Sasha

    Sasha Fine, thank you

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    Congratulations, @viggster! I'm absolutely certain that you've had a huge impact on the NIH.
     
    ghosalb, mango, Scarecrow and 11 others like this.
  5. Yogi

    Yogi Senior Member

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    Phew some good news from the USA after the terror caused on this side of the pond this week.

    Thanks Leokitten!
     
    rosie26, Sushi, Ritto and 9 others like this.
  6. Sidereal

    Sidereal Senior Member

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    Birthday present for me, thanks NIH. And thank you @leokitten for delivering the good news. We've had a horror week on this side of the pond with the PACE trial media blitz.
     
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  7. snowathlete

    snowathlete

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    Great to see some progress!!
    In summary:
    • ME/CFS being moved from the weak Office of Research on Women's Health to the National Institute of Neurological Disorders and Stroke (NINDS).
    • 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.
    • NIH will also be considering additional ways to support ME/CFS research in the extramural research community. As the manifestations of the disorder cut across the science interests of multiple NIH institutes and centers, a trans-NIH working group put in place to assist that plan, represented by 23 NIH institutes, centers and offices.
    All pretty major developments. You would think this would lead to a significant increase in funding to enable the changes. What the community has been doing has obviously been working. Important to celebrate our wins, enjoy them and be encouraged, then continue to push for commensurate funding.
     
    Mij, rosie26, catly and 18 others like this.
  8. Yogi

    Yogi Senior Member

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  9. Denise

    Denise Senior Member

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    Oh Francis Collins! PLEASE learn something!
    "He thinks exploring various aspects of CFS might shed light on other mysterious medical phenomena, like the fatigue that many chemotherapy patients experience.

    “If we could figure out what is the physiological basis of this profound fatigue, perhaps that would have insights into other aspects of human experience,” he said."
    ME is MUCH more than fatigue (profound or otherwise)!!!!
     
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  10. Sasha

    Sasha Fine, thank you

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    Is this actually what it means, or is NINDS just leading for this one project?
     
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  11. Cheshire

    Cheshire Senior Member

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  12. A.B.

    A.B. Senior Member

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    Sounds good. Has the NINDS been involved in research in this area in any capacity before?
     
  13. Valentijn

    Valentijn WE ARE KINA

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    Is it actually being moved, or is NINDS just leading a single project regarding ME/CFS? I still see CFS stuff listed in the Office of Research on Women's Health, and no CFS, ME, or SEID in the NINDS section.
     
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  14. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    This is my big question, too. The writing is unclear, at least to an outsider like me.

    Let's go!
     
    Hutan likes this.
  15. A.B.

    A.B. Senior Member

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    Encouraging bit from Koroshetz biography:

    In other words, we have a person with a special interest in biomarkers leading the research effort. Let's hope that he is passionate and highly motivated!
     
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  16. Yogi

    Yogi Senior Member

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    http://solvecfs.org/nih-announces-new-effots-to-advance-mecfs-research

    Unless they got it wrong it seems it is moving to NINDS.

    " The move is a landmark one for ME/CFS, which has previously been housed in the Office of Research on Women’s Health and did not receive the attention or funds that a disease with its burden merits."


    https://twitter.com/PlzSolveCFS/status/659732737335631872
     
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  17. snowathlete

    snowathlete

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    That was my interpretation, but you're right that it may not be correct. The fact the Office of Research on Women's Health not only isn't leading the study but also isn't involved at all seems to suggest it though.
     
  18. Sasha

    Sasha Fine, thank you

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    Not sure that implication is there (though I wish it were!).
     
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  19. meadowlark

    meadowlark Senior Member

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    My brain fog is so intense today that I really, really needed the points highlighted for me. Thanks!
     
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  20. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    MEAction just sent out an email saying,
    "ME/CFS moves to NINDS
    The US National Institutes of Health (NIH) announced today that it will undertake a new clinical study and “reinvigorate” the long-standing trans-NIH working group to further ME/CFS research, an effort to be led by the National Institute of Neurological and Stroke Disorders (NINDS).

    ME/CFS will no longer be housed under the auspices of the Office of Women's Health and has been moved to NINDS."

    Still, the press release does not make it clear to me that the disease has been moved to NINDS.
     
    jimells, catly, Effi and 4 others like this.

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