Respond to the NIH's Request for Information

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On May 24th, the National Institutes of Health (NIH) released the document Request for Information: Soliciting Input for New Research Strategies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).  An RFI, or Request for Information is “critical for identification and consideration of research areas and topics to be included in future efforts.”  The Trans-NIH ME/CFS Working Group will review the comments about ME/CFS research that they receive from the public and potentially use this information to direct current and future research.
#MEAction is currently formulating our response as an organization, along with a mechanism for soliciting and incorporating community input.
The Trans-NIH ME/CFS Working Group is soliciting the following information from “researchers, health care providers, patient advocates, and health advocacy organizations, scientific or professional organizations, Federal agencies, and other interested parties”:

  • Emerging needs and opportunities in ME/CFS Research, including
    • A description of the need or opportunity
    • A scientific rationale and potential health impact
    • Any anticipated challenges that may arise
    • Appropriate benchmarks for evaluating progress
  • Challenges or barriers to ME/CFS research
  • Gaps and opportunities in research

The NIBIB is particularly interested in new imaging and bioengineering technologies that may have bearing on ME/CFS research.
Responses

  • Must be submitted through Friday, June 24, 2016
  • May be submitted by individuals as well as organizations; organizations are encouraged to submit a consensus document as well
  • May be submitted anonymously; however, submissions should not include any information the author considers private
  • Must be submitted to [email protected]

The RFI document stresses that the government is in no way required to acknowledge receipt of responses, nor to provide any feedback.
For more information on the RFI, view the original document here.

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3 thoughts on “Respond to the NIH's Request for Information”

  1. Huge need for quantifying the exercise protocols that mark VaneNess and Staci Stevens are using. Heart rate monitoring and heart rate variability data is helping patients. It’s something that can be implemented immediately while we wait for a cure.
    Needs recognition that the profoundly ill may need to focus on staying still, absolutely still, too keep their heart rate under the heart rate cap. There are people too ill to move.
    [Edited for language]

  2. I think we need to dump exercise. DUMP IT! It is NOT working for ANY patients as a T-R-E-A-T-M-E-N-T. All that happens is patients that happen to be in remission can exercise carefully which happened to me for over 20 years.
    Just tell them to never get their heart rate up even while in remission or remitting. Exercise is to keep muscle tone, weight down and other health needs but it is NOT FOR ME/CFS.
    I think we need to stress there IS relapsing/remitting, remission, very few recoveries, some patients can improve but never really well and will always be in danger of relapsing.
    And that there are those that can work if they are careful with the type of job they have and have family that works with them with housework and vacations are restful. Some can work only part time and have to let go of most of their social life and almost all housework or they can keep up with the housework if they do not work. Others are or all but housebound, wheelchair or bedbound. And I do believe we have ME/CFS sufferers from all levels out of the Incline Village Outbreak with even a few full recoveries. It probably matters where the virus hit in their body systems and what Neuro-immune, Neurological, Auto-immune and body systems it took out in each patient and there is always the danger of getting worse over the years and they often do.

  3. Can research include a group with no intervention? I think some
    recovery happens naturally, then gets accredited to whatever treatment
    is happening at the time.
    I made three recoveries over 15 years from being severely affected to being
    able to work full time. I began unable to do anything but rest and
    started again when I felt well enough.
    On the fourth try, I had pushed too long to keep working, rested
    then tried to recover through gentle exercise. I had a relapse I
    didn’t recover from and am now severely affected.

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