Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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NIH wants your views on what to research and research strategies

Discussion in 'General ME/CFS News' started by Simon, May 24, 2016.

  1. Simon

    Simon

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    Good afternoon. The Trans-NIH Working Group has issued a Request for Information (RFI) to help identify research areas and topics to be included in strategies to advance research efforts on ME/CFS.

    Through the RFI, the Trans-NIH ME/CFS Working Group invites input from anyone with an interest in the NIH’s research efforts on ME/CFS, including researchers, health care providers, patient advocates and health advocacy organizations, and scientific or professional organizations. You are invited to submit your comments to MECFSRFI@mail.nih.govthrough June 24, 2016.

    Please provide your perspective on the following issues:

    · Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed.

    · Challenges or barriers to progress in research on ME/CFS.

    · Gaps and opportunities across the research continuum from basic through clinical studies.

    The Trans-NIH ME/CFS Working Group also welcomes your general comments.

    The members of the Trans-NIH ME/CFS Working Group will review and consider the comments received under this RFI as they develop strategies for ME/CFS research and research training.

    For more information about NIH activities on ME/CFS, please visit www.nih.gov/mecfs.


    Marian Emr

    Director, Office of Communications and Public Liaison/NINDS
    NIH Building 31, Room 8A07
    Phone: (301) 496-5924
     
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  2. lnester7

    lnester7 Seven

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    the first thing is to validate / replicate the 2 day cpet study (I think is called the exercise one).

    Here is my reasoning: This study is accepted by disability and all industry. This will give us 100% of plp w real ME + will fix the gap so while the patient gets better can get some income.

    So we address a biomarker (can be combined w immune tests), a disability acceptable tool, and an objective / measurable evaluation tool for future treatment (how effective it is) / studies.

    I am convinced this is where we need to start.

    2) We should join forces with Dr Grubb on OI. There are effective treatments that can get people out of bed immediately. Long out there drugs that work today (when the prescriber knows what it is doing). So see if betablockers(case by case), Calcium Channel Blockers (case by case), Vassoconstrictors (case by case), Vassodilators (case by case)......... This is cheap, fast and effective treatment we can have studies up and running fast and with good immediate results (per soubgroup).

    3) Validate GET w the 2 day CEPT study (once this is validated).
    4) Try MS and RA drugs for CFS.
     
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  3. Sasha

    Sasha Fine, thank you

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    I think it's important that we don't flood them with individual suggestions - better to send the suggestions to the orgs, but I wonder which want to receive them?
     
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  4. Kati

    Kati Patient in training

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    Hi @inester7 the 2 days CPET has been replicated by the Keller group already.
     
  5. Kati

    Kati Patient in training

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    I disagree with that.

    They have issued a RFI. They want to hear from as many people as possible.
     
  6. duncan

    duncan Senior Member

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    I can imagine Friday afternoons being designated "RFI Reads", where NIH staff might gather at a local pub during Happy Hour and read what they consider to be the most entertaining ME/CFS research suggestions...

    At least they are having some laughs in my fantasy - I am assuming pulling ME/CFS duty will be a tough draw.
     
    Last edited: May 24, 2016
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  7. *GG*

    *GG* Senior Member

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    LOL, yeah, it is the Gov't after all. We know they are not good with Technology and responding to humans :)

    Do you know how many Orgs there are in the USA? Not even one for each state, so doubt they are looking for less than 50 people/orgs to get back to them.

    GG
     
  8. Sasha

    Sasha Fine, thank you

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    But what they've said is:

    I can easily imagine them getting hundreds and hundreds of emails and being so swamped that they can't handle them.
     
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  9. Kati

    Kati Patient in training

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    The Trans-National Institutes of Health (NIH) ME/CFS Working Group is developing new strategies to guide NIH's research efforts and priority setting for research on ME/CFS. Seeking input into the planning process through this Request for Information (RFI) is critical for identification and consideration of research areas and topics to be included in future efforts. The members of the Trans-NIH ME/CFS Working Group will review and consider the comments received under this RFI with regard to current and future needs and direction for ME/CFS research and research training.

    Information Requested
    Through the RFI, the Trans-NIH ME/CFS Working Group invites input from researchers, health care providers, patient advocates and health advocacy organizations, scientific or professional organizations, Federal agencies, and other interested parties. Organizations are strongly encouraged to submit a single response that reflects the views of their organization and membership as a whole.

    Please provide your perspective on the following issues as they relate to the Working Group's planning efforts:

    • Emerging needs and opportunities that should be considered as new ME/CFS research strategies are developed.
    • Challenges or barriers to progress in research on ME/CFS.
    • Gaps and opportunities across the research continuum from basic through clinical studies.
    When commenting on a research need or scientific opportunity, The Working Group suggests that your comments contain the following for our full consideration:

    • Description of the need or opportunity
    • Scientific rationale and potential public health impact
    • Anticipated challenges that will need to be addressed
    • Appropriate benchmarks for evaluating progress.
    • For this RFI, the NIBIB is interested in the ideas for the development of new imaging and bioengineering technologies that could have the potential for a significant impact on ME/CFS research.
    The Trans-NIH ME/CFS Working Group also welcomes your general comments.
     
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  10. Sasha

    Sasha Fine, thank you

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    But they're not just asking orgs to get back to them - they also list "researchers, health care providers, patient advocates and health advocacy organizations, scientific or professional organizations, Federal agencies, and other interested parties."
     
    Simon likes this.
  11. msf

    msf Senior Member

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    Fund any study that Lipkin or Davis proposes.
     
  12. A.B.

    A.B. Senior Member

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    I'm glad they are giving us the opportunity to send in feedback. I would like to comment am not quite sure. Would it be a good idea to recommend performing an autopsy study?

    I think we know of 5 autopsies performed so far (I'm going from poor memory here). Charles Shepherd mentioned four of these recently. One stained positive for coxiella burneti in various organs. One had dorsal root ganglionitis. Two had lymphocyte infiltration of the nervous system (I believe). One had an unusual accumulation of amyloid bodies in the nervous system.

    I'm probably getting a few details wrong here but I remember that they all had some problem with the nervous system. In any case, the point here is what we can learn from autopsies.

    Autopsies seem to be a fast way to get a rough idea of what kind of problems the patients are dealing with. It would also quickly end any remaining skepticism.

    This project would involve informing the public and doctors that bodies of ME/CFS patients are needed for research, and performing a number of autopsies, say 40, then collecting and publishing the results. One problem could be getting enough bodies in a reasonable timeframe. It might be unrealistic, but if it can be pulled off, it could be a big step forward. ME/CFS is not rare, there is just little awareness. A campaign to raise awareness and stress the need for patients to donate their bodies for research might be enough to get a sufficient number of bodies to draw some conclusions.

    The advantage of autopsies is that one can look at any tissue in the body, whereas in a living patient some compartments are off limits. But if the problem is exactly in those compartments then it will be hard to make progress.
     
    Last edited: May 24, 2016
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  13. lnester7

    lnester7 Seven

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    YESSSSSSSSSSSSSSSSSS I forgot about this one. We can advance the field in a way that will not be possible otherwise.
     
  14. NL93

    NL93 Senior Member

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    This. Lynn Gilderdale, Sophia Mirza and i believe a few others had nerve damage /infection that showed on autopsies. We need to know what causes this and if every ME patients has it
     
  15. Bob

    Bob

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    My understanding is that it hasn't been reliably replicated or validated. But even if it has been replicated once, that's not enough, and it needs to be replicated on a large number of patients.
     
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  16. BurnA

    BurnA Senior Member

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    Endothelial dysfunction.
    Light and noise sensitivities.
     
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  17. JaimeS

    JaimeS Senior Member

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    I fully support this idea. Drinks all around, @NIH!
     
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  18. duncan

    duncan Senior Member

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    As long as Bethesda is buying. :)

    Now that @BurnA mentions it, I would also like to see them look at endothelial dysfunction. There are so many possibilities at play.
     
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  19. JaimeS

    JaimeS Senior Member

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    Right?
     
  20. Kati

    Kati Patient in training

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    The Vancouver team has a 15 subject and control 2 days CPET gene expression study in the works. i do not know when this will be published, it might well be several months for this to happen, but it was funded by NIH. All exercise tests were completed a couple months ago.
     
    Last edited: May 25, 2016
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