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Questions about where ME/CFS is 'housed' at NIH

Discussion in 'General ME/CFS News' started by viggster, Oct 30, 2015.

  1. viggster

    viggster Senior Member

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    There seem to be a lot of questions after yesterday's NIH announcement regarding where ME/CFS is 'housed' at NIH. I don't know exactly what that means. Maybe someone can clarify. Here's what we (I) know:

    - A new intramural ME/CFS research program is being launched at NIH.
    - A NINDS researcher (Vicky Whittemore) and the NINDS director are very involved in this effort
    - An RFA for extramural researchers from NINDS should be issued after NIH gets its budget from Congress.
    - There is a Trans-NIH Working Group with members from various institutes that is responsible for ME/CFS
    - NIH will continue to provide a CFSAC member - currently Vicky Whittemore of NINDS
    - The Office of Research on Women's Health is no longer involved in ME/CFS

    That's very NINDS-y. I don't really know how else to answer the question. Maybe @leokitten can weigh in.

    Brian
     
  2. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    I think the question is probably motivated by people wondering if it has been moved out of and/or is still associated with "women's health" at NIH
     
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  3. viggster

    viggster Senior Member

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    See my edit above. NIH said yesterday ORWH is no longer involved in ME/CFS.
     
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  4. Denise

    Denise Senior Member

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    I looked at the Trans-NIH ME/cfs WG webpages yesterday (29 Oct. 2015) shortly after the announcement. At that time, the dates last reviewed on the several pages I checked was 28 October 2015 - in other words the day before the press release.
    Sometime after that most of the pages were updated.
    http://orwh.od.nih.gov/research/me-cfs/

    I have found no indication on the updated pages that ORWH is not involved in ME.
    The pages indicate that people from NINDS will (for now) be leading the WG but according to some sources (@leokitten among them) leadership of the WG will rotate.

    Also
    From the WG website it is unclear if (as mentioned elsewhere) Walter J. Koroshetz, M.D. Director, NINDS will be the chair “An individual from NINDS chairs the Research Working Group. “ (is what the WG website says).
    http://orwh.od.nih.gov/research/me-cfs/aboutgroup.asp

    Yet the NIIH press release said
    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.

    Is anyone else confused or is it just me?

    EDIT (btw - around lunchtime yesterday I sent an email to Vicky Holets Whittemore asking specifically whether ME was still in ORWH or had been moved and have not received a reply.)
     
  5. viggster

    viggster Senior Member

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    Here's what Jon Cohen reported at Science magazine yesterday. He doesn't source the statement but he did talk to Collins.

    NIH also is moving oversight of ME/CFS research from the Office of Research on Women’s Health to the National Institute of Neurological Disorders and Stroke (NINDS).​
     
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  6. Denise

    Denise Senior Member

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    Perhaps it would be useful to compile the bits and pieces that say different/contradictory things and ask NIH directly for clarification.
    We can point to many differing statement but none of that will necessarily prove anything and may instead irritate people.
     
  7. viggster

    viggster Senior Member

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    What do you want clarified?
     
  8. Kati

    Kati Patient in training

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    Could it possibly be that the press release was expedited in order to counteract the publication of the psych lobby article earlier this week?

    It is very interesting that within the last 10 days of so, so much has happened in our community starting with David Tuller's article.

    I am not too overly concerned with the slight inconsistencies in reporting. What is happening at NIH is major and they are responding. Good enough for now. Thanks @viggster and @leokitten
     
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  9. Denise

    Denise Senior Member

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    I have many question such as
    Will leadership of the WG be static or will it rotate?
    Will Dr. Koroshetz be the head of the WG?
    If not, who and how was that person chosen?
    Is there an alternate (if so, why was that person selected)?
    Is ME still in ORWH or has it been moved (or is a move underway and when)? If it has been moved, where has it been moved to?
    What were the deciding factors in the placement of the WG?

    .. and on and on....
    Edit - @viggster - are you volunteering to collect questions and pose them to NIH?
     
  10. Denise

    Denise Senior Member

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    I haven't seen much talk about an RFA - can you provide info?
     
  11. viggster

    viggster Senior Member

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    Someone is sending some Q's to NIH this weekend to get clarification on some of these points.

    Collins said the head of NINDS is putting together an RFA but they have to wait for Congress to decide their budget for FY16.
     
    Last edited: Oct 30, 2015
  12. Vineyard1

    Vineyard1

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    Brian...Thank you for your courage, advocacy and wisdom.
     
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  13. Denise

    Denise Senior Member

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    Thanks re the RFA. Now that the budget issue is settled thatI hope we soon get details about a large RFA for us.

    Re someone sending questions to NIH. I know of someone who will be putting questions to NIH - I wonder if these efforts should be coordinated ( at least it would look as though we talk to each other).
     
  14. Bob

    Bob

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    Is that a new development, Denise?
     
  15. Denise

    Denise Senior Member

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    Bob likes this.
  16. searcher

    searcher

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    Hi Denise-
    Would you mind direct messaging me about the person sending in questions? I would like to coordinate. I am not the person who sent the questions in but did pass some on.

    Here is the list that I sent:
    - Are there any other diseases that follow the model of a working group led by rotating institutes?
    - Will ME/CFS be part of the NIH's 5 year strategic plan since it is not officially housed by an institute?
    - Is NINDS officially out of the Office of Women's Health or is that still its official home? It isn't clear from http://orwh.od.nih.gov/research/me-cfs/
    - Will Dr Koroshetz or Vicky Whittemore (or someone else) be chairing the working group?
    - For how long will each institute chair the working group before the chairmanship rotates?
    - When will NIH announce how much money is being spent on the new intramural studies?
    - Are there any more details on the upcoming RFAs? Any plan for how much money will be attached to them?
     
  17. SOC

    SOC

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    Am I wrong to be a little concerned about this rotating chairmanship and not being officially housed by an institute? It seems like it would be easy for no one to get seriously invested as we are being tossed from one institute to another. We've been falling through the cracks for too long. Or is that not the way it's actually going to work? :confused:
     
    Last edited: Oct 31, 2015
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  18. halcyon

    halcyon Senior Member

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    I am concerned a bit also. I'm a little fuzzy on the history but isn't this basically what the prior arrangement was before we finally got stuck in ORWH?
     
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  19. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    I wonder if this might be sort of based on what Carol Head said at the CFSAC meetings about needing a unique strategy for ME due to the fact it is multi-systemic, 'experts' on funding panels don't necessarily understand what is being proposed/ not their area etc.
    Just Tried to look for what she said exactly but can't find it.

    Anyways, seems like it could potentially be a good thing if a number of different specialties get it landing on their plate for a while. I guess we will see.

    At least we are no longer being considered a "women's disease".
    CFS, PMS same difference, right? :p
     
  20. leokitten

    leokitten Senior Member

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    @searcher has laid out some very good and important questions. The only information I can add at this point is my opinion but from my discussions with the powers-that-be within the NIH I have the distinct feeling they at least share some of these thoughts.

    First, I would like to say that it's common for many diseases, in particular diseases of the immune system that affect multiple organ systems, to have extramural grants awarded and funded by multiple ICs within the NIH, even if these diseases have a "home" in one IC. Have a look at http://projectreporter.nih.gov/ and drill down to categorical spending and have a look at some examples and you will see that this is true. @searcher did raise the excellent point to me though about diseases having a "home" and how it directly influences strategic planning since it's essentially the responsibility of that IC to continue to drive research on the disease both intra and extramural.

    Since the scientific community has very little understanding and concrete evidence as to the pathophysiology of ME/CFS then at this point I believe the NIH is hesitant to give ME/CFS a particular "home". How could they really especially since ME/CFS affects so many organ systems? While all of us have some very strong opinions about what is causing and driving this disease when it comes down to it we really don't know and we don't have much evidence. And let's throw theories about etiology out the window, we still have no scientific understanding of any mechanisms driving this disease. Until we have some then I do not think ME/CFS will get a particular "home" and it makes more sense to have a trans-NIH working group lead by an IC which makes the most sense given the little understanding we do have: NINDS.

    IMO there aren't many, if any, non-rare diseases which share this particular problem, where we essentially have no understanding as to what is going on, so to answer @searcher's first question maybe no. Though I do think there is coordination amongst ICs on diseases that affect multiple organ systems, though in those diseases we have at least some understanding of mechanisms.

    Let's have some hope, with diseases like MS and SLE for example, which clinically are "systemic" diseases with a myriad of symptoms affecting multiple organ systems, once the scientific community had some understanding of the mechanisms these diseases got a "home" at NIH.
     
    Last edited: Nov 2, 2015

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