Phoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all ...
Discuss the article on the Forums.

NIH to double funding for chronic fatigue syndrome

Discussion in 'General ME/CFS News' started by Old Bones, Nov 10, 2016.

  1. Old Bones

    Old Bones Senior Member

    Messages:
    796
    Likes:
    4,735
    CANADA
    Just found this on my morning search, but haven't read the whole article:

    http://www.sciencemag.org/news/2016...nic-fatigue-syndrome-patient-distrust-remains

    "The most anticipated speaker late last month at an international conference devoted to the mysterious malady commonly known as chronic fatigue syndrome (CFS) was not a scientist with a hot new finding—although there was excitement about new research in the air. Rather, it was a National Institutes of Health (NIH) official bearing good news to a community that has long existed on the margins of the biomedical research establishment. Vicky Whittemore, the agency's CFS point person in Bethesda, Maryland, delivered on a promise that NIH Director Francis Collins made last year by announcing that NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016."
     
    Mel9, Dufresne, ahimsa and 24 others like this.
  2. Matthew Jones

    Matthew Jones Senior Member

    Messages:
    176
    Likes:
    664
    Great - Its something!
     
    barbc56 and Webdog like this.
  3. Simon

    Simon

    Messages:
    1,913
    Likes:
    14,347
    Monmouth, UK
    I'm really disappointed. I don't expect the NIH to hit $250m in year one, but after years of neglect we needed an order of magnitured increase, $50 million would have showed serious intent, $17m shows collectively the NIH is not committed, even if some individuals there are (and I have no doubt Vicky Whittemore is). Patients need and deserve more.
     
    anniekim, Mel9, ahimsa and 36 others like this.
  4. aimossy

    aimossy Senior Member

    Messages:
    1,068
    Likes:
    3,649
    Is this inclusive of the forthcoming RFA amount or not?
     
    Ritto likes this.
  5. Denise

    Denise Senior Member

    Messages:
    1,094
    Likes:
    3,435

    I believe RFA's and projects reviewed by the ME/cfs Special Emphasis Panel (SEP, next meeting 6 Dec. 2016) are two different funding mechanisms.
     
    Theodore, Nielk, Simon and 2 others like this.
  6. snowathlete

    snowathlete Not an ol' sleazebag

    Messages:
    3,221
    Likes:
    13,406
    UK
    The headline makes it sounds significant - double. But it is double of almost nothing, which is still almost nothing.
    15 million US dollars is nothing when it comes to medical research. This won't get us anywhere. It shows the NIH is not sincere about even beginning to correct this problem.
     
    anniekim, GalaxiiGrl, Cohen2 and 4 others like this.
  7. Sean

    Sean Senior Member

    Messages:
    3,139
    Likes:
    16,887
    I feel... underwhelmed. :meh:
     
    Nielk and Webdog like this.
  8. A.B.

    A.B. Senior Member

    Messages:
    3,540
    Likes:
    21,412
    Bittersweet. It's better than no increase, but it's way less than I thought it would be.
     
    anniekim, Theodore, mango and 2 others like this.
  9. Rick Sanchez

    Rick Sanchez

    Messages:
    68
    Likes:
    420
    Sadly it looks like we have a HIV situation on our hands. We won't get proper funding until they actually find out whats wrong / a biomarker. Of course this is probably made worse by CFS probably being made up of multiple subsets.

    We can just hope Fluge / mella play the role of the French in all of this.

    I know I will be donating what I can to R. Davis at the end of this month.
     
  10. greeneagledown

    greeneagledown Senior Member

    Messages:
    153
    Likes:
    444
    Obviously this is still a pathetic amount of money, but a 100% increase in funding in one year at NIH is actually extremely rare. They were never going to go to $150 million in just a year or two. This was probably the best we could hope for.

    Once there's a validated diagnostic test, the floodgates will open.
     
    meadowlark and Rick Sanchez like this.
  11. BurnA

    BurnA Senior Member

    Messages:
    1,985
    Likes:
    8,764
    But what evidence is there that the floodgates will open ?

    Percentages are meaningless when we are talking about such a low baseline. I certainly don't see why this is the best we could have hoped for. If it doubles again for the next few years then that would be fine, but that should be the target they commit to.

    I imagine this increase won't fund the current researchers nevermind try to attract / fund new researchers.
     
    Marky90, TiredSam, geraldt52 and 2 others like this.
  12. Denise

    Denise Senior Member

    Messages:
    1,094
    Likes:
    3,435
    I think part of the problem many people have with the small increase is that it isn't anywhere near enough to cover the large-scale studies we need and the replication studies we need to validate a diagnostic test(s).

    (And we can't raise the private funding needed for those studies)
     
    Webdog likes this.
  13. AndyPR

    AndyPR Cookies for Tired Sam

    If you can do that by the 28th then you'll qualify for the donation 'top-up' that is happening, but obviously any donation is a valuable one, whenever it is made. :)
     
    Neunistiva likes this.
  14. GlassHouse

    GlassHouse

    Messages:
    36
    Likes:
    99
    As others have said, it's still low, but at least going in the right direction. But I'm hopeful that with so many brilliant minds involved now, we have a better change of finding a biomarker (and with these scientists who really understand the disease, able to find biomarkers for subgroups rather than concluding there is no marker).

    The more they find, the better our chances get for more funding. Here's hoping it keeps going in the right direction.
     
    meadowlark and barbc56 like this.
  15. BurnA

    BurnA Senior Member

    Messages:
    1,985
    Likes:
    8,764
    The article is a decent article and worth adding comments to.

    I am curious why nobody tweeted about this from the conference when it was on?

    Also curious how Dr. Linkin always seems to get a mention about being an advisor but yet can't seem to get funding for all those samples he has taken. Hopefully it's only a matter of time.
     
  16. NL93

    NL93 Senior Member

    Messages:
    139
    Likes:
    845
    The Netherlands
    $15m is still very little but if it keeps doubling up every year for the next 5 years I'm ok with this
     
    Last edited: Nov 10, 2016
    meadowlark, Simon, soti and 2 others like this.
  17. dreampop

    dreampop Senior Member

    Messages:
    149
    Likes:
    354
    A $7 million increase would be extraordinary and basically the ideal $ increase for a single year. There is not the # of quality grant submissions to even get near $15. If you think they could spend more in a single years it's unrealistic that they could spend it and not waste it and create back lash for cfs research. Yes, I'd like them to walk to Ron Davis an give him $5 million but his research is exceptionally good.

    Still I'll wait to celebrate until those r fa s are out.
     
  18. BurnA

    BurnA Senior Member

    Messages:
    1,985
    Likes:
    8,764
    That sounds awfully familiar only normally it's the NIH saying it.
    Remember Ron Davis was turned down in the past, was that not a quality application?

    Lipkin, Davis, Hansen, Naviaux and Younger could probably spend all 15 million in a year between them.

    And there are plenty of others. And we need to attract more, so the message should be : there's loads of money here, come get it.
     
  19. barbc56

    barbc56 Senior Member

    Messages:
    3,525
    Likes:
    4,108
    What is Trump's position about these agencies and their funding? That could make a huge difference. The Republicans now run the House and Senate, I think once again, and with a Republican president, my fear is that funding not only for us but other diseases will be cut.

    I do know he's a climate change denier but other than that I'm not sure where he stands on these issues.

    Anyone know or have citations?

    Edit.

    I found this thread.

    http://forums.phoenixrising.me/index.php?threads/the-orange-elephant-in-the-room-impact-on-nih-funding.47806/#post-784550
     
    Last edited: Nov 10, 2016
    Theodore and Webdog like this.
  20. taniaaust1

    taniaaust1

    Messages:
    11,870
    Likes:
    12,561
    Sth Australia
    and how does this compare to what MS is getting? I'll believe they are serious when we are getting similar funding to them
     

See more popular forum discussions.

Share This Page