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Trump specifically targetting "chronic fatigue syndrome" funding for cuts

Discussion in 'General ME/CFS News' started by AndyPR, Mar 31, 2017.

  1. AndyPR

    AndyPR Senior Member

    Sorry, this article has already been put into a couple of other threads already but I thought it deserves it's own thread due to what it tells us.

    My bolding and font size change for dramatic effect. :)

    http://www.genengnews.com/gen-news-highlights/trump-proposes-immediate-12b-cut-for-nih/81254107

    I know that this is far from a done deal, it has to go through Congress and, recently, all sides there seem well disposed towards maintaining and increasing research funding. But when our condition is being specifically targeted, can we take the chance? So I'd plead with our American members to contact their representatives, especially if they are Republicans, to push them not to support these proposed cuts.

    ETA: Solve ME/CFS have put together details of how to find your representatives details and what to say and do - http://solvecfs.org/action-alert-call-or-e-mail-your-member-of-congress/

    They are also, in coordination with MEAction, setting up advocacy efforts in DC, more details here from Solve, click here, or from MEAction, click here
     
    Last edited: Mar 31, 2017
  2. Snow Leopard

    Snow Leopard Hibernating

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  3. Mary

    Mary Senior Member

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    Thanks for the update @AndyPR - this is horrific. FWIW, a majority of Americans do NOT support Donald Trump. Most people I know are just as horrified by him as the rest of the world. How did he get elected? It gets a little complicated and I won't go into it here. This may be too political to post here. and if it's removed, okay.
     
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  4. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    "Be very careful what you wish for...you may just get it!"
    Yeah all those morons sure got what they wished for...alas rest of the world has to live with putting an evil, ignorant, stupid, useless SOB in the Whitehouse, too, blerg!

    Trump & Co are servants of Beelzebub, Dark Lord of the Fly Away Hair and Shit For Brains
    (and old fashioned as it is beyond my humorous take, I mean that in the darker sense as well)
     
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  5. ash0787

    ash0787 Senior Member

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    Sounds bad on the surface but without going into specific details I cant condemn it yet ...

    When it says 'this would help eliminate less effective research' are we sure its not referring to the psychological subset of the CFS research ? or is that the minority of what is done in the US, in contrast to the UK ? or do most NIH grants go to biomedical research ?

    Also I'm a little confused because the thing I always hear is that the NIH barely gives researchers any money for CFS related proposals and notably declined Dr Davis on multiple occasions.
     
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  6. Snow Leopard

    Snow Leopard Hibernating

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    Most NIH grants go to biomedical research. Worldwide, a majority of medical research for specific illnesses is funded by the NIH and this is also true for ME & CFS.
     
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  7. Mary

    Mary Senior Member

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    Absolutely! :thumbsup:
     
  8. Basilico

    Basilico Florida

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    I just wrote to my Representative today. Just wanted to emphasize that people need to email/call their Representative, not their Senators. You can click on this link and enter your zip code to find the name and email address of your Rep: http://www.house.gov/representatives/find/
     
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  9. Murph

    Murph :)

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    Luckily All my favourite researchers are looking into Systemic Exertion Intolerance Disease!

    (I honestly wonder if you can hide from a bureaucratic axe by labelling your disease differently. Probably)
     
    Last edited: Mar 31, 2017
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  10. Forbin

    Forbin Senior Member

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    This seems to be the document where the quote can be found:
    It's actually a sort of spreadsheet:
    CDC Cuts.jpg
    It may be hard to see at this resolution (and impossible if you are not logged in), but this cut is aimed specifically at the CDC's Public Health Program.

    I'm not trying to be Pollyanna about this, but cutting "duplicative research" at the CDC into CFS does not seem to be the elimination of all funding for ME/CFS at HHS. I'm not even sure what the CDC is doing in regard to CFS these days, other than maintaining a website. Given the CDC's past efforts to "help" us, such as their studies linking CFS to childhood sexual abuse, etc., I'm not so sure that I should mourn this cut, so long as ME/CFS research continues to be funded at the NIH.
     
    Last edited: Apr 1, 2017
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  11. AndyPR

    AndyPR Senior Member

    While I can understand the argument that the CDC has been crap in the past, therefore them losing the funding they use on ME would be no bad thing, I take the broader view. If an area of governmental funding is ever lost completely, reinstating it will not be an easy thing to achieve, and given that overall funding for the NIH is under threat as well, I think we should fight to retain any funding that we get for our condition as much as possible.
     
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  12. Forbin

    Forbin Senior Member

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    It looks like eliminating the CDC's budget for CFS was the CDC's idea. Basically, it looks like they want to keep the money but use it for other things instead of their current CFS program. Perhaps they think those other things might have more impact on CFS than what they are doing right now, but it's not very clear to me what their intent is.

    This is from the CDC's "Overview of the Budget Request" 2017:
     
    Last edited: Apr 1, 2017
  13. RogerBlack

    RogerBlack Senior Member

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    Is there a list of studies the CDC have funded in the past few financial years out of this?

    ...
    https://www.cdc.gov/cfs/publications/index.html#pubs-2013
    Some of these do not seem particularly targetted at CFS, and if they come out of the CFS budget, are of questionable value.
    Can anyone find more recent information and study funding levels?
    A number of the prevalence studies don't seem to be being done elsewhere and are moderately valuable.

    I would be interested to know how useful their education campaigns have been.
    This could in principle be one of the more
     
    Last edited: Apr 1, 2017
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  14. Kina

    Kina

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    Please note, we have removed a number of posts on this thread as they are rule breaches. We have a rule that states that any posts/threads of a political nature that are unrelated to ME/CFS will not be permitted. The rule is as follows:

    Also please do not take threads off-topic by criticizing moderation decisions in the middle of a thread. In this case, we weren't finished moderating the thread which led to a accusation of censorship which is absolutely untrue and unfair.

    Please keep the conversation related to ME/CFS.

    Thank you.
     
  15. *GG*

    *GG* Senior Member

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    I would rather freak out now, deplete my energy etc..The sky is falling!

    GG
     
  16. caledonia

    caledonia

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    Depending on how you read this, it sounds like they're eliminating the entire CFS program.

    The main thing the CDC has been working on is the CFS Multisite study. It started in 2012 and was to be a 5 year study, which means it will wrap up in 2017 (this year).

    This isn't the first time CFS funding at the CDC has been a target. The funding was destined to be cut last year during the House or Senate Budget Appropriations, but restored when patients noticed the cut and complained.
     
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  17. AndyPR

    AndyPR Senior Member

    Nice find. That document, as I understand it, is the CDC's response to the President's budget. So they have been told how much money they are potentially getting, and within that limit, they are saying what they would fund and what they wouldn't, and why.

    As an example, this is an increase
    as is this
     
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  18. Dolphin

    Dolphin Senior Member

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    I think you are right that most of the multisite studies so far published are not that interesting. However they have collected a lot of data so I expect future papers to be more interesting.
     
  19. Dolphin

    Dolphin Senior Member

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    Here is a post with the same wording from June 2016.

    http://forums.phoenixrising.me/index.php?threads/cdc-2017-budget.45415/

    So I'm not sure if that is an up-to-date link. Alternatively they are using the same wording.
     
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  20. AndyPR

    AndyPR Senior Member

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