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Congress proposes to slash CDC's ME/CFS budget to zero

Discussion in 'General ME/CFS News' started by Bob, Aug 7, 2015.

  1. Bob

    Bob

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    Congress proposes to slash CDC's ME/CFS budget to zero.

    Some of you might be pleased to hear this news, but the CDC's multi-site research program is possibly the biggest research project that has ever been carried out into ME/CFS.

    The Solve ME/CFS Initiative has some brief info about this, and suggests writing a letter to congress (and they provide a letter template to download as a Microsoft Word document):
    http://solvecfs.org/cdc-letter

    And Jennie Spotila (@jspotila) has written a blog about it and is indifferent (at best) to the CDC's ME/CFS program getting funded. Note the extended and dynamic discussion in the comments section after the blog:
    http://www.occupycfs.com/2015/08/04/no-cdc-funding-for-cfs/


    This graph is from the Solve ME/CFS Initiative's website, copied from the page 59 of the Senate's report:

    [​IMG]


    Edit: I've posted a short summary of events, and action that can be taken, later in this thread:
    http://forums.phoenixrising.me/inde...e-cfs-budget-to-zero.39150/page-3#post-627737
     
    Last edited: Dec 16, 2015
  2. alex3619

    alex3619 Senior Member

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    I have not read all the comments yet. I would not be unhappy to see the CDC lose funding as such. However I think we need the multisite study, even though it has limitations.

    What I think we are missing in the discussion, and after I have read all the comments I might post this on Jennie's blog comments, is that this is political. This is denial of funding for CFS ... not some funding, nor proportional to other cuts, but total cessation of funding. This could spark a very dangerous precedent. It could make it easier to block all ME and CFS funding.

    This is particularly the case if we do not react to funding cuts. If we don't care enough to react, what might be slashed next?
     
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  3. Bob

    Bob

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    This is the Solve ME/CFS Initiative's letter template. (I've copied it from their downloadable Word document)...

     
  4. Nielk

    Nielk

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    Regardless of the debate whether the CDC has any merit in their actions regarding ME/CFS, why are we not more OUTRAGED that the senate appropriations committee has effectually ERASED us!

    This is how much they think of us: -0-

    Have we been so abused for decades that we just look at this and sigh while turning the page?
     
  5. Bob

    Bob

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    I absolutely agree. I find this news rather shocking and a kick in the teeth. I only heard about this for the first time yesterday, via Jenny's blog, and I was surprised that it hadn't been discussed on Phoenix Rising or Twitter or anywhere else. Our whole community should be kicking up a massive storm about it, in my opinion.

    This is a good chance to lobby congress for a specific outcome that congress members can easily respond to and achieve on our behalf. (And congress-people like to have easy specific outcomes that they can easily achieve so they can demonstrate that they are doing something useful.)
     
    Last edited: Aug 7, 2015
  6. Nielk

    Nielk

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    I almost wonder if this was a mistake because it is so ridiculous.
    has this ever been attempted previously with other diseases - erasing their funding, totally?
     
  7. Scarecrow

    Scarecrow Revolting Peasant

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    I'm looking at this in disbelief and trying to convince myself that they must have something else planned.
     
    Last edited: Aug 7, 2015
  8. Valentijn

    Valentijn Senior Member

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    Yes, I'm a bit confused by the situation. Does it mean that all funding is removed? Or is it just not specifically being funded by congress by name, but will still get funded by the NIH as an un-named piece of the NIH funding pie?
     
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  9. Bob

    Bob

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    I'm not sure of the answer either, but seeing as the whole budget for the "Emerging Zoonotic and Infectious Diseases branch" (ME/CFS falls within this branch) has been reduced by congress, in all areas, I can't imagine that they have decided to fund ME/CFS via another mechanism. In any case, it seems like a backwards move for us if ME/CFS is not specifically named.

    The 2016 fiscal year request for ME/CFS is $5.412m, and congress have drawn a line through it, possibly because they consider 'fatigue' to be unimportant, because "only lazy people suffer from fatigue, and it's obviously not a dangerous virus or anything like that". (I imagine that's how the thinking might have gone in congress.)

    Surprisingly, the biggest reduction in the budget is in the important area of antibiotic resistance, for which congress have all but wiped out the funding. I'm very surprised by that, and it suggests that congress people do not understand much about science or medicine!
     
    Last edited: Aug 7, 2015
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  10. Bob

    Bob

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    Last edited: Aug 7, 2015
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  11. Snowdrop

    Snowdrop Rebel without a biscuit

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    I find I'm having trouble believing this. It's so totally out of nowhere.

    I am clueless as to how the US political system works. I feel that we need to find someone who knows what's motivating this move by congress to tell us what's going on. Either congress is unaware of what's happening in ME research or they are aware of some other funding (I wouldn't have a clue what other funding) or this is a deliberate swipe?

    We can guess but we don't know. Before doing anything I'd like to understand; what just happened?
     
  12. Sean

    Sean Senior Member

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    Hmm. o_O
     
  13. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    Is this a decision based on the assumption that CFS is not an infectious disease after all and therefore should not come under this budget?
     
  14. Bob

    Bob

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    As Nielk suggests, whatever our opinion about the CDC, I'm not sure if it's wise for us to allow this to go unchallenged.
    I'm feeling more annoyed about this as the info sinks in.

    From a personal point of view, I tend to agree with most of Cort Johnson's comments on Jennie's blog re the importance of the multi-site study, and the positive change of focus at the CDC.
    I know that my opinions re the CDC aren't shared universally, but I feel very strongly about CDC's multi-site program.

    Anyway, this is the comment that i've posted on Jennie's blog...

    --------------------------------------------------------------------------

    I think this is a healthy discussion to be having within our community. I'm sympathetic to all the points of views expressed, but I absolutely agree with Cort Johnson that we need to look forwards and not backwards, and to assess the research program that the CDC is currently undertaking. And I believe that our community cannot afford to lose the multi-site program.

    The multi-site study is huge, and probably the biggest research program ever carried out into ME/CFS anywhere in the world. It's a combination of an epidemiology study, with a large and complex biomedical study, and it has vast potential to inform us about ME/CFS. We've needed this for years, and it's what the CDC should have done 30 years ago. It's not perfect, but it will be a really important study, and something to build on. Is this really the time to be stopping CDC funding, just after they've implemented this?

    I think we should give Dr Unger credit for what she has put into place, rather than only criticising what she hasn't yet changed.

    The CDC's ME/CFS program has changed dramatically since Dr Beth Unger took over. If we look at their current research program, as Cort has outlined, rather than their promotional material, I find it almost impossible to criticise it. The promotional material is important, and they need to change it.

    I believe that Dr Unger will follow her evidence, which is what she has said she will do, but it will take her years (from the start of her program) until she collates her own evidence that she is comfortable to use to make visible changes to the CDC's recommendations to ME/CFS. We can't expect her to change everything within the first couple of years of her tenure, even if we'd like her to. Some of us might find her approach too restrained, and not radical enough, but i'd rather have a good scientist directing a good biomedical and epidemiological research program, thoroughly, than a sloppy scientist who cannot plan or instigate long-term research objectives. I believe that the CDC's ME/CFS research program was reset by Dr Unger, and I think we must give it a chance to come to fruition.

    The 2016 fiscal year request from the CDC for ME/CFS is $5.412m, and congress have drawn a line through it, possibly because they consider 'fatigue' to be unimportant, because "only lazy people suffer from fatigue, and it's obviously not a dangerous virus or anything like that". (I imagine that's how the thinking might have gone in congress.)

    Apart from anything else, it's frustrating that Congress is singling out our community for this treatment, and i don't believe that we shouldn't be letting them get away with it. In my opinion, we should be indignantly fighting against this as a matter of principal. Do we really want to just sit back and let this happen? Do we want them to pull the plug on the biggest ME/CFS research program ever commissioned, just after it's got started? This is a good chance to lobby congress for a specific outcome that congress members can easily respond to and achieve on our behalf. (And congress-people like to have easy specific outcomes that they can easily achieve so they demonstrate that they are doing something useful.) This is a chance to educate congress about ME/CFS.


    Looking at the CDC's two latest ME/CFS research papers, this is exactly the sort of biomedical research that we need and it's not being done anywhere else. It does unfortunately use the empirical definition (The Georgia cohort), but even so, i can't critique the direction of travel. It's exactly the direction of travel that we want, and it's exactly the approach to investigating ME/CFS that we all want:

    Prediction of complex human diseases from pathway-focused candidate markers by joint estimation of marker effects: case of chronic fatigue syndrome
    Bhattacharjee M, Rajeevan MS, Sillanpää MJ
    11 June 2015 [Epub ahead of print]
    Hum Genomics 9:8.
    http://www.ncbi.nlm.nih.gov/pubmed/26063326
    http://www.humgenomics.com/content/9/1/8/abstract

    Pathway-focused genetic evaluation of immune and inflammation related genes with chronic fatigue syndrome
    Mangalathu S. Rajeevan, , Irina Dimulescu, Janna Murray, Virginia R. Falkenberg, Elizabeth R. Unger
    Available online 24 June 2015
    Human Immunology
    doi:10.1016/j.humimm.2015.06.014
    http://www.sciencedirect.com/science/article/pii/S0198885915001809


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    Last edited: Aug 8, 2015
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  15. Bob

    Bob

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    I don't think that has been explicitly stated in the congressional reports. And it's not been suggested that ME/CFS is transferred to another branch of the CDC, as far as I can see. I think they've simply struck it out without explanation. (I've searched the congressional reports for 'fatigue' and i can't find any references to it.)
     
    Last edited: Aug 7, 2015
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  16. A.B.

    A.B. Senior Member

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    This is confusing. After the IOM report called for more funding, the US congress decides to eliminate funding entirely. Is this really happening or just a misunderstanding?
     
  17. Bob

    Bob

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    This seems to be what the Senate report is suggesting, although they haven't instructed that ME/CFS program is stopped - they've simply struck out the specific funding allocation from the budget, without any explanation that I've yet been able to find. So the ME/CFS program could remain in place but the CDC would have to take the funding from their general funding pot. And we all know what that means in the long term for ME/CFS. The specific funding allocation remains unchanged and intact in the House of Representatives' document, as opposed to the Senate's.
     
    Last edited: Aug 7, 2015
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  18. user9876

    user9876 Senior Member

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    Did you look for it listed under SEID?

    My first thought was maybe they had reclassified it and put it under a new name.
     
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  19. Bob

    Bob

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    I have now. Nothing. 'Chronic Fatigue Syndrome' is mentioned once in each of the reports from both houses, but it's only in the graphs that indicate the funding allocations. I've posted one of the graphs above. The other graph is in the House of Representatives' report and proposes to provide the full funding allocation to ME/CFS.
     
    Last edited: Aug 7, 2015
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  20. Liz Willow

    Liz Willow

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    Please note that this deals with suggested funding (and therefore is not legally binding), and at the CDC only (NIH funding is not affected). It does not have an impact on overall CDC funding. CDC can always find money in its budget to study specific diseases if it wants to. A good analysis and discussion of this subject can be found here.
     

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