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If ME were treated fairly, what % of the NIH budget would it get?

Discussion in 'Advocacy Projects' started by Sasha, Sep 18, 2012.

  1. Sasha

    Sasha Fine, thank you

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    The next CFSAC meeting is in a couple of weeks, with the opportunity for advocacy. On the thread about the meeting, I suggested that it might be a good idea for those speaking at the meeting to have two or three major points that they could all mention (if they chose) rather than 20 people mentioning 20 different points and it appearing that there's nothing major that we need.

    In the XMRV press conference today, Dr Lipkin mentioned that the NIH might be up for massive cuts ("sequestration" - I'm not up on it). If that's so, then those cuts could be used (again) as an excuse not to increase our funding. I think it's time it was recognised that whether the total NIH budget is $1 or $1 billion, ME research should get its fair share so cuts are irrelevant. Maybe that should be one of the major points to be mentioned at CFSAC?

    It would be good to know what that fair share would be, in percentage terms. Has that research been done?

    It could be a great title for an advocacy push - "the missing 1%" or something.
     
    Izola and Overstressed like this.
  2. Sasha

    Sasha Fine, thank you

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    Just googled on "NIH sequestration" and it's a potential 8.2% cut to the NIH budget. If ME research suddenly got its fair share of the remaining 91.8% of the NIH annual budget of approx US$30 BILLION then...
     
  3. Sasha

    Sasha Fine, thank you

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    Can just see the slogan now: "Help us find our missing $100 million"...
     
  4. Christopher

    Christopher Senior Member

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    It seems the email/fax/telephone campaign regarding XMRV we did a while back ruffled feathers, if I remember correctly. It's not as important as we're liked as much as that we're heard. The federal government has a responsibility to fund research into a syndrome its citizens are afflicted with. A good start would be moving CFS out of the Office of Women's Health into a more suitable program at the NIH. There are 2 programs it could be suitable for - infectious disease and neurology. There is absolutely no reason it should still be in the OWH when there are more appropriate institutes to house it.

    Someone put this together previously and it can be used as a template for future campaigns.
    https://sites.google.com/site/phase2dustup/
     
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  5. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    I agree, seems sexists that it's in the Women's office, I know the majority of sufferers are women, so what are we, chump change?

    GG

    PS I believe the jump in funding to NIH was due to stimulus spending, so I don't think there is any excuse not to fund our disease!
     
  6. Sasha

    Sasha Fine, thank you

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    I agree ME is in a weird "bit of the building" - but my question is, what % of the total NIH budget are we entitled to, given disease burden - how many people have the disease and how severe it is, compared to other diseases such as MS, cancer, HIV, etc.

    I think this kind of study falls into the realm of health economics - anybody got any expertise there on how to do a literature search, even, to see if this study has already been done?

    I think I saw a study a while back that gave a league table of funding and prevalence (i.e. how many people had each disease and how much research funding that disease was getting).
     
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  7. taniaaust1

    taniaaust1 Senior Member

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    Id personally think it would have a similar disability level generally as MS as both diseases have severe ones and many ones who arent so bad as the others.. I actually know two people with MS and they can both do more then I can. Neither even need home support like I do (thou never do work full time..one thou works part time).

    Wow.. why has wikipedia and studies found such varience range in MS.. Im astounded at reading that as that is even varying far worst then ME and CFS varience is and we all know that is mostly to do with the different diagnostic criteria. If we take that top number of 150.. it means ME/CFS is far far more common then MS is so should be being massively more funded then MS is being.
     
  8. Sasha

    Sasha Fine, thank you

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    I've often read that ME has a similar severity profile to MS (which makes it a handy comparison group) but that MS is less prevalent than ME, which indicates that we should get more funding than MS.

    To work out what's fair, a study would need to look at both things and sort of multiply them up - what's the average quality of life rating and how many people have the disease - and come up with a total disease burden figure. You could then get a supertotal for all diseases and then divide the ME total by that supertotal to get the % of funding we should be getting.

    Has no-one really done that study? What a great project for someone, if not.
     
  9. Snow Leopard

    Snow Leopard Senior Member

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    mezombie and Sasha like this.
  10. user9876

    user9876 Senior Member

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  11. Sasha

    Sasha Fine, thank you

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  12. Purple

    Purple Bundle of purpliness

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    (Bolding mine) Absolutely - advocacy is not about being popular but about being effective.
     
  13. Andrew

    Andrew Senior Member

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    http://report.nih.gov/categorical_spending.aspx

    These aren't strictly budges; more a reflection of what is spent. But they explain this.

    It looks like CFS gets 6 million. Multiple Sclerosis gets $121 million. The two are often compared in terms of impact. So CFS should get $121 million. But read some of the others.
     
  14. Sasha

    Sasha Fine, thank you

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    Thanks, Andrew, I'll take a look at that. MS is often given as our counterpart in terms of profile of disease severity, but I think it is less prevalent than ME so we should get more than $121 million if MS was the only comparator. Which, as you say, it isn't but it's already looking like, "Help us find our lost $121 million!"
     
  15. Sasha

    Sasha Fine, thank you

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    This is interesting (from googling on "nih funding DALY"):

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3044706/

    It's a report on how little relationship there is between disease burden and NIH funding of specific diseases and how that relationship hasn't strengthened over time. We're not the only ones getting short-changed.
     

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