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Article: No Money Available for ME/CFS? Think Again - Testimony to CFSAC

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Nov 6, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Andrew

    Andrew Senior Member

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    Fantastic article. But what do ORWH and RFA stand for?
  3. Cort

    Cort Phoenix Rising Founder

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    Thanks


    • ORWH - Office of Research on Women's Health
    • RFA - Request For Applications - this is where the NIH says we are going to provide at least X million dollars a year guaranteed for CFS research - causing the grant applications to flood in. RFA's are critical for CFS because a) grant success is so poor as it is that researchers don't even try (see Dr. Glazer's testimony at the last CFSAC meeting) and b) grant acceptance rates tend to be much higher - so researchers know the NIH is actually serious about funding CFS research and they actually have a chance at getting a grant.
  4. Merry

    Merry Senior Member

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    Maddening. So should we stand (or lie) outside NIH buildings with tin cups and beg?

    Thanks for the article, Cort.
  5. Cort

    Cort Phoenix Rising Founder

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    Something! We should do something...

    It is a remarkable thing really. Love to get inside the NIH's head regarding CFS.
  6. glenp

    glenp "and this too shall pass"

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    Money available

    Over 3 1/2 million awarded for a study aimed at finding out whether therapy that focuses on education, symptom management or confronting avoided emotional experiences is the best approach for fibromyalgia

    http://www.wxyz.com/dpp/news/a-wayn...-will-receive-millions-for-fibromyalgia-study

    Recruitment for the study will begin in February 2011. Recruitment will be open to all patients with a diagnosis of Fibromyalgia. For information about participating in the study, contact the project manager at the Detroit/Southfield location at (313) 577-2258 or the Ann Arbor location at (866) 288-0046
  7. CFIDScandy

    CFIDScandy

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    Thank you, Cort, for your excellent article.

    Considering the CDC, in 1999, apologized to Congress for diverting money designated for CFS research during the "Outbreak of Mass Hysteria" at Lake Tahoe in 1984; admitting the amount of somewhere between $9-13 million dollars, as seen in the YouTube video, "XMRV- Requiem for a Spectre," background music of which is "Out of Balance," is bad enough. Now that it's been recognized and had over 5,000 peer-reviewed articles published, as well as named by the CDC as a real disease/syndrome, with accompanying diagnosis and treatment suggestions, plus the head of that department demoted after the NIH study was released on 08/23/2010; I know funding for research is beyond overdue. I believe this is a political problem for the CDC of such massive proportions that they don't want further investigations, since all the negative fallout will go straight back to them. (Always follow the money).
    Meanwhile, those of us who have it THANK those bold enough to take their own paths of discovery trying to ease the suffering of so many millions around the world. NEVER GIVE UP!
    I wish I could even convince my Physician husband and daughter of the real suffering, but they still think I am just lazy. My husband has not read the first article about either CFS/ME or Fibromyalgia. Any article I send to my daughter ends with a negative relpy.
    So I try to plug on through the day, knowing that exerting myself only leads to further setbacks. I am at a loss of what to do, but for the fact that my Immunologist has me on Valtrex again and I am improving very slowly. Also taking supplements recommended by another Rheumatologist in Sacramento. I've said enough, but am only through for now.
  8. Cort

    Cort Phoenix Rising Founder

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    Wow! That's a huge study! That's almost our entire budget. Whew. That is actually a quarter of the FM budget. The feds are very interested in this area for FM......I hope they are putting money into the science as well.
  9. Cort

    Cort Phoenix Rising Founder

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    I just looked up FM studies. That is by the biggest one but there are a variety of studies from behavioral to pathophysiological to mixtures of the two.
  10. xrayspex

    xrayspex Senior Member

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    hmmm its late, but confused, Glen why did you post about that fibro study? I get a PTSD like reaction now anytime I hear or someone brings up any kind of therapy for cfs or fm since it dawned on me how that would not have been acceptable for AIDs or cancer as a first line of defense......seems like the therapy studies should come after they figure out the virus part and its treatment....
  11. paddygirl

    paddygirl Senior Member

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    Hi CFScandy, I'm sorry to hear that about your husband and daughter. You are between a rock a hard place there. I suppose it's human nature to not be able to imagine others suffering, maybe we would all go bonkers if we could feel it all. I find that every now and again something in the news or in my own world breaks through and I am tormented by what others are suffering. Like my friends brother, whose wife had a new baby 3 weeks ago, on the same day their two year old daughter was given weeks to live with tumours on her spine and brain. The husband is keeping a bedside vigil with their little one while his wife minds the others at home a few hours drive away. But I think by and large we don't understand pain in others, I find even for myself I forget how bad it's been when it eases for a while. I hope you have lots of other support and maybe even access to a good support group.

    Paddy x
  12. voner

    voner Senior Member

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    cort:

    excellent, as usual.

    I have been pondering about these questions:

    • what is the funding/decicision making cycle with the NIH? - is the Gross $ amount per year allocated, then research grant money and giving out from that allocation per year?
    • what would be the best time within the funding cycle to initiate a campaign for ME/CFS/etc
    • I have been looking for a organizational chart of the various HHS organizations that could provide funding, if if they chose to, and delineating in that the people who control funding decisions?

    how these organizations make their decisions on how much money is allocated for various research areas is a black hole for me, evidently it's not so black for you..... any way for someone to enlighten us?

    Cort - thanks so much for your work.
  13. BEG

    BEG Senior Member

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    IMO, this is perhaps one of the most important articles coming from the CFSAC meeting. Thank you, Cort, for an excellent job.

    Thank you also for mentioning Dr. Ron Glaser's talk to the panel in your susbsequent replies. If Dennis Mangan was the man of the hour at this meeting, then Dr. Glaser was hero for a day. His blunt words brought audience members to their feet with placards turned over and thank you's quickly written by Bob.

    Dr. Glaser deserves our thanks. He says he will continue to research for ME/CFS. He is genuinely on our side.
  14. glenp

    glenp "and this too shall pass"

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    Money is available

    I posted this because many people with CFS also have FM and this study shows money is available and is being awarded.

    glen
  15. pictureofhealth

    pictureofhealth XMRV - L'Agent du Jour

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    Sounds like you are having the same difficulty with the NIH in the US as we are having with the MRC in the UK.

    They say that ME is a 'priority' area for funding (its stated on their website), but in reality, all biomedical research applications get turned down and only 'behavioural modificatons' such as CBT and GET get funded and fast tracked. Management and 'rehab' are cheaper options (ie doing nothing), instead of biomedical research into finding the cause of the illness and subsequent effective treatments.

    Glen's post about funding for Fibromyalgia says it all. As with ME, there seems to be no end of generous funding for psychological management strategies. As xrayspex says, just the thought of meeting with someone who wants to 'manage' my condition gives me a cortisol rush, which sure isn't contributing to a happy 'rehab'.
  16. Enid

    Enid Senior Member

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    Thanks for article as always Cort. It is simply intolerable in the 21st century one can with so much difficulty find one's way to a GP practice (the way things work here) to view their disbelief - actually so many problems it confuses them. Over to the brilliant Virologists - mostly US.
  17. Cort

    Cort Phoenix Rising Founder

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    Muy understanding is that the NIH allocates a general pool of money for a disorder that is based on the money it spent the year before and then nudges it up or down (or when needed, more rarely, increases it dramatically).

    The bulk of NIH money goes to grants and depends upon researchers applying for grants and getting their grads accepted. neither has occurred much with CFS; as Pat Fero's paper indicated grant acceptance rates have plummeted since the three CFS research centers were closed about 10 years ago. I think this is because either the research centers didn't have to go through the normal grant acceptance process or because the NIH was backing them, their grants companies fot an easier pass through the system. In any case grant acceptance rates are extremely low - about 6% I think - and, as Dr. Glazer, noted - that in itself stops researchers from trying to get grants.

    I know of several excellent grant proposals from the Dubbo project and the Pacific Fatigue Lab that failed. The WPI's one grant was reportedly submitted several times before it passed and researchers are now, ironically, bypassing the special review panel that was specifically set up for CFS in order to increase grant acceptance rates! In retrospect they are probably worse than they ever were.

    Once the grants get scored then the Trans NIH Working Group decides if they can find the money to fund them - another hurdle.

    Anyway there is no set amount for funding for CFS - there's kind of a general amount set aside for funding grants that come in and it gets doled out through the year.

    The NIH runs hundreds of research and treatment centers across the US for various disorders. These, of course, have specific budgets that are allocated every year.
  18. Cort

    Cort Phoenix Rising Founder

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    Finding out the funding cycle is a very good question for which I do not know the answer. The only thing I know is that they start developing the budget for the next year early - it seems to me about a year before.

    An organization chart would be great. I can tell you that the Trans-NIH working group, to my knowledge, comes up with most of the funds for CFS. The money for a grant for an immune study will most likely come from the NIAID. The money for an RFA grant - a major funding opportunity that states the NIH is committed to spend X amount on this aspect of CFS - has to come from the Institutes that make up the Trans NIH Working Group.

    The RFA is CFS's big chance to increase funding because the NIH commits to provide funds for a number of years above and beyond what they are already spending on CFS. So if they state they are willing to provide $4 million -as the last RFA did - that's $4 million in extra funding a year for 3 or 4 years. The last RFA when provided about $1 million a year because the NIH didn't approve that many grants but if it had our funding would've doubled just like that. The next RFA will be based on and follow the State of the Knowledge Workshop that will take place next year.

    That group as been a big problem in the past; it ook years to get them to provide money for the last RFA.
  19. Cort

    Cort Phoenix Rising Founder

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    Ironically ME may actually be more of a priority area for funding in the UK. I have a sneaking suspicion that the UK is devoting a more substantial proportion of their medical resources to ME than the US; unfortunately it's all one area!
  20. Sasha

    Sasha Fine, thank you

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    Our Department of Health actually calls it "a priority area"! They just did it again in the House of Lords (see the media subforum) and in response to a question from the Countess of Mar (an ME advocate), clarified that this meant 109,000 last year (about $150,000). :Retro mad:

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