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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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
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.
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....
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.
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.cort:
- 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?
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.
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!