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Article: Inadequate NIH Funding for CFS by Pat Fero, MEPD

I have always fely like I should play the hand that has been dealt to me, but I'm beginning to truly believe that someone is playing dirty poker. It is ashame that it is my own government that I pay taxes too!
Thanks Cort for running this article by Pat and thank you Pat. I have the highest respect and confidence in Pat Fero and no one is more interested than she is in helping us get this figured out w/ CFS so we can get the right medical treatment. We need to seriously take heed and try to figure out organized actions to take.
Thank you for this hard work Pat.

$38,268,539 over 10 years may sound minimal - and it is.

But shockingly, it is $38,268,539 more than the Medical Research Council's contribution to general biomedical research funding for ME/CFS in the UK, which currently, over the past 10 years, stands at:


That's right - zero. Despite repeated patient and patient group requests and research proposals being submitted to them by biomedical researchers and repeated claims on their website to be interested in biomedical research grant application proposals for ME/CFS - they have funded none of them, at least none that we know about.

As several psychiatrists sit on the MRC's proposals/funding/grant board, they have however funded psychological intervention strategies, which no ME patient wants, to the tune of several million 's pounds, which have subsequently been rolled out nationwide onto the National Health Service.

That is institutional bias in the extreme.

It is possible of course that if XMRV pans out elsewhere they may start funding more XMRV research here in the UK ... but the shock waves of the paradigm shift might kill them.
That's a good question; everyone at the table got one at the CFSAC meeting but Dennis wasn't at the table; Eleanor Hanna was - and it would have done no good with her......Hmmmmm
Pat Ferro you are a CFS Warrior Hero! Bottom line Money Information is something that the talking heads understand. It is the language of politics. Your hard work is greatly appreciated. As somebody quoted from Watergate, "follow the money" and you will fiind the true story. You have followed the money and made sense of it.

At the end of the day when all the "political back and forth muddies up the waters" your work and insight will clear these waters and leave them with the cold hard truth.

Descison makers now have a tool that sets the record straight. Numbers don't lie. I imagine that decison makers in the past have glanced at the "in house" presentation of the funding parameters and it looked okay.

I believe this transparency will make a difference to future descision makers.

I posted this elsewhere but thought it was interesting to see that they are spending $11 Million for fy2010? This was an email back to me from Dennis F. Mangan, Ph.D. (Co-Chair, Trans-NIH ME/CFS Working Group). Did I read this correctly???

Publication of XVRV findings
ME-CFS_Research_Working_Group (NIH/OD) to you -
From: ME-CFS_Research_Working_Group (NIH/OD) <ME-CFS_Res_Wrkg_Grp@mail.nih.gov>

Dr. Francis Collins, Director, National Institutes of Health, has asked me to respond to your inquiry regarding National Institutes of Health (NIH)-supported research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

First, let me express my heartfelt concern for you and the millions of other men and women suffering from ME/CFS. This is a terrible disease and we must all work together, doing what each of us can, to find safe and effective treatments for ME/CFS and restore lives to health.

In early September, Dr. Collins reiterated NIH’s commitment to accelerating biomedical research focused on ME/CFS. It is through the receipt of meritorious research proposals that funding can increase. In FY 2010, the NIH provided approximately $6 million for ME/CFS and XMRV research grants, contracts, and other types of awards to universities, hospitals and research organizations, including the Whittemore Peterson Institute. An additional $5 million was awarded to investigators studying aspects of ME/CFS, such as pain, neurological complications, genetics, blood pressure, retrovirology, and sensory processing.

NIH is currently soliciting ME/CFS research applications through two Program Announcements. To help investigators prepare applications for research funding, NIH holds grant-writing workshops and assigns program officials to answer questions and assist with their application submissions. Dr. Collins recently asked the National Institute of Allergy and Infectious Diseases, one of the 27 Institutes and Centers at the NIH, to study a possible connection between XMRV infection and ME/CFS by using blood samples from patients diagnosed with ME/CFS.

The Trans-NIH ME/CFS Research Working Group (WG) is composed of experienced program officials highly committed to helping advance NIH supported research on ME/CFS at universities, hospitals and research institutions. The WG members serve as conduits to their respective NIH Institutes or Centers to facilitate communication between scientists and NIH leadership. The WG is hosting a major State of the Knowledge Workshop in 2011 to bring together scientists and clinicians to evaluate current ME/CFS data, propose priority areas that need further attention and then identify mechanisms for supporting such critical research.

Additionally, the NIH works with many Federal agencies and ME/CFS advocacy groups through the Department of Health and Human Services Chronic Fatigue Syndrome Advisory Committee. It is also expected that by cooperating in planning interdisciplinary initiatives, the NIH and its partners will increase support for multidisciplinary and interdisciplinary research with the goal of finding treatments and, hopefully, a cure as rapidly as possible.

Thank you again for your interest in the NIH efforts to increase ME/CFS research. We at NIH fully support your assertion that ME/CFS patients deserve the very best scientific information we can possibly produce.
Sincerely yours,
Dennis F. Mangan, Ph.D.
Co-Chair, Trans-NIH ME/CFS Working Group
Senior Research Advisor
Office of Research on Women’s Health,
Office of the Director, NIH