Reply from nih- collins' office

Recovery Soon

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Just got this an hour ago-

Dear Mr. ....

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 NIHs 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,

/s/

Dennis F. Mangan, Ph.D.

Co-Chair, Trans-NIH ME/CFS Working Group

Senior Research Advisor

Office of Research on Womens Health,

Office of the Director, NIH
 

George

waitin' fer rabbits
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Hey RecoverySoon

It seems like one of the better letters, nice tone, even if it doesn't exactly promise anything. (grins) How do you feel about it?
 

Cort

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Yes it makes you feel good and its good that he refers to millions of ME/CFS sufferers but there's no commitment to additional money and if you don't count the XMRV grants funding for everything else on ME/CFS is lower than ever. There may be good research on different aspects of ME/CFS - in other disorders - but there's been no attempt to integrate that info into CFS.

I like Dennis - I think he's working hard for us but we need not a little more money but ALOT more money and they need to provide that. Hopefully he can help us out in that area.
 

Recovery Soon

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Hey RecoverySoon

It seems like one of the better letters, nice tone, even if it doesn't exactly promise anything. (grins) How do you feel about it?
George- I don't feel placated by the response- though I am surprised to see that everyone did not receive the same one. I think it's indicative of a rising tide where they are sensing that we're not going to take it anymore- and they have to take it seriously from a PR perspective. but I don't don't see a commitment to additional funding, as Cort mentioned. I get the sense that they think the word "millions" will wow us.

If my memory stands, the amounts he mentioned are comparable to what is spent on hayfever. I'm not wowed by that.

I think the advocacy is working and we have to keep pounding.
Unfortunately, I'm not knowledgeable of funding enough to articulate a reply that specifically challenges the deficiencies.

If someone looks at the letter, and gives me a couple bullet points- I'll be happy to craft and send a reply, and challenge him to do more.
 
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This is pretty much a form letter: nice tone but saying not much. It refers to the general fund amount, and to the scattered range of research being funded, but nothing programatic or focused in nature, except the mandate for NAID to evaluate the XMRV connection. We need to keep the pressure and public eye on for the "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" venture, as the kind of leadership tone going into this conference will be critically important to what ends up happening. Hopefully there will be more cumulative findings to jump start this in the right direction by then.
 

Navid

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sorry to burst your bubble jim or anyone else...but i recd the same letter word for word : )...an hour or so ago too.

yep, we just gotta keep the eye on the prize. they know we are out here, we're smart, persistent and know how to use the internet.

hopefully treatments will start trickling out sooner than later
 

Navid

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that's what i wrote in my original letter to collins...see if he listens....we have a large patient base dx'd w/me/cfs by cheney, peterson, klimas, bateman, levine, enlander, komaroff, montoya....many of us have tested positive for xmrv...use us!!!!!
 

Wonko

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odd - I thought the US had no ME - only CFS - according to the authorities - I could be wrong but I was under the impression that they had their own WHO book to reflect this (amongst other illnesses they dont wish to acknowledge exist) - so why is he refering to ME/CFS?

I'd also like to point out that I'm both fairly sure I have ME (unless i go to the US in which case I would be magically cured) and that I'm male - I'm not a doctor or even a healthcare professional but fairly sure on both - so I doubt a research department studying womens health is likely to find I suffer from any female only ailments - but what do I know - I'm not a psychiatrist
 

alice1

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Although it may not be the response we were looking for kudos Recovery Soon for writing and sending your letter.
Maybe we should send letters every month or so and have all who post here sign it to always remind them we're watching and fed up waiting.
I recieved am email today from a major HIV/AIDS orginaization who were asking for signatures for the continual privacy laws to extend even further.I admire their tenacity and oneness that have helped them achive the gains they've made.Many years of hard work.
 

August59

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Is the following statement from that letter really accurate?

""In early September, Dr. Collins reiterated NIHs 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.""
 

pictureofhealth

XMRV - L'Agent du Jour
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I'd also like to point out that I'm both fairly sure I have ME (unless i go to the US in which case I would be magically cured) and that I'm male .....
so I doubt a research department studying womens health is likely to find I suffer from any female only ailments ...
Wonko makes a really good point here. ME is not a 'Womens' disease' specifically and therefore perhaps we could also be asking the NIH to move ME studies to a more suitable department.

Perhaps we could have a 'Men Only' campaign to the NIH to make the point -

'Dear Director Collins, I have ME and I am a MAN.' and
'Dear Director Collins, I have ME and I am also a MAN.', or
'Dear Director Collins, yeah ME too. What's with all this 'woman' stuff?!'

Or any variation thereof to the same effect ...

I mean, how many of you ME guys are out there? This could really create some momentum.
 

eric_s

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I think it's a very good letter. My guess is that funding will dramatically increase, once the connection between CFS and XMRV is confirmed (i mean to authorities and the mainstream). The Lipkin study, BWG work or the Alter study involving 1000 subjects should do this.
I like a lot how he mentions our number, that it's serious and we need treatments and that they want to accelerate biomedical research.
I think we were right in the past to be very critical but i feel like things are turning into a good direction. Now all we need are more positive studies, preferrably by government labs. Of course, we should keep an eye on everthing, but also appreciate it if they do something good for us.