Article: NIH have gotten Myra McClure, Dentists and Psychs to go to Work on You!

You can view the page at http://forums.aboutmecfs.org/content.php?359-NIH-have-gotten-Myra-McClure-Dentists-and-Psychs-to-go-to-Work-on-You!

 

I think anyone with a copy of Osler's Web should mail their copy to the above list of people to make a statment!!! I plan on sending mine. Where can I find their address? Thanks.

I've included the specialties that have to do with ME: women's health, alcoholism, dentistry and mental health. I don't see why you'd want to contact inappropriate unrelated areas like Infectious Disease :mask: or Neurology, but i listed them at the end just in case. :Retro smile:

http://www.nih.gov/icd/instituteaddresses.htm


Office of Research on Women's Health
Office of the Director
National Institutes of Health (NIH)
9000 Rockville Pike
Bethesda, Maryland 20892

National Institute of Dental and Craniofacial Research
NIDCR Public Information & Liaison Branch
45 Center Drive, MSC 6400
Bethesda, MD 20892-6400

National Institute on Alcohol Abuse and Alcoholism
5635 Fishers Lane, MSC 9304
Bethesda, MD 20892-9304

National Institute of Mental Health
Office of Communications
6001 Executive Boulevard, Room 8184, MSC 9663
Bethesda, MD 20892-9663




National Institute of Neurological Disorders and Stroke
P.O. Box 5801
Bethesda, MD 20824

The National Institute of Allergy and Infectious Diseases
Office of Communications and Public Liaison
6610 Rockledge Drive, MSC 6612
Bethesda, MD 20892-6612 U.S.A.

Director
National Institutes of Health (NIH)
9000 Rockville Pike
Bethesda, Maryland 20892

 

My husband, son and I sent the letters. One of the Senators in our state is on the Health Committee and the other is a doctor. (I live in Wyoming). These two (Barasso and Enzi) usually repsond to all their constituents. That's the nice thing about living in the state with the least population. Hopefully, they will listen and change things.

Thanks for the great letter.

 

@Cort- on the excellent twiv podcast with Tuller, Racienello said he expected the XMRV studies to come thru one of the two virology panels (there are 7 more for HIV) and he's on one of them. do they go to the "CFS" one or to a virology one. if they go to a 'cfs' one, i think we should probably try to get them re-routed to virology because there does seem to be a competence for virology on the 'cfs' sep. What do you think? anyone else want to comment?

justin,

Agree. Tuller/Racienello make good points including the virology sep. Qualifications required for an ME/CFS grant reviewer are: Infectious Diseases, Immunology, and Neurology based on the scientific basis of ME/CFS. Reviewers and those who select them should first be required to read Byron Hyde's 700-page book The Clinical and Scientific Basis of ME/CFS edited by NIH's Paul Levine so copies should be available in the NIH library, as well as required to watch Dr. Komaroff's September 2010CAA webinar which summarizes the physical basis of the disease based on 5000 published articles.

Dr. Komaroff cites infectious agents, immune abnormalities, brain and ANS abnormalities, energy metabloism/mitochrondria abnormalities, and genetic studies as key. In Corinne's excellent chronicles of Dr. Peterson's diagnostic work-up and treatment you see him focused on these areas. Recommendations to change the grant review process are justified by ME/CFS science from 1934 to the present. The current sep must be changed.

 

I just sent the following edited version of the letter so helpfully posted above. My changes were just to keep it as focused and as easy for a harried staffer to absorb as possible. I post it here in case anyone wants to send it or a version of it:



I am writing in response to the latest problem in the NIH's response to the severe neuro-immune disease ME/CFS.

Decisions about grant funding for ME/CFS research are made by a "Special Emphasis Panel" (SEP), which federal law sensibly requires to be made up of people who have expertise in the field. But the new "CFS" Special Emphasis Panel (ZRG1 CFSH80) grant review committee consists primarily of psychologists and dentists who know little about the disease and have done little or no research on it.

The following members of current panel have done no ME/CFS research at all and are therefore be ineligible to be on the panel by law:
Chang
Meagher
Davis
Chen
Chialvo
Greenspan
Holmberg
Laresche
Plesh
Schiffman
Straud
Yao

The following members do have some ME/CFS research, though they are far from the leading experts. While they are rather poor choices, their presence on the panel at least doesn't violate federal law:
Baraniuk
Boles
Hanson
Theonarides
Gerger

Dr. Friedman is the only panelist who has done a significant amount of well-regarded CFS research.

The existing science shows that the most appropriate fields of expertise in ME/CFS are virology, retrovirology, neurology, cardiology, endocrinology, pain medicine and immunology. It is essential that we have experts from each of these areas on the panel.

To my informed understanding, researchers with the expertise to serve on the "CFS" SEP include: Leonard Jason, Ila Singh, Anthony Komaroff, Daniel Peterson, Paul Cheney, Frank Ruscetti, Sandra Ruscetti, David Bell, Susan Levine, Joseph Burrascano, Eric Klein, Judy Mikovits, Robert Silverman, Charles Lapp, Peter Rowe, Martin Lerner, David Streeten, Dharam Ablashi, Harvey Alter, Shyh-Ching Lo, David Strayer, Paul Levine, Robert Suhadolnik, Fred Friedberg, Donnica Moore, Lucinda Bateman, Sam Chow, Alan Light, Kathleen Light, Martin Pall, Rich van Konynenburg.

ME/CFS experts agree that the following people are inappropriate to serve on the "CFS" SEP: Deirdre Buchwald, John Coffin, Alan Dove, Brigitte Huber, Jonathan Stoye, Peter Manu, Edward Shorter, Christine Heim, any psychiatrists/psychologists from England or Germany, any scientists from the CDC or Emory University.

Please reply with what you are doing to bring the "CFS" SEP into compliance with federal law.

Thank you,


Thanks everyone for their work on this.

 

great letter julie R...thank you

 

Great letter! (I hope nobody was ever seriously suggesting Alan Dove? The man has Problems. When he showed up here briefly, many of us tried to engage in good faith with him, but he stomped off again. Didn't want to get the leper juice on him, I guess.)

 

I just sent the following edited version of the letter so helpfully posted above. My changes were just to keep it as focused and as easy for a harried staffer to absorb as possible. I post it here in case anyone wants to send it or a version of it.....


To my informed understanding, researchers with the expertise to serve on the "CFS" SEP include: Leonard Jason, Ila Singh, Anthony Komaroff, Daniel Peterson, Paul Cheney, Frank Ruscetti, Sandra Ruscetti, David Bell, Susan Levine, Joseph Burrascano, Eric Klein, Judy Mikovits, Robert Silverman, Charles Lapp, Peter Rowe, Martin Lerner, David Streeten, Dharam Ablashi, Harvey Alter, Shyh-Ching Lo, David Strayer, Paul Levine, Robert Suhadolnik, Fred Friedberg, Donnica Moore, Lucinda Bateman, Sam Chow, Alan Light, Kathleen Light, Martin Pall, Rich van Konynenburg.....

JulieR,

Outstanding letter, clear, well-written and organized.

Proposed researchers, David Streeten who worked with Dr. Bell on blood volume, passed away some years ago. List needs to be be reviewed. Suhadolnik? Strayer?

Drs. Chia, Montoya, Enlander might be added.