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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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Myra McClure off the SEP! Yea Us! Now lets get some actual scientists on it!

Myra McClure said in an email to PR member Marty that she has stepped down from the "CFS" SEP! We did it!

Now lets get the dentists and psychologists (except for Friedberg) replaced with virologists, retrovirologists, neurologists and immunologists, so send out this email. OK, OK, I'll let you celebrate and rest for a couple of days, but then come on back and do this two-minute advocacy. Again: Yea Us!.


How to do this extra-easy advocacy:

1. Copy the following subject line and paste it into the subject field in your email.

Subject Line:
Federal Law Requires More Changes be Made to NIH's "CFS" SEP Now!
Click to expand...


2. Copy the following text (the letter) into your main field of your email:

email text:
I am writing in response to the latest malfeasance by NIH in response to the epidemic of the severe neuro-immune disease ME (aka "CFS").

I strongly object to the makeup of the new "CFS" Special Emphasis Panel (ZRG1 CFSH80) grant review committee at NIH. I am happy to hear that Myra McClure is no longer on the panel. Notwithstanding this improvement, additional changes must be made to conform the SEP with federal law.

The many psychologists and dentists on the panel are not sufficiently qualified in virology or molecular biology (or ME ("CFS") research in general) to be evaluating grant proposals on ME. Prof. Fred Friedberg is a psychologist, but his membership on the panel is appropriate since he has ME and has published a good amount of original research on it.

Federal Law requires that SEPs be made up of people who have expertise in the field for which they are reviewing grant applications. NIH has substantially and continually violated this law for almost all of the quarter-century during which it has reviewed ME grant applications. The last panel was much better. The existing science shows that the most appropriate fields of expertise in ME are: virology, retrovirology, neurology, cardiology, endocrinology, pain medicine and immunology.

To my informed understanding, ME experts (including researchers, clinicians and patients) want to see the following ME authorities serve on the "CFS" SEP:

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 experts (including researchers, clinicians and patients) do not want to see the following inappropriate people serve on the "CFS" SEP:

Deirdre Buchwald, John Coffin, Suzanne Vernon, 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.

TMJ Disorder has been added as a subject of the "CFS" SEP. This is inappropriate since these are not very related disorders and call upon different specialties for study.

As you know, the related quarter-century long problem is an insultingly low amount of NIH funding for ME research which was $0 per year for several years and has been $3M - $5M in the last few years. Obviously, ME demands funding commensurate to the aggregate illness burden it places upon the nation, which is greater than that of HIV/AIDS. HIV/AIDS receives an appropriate $3B in NIH funding (down from $15B years ago). ME should thus receive $3B in NIH funding for valid biomedical science.


Therefore, I DEMAND:

(1) that the committee remove the psychologists who do not have expertise in ME ('CFS'), and the dentists from the panel. Prof. Friedberg should not be removed since he has a great amount of experience with ME. They should be replaced by qualified biomedical researchers who have significant experience with ME ('CFS'); and

(2) that the TMJ SEP be separated from the "CFS" SEP.

(3) that ME science receive a 1000 times (not percent) increase in NIH funding to an appropriate level of $3 Billion per annum.


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

Thank you!


Sincerely,
Click to expand...


3. Sign the letter at the bottom.

4. Send the letter to the following addresses:

kathleen.sebelius@hhs.gov

howard.koh@hhs.gov

Wanda.Jones@hhs.gov

francis.collins@nih.gov

james.anderson@nih.gov

vivian.pinn@nih.gov

janine.clayton@nih.gov

dennis.mangan@nih.gov

toni.scarpa@nih.gov

hoshawb@csr.nih.gov

AskDrH@ostp.gov (President Obama's Science Advisor, John Holdren)


Extra Credit:

Go to these contact pages for your members of congress and president and send the email to them:

Find your congressperson at writerep.house.gov/writerep/welcome.shtml

Find your senator at senate.gov (search in top right corner)

http://www.whitehouse.gov/contact/


Congratulations and Thank You! You just saved ME patients from future suffering!

Comments

R
I think group actions should be adequately discussed first. There is a lot of knowledge, experience, and wisdom that can be used to put together the best possible collective action if it is something that should be done.
 
H
Are there physical addresses to send paper mail to the above parties? Paper mail is such an oddity now that it gets attention. I'm in good enough shape now that I can afford the 15 min to load envelopes, print, sign etc. Best to use the energy while I have it!
 
justinreilly
Roy S;bt4192 said:
I think group actions should be adequately discussed first. There is a lot of knowledge, experience, and wisdom that can be used to put together the best possible collective action if it is something that should be done.
Click to expand...

Roy,

As things stand now, my current opinion is that it probably doesn't hurt to have someone like me put up the letter he sent and make it easy for those who have similar opinions to mine (which isn't everybody obviously) be able to send out a letter easily. I think it could do some good. For example, we have seen McClure step down from the SEP in response to the individual responses like mine before a group document could be put together.

I think it would be ideal if some vigilant org could respond appropriately and in a timely fashion with statements. This is the job of an org like CAA, but they are not doing it well. If there is a group, eg on mecfsforums.com, that would like to do this I would be very happy and mostly defer to them if i substantially agreed with their approach.

I do not have any of the long experience in ME lobbying that you do. So, I want to hear more of what you think on this and give it the respect your opinions on lobbying obviously deserve. I know you feel it is important and more effective for everyone to speak with one voice. Can you tell me more about that? Maybe a discussion on a thread on some forum?
 
J
You might want to take David Streeten off of that list. I don't think anyone wants to be digging the poor guy up.
 

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