Monday, August 15, 2011


The International ME Association (IMEA) and patient advocate and IMEA member Keith Baker have nominated Dr. Joan Grobstein, a neonatologist with ME, to sit on the Chronic Fatigue Syndrome Advisory Committee (CFSAC).  A graduate of Harvard College and University of California at Davis Medical School, Grobstein was serving as a neonatologist at Children’s Hospital of Philadelphia and the University of Pennsylvania when she became ill with ME more than a decade ago.  She has testified before the CFSAC committee several times, most recently last spring (see clip at the bottom of this post).

Baker says that Grobstein’s experience both as a patient and a medical doctor is a good blend of attributes that no one else on the committee has.  “And that’s a perspective that the committee needs,” he says.

Grobstein says she decided she wanted to join CFSAC because the current government response has been “inadequate. Access to care is extremely limited, and there is little funding for research into the causes and potential therapies for the disease,” Grobstein explains. “Patients have waited far too long for progress.”

The deadline for CFSAC nominations is August 17th. A former high-ranking government worker told CFS Central last spring that in his experience what gets the government’s attention is Facebook. In his view, the government has learned to ignore phone calls, faxes and emails. But Facebook campaigns, he said, “panic” them because they’re viral, embarrassing, and leave an indelible footprint.  Ideally, a campaign endorsing Grobstein’s bid could be started today.


  1. I have profound respect for Dr. Joan Grobstein, and I am still in awe of her testimony at the Oct. 2009 CFSAC, which was the first I knew of her. I think she would be a tremendous asset to the CFSAC.

    Patricia Carter

  2. This is a great idea!

    Today is the last day for nominations. The people who get appointed tend to have support from others.

    We have until 5 pm EST to support this nomination.

    Please, if you are able, write a short comment supporting the IMEA nomination of Dr. Grobstein to Dr. Nancy Lee, Executive Secretary of the CFSAC, and fax it to 202-205-2631.

    If you don't have a fax, you can send one via

  3. free faxes can be sent from to the office of women's health for Nancy Lee who has Wanda Jones old job now.
    The office of women's health fax is 1-202-205-2631

  4. A so-called "ME" group, the IMEA, nominates an MD with ME. Talks about ME/CFS. This is the CFSAC - for Chronic Fatigue Syndrome. This will have anything to do with ME? Or keeping the befuddled ME/CFS will keep everyone happy.

  5. Joan Grobstein sounds to me like an excellent candidate for this position. It is almost impossible to teach a doctor how severe and punishing this disease is. Many times I have come close to wishing that one or more of them could experience it for just a month--not the decades that we have to live with it. Let us write in and say our prayers. Marilyn Bloomer

  6. better yet - go on facebook and voice your opinion on an appropriate page - like the "black mold" pages for some of you!

  7. Suzanne Vernon has been nominated as well. There is a petition to voice objection here:

  8. NOTE: It might be best to send faxes directly to Dr. Nancy Lee at 202-401-4005. A neighbor told me the other number turned out to be a phone number.

    Also, keep in mind that Dr. Grobstein is competing against Mr. Sasser for the only non-biomedical researcher position currently open.

    Mr. Sasser is a disability attorney. There already is a disability attorney sitting on the CFSAC.

    Again, new fax number: 202-401-4005.

  9. I cannot think of anything that CFSAC has accomplished since its existence. Certainly ME/CFS isn't going to help. Technically there's no such thing as ME/CFS research. Beyond the little group that attended, HHS got strenuous objections.

  10. I've been in contact before with Dr. Grobstein, both by E-mail and Skype. I think she would be an excellent choice.

  11. I am so happy Dr. Grobstein is willing to serve. We must get her on CFSAC and prevent Suzanne Vernon from being appointed.

  12. Does anyone know what the results were...I looked at the CFSAC website and there is a list of members, which does not include Dr. Grobstein. But I also don't see Mr. Sasser's name.

  13. While millions of ailing, immunodeficient CFS/ME patients are mindfully belittled & neglected, perfectly healthy HIV+ people are allocated billions of dollars in taxpayer money for research and services. How does that make any sense to anyone?

    It is so easy to see that the medical establishment simply has these paradigms (CFS, HIV) inverted. Why can't people see that AIDS patients are just more CFS patients, which as CFS patients’ we already know is not caused by HIV. I want a revolution.

    If CFS/ME patients truly wanted billions of dollars of funding to be allocated to study their illness, all they need to do is demand of their government officials' that the medical establishment (e.g., NIH/NIAID) conduct a 'ReAppraisal of AIDS.'

    7 Step Plan to resolving our World's catastrophic public health disaster:

    1. Demand research funding parity for CFS with AIDS.
    2. Suggest that CFS & AIDS be researched together by scientists rather than as separate entities.
    3. Urge the CDC to move their AIDS division under the CFS umbrella so they research all the infections that AIDS and CFS have in common.
    4. Urge that AIDS organizations (like Amfar) include CFS under their umbrellas so that CFS advocates don’t have to reinvent the wheel.
    5. Demand that the White House, Fauci and the Director of NIH make a public statement that (just from what we know today) in terms of the immune dysfunction and human suffering, CFS is just as serious a public health problem as AIDS.
    6. Request that an annual international joint CFS & AIDS conference be held by the World Health Organization.
    7. Suggest that next December 1st be declared the first “World CFS/AIDS Day.”

    I stopped fighting for myself a long time ago. I fight for humanity.

    U.S. representatives can be found here:


Comments are welcome and moderated for appropriate content.