Deadline april 26 to effectively save the cfsac!

It's absolutely maddening. CFSAC says go talk to Congress, and Congress says we can't tell NIH what to do. The idea of charging the CFSAC to come up with a strategic plan, though, might be the work around. If the CFSAC has to come up with a plan including budgetary recommendations, it will be harder for NIH to ignore and easier to sell to Congress. Hopefully.

CFSAC Should Produce Budget Recommendations

I agree. CFSAC should currently, on their own, be making recommendations on budget and related matters to the DHHS Secretary. Do they think this is ultra vires- beyond their legal power or mandate? Members of Congress have shown they are very reluctant to 'interfere' in 'technical' matters of agency expertise. CFSAC's, especially with its current heavy emphasis on research scientists, production of budget and related recommendations would be hugely important in allowing Congress to feel more comfortable in directing DHHS.

I didn't know about the membership allocation requirements. I think it's a little heavy on research scientists and insurers and light on patients and clinicians.

I liked CAA's comments. Nice job. One suggestion FWIW- I recognize that it is appropriate to spent the majority of page-space on the charter. But, I feel it's important to put forth our most pressing 'grievances' like increased budget in every communication with government and media, at least en passant.

Great agenda - they packed alot in there. Dr. Unger will be very interesting.

Thank you for the synopsis of the upcoming CFSAC Cort and thanks so much to everybody who wrote a letter.

It does look like a pretty good agenda to me.

Yes, I think some members do believe that they can't make budget recommendations, or that it is pointless to do so. I gave testimony in May 2008 highlighting the disparity between research dollars for CFS vs. other illnesses in relation to lost productivity and investment per patient. Several members of the committee approached me after my testimony and said (I'm paraphrasing) "You really need to take those numbers to Congress because the CFSAC does not make budget decisions." Which, of course, completely missed my point which was the CFSAC needs to tell the Secretary that research dollars are not proportional to the burden of CFS on individuals and the economy.

I hope that Dr. Snell will bring strong leadership to his role as Chairman, and I hope that the new members of the CFSAC will be willing to engage on the issues in more meaningful ways.

Inspired by Jennie's post a few days ago, here is an excerpt from my written testimony to CFSAC that I submitted on the 26th. Hopefully indeed!

(ETA - I now see that the point made it into the CAA's submission. Yeah!)

2. The CFSAC charter should require a more specific scope of activities in order to improve the implementation rate of the Committee’s recommendations. The CFSAC charter states that the Purpose of CFSAC is to “provide science-based advice and recommendations to the Secretary of Health and Human Services and to the Assistant Secretary for Health on a broad range of issues and topics pertaining to [ME/CFS].”

While the purpose of any federal advisory committee may be to provide “advice and recommendations” to relevant government agencies, the best science-based advice and carefully considered recommendations in the world amount to nothing unless the Committee’s recommendations are ultimately acted upon and implemented by the appropriate government agencies.

To this end, the CFSAC charter should incorporate a more specific scope of activities (either under the Function section or in a new Scope of Activities section) and require the Committee to present its recommendations to the government in a more formal and comprehensive format (specifically, in a single strategic plan to be periodically updated, as discussed below) and require the Committee to more closely monitor of the federal response to ME/CFS.

As an example, the charter of another federal advisory committee governed by the Federal Advisory Committee Act (the same statute that governs the CFSAC), the Interagency Autism Coordinating Committee (“IACC”), sets out the type of more specific scope of activities and mechanisms that would provide more “teeth” to the Committee’s recommendations and which is likely to result in a higher implementation rate by the government of the Committee’s recommendations.

Specifically, the IACC charter states that that Committee “shall” engage in a very specific list of activities, including the development and annual updating of a single strategic plan for autism research including proposed budgetary requirements, and the submitting of the strategic plan to Congress; the development and annual updating of a summary of advances in autism research related to among other issues, the causes, treatment and access to services for autism patients; and the monitoring federal activities with respect to autism and making recommendations to DHHS regarding any appropriate changes to such federal activities. (See IACC charter.)

The CFSAC charter should adopt a similarly concrete scope of activities with respect to ME/CFS, such as requiring the development of a single, periodically updated strategic plan that encompasses the Committee’s advice and recommendations regarding ME/CFS research including proposed budgetary recommendations that would be submitted to Congress, the development and updating of a summary of advances in all aspects of ME/CFS research, and the requiring of more formal monitoring of federal activities with respect to ME/CFS and a mechanism for feedback concerning such federal activities (or lack thereof).

Now - how do we get this Dr. Koh guy to listen and act?? We could go without the welcome message in exchange for a few hours of his time for a sit-down with a few of the more competent/ outspoken CFSAC members (e.g. Dr Klimas) and read all the public testimony.

Still, good rather than bad that he is showing up.

The last time the Assistant Secretary attended a CFSAC meeting was in 2006 (I think). Dr. John Agwunobi admitted at that time that the committee had not gotten the attention it probably deserved from DHHS. Within a few months, he had left DHHS and that was the last we saw of the Assistant Secretary!! And I agree that it would be more productive for Dr. Koh to actually pay attention to the committee's recommendations!

Dr. Koh

http://www.youtube.com/watch?v=naC717ZrBLA

Looks like Dr. Koh (the Assistant Secretary of Health that is listed as the decision maker for CFSAC) is a relative newcomer to his role who seems like a competent and ambitious person eager to do a good job.

In this clip, he says he has oversight over 9 presidential and secretarial federal advisory committees - 1 of which is presumably CFSAC.

Maybe for the next meeting, we should look more closely at the other 8 other advisory committees he oversees and make useful comparisons (as apples to apples as possible) in areas like budget, power to offer budgetary recommendations, power to submit recommendations to Congress, number of seats allocated to NIH officials, etc.

This is a great idea!

New Members

The new members of the CFSAC have been posted: http://www.hhs.gov/advcomcfs/roster/index.html

Dane B. Cook, PhD
Madison, WI
Term: 05/10/10 to 05/10/14

Eileen Holderman
Galveston, TX
Term: 05/10/10 to 05/10/14

Michael Houghton, PhD
Danville, CA
Term: 05/10/10 to 05/10/14

Susan M. Levine, MD
New York, NY
Term: 05/10/10 to 05/10/14

Gailen Marshall Jr., MD, PhD
Jackson, MS
Term: 05/10/10 to 05/10/14

Bio on New Members?

Does anyone have bio info on the new CFSAC members? Two were CFIDS Association nominees; I've copied the bio summaries below. I know Dr. Levine is a CFS clinician in New York City. Gailen Marshall appears to have done work on the role of EBV in CFS. And Eileen Holderman is/was a trustee of the NJ CFS Association. Can anyone add to this info?

Belated thanks, The Phantom.
I'm afraid I didn't get to submit anything this time around mainly because I was very busy with a deadline.
But I do have a letter accepted for publication which is challenging the CDC!

Well done to everyone who wrote in. I imagine the posters in this thread will make up a good percentage of the submissions they get.

Hi Jerry,

Well done one your submission. Impressive to see references.

(my bold)
Could you or anyone point me to that link on the CDC website. I want to save it. I am interested in this area of the safety of GET and have had one letter published on the issue of harm http://jrm.medicaljournals.se/article/pdf/10.2340/16501977-0493 (in response to a Peter White article). I also responded to a letter of his in the ME Association magazine. I think this is the weak point as they keep confusing the issue that reports of harm are relevant even if they don't take place in randomised controlled trials (that is why many countries have schemes where adverse reactions to treatments can be reported).

Hi Tom,

The link to the St. Bart's GET pamphlet is on the CDC's Toolkit: Fact Sheets for CFS page under Managing Activity.

http://www.cdc.gov/cfs/toolkit.htm

Best wishes,
Jerry

Thanks Jerry. Lots of other dubious statements in that guide also. I've just highlighted it on some (mainly) UK lists as I don't think it has been highlighted much.

I would like to congratulate everyone that managed to send a testimony. All of them have been read and I thought they were fabulous.

Kati-

Great letter. An adequate response to the ME pandemic is more urgent now than ever; thanks for reminding CFSAC and HHS of that urgency; and also for telling your story!

Jerry- Wow, that's outrageous. Thanks for letting us and CFSAC know!

HaHa...yep. That was one of several typos I found right after hitting "send". I should probably stop myself from reading things AFTER I send them.


Also, all these letters are really great. Hopefully enough to prove this committee is still relevant and still sorely needed. Great job everybody!

I try not to read things after I've sent them on because I could edit until I was blue in the face (or passed out in bed, one of the two)!

Absolutely! I am really looking forward to watching the meeting next week, and seeing what comes out of the committee's recommendations.