Federal CFS Advisory Committee(CFSAC) Charter Expired 5 Sept 2018

[Gemini]

Received this e-mail Notice today titled "CFSAC Sunset" as follows:

"The charter for the Chronic Fatigue Syndrome Advisory Committee (CFSAC), a discretionary (not Congressionally mandated) entity, expired on September 5, 2018. During its unusually long tenure, the CFSAC advised the Secretary of Health and Human Services on a number of issues related to myalgic encephalomyelitis/ chronic fatigue syndrome.

The committee and ex-officio members ably fulfilled the duties in the charter, which included informing the public and health care professionals about the illness, and insuring that input from patients and caregivers was incorporated into Departmental research now being conducted by NIH and CDC.

The Secretary, on behalf of the entire Department of Health and Human Services, wishes to thank the committee and its many members who served so diligently over the years for their hard work and dedicated service. He also wishes to thank members of the public and the advocate community for their participation on various work groups, as well as for their support and dedication to this cause.

HHS remains committed to working with stakeholders to support the critical research and programs necessary to discover the causes and treatments for this disabling disease."

@Emily Taylor did Solve ME/CFS see this coming? Were there efforts to renew the Charter, do you know?

 

[Roy S]

https://twitter.com/i/web/status/1037883046261796864

 

[Gemini]

Thanks @Roy S. Very Helpful information.

Good to see Solve pursuing a new "Congressionally mandated" ME/CFS Advisory Committee to replace CFSAC.

Their effort needs grassroots support from the patient community across the country, however.

I just submitted requests to my two Senators and Representative using their easy-to-use form here:

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00037

@Emily Taylor is there another copy of Carol Head's video above; this cuts off in mid-sentence?

@jspotila any insights as to why CFSAC's Charter wasn't renewed and who made the decision?

 

[Emily Taylor]

No problem, Gemini! Thanks for flagging me!

You can view the complete video here:

Sorry the sound isn't the best - but use the "CC" button for captions that are pretty good.

Also, Occupy ME's blog post just came out a few minutes ago with our comments as well
http://occupyme.net/2018/09/07/rest-in-power-cfsac/

 

[Gemini]

Also, Occupy ME's blog post just came out a few minutes ago with our comments as well http://occupyme.net/2018/09/07/rest-in-power-cfsac/

Thank you @Emily Taylor!

In the blog by @jspotila:

#MEACTION is organizing a protest at HHS HQ Washington, DC on Friday 14 Sept 2018:

https://my.meaction.net/events/protest-cfsac-shutdown-tell-hhs-we-will-not-be-silenced

 

[HowToEscape?]

CFSAC was no friend of ours, good riddance. #MEAction's protest shows how clueless they are about us. In my unscientific observations, it seems that organized around a hashtag is mostly hype and show, and often at odds with whatever reality lies underneath.

 

[Seven7]

This is important, for history's sake we need to know why this happened. Makes no sense, what is going to happen to the centers? I would push for a Dr Collins official comment as of why and pressure it.