Solve ME/CFS Initiative: "Congress to HHS: What's replacing CFSAC?" [easy form to fill in to contact your reps]

Andy

Andy

Retired committee member
Congress to HHS: What's replacing CFSAC?

ME/CFS must be represented!

On September 6, the Secretary of Health and Human Services disbanded the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) by allowing the charter for the committee to expire after 16 years.

The Chronic Fatigue Syndrome Advisory Committee was the only voice exclusively for the ME/CFS community in the federal government. We cannot allow the administration to silence people with ME/CFS, their loved ones, scientists, and advocates. Senator Markey is leading a bicameral (U.S. House and U.S. Senate) letter to the Department of Health and Human Services (HHS).

Use this form to contact your Senators and Member of Congress IMMEDIATELY and urge them to sign this letter to the Department of Health and Human Services (HHS). The letter (1) states that more must be done by HHS to address ME/CFS needs, (2) requests HHS to explain how it will fill the gap left by the September, 2018, dissolution of the Chronic Fatigue Syndrome Advisory Committee (CFSAC), and (3) poses detailed questions regarding the ME/CFS activities and plans of the National Institutes of Health and Centers for Disease Control.

This is a joint action of Solve ME/CFS Initiative (SMCI), #MEAction, and the Massachusetts ME/CFS & FM Association

**Please note - due to the requirements of the Congressional messaging system - the "Prefix" item must be selected in order to send your message to your members of congress**
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https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00042&cid=
 
Esther12 said:
Got to admit that I don't really understand the politics of the US situation, but best wishes to all those working to improve things.
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Not sure anyone fully does. Especially right now.

But we do know that:

  • The largest research funder in the US (also the largest funder worldwide) is the US NIH
  • NIH is nominally accountable to Congress (although Congress is not good at managing federal agencies, and it's not considered that Congress has expertise in science)
  • Congress directs the overall budget of NIH, like it does with any federal agency
  • NIH allocates most of this budget by itself
  • However there is precedent for Congress to direct some funds, as it has done with HIV/AIDS, cancer, Alzheimer's, and other conditions
  • Levels of research funding tend to be compared to the historic high in 2003. So pretty much all diseases and conditions tend to think they have low funding, as the peak of 2003 is not matched (in inflation-adjusted dollars).
  • Other disease-specific bills have passed during the current legislative season

https://www.ncbi.nlm.nih.gov/books/NBK45367/
https://everipedia.org/wiki/lang_en/National_Institutes_of_Health/

https://www.mcknightsseniorliving.c...ill-passes-in-house-heads-to-presidents-desk/
https://www.govtrack.us/congress/bills/109/s843 (autism)
https://www.govtrack.us/congress/bills/115/hr931 (firefighter cancer registry)
https://www.govtrack.us/congress/bills/115/s292 (cancer in children)
https://www.sciencemag.org/news/2016/02/nih-s-10-set-aside-aids-begins-slip-2016

edit: I changed "most funding" to "largest funder". Not necessarily the same.
 
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I thought agencies were deleting things to save server space, but mainly things 2+ years old.
 
Two ways to hide the truth, bury it in an ever deeper pile of shit, delete it and pretend it never happened - tabula rasa.
 
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