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

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00042&cid=

 

Good news! The deadline has been extended to Friday - please take action and share this far and wide! We need as many co-sponsors as possible before the government shut down!

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00042

 

Last call for this action! Deadline is 5pm ET Wednesday 12/12 - get your messages into congress today!

https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00042

 

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.

 

https://twitter.com/user/status/1092458573509087232

 

Thanks for the heads up, @Andy .

The CFSAC site as of January 28th, is in the Wayback Machine.
https://web.archive.org/web/2019012....gov/ash/advisory-committees/cfsac/index.html

I have not confirmed that this includes everything from the site yet.

 

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.

 

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.