US Senate passes historic resolution on ME/CFS

Note from moderators: threads merged.


Your Advocacy in Action: ME/CFS Senate Resolution Passed!
Your ME/CFS Advocacy Week efforts made a difference! The Senate Resolution in support of International Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Awareness Day is now the official stance of the U.S. Senate and the U.S. House introduced a matching resolution (H. Res 399) this week.
For ME/CFS Advocacy week (April 1 – April 7,2019), Solve M.E., led a nationwide effort to raise awareness, advocate for increased federal funding, and tell the stories of people with ME/CFS. Our 3rd Annual ME/CFS Advocacy Day in Washington DC, in partnership with #MEAction, drew over 240 registered ME/CFS advocates to attend 185 meetings (23 of them member-level!) with members of Congress and their staff.

Thanks to the combined efforts of our community, the US Senate has taken a stand for ME/CFS! This action was a joint partnership between Solve M.E., #MEAction, and the Massachusetts ME/CFS&FM Association.

The two Resolutions were co-sponsored by the following Members of Congress:

Senator Ed Markey (D-MA)
Senator Susan Collins (R-ME)
Senator Chris Coons (D-DE)
Senator Kevin Cramer (R-ND)
Senator Richard Blumenthal (D-CT)
Senator John Hoeven (R-ND)

Representative Zoe Lofgren (D-CA-19)
Representative Jack Bergman (R-MI-01)
Representative Debbie Wasserman Shultz (D-FL-23)
Representative Dave Joyce (R-OH-14)

Senator Markey has long been a champion of people with ME/CFS, sponsoring a Senate briefing on ME/CFS and leading this year’s appropriations request letter in the Senate.

“ME/CFS has been in the shadows for too long,” said Senator Markey. “Our resolution is just one step to help shine light on this condition and what we can collectively do to help improve the quality of life of those impacted.”

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Markey with ME/CFS advocates in 2017 (l to r): Leah Williams, MA ME/CFS & FM Association; Carol Head, President of Solve ME; Senator Ed Markey (MA), Emily Taylor, SMCI Director of Advocacy and Community Relations; Mike Atherton, member of Solve M.E. board of directors, and Gail Cooper, #MEAction Congressional Chair



Read the full Resolution HERE
 
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That's a fantastic result; it must have taken hours and hours of work by many people. It will be useful for advocacy in other countries too - it's the sort of thing that would be good in a package of information given to members of parliament.

Lots of great words including this:
Whereas, in recognition of the dearth of research on ME/CFS and the profound impact that the disease has on individuals with ME/CFS and their loved ones and caretakers, the National Institutes of Health (referred to in this preamble as the “NIH”) is “committed to unraveling the underlying biologic cause(s) of ME/CFS as swiftly as possible, and promoting research that will inform the development of effective strategies for treatment and prevention of this devastating condition”;
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Hopefully that will give those in the NIH who do want to make a difference for people with ME/CFS the ammunition they need.

A small issue is this:
Whereas the cause of ME/CFS is unknown, there is no diagnostic test for ME/CFS, and there is no treatment for ME/CFS that is approved by the Food and Drug Administration;
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which doesn't actually rule out CBT and GET as valid treatments, but I imagine it was very hard to come up with workable wording.
 
I know little about US political systems, but it seems to me that a resolution is a statement of intent, and agreement, rather than a bill which would require action. Its a necessary step for many kinds of further actions.

An example would, I think, be the Green New Deal. None of that is a bill yet, just a resolution (actually two resolutions). Such resolutions can be further debated before any bill is proposed.
 
Hutan said:
That's a fantastic result; it must have taken hours and hours of work by many people. It will be useful for advocacy in other countries too - it's the sort of thing that would be good in a package of information given to members of parliament.

Lots of great words including this:


Hopefully that will give those in the NIH who do want to make a difference for people with ME/CFS the ammunition they need.

A small issue is this:

which doesn't actually rule out CBT and GET as valid treatments, but I imagine it was very hard to come up with workable wording.
Click to expand...
AHRQ downgraded all research based on Oxford criteria, which is all of the CBT/GET research, so all psychosocial "treatments" are considered invalid as far as US authorities are concerned, unless psychosocial ideologues actually make an attempt at doing, you know, science, which they will never do as by now they know very well their BS is useless.

It's really time for an update to the IOM report, one that expands on epidemiology and total disease burden. It would highlight the enormous gap between reality, which has been a catastrophic failure, and the rousing success claimed after 2 decades of reign of error by psychosocial ideologues. Don't know how we can get that with the advisory committee disbanded however. CDC is seemingly doing nothing with their current funding and NIH doesn't care.

But now the suspension of the advisory committee looks completely unjustified considering this resolution. If it could have a discretionary budget that NIH or CDC can't obstruct we could probably get more done, but that would require expert involvement, too much of the work is done by patients and we are too easily ignored. From videos I've seen of the committee, the government side can be described as antiactive, blasé.
 
Does anyone know where to find the official notation that this resolution passed?

Thank you in advance!

ETA: Or is the copy of the resolution itself the official passing of the resolution.

I thought there might be something else saying it passed.

I've looked up S. Res 225 - but just get the resolution itself.

There are the advocacy articles about it passing, but unfortunately these are not what I'm looking for.

I will try Senator Markey's press release....
 
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Governments pass hundreds of resolutions like this without taking action. Show us the money (policy that increases research capacity), don't just pretend to care!
 
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