USA:NANDSC Working Group for ME/CFS Research report, September 2019

Yikes. That report was terrible. A disinterested yawn would have sufficed.

Despite the lack of urgency and actual recommendations, this latest report is definitely an improvement.

But without urgency and actionable recommendations, specifically to address that the past efforts and status quo are a complete disaster and need complete reform, it basically has the same impact.

 

Indeed. I was not alone in considering the "Gibson Report" an embarrassment and disturbing that the Countess of Mar had been prepared to sign off on it. You still see it being referenced by some advocates in the UK and beyond, and that's disturbing too.

 

#MEAction recently released it's formal response to the NANDSC WG Report. It's an extremely thorough and detailed critique of the plan's utter insufficiency (already articulated by many in this thread), accompanied by a set of demands for major actions the NIH must take. You can access the response letter here: https://act.meaction.net/page/13656/petition/1?chain&ea.tracking.id=web Discussion of the #MEAction response should probably take place in a new thread... which I'll let somebody else start.

The submission and public release of this response letter launched #MEAction's new, long-term #NotEnough4ME campaign to pressure the NIH to agree to its demands. The first campaign action is a petition to demonstrate community support for the critiques and demands in the letter. There is a thread about the petition here: https://www.s4me.info/threads/me-action-petition-to-walter-koroshetz.11815/ Please sign and share the petition if you agree that the NANDSC WG Report is not enough, and that the NIH must commit real resources to ME research with the urgency and comprehensiveness we deserve.

After the delivery of the petition, the idea is for the #NotEnough4ME campaign to continue with frequent mass and small-group actions using escalating tactics until the NIH finally accepts these demands. I'm helping plan the campaign and will be starting a new thread on it soon, when I have more energy-- I'll link to it here when I do. We're actively looking for more community members to contribute ideas or get involved with shaping and planning the campaign-- if you want to help force the NIH's hand and are interested in learning more, just let me know, or contact #MEAction Community and Campaigns Director ben@meaction.net. Thanks!

@Tom Kindlon @Michiel Tack

 

Responses to Request for Information: Soliciting Input on How Best to Advance Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research

https://www.ninds.nih.gov/about-nin...best-advance-myalgic-encephalomyelitischronic

 

This was all a big disappointment. Approval to proceed was given at the Sept 2019 council meeting and then we never heard any more. It just disappeared.

 

NIH seems to have taken down the PDF report from the 2019 NANDS meeting. No idea why .....................

Luckily a copy was saved on Wayback Machine / Internet Archive
http://web.archive.org/web/20220112...cil_working_group_for_mecfs_research_508c.pdf

The ME Action link has also disappeared. This was the letter they wrote to NIH after the 2019 report came out
http://web.archive.org/web/20220421...ds/2019/10/NANDS-Report-Response_10-22-19.pdf

All we hear recently is that NIH will report on the Research Roadmap in a few months to the NANDS council. That looks nothing like the task NANDS gave Whittemore and Joeseph Breen in 2019 to put into place a strategic plan for ME/CFS, and absolutely nothing like what ME Action was asking for.