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

[rvallee]

Be careful what you wish for. We were promised a full, independent, high level inquiry by Dr Ian Gibson back in 2005. What we got was the inadequate, unofficial, toothless, flawed, damaging and hastily cobbled together "Gibson Report" (2006) [1], which pretty much sunk without trace and without influence; and we no longer even have an APPG on ME.


1 Group on Scientific Research into Myalgic Encephalomyelitis (ME)
http://www.erythos.com/gibsonenquiry/Index.html
Final Report, November 2006
http://www.erythos.com/gibsonenquiry/Report.html

2 Commentary by Angela Kennedy
https://twentysixsoldiersoflead.wor...ughts-on-the-gibson-report-by-angela-kennedy/
More thoughts on the Gibson Report by Angela Kennedy
Posted August 28, 2009

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.

 

[Dx Revision Watch]

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...

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.

 

[ChloeC]

#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

 

[Sly Saint]

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

Purpose

In 2018 the National Institute of Neurological Disorders and Stroke (NINDS) formed a Working Group of the National Advisory Neurological Disorders and Stroke (NANDS) Council focused on how best to advance research on myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS).

The Working Group, composed of scientists, clinicians, representatives from non-governmental organizations (NGOs), and individuals with ME/CFS, is charged with:

1. identifying gaps and opportunities in ME/CFS research,
2. considering unique opportunities for NIH-supported ME/CFS research to attract and train a pipeline of new and young investigators, and
3. identifying potential approaches to enhance ongoing research collaboration and communication between NGOs, individuals with ME/CFS, researchers, and federal agencies that support research in ME/CFS.

The NANDS Council Working Group for ME/CFS issued a Request for Information (RFI) (NOT-NS-19-045) to gather input on approaches and strategies and help inform discussions of how to advance research on ME/CFS. The RFI was open for responses from March 15th, 2019 until May 1st, 2019. Follow the links below to read responses to each area of the RFI.

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

 

[wigglethemouse]

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.

 

[wigglethemouse]

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

#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 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.