NIH ME/CFS Roadmap Feedback
Deadline March 8, 2024
The U.S. National Institute of Health (NIH) ME/CFS Roadmap has moved to the next stage in the process toward providing a report to the National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council.
This next stage includes allowing members of the community to give feedback. I wrote about this NIH project in the Dec 1, 2023 article U.S. NIH News. This previous article includes some of what I think is important to cover including the following:
Stratify patients including using the International Consensus Criteria (ICC)
Pursue biomarkers
Include Severe ME patients (as safely as possible)
Feedback
From the ME/CFS Research Roadmap Campaign Brief:
“The feedback that is provided by the community on IdeaScale will be used to finalize the research priorities that will be provided in a report to the NINDS Advisory Council and NINDS leadership on May 15, 2024.”
Note: Comments will be public so they ask that commenters do not include any personal and/or medical information.
As far as I know, anyone in the world can add comments. If someone finds that is not the case, please let me know.
IdeaScale
Information on how to use IdeaScale is found HERE. A video about using IdeaScale for ME/CFS Research Roadmap is found HERE.
In this 7½ minute video it states:
“...the comments will be integrated and weighed with research and other sources to inform the final draft of the ME/CFS Research Roadmap priorities document…”
Comments for each section are viewable without logging in. But logging in is required to leave comments.
To participate in Ideascale
Go to Ideascale landing page and choose the method of signing in. It is possible to use your Gmail, Microsoft, PayPal, Login.Gov, a researcher’s account or create an account with a password specifically for Ideascale.
I chose to create an account. This took several steps including creating a password, then following an email to enter a confirmation code, then setting up a profile.
Once on the landing page there were some pop ups that showed how to find campaigns and give input, The PDF showing how to use Ideascale is helpful.
NOTE: See update at end of this article for alternate way to submit comments.
Giving Input
In order to give input, I wanted to see what information about each of these campaigns is available. It appears we are giving feedback based on the campaign briefs and videos from the webinars of each series. I have not been physically able to watch these webinars. I am relying on the transcripts that have been provided with each video.
The following campaigns are listed (as of this date)
Less Studied Pathologies Research Priorities (coming soon)
Circulation Research Priorities (coming soon)
Webinars and Transcripts
All of the webinars are available HERE
Transcripts from the webinars:
Lesser Studied Pathologies (No transcript listed)
Circulation (No transcript listed)
Some Thoughts about The Roadmap
There is a LOT of research needed in each of these categories when it comes to ME as a distinct disease. I do not know how much feedback I will be able to give in the time allotted.
Important research that has been done in the past needs to be followed up on. Some of that research can be found in the lists discussed HERE.
A roadmap will only be effective if there is money to fund the research and the money needs to be used wisely. We don’t need more research into “behavior modification” approaches to manage ME.
I want to see money spent wisely on biological research focusing on the known neurological, immunological and cardiac issues seen in myalgic encephalomyelitis.
Colleen
UPDATE Feb 14, 2024 - Alternate way to submit comments
The following is taken directly from the NIH MECFS Information List service email dated Feb 12.
The email from NIH:
“We are writing to offer an email option to provide input and feedback on the ME/CFS Research Roadmap research priorities that are currently posted on IdeaScale. We recognize that IdeaScale can be challenging to navigate, so please provide comments on any of the research priorities to: mecfsresearchroadmap@ninds.nih.gov
When you submit your feedback and comments via email, please also let us know the following:
Would like us to post your feedback/comments on IdeaScale for you? Answer: Yes/No
Would like us to post your feedback/comments anonymously or with your name? Answer: Anonymously/With my name: please provide your full name
Please send any questions about this process to the email address provided: mecfsresearchroadmap@ninds.nih.gov
To learn more about the ME/CFS Research Roadmap and to view the research webinars, visit: https://www.ninds.nih.gov/about-ninds/who-we-are/advisory-council/nandsc-mecfs-research-roadmap-working-group”
Information provided here or in comments is not to be considered medical advice
This looks like something I want to be involved in. Thank you for the great work you are doing keeping us informed on all this stuff
Colleen did you get the email from NIH in the past couple of days ? It looks like they realized, or more likely were told by patients, that the feedback process/format that they had offered was HARD for pwme, so they have offered some alternatives..
Maybe you could add an update on this? Thanks so much.