U.S. NIH News

Conference Dec 12/13 & Roadmap news

On Dec 12th and 13th the U.S. National Institute of Health (NIH) will hold a research conference.  “Advancing ME/CFS Research Identifying Targets for Intervention and Learning from Long COVID” will take place at NIH Campus in Bethesda, MD. 

This will be a hybrid meeting making it available to attend virtually via the live-stream NIH Videocast.

Registration is due by Tues DEC 5th.

For more information about the conference, click HERE.

Tuesday, December 12, 2023 - 9:00 a.m. to 5:00 p.m. ET (8:00 a.m. Registration)

Wednesday, December 13, 2023 - 9:05 a.m. to 3:45 p.m. ET (8:00 a.m. Registration)

Conference Goal: 

“Present the state of the science of ME/CFS research and identify targets for potential interventions that have arisen from the literature and clinical evidence from ME/CFS and Long COVID observations. 

Audience is expected to be scientists, clinicians, patients and other ME/CFS stakeholders.  The conference will be webcast and publicly available.”

View from my recliner. It helps to bring a little nature inside…

NIH Roadmap

Several months ago the NIH started holding working group meetings to develop recommendations for a Research Roadmap for ME/CFS.  The goal is to identify research priorities to move the field toward translational studies and clinical trials.  

Each of these working groups are holding video conferences to present information and gather feedback.  See NIH ME/CFS EVENTS page for details.

The working groups cover the following topics:

• Nervous System

• Immune System

• Metabolism

• Genomics/Genetic Susceptibilities

• Chronic Infections

• Physiology

• Less Studied Pathologies

• Circulation

Some of the working groups have already met.  Videos of these webinars are available HERE.  

Sharing Feedback

During the webinars there are some opportunities to ask questions.  But it is also possible to offer suggestions after the webinars.  I’m not sure when the period for giving suggestions will be over but a report is expected to be delivered to the National Institute of Neurological Disorders and Stroke (NINDS) Advisory Council at their May 2024 meeting.

While I would very much like to give input, my energy has been limited.  These webinars often last about 4 hours which makes it very difficult (impossible) to attend and offer feedback on specifics discussed.  

Alternatively, they indicate on the website they are using IdeaScale which is a crowdsourcing tool.  But the link doesn’t show they have any ME/CFS projects listed at IdeaScale.  See HERE.  The website states “Details about IdeaScale are forthcoming”.

Comments can also be provided by sending email to MECFSResearchRoadmap@ninds.nih.gov

I have sent an email asking about IdeaScale and the time limit for giving feedback.  I will post an update here if/when I receive a response.  (See end of article for response.)

ME Needs Good Science

One of the bigger gaps in ME research is that much of the older research used patient groups who were not well defined.  

We know that good science dictates that the fewest variables are needed for best results.  The first step to reduce variables is to stratify patient groups.  

Here are some of my thoughts about what I think is valuable to consider.

1. Stratify patients!  It is bad science to do research on multiple patient groups under the ME/CFS umbrella and expect the results to be useful for ME.

   For decades we have seen the nonsense results that have occurred when using Oxford or CFS-Fukuda criteria that included results based on patients who don’t have post-exertional malaise. 
   
   Effective research for myalgic encephalomyelitis requires using the most recent research criteria.  Using the 2011 International Consensus Criteria (ICC) will ensure the most effective patient selection. 
   
   Note:  Educating doctors on how to verify an ICC diagnosis would help researchers.  The ME International Consensus Primer offers thorough guidance.  See HERE for the document in multiple languages.
   

2. Stratify patients beyond just criteria.  The following are some groupings that have shown promising results in previous research:

- Severity groupings
- Gender
- Sudden onset/gradual onset
- Pre/post menopause
- Age
- Length of time ill

3. Pursue biomarkers.  We have A LOT of research that shows promise for biomarkers.  These could either be stand alone biomarkers or used in conjunction with other biomarkers.  ME-ICC Info group has organized a List of Possible Biomarkers that offer some good options to pursue. 

4. Severe ME participation. It is imperative that the most severely ill are included in research as much as possible.

Evidence of the importance of stratification can be seen in the research we have gathered through the ME-ICC Info group’s research lists.  See samples of this under research HERE.

I look forward to reading the report.  The NIH has an atrocious history when it comes to research into ME.  There is A LOT that needs to be done and they should have started decades ago.  

While much more funding is needed to get answers, there is a lot we already know that has not been adequately leveraged to help ME patients.  I hope the report validates much of what we already know so progress can be made toward FDA approved treatments as quickly as possible.

Colleen

Email from NIH responding to question about IdeaScale - dated Dec 8, 2023

Hi Colleen,

We are in the process of developing the text for IdeaScale for the first 4 webinars, so nothing has been posted yet.  We will send an email out through the NIH ME/CFS listserv once it is open for comment. I am waiting for each of the webinar planning groups to finalize their research priorities which is what will be posted for comment.

Thanks!
Vicky

Information provided here or in comments is not to be considered medical advice