USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

My apologies - I am very crashed and had trouble reading all that was written above, so please forgive me if all of this was said. But I wanted too say that NIH does very little intramural research. This study was done because of Dr. Collins’ direct request to Dr. Nath. When they do an intramural study like this, it really is a deep dive with cutting edge technology, unlikely to be replicated at any university. The whole point was to take the deepest look at a narrowly defined population with ME/CFS and see what popped out.

Then the information obtained would be shared with extramural researchers who could take a slice of the results and follow up on it at their own universities and labs. The idea was that excited researchers would apply to NIH for extramural grants. If something really promising popped up, the patient community would undoubtedly push for set aside funding to pursue it.

This was a shot in the dark effort that may or may not yield exciting results. We’ll see.
 
The CDC did a two day study on the Wichita cohort which was quite indepth. A big problem was they used a terrible definition of CFS (the so-called empiric criteria, Reeves et al. 2005).

You’re unlikely to see indepth testing (i.e. lots and lots of tests) on individuals in many countries as national research budgets outside the US are relatively small (e.g. the health research body in my country has a budget in the region of €50 million: that’s to cover all the illnesses and non-illness specific research). By comparison spending on health in my country is around €20 billion. A lot of people see the huge amounts spent on health in general and think a reasonable percentage of that is spent on research but that’s generally not the case.
 
Where are the long COVID clinics?

For the millions of people in the United States with long COVID, getting help comes down to where they live. Long COVID clinics have been popping up, but their accessibility and the kind of care they offer vary wildly.

The COVID-19 Longhauler Advocacy Project, a patient support group, compiled a crowdsourced list of more than 400 long COVID clinics. The list, which the group did not vet for quality, ranges from rehabilitation or physical therapy practices to comprehensive medical centers with multiple specialists working together. Science News used their list plus two other patient-compiled lists, and added the 53 NIH RECOVER research sites that are studying long COVID in adults, confirming that all were active as of early October.
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“It would be great if we could get medical schools to begin teaching these diseases,” says Jaime Seltzer, referring to long COVID and myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. Seltzer is director of scientific and medical outreach at #MEAction, an ME/CFS advocacy group that also works with long COVID patients. The doctors most qualified to treat long COVID are those with expertise in ME/CFS and other postviral conditions that overlap with long COVID, Seltzer says. “Several studies have now shown that approximately half of people with long COVID meet the diagnostic criteria for ME/CFS.” However, there are very few of these specialists due to limited funding and attention before long COVID became the tidal wave that it is today.
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https://www.sciencenews.org/article/long-covid-clinics-map-locations-prevalence
 
NANDSC ME/CFS Research Roadmap Working Group

"In 2019, the National Advisory Neurological Disorders and Stroke (NANDS) Council Working Group for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) presented the Report of the NANDS Council Working Group for ME/CFS Research(pdf, 669 KB). In 2022, as part of the strategic planning process outlined in the report, NINDS announced the development of a Research Roadmap for ME/CFS, which will identify research priorities to move the field toward translational studies and clinical trials.

The roadmap will be informed by a Working Group, which will include ME/CFS basic and clinical experts from the research community, leaders of ME/CFS non-profit advocacy and research organizations, as well as people who are living with ME/CFS, have a family history of ME/CFS, are caregivers/care partners of people living with ME/CFS, and/or identify as ME/CFS patient advocates."

https://www.ninds.nih.gov/about-nin...l/nandsc-mecfs-research-roadmap-working-group
 
If they can find a good patient, carer of family member for the role, then there is nothing wrong with 4 hour sessions. It will help speed things up.

The 4 hour sessions will exclude many patients but involving many patients isn't the goal here.
 
strategist said:
If they can find a good patient, carer of family member for the role, then there is nothing wrong with 4 hour sessions. It will help speed things up.

The 4 hour sessions will exclude many patients but involving many patients isn't the goal here.
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edited

I feel I and others with severe ME have a lot to offer ME research projects. At no point in my illness could I have ever done 4 hours, but I have been able to contribute to DecodeME, and do sometimes have different perspective and expertise from others with more energy. We need full representation, not an assumption that the ablest always have all the talent and can properly represent the rest of us.

Undoubtedly, this slows things down. But I think a massive problem in ME is things are not being done right, and more fully inclusive patient involvement will help.

Added: The most active advocates do a great job, and we would be nowhere without them. But I think it's important to widen the pool as much as possible: living with severe ME does give you a different perspective on a lot of things.
 
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the nih could perhaps stand to prove tangibly that it is doing something meaningful, has a clue about the disease AND acts according to that clue, etc.

even minimal accommodation of those who are routinely, casually, widespread-ly, and systematically excluded, even with a mere "we'll work with you to allow input via e.g. email", might not be such a bad idea.
 
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From an NIH email.

NIH ME/CFS Newsletter, Feb 2023

"This newsletter provides updates and information about new and ongoing activities at the NIH related to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

See attached file. I don't think there is anything in it that hasn't been posted to the forum already.
 

Attachments

From an NIH email.

"Plans are underway for an ME/CFS Research Conference to be held in-person at NIH and virtually on December 12-13, 2023, with a Young Investigator Workshop on December 11th. Additional details coming soon! Information about the conference will be shared via this list serv and posted to www.nih.gov/mecfs."
 
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