USA: NIH National Institutes of Health news

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.

 

https://twitter.com/user/status/1569754875214405637


https://twitter.com/user/status/1569754885083504640


https://twitter.com/user/status/1569754892570447872


Hopefully not confounded by healthy controls being fitter than ME/CFS patients.

 

The Norwegian ME Association had a webinar that got uploaded yesterday with Vicky Whittemore and Joseph Breen providing an update on NIH research programs on ME/CFS. (Haven't watched it myself yet)

https://www.youtube.com/watch?v=pluT4Y2ecfI

 

Where are the long COVID clinics?

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

 

Not impressed with "Available and able to participate in up to seven four-hour videoconference workshops over the next 10-12 months.". They aren't exactly trying to make things accessible to patients with that.

 

Agree 4 hours is a lot.

 

With DecodeME we will look to limit things to an hour at most, and in some cases have moved to 30 mins max to accommodate patients. Four-hour long meetings is just to make things convenient for those who are healthy enough to have a career, not for patients.

 

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.

 

So limiting the possible pool of patients who can take part is a good thing then?

 

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.

 

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.

 

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.

 

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."

 

Good to see they're not rushing into anything....