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

I've just listened to the telebriefing. I don't think there was anything particularly remarkable to report.

The ME/CFS Intramural study data has been mostly analysed and should be published soon - there were some findings, but there was nothing said about what they were. The findings may lead to therapeutic options (edit - this was said in a fairly aspirational way).

The CRCs had a meeting - there appears to be convergence in findings, especially on metabolomics and microbiome, with age and gender having an impact on findings.

The big push at the NIH is on Long Covid. This is seen as a homogeneous population, and a very important opportunity for making progress. Repeatedly the message was if something is found in the LC population then it can be looked for in the ME/CFS population. Or if medicines are found for LC, then they can be tried in ME/CFS. There is an autopsy component to the LC studies. The focus at the moment is on collecting data and bio specimens, to make them available to researchers.

Rakib Rayhan presented his work on fMRI before and after exercise. He reported a difference after exercise between ME/CFS and controls in the medial prefrontal cortex. Koroshetz noted that this area is related to the reward system... Rayhan will be publishing soon. I didn't quite get to looking at the crucial last pair of charts on the slide showing before and after effects in different parts of the brain, so, I'm not sure how significant the difference was.

It looked like Vicky Whittemore continues to do good work for people with ME/CFS, having worked to ensure that the common data elements in the Long Covid studies included symptoms of ME/CFS such as PEM.

So yeah, not really any revelations. But some publications should be coming out soon. And the LC research is crucial. I don't like thinking about where we would be without the global pandemic bringing some attention to post-viral conditions.

 

We have to take our luck and opportunities where we find them.

 

Here's more detail from my hastily scrawled notes during the tele briefing: (i.e. may not be completely accurate)

Koroshetz introduced the telebriefiing

Avi Nath
Intramural ME/CFS program - 17 ME/CFS patients and 21 healthy controls.
There were 3 teams of investigators: description; physiology; immunology
Most data has been fully analysed
There is now a manuscript writing group and they expect to produce [a paper/papers?] in 'a short period of time'.
They have found a number of abnormalities
The findings will point towards further studies that can be usefully done and may even point to therapeutic approaches.

ME/CFS may indeed be the same disease as LC. The same questions will be asked of the LC patients in the new Long Covid study.

Walitt is the Primary Investigator of a new Gulf War Syndrome study that has been funded in the last few days. The questions will be the same in that study too.

Joe Green
There has recently been a consortia meeting of the collaborative research centres. They have now been operating for nearly 5 years. Covid has delayed progress. The meeting also included Canadian collaborators.

The centres found there was a convergence of findings, although much of it is at the pre-publication stage. It should be published soon. Metabolomics and microbiome differences (between ME/CFS and healthy controls) were mentioned. Age and gender differences have been found. There are findings in energy metabolism pathways - and these pathways are well studied so there may be existing ways to disrupt the pathways.

There was input from the Community Advisory Committee - their feedback will be published soon. There was mention of MAP-ME/CFS and Search ME/CFS [I didn't hear what they are].

Vicky Whittemore
The trans-NIH ME/CFS working group is re-issuing the RFAs for the centres and the data coordination centre and thinking how to move the process forward. Everyone has been swamped with Long Covid issues.

There have been conversations between US and European researchers to harmonise clinical end points. There is likely to be a need for very targeted research [as a result of the Intramural study?].

There was a Biology of Fatigue Workshop - NIH researchers (including some ME/CFS researchers) with individuals from the Sleep Research Society to think about the underlying mechanisms of fatigue. Topics: animal models; neurobiology of fatigue; issues with cerebrospinal fluid flow, sleep cycles. [Not much detail was given - it was pretty much just a list of topics.]. The video cast of this workshop is available to view: https://neuroscienceblueprint.nih.gov/about/event/beyond-symptom-biology-fatigue

Koroshetz/Whittemore
A large proportion of people suffering from Long Covid have passed the 6 months time requirement and now meet ME/CFS criteria. This terrible pandemic does present a unique opportunity. Tens of thousands of people affected, with a very clear onset, and there is the opportunity to have healthy controls who had the same acute disease. And it's possible to get people early in the course of their illness.

The US funding for Long Covid research is the Recover Initiative. Koroshetz is very hopeful that there will be some findings from the Recover Initiative. As soon as there is some finding that 'can be nailed down', it will be possible to see if it applies in people with non-Covid-19 ME/CFS. [This makes me think that the findings from the ME/CFS Intramural study may not be that exciting.] Common data elements include fatigue, PEM, POTS. The study includes an autopsy programme - they will be looking for immunological and viral pathology.

It is hoped that the hundreds of researchers involved in the Recover Initiative will eventually become ME/CFS researchers.

Questions
? Can the ME/CFS CRCs receive funding from the Recover Initiative? The first phase is just to collect bio specimens and data. And hopefully there will be additional initiatives [I think implying the answer is 'no, at least not at the moment'. ]

? Will people in the LC studies be evaluated against ME/CFS criteria? There are common data elements for ME/CFS included in LC studies. The LC population is a homogeneous population which will be good for testing interventions. If the interventions work in people with Long Covid, they can then be tried in people with ME/CFS.

Vicky Whittemore noted that it is encouraging to have new researchers approaching her, interested in doing studies in this area. She commented that in illnesses like MS, the national MS Society has been around many many years pumping dollars into seed grants. Those investigators can then go on to get funds from the NIH. She noted that the Solve ME/CFS Initiative is starting to bear fruit in the same way.


(I haven't written up Rakib Rayhan's presentation as it will be easier to assess the work when there is a publication. He was awarded an (NIH?) F30 Award. He worked in Baraniuk's lab (2010-2011) and is now a Resident Physician at the Dept of Neurology at Georgetown University Hospital.)

 

If that holds up then it is good news.

 

Great point. Yes, the Dubbo study, looking at a population based sample of people who got EBV/glandular fever, Ross river fever and Q fever is getting pretty old now. That's three diseases that demonstrably could have been studied in the way the NIH is talking about for Covid-19/Long Covid.

And there has been at least one study since looking at post-Q-fever impacts using people who recovered from Q-fever who either did or did not develop the ME/CFS equivalent Q-fever syndrome. There is Ebola, which reportedly produces a post-infection syndrome, although I can't recall any really good research of a substantial scale on that at all. It's not that hard to find a group of people who have had one of quite a number of acute illnesses and who then either did or did not develop ME/CFS symptoms after it.

Sure, the covid-19 epidemic is an opportunity, but it's only unique in that it makes the problem so very hard to ignore.

 

From BPS attempts at psychologizing Long Covid @Art Vandelay

I agree that quote is a bit worrying, and doesn't really fit well with Avi Nath saying that they found immunological abnormalities in the small sample of ME/CFS patients looked at in the intramural study. Dr Michael Sneller is not some junior scientist at NIAID. He is Principal Investigator on a Post-Covid trial with 900 participants that started in 2020 and will run until 2027. He was a Principal Investigator on a 5 year post-Ebola study.

That summary of a report from the post-Ebola study appears to be downplaying the idea of post-infectious syndromes:

They report that uveitis is common in the survivors, but also common in people in the region who didn't get Ebola.