Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID Dec. 12-13, 2023

The ligand used isn’t the most specific as it attaches to normally occurring substances even in healthy controls so produces a slightly noisy image. However the speaker specifically flagged this image and others as showing a surprising signal in muscle and bone marrow. @Kitty

 

I can talk you through them. Left image pair patient, right image pair control. They aren't quite matched to the same (coronal) plane front-to-back but very near enough for the purpose. Michelle James did comment that the left image set was not optimal and you can see the colour mapping is more noisy. A new machine is to be installed that will help. The two are matched for age and sex but you can see the patient does have more subcutaneous fat, which could be a confounder (though I suspect not significant). That likely contributed to the more noise in her image though. The larger dataset with a range of patients will be able to tell us.

Between the two image sets is a colour bar, which is a pretty typical map where "cold" is blue, progressing through green and yellow to red which is "hot". This represents the uptake of TSPO. As @Fizzlou says the control shows where TSPO has uptake in normal people: left ventricle, small bowel > liver > marrow.

The patient has significantly increased uptake (red) in marrow seen in the spine and pelvis. And although to a lower level, there is widespread increased uptake in the muscles.

(Cross-posting with FizzLou, but I'd half typed out anyway)

 

The most obvious difference seems to be in the bones (presumably marrow). So whatever the difference means, if it is real, it isn't particularly about muscle.

Another cross post!

Added: Another factor is that the individuals are vastly different in terms of BMI (i.e. the first one is very overweight). And the lungs and abdomen have a much higher noise signal.

 

Yep, I'd seen that, but it's not so much the noise as that her muscles and thigh bones look an altogether different colour. It would be interesting to see the results with a different target, and comparisons of other sets of patients. It's a really interesting approach.

I hope they will try for better matching with body type for the future, as mismatches are bound to introduce doubts even if there's no reason they should be relevant.

 

“Structural and Oxygen Metabolic Magnetic Resonance Imaging of long-COVID and ME/CFS” Xiang Xu (Icahn/Mt Sinai)

They devised an MRI sequence to measure the oxygen level in the superior sagittal sinus, one of the major draining veins for the brain. This was correlated with both estimated arterial oxygen saturation (via pulse oximetry) and cerebral blood flow inflow (arterial spin labelling).

They found significantly reduced venous oxygen saturation in LC, but not in ME/CFS or HC. This was not due to reduced oxygen inflow, but instead to higher cerebral oxygen extraction. Note that patients are supine, so that excludes orthostatic effects on CBF.



This is the sort of thing I've been hoping to get insight into for a while, so I will be looking forward to publication on this —

 

Not sure if this was sarcasm @Fizzlou (and it very well could have been, so apologies if so), but for those that know more than me have stated that's actually a pretty-to-really impressive turnout for a NIH conference (the 400+ number of attendees virtually tuning in), just to state.

Again, apologies if you already had that hunch though and said that comment tongue in cheek.

 

@Dakota15 yes - not sarcasm but phrased badly. Online attendance ranged 200-440 ish. (Full stop) However I was a little surprised at the auditorium being so empty.

 

David M. Tuller: Conversation with #MEAction's Jaime Seltzer about last week's NIH gathering

Description:

Last Tuesday and Wednesday (December 12th and 13th), the US National Institutes of Health--and, specifically, the National Institute of Allergy and Infectious Diseases--held a two-day meeting called "Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID." In 2019, I'd physically attended a similar NIH gathering in person; this time, I caught many of the presentations online instead. Jaime Seltzer, MEAction's scientific director, was there in person. In an interview last Friday, she shared some of her impressions of the event.

 

Medscape New Research Aims to Unravel Both ME/CFS and Long COVID by Miriam Tucker

quote:

Wilder, the patient advocate, reminded the audience that "There is a cohort of people with ME who got sick in the 1980s and 1990s in the prime of their life…They have dreamed of a day when there would be a major announcement that a treatment has been discovered to take away the suffering of this disease…They keep waiting and waiting, year after year, missing more and more of their lives with each passing day…We're all depending on you."

 

Miriam on Twitter,

"During discussion, @DrMaureenHanson suggested that there is now enough evidence of brain inflammation to justify simply calling the illness "myalgic encephalomyelitis" and dropping "chronic fatigue syndrome" entirely."

 

Would be good. I've gotten the diagnosis ME but I've been calling it ME/CVS myself recently because (some) people know what that is. Chronisch vermoeidheidssyndroom(chronic fatigue syndrome) is a name that obviously elicits responses focusing on being tired. If that could be scrapped and we once more had a universally agreed upon name for the disease that does some justice to the seriousness of it, huge stride forward for advocacy.

 

My question would be what evidence Hanson has seen to support her view. I wasn't aware that we have seen sufficient testing of patients to establish the idea that everybody with a diagnosis has evidence of brain inflammation.

 

Recording now available for NIH conference: Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from #LongCOVID (day 2)

https://videocast.nih.gov/watch=52738

 

Has anyone found the video from Day 1 (12 December 2023)?

 

I checked various ways: doesn’t seem to be up.

 

Thank you @Dolphin .
I checked a few ways also but was hoping more adept folks (such as yourself) would be able to find....
It's odd that it doesn't seem to be available but day 2 is.

 

@Dolphin day 1 is now available
ADVANCING ME/CFS RESEARCH: Identifying Targets for Intervention and Learning from Long COVID (day 1)
https://videocast.nih.gov/watch=52631

and
(NIH conference: Advancing ME/CFS Research: Identifying Targets for Intervention & Learning from #LongCOVID (day 2)
https://videocast.nih.gov/watch=52738)

 

I can't find the Lived Experience presentation by Chimere Smith Sweeney. There were lots of tech problems during her presentation. It's a shame they didn't clean it up and include it!
She kindly recorded it immediately and posted it here https://www.chimereladawn.com/

 

Contrast with Reduced Oxygen Extraction Fraction in Deep Cerebral Veins Associated with Cognitive Impairment in Multiple Sclerosis (2024, Preprint: MedRxiv) which looked at the internal cerebral veins rather than the superior sagittal sinus (ie deep white matter and central grey nuclei vs cortex in the above) and found higher oxygen levels in MS.