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Michelle James from Harvard says the TPSO whole body imaging results were very striking and blew her away. Says there's undeniably something significant going on. Most signal is found in the shoulders, postural muscles, the neck, glutes but also in the bone marrow.





May 7, 2026 · 9:15 AM UTC
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Most signal is found in the shoulders, postural muscles, the neck,...​

Now that is interesting. It fits my experience of pain distribution.

Also might help explain sleep disturbance and quality problems, via pain in those areas.
 
ChronicallyOverIt said:
Wow seemed like quite a few findings on different lipid regulation, mostly disregulated.
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as much as I do feel some of the more interesting differences we have seen pertain to some lipid differences and the biggest project idea I have is around the relationship between membrane lipid profiles and function of different immune populations, "lipid" is a very broad word and it will be the specifics that matter and we need to be cautious about turning it into another meme phrase

the other thing is that lipids are often measured by things like lipidomics, or other assays that are specifically looking at lipids. if that is the approach then of course, that is what will "pop up" in general terms, because that is what is being measured.

we really have to compare findings about specific classes of lipids in specific tissues, their directional changes, think about what it may mean for related biology, what is testable and based on a coherent process that could explain the clinical picture.

tldr: I do think it is interesting and promising, but in discussing this stuff we have to be careful about language and specifics lest it take on a life of its own beyond the evidence. basically we need to focus on specifics. loose language about concepts that people easily get excited about is how we ended up with much mitochondrial folklore and all the commercial opportunism that it has invited
 
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ChronicallyOverIt said:
Weren’t these presented a while ago and the paper didn’t fully come out? I can’t watch the stream, did they present more data than last time or update when the full paper will be available?
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She had some cool new pictures (including a pair of identical twins, one with ME) but perhaps more importantly a lot of graphs.

One thing they reported is that the strongest PET signal is in pelvic bones.

I began to wonder if pelvic bones have any special function.

Apparently they are the main or at least a major place where "red bone marrow" is found in adults . Red bone marrow makes stem cells that turn into blood cells, both red blood cells and immune cells.
 
V.R.T. said:
Thanks for doing that! Its an interesting connection to your study, perhaps it will lead somewhere!
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Anyone who has ever looked has found cd24 elevated. I've been telling people to measure it for years. It's not standard assay so they don't.

It is a finding of Jo C and Fane, they saw in 2 cohorts before we did a cohort with them and found the same thing. Just want someone else to look and validate.
 
CFS_Care was a rehab of 270 people, really unclear what their usual care and rehab arms were and also patient selection is poorly defined. They made 43% of the patients that did the rehab worse.:speechless:

The summary lays it quite clearly, rehab didn't work it made the patients worse and that Rehab must not be used in this patient group.

A third dropped out as well, due to insurance payment mess. Some of the patients missing data.
 

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Low Dose Nextrone trial on ME/CFS patients from Long Covid. 160 LDN/Placebo. Both arms had ~10 drop outs so about 66 ended in each arm. No effect, same reduction seen in placebo and LDN arms on fatigue. About twice as many LDN patients got worse compared to Placebo 8% vs 4%. 4.5mg for 16 weeks.

The questions show that physicians certainly think it works and are looking to see if they did everything right and seems like they did account for all the questions and it still didn't work.
 
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Methylprednisolone PoCoVIT trial on patients with memory recall issues. Planned to be 418 patients. Randomised and then open label phase. Terminated on 96 patients due to adverse events, 5 severe adverse events. No benefit on the patients they did test from control.

They used 1mg/KG.
 
BrightCandle said:
CFS_Care was a rehab of 270 people, really unclear what their usual care and rehab arms were and also patient selection is poorly defined.
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"The rehabilitation programme was specifically designed for people with ME/CFS (including ‘localised rehabilitation’, stimulation shielding and no strenuous exercise). According to the rehabilitation centre, the programme was very labour-intensive and, in terms of staffing requirements, could not be compared to standard rehabilitation programmes funded by the German Pension Insurance."
(https://www.mecfs-wiki.de/dokuwiki/..._cfs_care#bislang_veroeffentlichte_ergebnisse)

This is really useful for patients like me who have been referred for rehabilitation by their health insurance provider!
 
~20 patients have finished the treatment already according to Fluge as May.

No updates on how they are doing sadly.

One hospitalisation reaction to the treatment, severe ME. So pretty much aligns that its quite safe at least.

To put into context, I think maybe 3 have done a full protocol outside of trial and a total of 7-8 people have done Dara outside trial
 
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