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Sharing in light of my above comment about celecoxib possibly being what is helping people (if these are real responses in this and the other celecoxib/antiviral trials) If there ever actually is a sizeable controlled study the investigators have a moral duty to include a celecoxib alone arm...

That's disappointing! What makes you think that the scans show something secondary and not immune cell presence/activity in the areas you mention above? They still seem to show something markedly different to controls though, which is interesting.

I definitely have had extreme rigours that could be described as seizure like episodes since I became severe and I have heard other sufferers say likewise.

Another question - how far is this technology from regular use in hospitals etc? Or is it so expensive it will likely only ever be used in a research setting? Would it be viable for us to discover what tracers could be made that might validate a few of our top hypotheses and find collaborators...

So could one conceivably make tracers for gamma delta t cells, gamma/type 1 interferons, or whatever other cells we might suspect are hiding from other methods of detection?

Thanks, that's really helpful!

By the way, I am a bit fuzzy on exactly what these tracers do and precisely what it is they measure. Would anyone care to explain like I'm brain foggy? (because I am!)

I think they had different results for brain imaging in men with this tracer in the 2023 conference presentation. Men had increased takeup in salivary glands iirc from earlier.

So moderate/severe disease then? That's good in a way. Less chance of having some people who have idiopathic chronic fatigue in there. Interesting that the controls scored so higly for fatigue - were they sedentary controls, and did they have another disease that might cause fatigue?

This is really exciting stuff! Do we have any information on the severity of the patients who were scanned? It would be interesting to see if the picture was even clearer in severe/very severe patients if they have scanned mild/moderate patients here.

I would really like to see their model put to the test in this way. I feel like OMF stanford are always claiming they are on the verge of this, and like Kitty have lost faith in their approach somewhat. It's all well and good mucking around with animal models but unless you've tested your model...

An IgG degrader called efgartigimod (vvygart) was trialed in long covid a couple of years back. It was trialled for POTS, and the primary outcome was a questionaire called COMPASS or something similar. Many people in the trial reported significant improvement in PEM and POTS/OI, including...

@Jonathan Edwards it's interesting to me that no T cell drugs have yet been trialed in ME/CFS in the way B cell drugs have been. I assume that is because they are dangerous and there has been no credible basic science or case studies as with cyclo that pointed that way. It would be a turn out...

Thanks for digging that up. I will email him when I find the spoons. I'll ask if there are plans for more/ campaigns, about the possibility of collaborating with international charities etc. Can anyone think of anything important I need to add. Brain fog is unreal today.

Agreed. There is the question of them contributing by digging into their own coffers, and there is the question of them contributing by doing an international fundraising campaign. The latter is likely to only be possible if a pitch by F&M's team is successful. Whereas we might have a shot at...

Would it be worth seeing if AfME are interested? I would assume they wouldn't want to dilute their fundraising drives for the Edinburgh work but it couldn't hurt to ask as some people on this forum have contacts there. At the very least we might get some advice on the best way to get something...

It is absolutely mind boggling to me that scientific research works this way. That study needs replicating yesterday. Replication studies should be seen as doing your scientific duty and boost your career in a sane world, because how else does anything ever get proven? But we live in a mad...

Are you talking about the kind of biopsies you describe here? And if so do you expect any studies like this to happen in this new post-DecodeME landscape? You mentioned Wusts group as a possibility further down that thread.

I think it's not unlikely that if there is an effect its because the celecoxib is helping with people's symptoms, at least to some degree. It's telling that no-one ever tries that alone, only with antivirals...

During the Charite conference, it was claimed that an American pharma company is planning a trial of CAR T in ME/CFS, and Fluge said in his opinion it was too soon, maybe in 5 years.