Search results

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.

I get this too when I'm really crashed and it's horrible. Sorry to hear this, and I hope it passes soon.

If Daratumumab does work for ME/CFS, could either of these be the mechanism it is affecting, rather than LLPCs?

I also discovered that regulatory T cells express FOXP3 (which has been associated with ME iirc) and need TGF beta to differentiate (develop) from naive CD4+ cells. TGF beta has been flagged once or twice as elevated in ME iirc (I know it was mentioned in JE's hypothesis)

I have just discovered that gamma delta t cells, which these genes are linked to, and one of the alleles in the new Fluge and Mella et al genetic paper is also linked to, are most prominent in gut mucosa. Could this be something to do with the awful gut symptoms many experience, especially at...

Interesting - more of which type of studies specifically? Yes I just realised γδ is gamma delta! The plot thickens!

I edited my comment before seeing your reply because I saw you edit of the comment above mine haha. Thanks for the info!

Yes that's what I was thinking of I believe! Shame it will take 2 years though... if it succeeds it will perhaps be available around the same time as the dara phase 2 results for ME if all goes well on the funding front.

Ah I was under the impression from previous discussions it was all forms of it, thanks for correcting.

@Jonathan Edwards is this one of the genetic studies you had advance sight of?

Right now we have absolutely no reliable evidence that Daratumumab works, and the drug is very expensive. If the price drops next year after the patent expires, and the phase 2 is positive with similar remission level improvements, then you might see a good deal more people trying to get it off...

Thanks for your response, that all sounds intriguing. Filling holes in our fundamental knowledge is really vital. I hope your project related to the DecodeME gene is able to go ahead, it sounds like a worthwhile endeavour.