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I think for the functional test we do not have any control data except for two persons which were positive. Of course that is not good. Though as weird as it sounds we cant say it performs poorly in discriminating, because we basically have never tested it. I think what you refer to has been...

Maybe the term clinicians was too precise, I mean people involved in studies like decode me. But also former clinicians with experience in the field, like you. But that is simply my personal impression and it is also totally fine. Regarding the blood test, there are just too many unknowns...

Unfortunately I cannot answer in a detail level (blood tests) which would be needed since I don't agree. I'm sorry, but my illness is limiting me too much and I'm already writing too much again (sorry this is really not a bland excuse, believe me). Everyone has his or his own favorite theory...

Second point is totally wrong, private investments of BC have been in The double digits of millions for their phase 2 alone.

MCID is not meaningful if the given theory only applies to a subset of the patients. We know that the blood test, even the functional one is lacking. There's a new one in development based on pluripotent stem cells and I hope that we will also get blood measurements with proper controls in the...

That would significantly modify CCC though. I get that this is what a subgroup feels, but from my impression there's also a significant other portion where there is already worse symptoms quite immediately after some exertion. In your proposed case with many hours between worsening and...

Interesting, since the GPCR autoimmunity theory with BC 007 originally came from glaucoma people. So these auto antibodies are related to glaucoma.

I only have basic knowledge about GWAS. But due to the huge number of hypothesis being tested, isn't this always been accounted for in a statistical analysis? So if this is accounted for, and these genes still come up as somehow significant, The standard deviation for a gene should be a lot...

Would be interesting if these GPCR auto antibodies are Igg4, but either I don't remember or this info does not exist. What you describe is what is usually called functional autoimmunity by The GPCR folks. For what it's worth, my Igg4 has been consistently +50% above the upper limit of the...

There are many reports of Pots and NDPH and fibro as well. But it fits the same bucket. It really is a pity that this is not properly used in science.

Was mostly referring to rvallee, not you.

In this publication, they mention for CCC that PEM must be at least 14 hours. This is not contained in the CCC criteria. At least I'm not aware of it. The original long PDF of CCC does not contain it and I looked quite deep I think at least. Does anyone know where it comes from? From some of...

I agree that if you consider the hard scientific facts, this discussion is very questionable if not meaningless due to lack of data and evidence. But maybe I'm just disillusioned by medicine too much such that this article doesn't come off too bad. Medicine really is a soft science and like...

I just don't find his comments in that section too bad. It's still on the biomedical side. He also says it may not be the majority. I mean it's questionable if there's evidence, but assuming that some traumatic event can lead with a variety of other factors to triggering an immune event is not...

Yes, this is the above significance metric the UCB press release talked about. Paper should be out later this year.

Sometimes it is not the best strategy to be on one side 100 percent if you want to persuade other people. I have read several articles of him, with one explicitly set against the BPS argument within the same paper. It was a two opinion piece.

I was searching for that thread shortly but couldn't find it. Unfortunately I have huge trouble with using my arms, so I chose to post it here because I already did too much.

In my opinion, the author is a really helpful ally to fms sufferers. He could very well be one of the key persons in the Hunt for medication that will finally bring relief to patients. Considering the track record of the author, I think it's really not fair to put him as a promoter of non...

Study results are out for the auto antibody study. https://www.clinicaltrials.gov/study/NCT05643794?tab=results Couldn't find an associated paper. Seems FIQR was the significant outcome the press release of UCB spoke about? Not significant in a useful way though, but statistics was also very...

News from Erlangen (Schett et al) BCMA CAR T cells in a patient with relapsing idiopathic inflammatory myositis after initial and repeat therapy with CD19 CAR T cells https://www.nature.com/articles/s41591-025-03718-3