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Yeah. Safe to assume we can't take anything they've written in the main article at face value and need to comb through the supplemental data files ourselves.

I can't find info on titres. It doesn't say what cut-off they used for positive.

They don't comment much on this but I found it buried in a supplement that 24% of ME/CFS patients had positive antinuclear antibodies and only 5% of controls (p=.09 but I wouldn't pay much attention to lack of statistical significance in such a tiny sample).

No doubt it doesn’t help. Likely it will damage us in all sorts of ways. Can’t eat/swallow? You can prefer your way out of that.

Agreed. The description of the disease by the paper does not ring true to me. As someone who has POTS, I can only do so much. After a certain point, I can’t physically push through the shortness of breath, weak muscles and tachycardia. It’s sit/lie down or literally collapse on the floor.

Of course. It was obvious from the start. Many of us were pointing out the huge red flags, like the 1-day CPET, the gruelling protocol which would prevent moderate and severe participants from taking part, the background of key investigators like Walitt (FM is psychosomatic) and Hallett (major...

They make our symptoms sound like a minor nuisance, an annoying itch or something.

How do we find out? Is there any reason to suspect that ME/CFS may have something to do with long-lived plasma cells which would explain why RTX didn't work?

According to this email from Walitt posted on social media, all participants had PEM. https://x.com/sharonc97936831/status/1760457561768067322

The accompanying editorial delves into why this works better than CD20 depleting drugs like rituximab. https://www.nejm.org/doi/full/10.1056/NEJMe2400203

The paper says the following:

Discussion These data provide evidence for the feasibility, preliminary efficacy, and side-effect profile of CD19 CAR T-cell therapy in patients with severe autoimmune disease. Despite differences in disease entities and previous treatments, the dynamics of CAR T-cell expansion and of B-cell...

Looks like the B cells came back but the disease causing antibodies did not: ANALYSIS OF ANTIBODY REPERTOIRE Analysis of autoantibody repertoire in patients with SLE showed seroconversion of antibodies against dsDNA, single-stranded DNA, secondary necrotic cells, nucleosomes, and Smith protein...

SHORT- AND LONG-TERM EFFICACY After CD19 CAR T-cell administration, patients were regularly monitored for their disease activity. All eight patients with SLE met LLDAS criteria and had DORIS remission after 6 months (Figure 1A). Their SLEDAI-2K score was equal to zero after 6 months. Analysis of...

CD19 CAR T-Cell Therapy in Autoimmune Disease — A Case Series with Follow-up Fabian Müller, M.D., Jule Taubmann, M.D., Laura Bucci, M.D., Artur Wilhelm, Ph.D., Christina Bergmann, M.D., Simon Völkl, Ph.D., Michael Aigner, Ph.D., Tobias Rothe, Ph.D., Ioanna Minopoulou, M.D., Carlo Tur...

I've been dreading this paper for 8 years. I'm surprised it's turned out to be worse than my most pessimistic expectations. I just assumed they’d find nothing (which they did) and quietly move on. Instead they wrote a dissertation-length diatribe about us.

BPS have never compared us to real psychiatric disorders that have a physical basis like schizophrenia and depression. They have put us in a special category of “nothing wrong with you, just imagining you’re ill”. No one would say that to a person with a recognised psychiatric syndrome. Just us...

By the way, rtx doesn't do anything for ME/CFS. There was a Phase 3 trial that showed no effect and huge placebo response.

Agreed. This lack of inflammation has been known for decades.

Merryn’s mother and Maeve’s father spoke very well. I would have been in bits trying to get the points across but they did great while faced with huge grief. Like many others, I kept waiting for the other shoe to drop and see SW or one of his minions burst on stage in a clown costume to explain...