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I had a response from Dr Sivan: Dear Jonathan Thank you for copying me in. I will read the BACME guide and your letter in further detail soon. But thought I would drop a quick note now that you have hit the nail on the head when you say "The lack of a specialist medical 'home' with a research...

Thanks for the comments. The Tschopp finding is interesting. The letter seems to be well received by the interested parties copied in.

https://www.theguardian.com/society/2026/feb/18/long-covid-symptoms-treatment Recommends early exercise for deconditioning so the author does scuba diving in Florida.

If people can think of others to send it to please do. I may have missed some important people. I may not have chosen the best addresses to alert some of the organisations so other suggestions welcome.

Anna Gregorowski Joe Bradley Charles Shepard Vikki Mckeever Carolyn Leary Terry Segal DHSC service team Blue Ribbon for the Awareness of ME Binita Kane Simon Chandlers Tony Crouch Luis Nacul Nina Muirhead Julie Upton Russell Fleming Sonya Chowdhury Karen Hargrave Forward-ME...

I won't say anything about the look on Sonya's face.

I have had a discussion with Nanna MacAulay about the model. She agrees that CSF flux is still not settled and that the glymphatic model has significant problems. But I think she is working with the sort of modelling maths that Rodney Levick and I had to overcome when we started thinking about...

Thanks for putting that up. There is actually an edited version now,, which will go up tomorrow:

Very possibly. Zandi talked about there work being centred around a system for measuring lot of things from a tiny sample.

OK, that way around, even then I am not sure it tells us what mediates the illness. Another cytokine might simply feed in to the pathway from the side.

I am not sure it would do that. Lots of cytokines might make a person with MECFS feel worse but that does not tell us what and where the signaling problem is or even if it is 'real' over and above what we already know from experience.

I am not necessarily espousing blockade - but we have quite a lot of backgound data on that. Blocking one cytokine tend to be fairly safe unless you have undiagnosed TB. Blocking more than one is often problematic with infections. I was thinking more in terms of maybe just keeping the person...

As I said.

But you will see all that without Covid and the story simply does not hang togwther. A scientific story has to hang together in detail numerically and this doesn't.

But normal may be enough if the nervous system is oversignalling. Normal probably involves quite significant cytokine signalling locally in places like gut.

Not proof but strong evidence. The absence of trials has nothing to do with underfunding in my view. If someone really thought they had an effective drug they would get funding for a trial. It isn't that hard.

But, as I said, we have clear evidence of no autoimmune driver. The antibody levels are all within the normal range.

A role for cholinergic signalling is plausible but pyridostigmine has been handed out off label for a long time now and if it actually worked usefully someone would have done a proper trial. The absence of proper trials for these things is a pretty good sign that nobody truly believes they do...

The data for ME/CFS are ten years old and I have scrutinised them in detail with the investigator. They provide reliable evidence of no difference compatible with a causal role. There is nothing to emerge. The evidence is clearly negative. These antibodies occur at the same range of levels in...

Solves the mystery. I may have jumped the gun.