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Probably not since there aren't any therapies.

A ForwardME meeting with DHSC rep.

This is a big problem I think. People with Long Covid are mostly still learning the ropes about service options and, yes, are just calling for multidisciplinary 'holistic' care. The clearer perspective comes from ME/CFS long haulers who have seen what happens over decades.

I was always one for conspiracy theories.

Absolutely, and advocacy groups calling for special mutidisciplinary ME/CFS services - just like what we have now "in the community" (which inevitably means cheap and useless). I think there may be some progress in getting these groups to see the problem. Maybe we shall see on Monday.

How intriguing. It worked FINE yesterday! Someone is reading this.

This is not the right way to explain things. It is a bit like saying that lupus and autoimmune disease often co-occur. They are two different circles on a Venn diagram that overlap, not two 'different illnesses'. Having made this mistake and having been uncritical about data we then end up...

I thought this paragraph from a BACME document was informative: A Brief History of CFS/ME services within NHS In May 2003, it was announced that a central budget of £8.5 million would be released to the NHS in two phases to allow stepped development of CFS/ ME services in England. As part of...

Excuse me!

I don't think it actually says that. It says that where they thought neurodevelopment was involved the genes were enriched iin expression prenatally. That is a different calculation.

Somewhere else I think it implies that if there is not continued signalling the IFN-g goes away. A bit confusing. I suspect that kinase inhibition for long enough (days or weeks?) might do the job. But I can see this may only be part of the story and that for neurons, for instance, other...

OK it looks as if this is from Dr Pauline Powell who worked with Richard Edwards in the Liverpool muscle unit. So this comes from Richard's work after leaving UCL. I can understand that he concluded that there was deconditioning but this document seems to go beyond anything I would have expected...

The FINE authors seem to be all psychologists and academic GPs, including Chew-Graham? I wonder where the pseudophysiology came from. It may have come from the Liverpool muscle unit I guess.

It is unbelievable that anyone should have fabricated all that FINE stuff. Is there any way of knowing who was responsible for writing it?

I am unclear on a brief skimming who this is intended for. It seems to try to put too much in to one document - with different material potentially being aimed at different people. There is a lot of unnecessary material about speculated pathologies and problems. As it is I think it will put...

Put like that, maybe, but with an if and a might. (I am not sure whether there are complexities that mean it depends on which inhibitor we are considering.)

Thanks. I have never had sight of that. It is quite extraordinary. So the recent BCAME Guide to Therapy 2025 is just a maximal watering down of the same fiction, still designed to 'educate' patients into recovery. Like the therapy itself, it barely has any content but still goes through the...

I sent a brief second reply to Dr Sivan just suggesting he read this thread.

Where did it say that exactly?

It might be heparan sulphate rather than heparin. I doubt there is any link. Googling quickly suggests that there isn't a heparin sulphate.