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I agree with Trish. I strongly suspect that Long Covid clinics will be therapist-run sausage machines to rehab, maybe with a cardiopulmonary assessment that I doubt would provide much useful information. A CFS clinic may be the same but may involve a proper medical assessment. In either case...

It has the hallmarks of Oxford about it. A presumption that nobody else has a valid opinion and that nobody will notice the preposterous nature of the claim - other than people who do not matter.

Reading the exchanges between people closely involved makes one realise just how disingenuous the suggestion was that the 2021 guideline committee had plucked a new disease out of thin air just to spoil the evidence.

I have been having a conversation with a GP strongly in favour of a BPS approach and we got on to the question of describing causes as mental or physical or psychological or biological or whatever. The GP suggested that if we were dealing with fear causing an increased heart rate then it was...

Segal is the paediatrician. I am fairly sure Gregorowski is still with us. She is a nurse specialist. The unit has come in for quite a lot of criticism. Segal and maybe Gregorowski produced something that showed interest in Lightning Process.

All the evidence seems to be not quite what one needs to be sure. Comparisons with other therapies showing the same 'benefit' begs the question as to how much that really is. There is a problem with comparison with 'current best treatment' trials. It may well be that IVIG is of real benefit for...

'The PACE trial data shows that GET and CBT benefited around 15% of participants.' Not even that. 15% may have reported feeling better having been on those arms. That is no way the same as 'benefited'. The reasons why are given, but it is time to stop allowing this sort of language to slip through!

I wondered that. A reminder of just how uninterpretable studies by this group are.

I couldn't find a formal trial report. Maybe it is still in press. Unfortunately, PubMed has changed format and does not list things automatically bey date any more.

It has been a very useful discussion @SNT Gatchaman. S4ME has evolved into a place where scientific debate is genuinely hard edged and that can seem uncomfortable but it is the way science needs to be done. When people get interested in a particular theory digging out all the arguments...

That's interesting, seems to be very recent. As far as I could see the literature was mostly anecdotal until recently and there has been a randomised controlled trial that was at least positive. Angela's comment suggests that she was surprised - so had previously not been convinced? I still...

They are not relevant. Whether or not there is neuropathy can only be judged by neurological tests. Autoantibodies occur in lots of normal people. The autoantibodies quoted occur in almost as many normal people as PWME and may be the same proportion. I don't think they mean anything. Measuring...

I really doubt it. Professor Angela Vincent is probably the most knowledgeable person on this and I have not heard her talking of good evidence for efficacy of IVIG. I think plasmapheresis, azathioprine and steroids are preferred to rituximab because they work quicker and that is important.

Quite apart from the dubious nature of the factual background, how do we know this is a success? I am not aware of any evidence to support giving flu vaccines to PWME rather than anyone else. If anything there is a worry that PWME may react to vaccines more than others, not so much in terms of...

No, I am talking about high dose IVIG. I don't think it is really that effective in those conditions. Most of the accounts of benefit are uncontrolled and may well involve other factors. All these conditions are now treated other ways with rituximab or major immunosuppression as far as I know...

Why would these be any less valid than 'EDS', 'MCAS' etc.? From my perspective the important thing for all these conditions is to get robust evidence for no association - which I suspect is the reality. It may be easier to do that for EDS. Both things like depression and 'MCAS' are so poorly...

Didn't Live Landmark complain that there were too many patients on the NICE committee!!

As @5vforest says this is just a ticket for reimbursement for the private physician I suspect. The diagnosis of SFN by punch biopsy is probably mostly a scam. The test is to count the number of nerves and that is the easiest thing in the world to get a 'positive' result on. Counting things on...

Agreed also. We could add Castleman's disease but in a way that only proves the point more.

IVIG was used a lot for inflammatory and autoimmune conditions in the 1980s largely because it seems to have a useful immediate effect in immune thrombocytopenia - probably for rather complicated and unique reasons. In pretty much all other conditions it was never shown to be of significant...