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I have forgotten if we have but have we looked at Ch16p13.3 to see if there is any signal at all near the tryptases? Ditto for IgE wherever it is.

And since anecdotal evidence in ME/CFS is worthless, where does that get us? If there was even a small subgroup that had useful responses, trials should pick up a signal. I am also not very impressed by the 'clinical seat of the pants' of 'infectiologists' to be honest. That sounds way outside...

It seems as if evidence-informed may be replacing evidence-based? Why are there about thirty authors when a review paper like this can be written by one person?

I would be wary that this is another artifact. If aggregates of this sort really occur and are responsible for 'impeding capillary blood flow' then there should be clinical signs - spinter haemorrhages and other petechiae. Something of this size would completely block an arteriole rather than...

There isn't. I think this may take weeks. The Austrian document is useful as a source of material. I think it is realistic to have something like that for health professionals to refer to and I suspect that an old-fashioned pamphlet would be most useful - to have in hand when visiting. There is...

OK, but what exactly are these individual needs, in terms of services that can reasonably be asked for?

I don't think Caroline has ever provided a service herself but might have ideas, I agree.

No.

A lot of therapists and even the UK NICE Guideline have it as a model or an approved approach to treatment. It is deeply embedded in the BACME approach. No way do they see it as analogy!

That sounds as garbled as Mark Edwards and Jon Stone.

This makes me wonder if Mr Stafford actually has much idea about the delivery plan and the fact that so far it seems to have delivered nothing and promises more of the same. This sounds awfully like a minister's response to a parliamentary question.

I think we more or less have that in the suggestion but I will review it. In terms of nutritional assessment, maybe the crucial thing is that a central ME/CFS nurse specialist contact should be trained in the MUST protocol. I don't think it is that complicated - no more than giving...

Can you be more specific? What aids would help with ADL? I can think of shower seats, shower conversions, wheelchairs, stair lifts? What aids are there for personal hygiene in bed? I agree that a standard OT could provide these but my thought is that a nurse specialist almost certainly could...

But if the standard NHS system for expensive drugs applies, which it will, it doesn't really matter what those people think - they will not have access to drug. I do agree that a good part of the motivation for restricting off-label usage is to ensure that potentially dangerous drugs with...

Believe me, I am only too familiar with this situation and within a government funded system there are no easy answers - and probably rightly so. In an interim situation physicians can set up publishable studies, as I did. Using something like daratumumab is not simple. You have to know about...

That may be so in terms of fashions at meetings and in publications. Sadly, all of this is driven by the RheumoTwitterati these days. Sjögren's disease sounds like a muddled idea. Not that I ever liked the primary nomenclature much. This is a paradigmatic situation where the popular concept of '...

I am not up to date on this but this sounds like a mechanism for allowing access in some cases before the MHRA grants a formal license. That might apply but there will be rules and, as you say, this is really outside the purpose and likely scope of a policy of restricting off-label usage.

That is how it works in the NHS anyway, for expensive drugs. I could not prescribe rituximab on the NHS until it had a license despite having very solid evidence. I provided it to people as part of pilot studies that I then published, funded by whatever means I could find, and that included some...

The ForwardME service subgroup are going to work on a suggested service format and seem keen to capitalise on the S4ME material. There was debate about how much detail is worth trying to work in to any proposal. The general feeling seemed to be that even if the DHSC was not actively engaging in...