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I have actually forgotten which stakeholder I officially represented at the Scoping Meeting although I think it was S4ME. I am also not sure whether I get a chance to comment in my capacity as expert witness. It sounds as if you can comment as an individual or as a stakeholder. As far as S4ME...

It feels too early for there to be a ‘mainstream’ view of coronavirus versus a ‘maverick’ one. Poor Fox, thinking that good science is based on a mainstream view rather than a maverick one. It is based on a view that provides the right predictions rather than one that doesn't. It was not too...

Indeed. BACME supports the delivery of flexible, person specific programmes that take into account the underlying biological processes. Impossible. This isn't even the newly discovered motte and bailey fallacy, just plain old talking out of the backside. There is this thing in chess where you...

I was wondering too about this formidable evidence base for CBT for Everyotherchronicconditionknowntoman. Surely if it is not for symptoms the outcome measure must just be 'did the nice therapist make you feel happier?' administered as a questionnaire by the nice therapist. Not even any...

From Daniels: “The point of CBT is to improve quality of life and reduce psychological distress. The main focus isn’t to ameliorate physical health symptoms, although this is a common misunderstanding. We do see improvements in symptoms, but this is not the primary target.” She believes CBT may...

The fat lady didn't sing yet, although I admit that it looks as if all we get now is the shouting. Still it does give a little peace.

I think I have probably said enough about why I do not think hEDS is a meaningful label. Rather than being an ostrich, I have come to this conclusion afresh having worked alongside people who believe in hEDS for 40 years. There are lots of hypermobile people but they do not have any single...

It is perfectly possible to contain the virus. We did it in February but blew it. We nearly did it again in June and blew it. The Australians have done it despite big local outbreaks. It just requires doing the job properly, like in Thailand or China. In fact, if there is a deadlier strain I...

Is asking if there has been any change unwarranted? Surely it is a legitimate question. And is there an answer? I talk to people outside the ME bubble on a reasonably regular basis and it is very clear that none of them have any awareness of the existence of MEAction or even of any of the...

I agree that MEAction is making a lot of noise about change but have they actually done anything that is likely to bring about change? Other charities have raised funds for research and provided useful information. They provide people who sit on things like the NICE committee, which may actually...

I think this is a key issue. Brea talks as if she has authority to give opinions on medical matters. She has made it clear she wanted MEAction to provide authoritative medical information for patients yet sidestepped the opportunity to bring in people with expertise to advise. She gives the...

Yes, I think this Danish mink thing is highly significant. The perpetual cycle of new flu strains is probably due to a reservoir in Chinese animal stock, maybe ducks. Having a reservoir of millions of animals to allow new mutations to be selected and reintroduced to humans is about the worst...

I really don't think there is any comparison @Esther12. The surgery for ME story has largely been invented by Jeff and Jen. It sounds as if Jeff is making a living out of selling it. Everyone who has the surgery will be seriously disabled in terms of neck movement as a result and the serious...

This is unrelated to the GWAS study. Tate is looking at how much genes are turned on or off, not what variants of genes there are to start with. I agree with Simon that the study seems careful. The problem for me is that it is hard to know what to make of information about control of gene...

Well, the starting point is my post on here in August requesting that interested parties expressed concern about unwarranted statements being made. I am not privy to the discussions at Forward ME beyond that.

I won't go in to details but the negotiations over this were considerably more complex. My understanding is that organisations agreed to all put this statement out themselves and as far as I know MEAction has failed to do so despite the statement being significantly watered down from what it...

I have only looked at the abstract but this seems to be the same muddle as coming the UK people talking about predictive models. My understanding is that predictive models do not relate to their proposal at all. The predictive model says that we experience the discrepancy from the prediction or...

I am not a member of Forward ME. I was involved in the statement because the matter was considered by Forward ME following requests from both myself and Andy, I believe. I have been involved in some correspondence about the position of MEAction. Margaret Mar's decision appeared to be based on...

Note that CSF leak means CSF getting out of the subarachnoid space. Choroid leak would be an increase of CSF getting in to the space - something unrelated.

The choroid plexus is within the ventricles. Leakage from choroid plexus would mean an increase in fluid, perhaps with cells, going into the intracerebral CSF and out through fourth ventricle into extra cerebral CSF. That would not be inflammation in a meaningful sense (unless there was actual...