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Sonya gave me some back-channel details on what is going on yesterday, which are confidential. This is encouraging. Maybe the dots will finally connect. Did it? There seems to be no commitment in a recent memo from DHSC.

I am simply stating that it is possible, but that we are not going to get much useful information from studying healthy students.

Agreed. But maybe severe ME/CFS is the one situation where it does work - who knows? We need some data. If people are happy to have their vagus nerve given electric shocks maybe they should try this. I am not going to persuade them though!

As I did, in 2020, having had the experience. Sorry, but you are making un-called for assumptions.

But that is the whole point. The problem is the invalid biological attribution.

I don't follow that. The MCAS pundits are doing just the same: "merely (very) poorly speculating about the subjective experience of others, retroactively attributing things ..." They have zero lived experience too.

What is the opposite of what? Why should my medical training make me lose a perspective - that seems rude to me. I have experienced post EBV and post Covid debility. I have social contacts with long term ME/CFS and I talk to hundreds of people with ME/CFS every day and believe them. Seems an odd...

Where does that come from? Edit: your previous link is to a chiropractic and massage consortium.

It seems a bit weird. I had a quick look at the protocol and I think they were testing on normal healthy students who were slightly 'eating-disorderish' or whatever. It seemed to be some sort of biofeedback technique. Maybe biofeedback could work for severe ME/CFS but it would need to be tested...

I have a suspicion that this allergy programme is a tester designed as a model for rolling out all sorts of do-it-yourself programs for GPs to treat things so that the NHS can save money on hospital referrals. It is likely to be all about dumbing down and what is cheap rather than what is based...

It is the sort of thing that gets funded without anyone having any real idea where it will go. We had a 'platform' set up at UCLH for trials that after a few years got mothballed. My experience is that when you think of a trial really worth doing you just get on with it. The hard part is...

Isn't that the same for BPS? From where I stand the whole thing is a lot more complicated. Each problem is a bit different, for sure, but the principle of trying to minimise iatrogenic harm applies generally. I think in ten years time we will see just how dangerous the CCI stuff is. There will...

That is because they have been told how doublespeak it is. What they have not been told is how doublespeak MCAS is. Yes, but what they think is not relevant to the distinction between ME/CFS, a useful pragmatic term, and the others which are unusable or misleading because they invoke unproven...

If only it were that simple. I have met people who cling to the label of 'FND' and they see it as just as concrete - not realising that they are supposed to think that while the doctor is thinking the opposite. I have no idea what the doctors who offer MCAS or CCI have in mind (except maybe...

She presumably came with the wind that brought in 'Long Covid clinics'. To me this illustrates how misguided it is to try and 'capitalise' on the interest in Long Covid and share resources for 'post-infective conditions' in terms of getting service provision. The Long Covid clinics have been...

I don't see why though. Usually reviewers are asked for 1. confidential remarks to the editor 2. noon-confidential comments to be available to the author. This must have been the latter. If the reviewer discloses their identity that is not the responsibility of the author. Even if the reiewer...

I saw the new thread on diagnostic labels for 'functional' disorders. This is what concerns me about focusing on disease labels perceived to be 'what the patients like'. You end up with the worst sort of paternalistic manipuation - terms deliberately used to deceive people.

As Victoria Wood put it: it's all totally fina bodo.

OMG

Some important points @DHagen. But the two are not comparable. Flexibility is not the problem, shaking is. The problem for most people diagnosed with hEDS is either pain or 'fatigue' or both, neither of which are likely to have anything to do with their flexibility. The idea that there is a...