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That post seems a good summary. hEDS specialists are claiming 1 in 50 people have it whereas the monogenic cases are probably 1 in 5000, so there is a heavy weighting towards something very intangible (99%).

40% of PCS cases had rheumatoid factor, with 3% controls, which they make no mention of later as far as i can see. That is an odd result. But I think it was done in a rheumatology unit.

But I see no evidence for NETs actually being present in PCS. Maybe the 'markers' don't necessarily mark NETS.

I think maybe there is a big cultural shift going on, related to what I was saying about the change in medicine, particularly in the USA. Fifty years ago the Mayo Clinic could be relied on to provide rigorous science-based medical information. People had the idea that medicine was a profession...

Being hypermobile to the extent measured on the Beighton score used to diagnose hEDS is very common and normal. Something like 40% of young women will qualify at some estimates. There is no reason to think it has anything to do with any pain or fatigue. Large studies of young people show little...

I realise that there may be major cultural differences here and that being old and tired I am sometimes too informal with words but no, I am not mocking anybody diagnosed with anything. And I actually think it is reasonable for me to expect people to se that and not to accuse me of being...

Right. But there are physicians who sell these lists. And yes they provide (false) hope of an explanation and treatment. Not so sure about that. I know of a number of physicians who are very happy to sell full lists at one sitting. I can see that, but if we want people with chronic disabling...

Fair enough. I suspect the situation is much more complicated. There will also be differences between countries and culture. And when I contrasted with ME/CFS I was intending to relate that to the meaningfulness more than the ridicule bit, so that probably misfired.

I think you want a hospital unit with clinics and domiciliary services. Primarily so that the doctors get wide-ranging ongoing continuing education and an opportunity to find out what we don't actually know. The government push for a GP/'community' base is a huge issue and may prove...

There are individuals involved in consultation who see the problems very clearly but so far what I see from organisations is blinkered. I will talk with Sonya tomorrow and may change my mind. I also think that the 'same side as BACME' problem is most specifically with the MEA. ThereForME are...

Then you have completely misunderstood my position.

I am very keen for people with ME/CFS and their carers to be involved in advocacy but not advocacy that promotes pseudoscience. Terms like MCAS, POTS and hEDS do not make illness legible to others. Nobody knows what they mean. The main effect of these terms is to promote ridicule amonsgt the...

I don't know Janet Scott. Are there any trials to do? Do they need a 'platform'? Have we got threads on this.

This looks very much like a rollout of the usual BACME stuff - multidisciplinary, holistic, patient centred - all the wrong buzzwords. And no substance. What treatment options?

I think there is more scope for lobbying for severe services and the door does not seem to be as shut as some advocates suggested. I cannot say more.

Really? Since when was science helped by this sort of twitter babble? Why does science need these Barbie and Ken celebrities at all?

I received a draft template for services. I am asked not to share it. All I can say is that it is as feared.

Sigh.

Not sure what any of this is about but why is this guy Topol getting involved in this sort of fatuous banter on social media. Isn't this just the same rubbish going round and round?

I think we have to appreciate that in the last ten to twenty years, in some parts of the world, very much including the USA, any formal distinction between medical science and either crackpot ventures, or fraud, or both has disappeared. Things have changed out of all recognition. Just as people...