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David seems to have missed the point that the abuse of people with ME/CFS by the medical establishment goes way beyond people not admitting they don't know how to ameliorate ME/CFS. There was of course direct verbal abuse of the patient community in lectures given by White, Sharpe, and others...

David seems to have missed the point that the abuse of people with ME/CFS by the medical establishment goes way beyond people not admitting they don't know how to ameliorate ME/CFS. There was of course direct verbal abuse of the patient community in lectures given by White, Sharpe, and others...

'Combined post viral condition services' That looks pretty unhelpful. It asks people whether they have ME or CFS, and claims that both are post-viral conditions (which they may not be in any meaningful sense) suggesting that whoever set it up doesn't even know what the condition is. It asks a...

I am not sure why this would be a 'group effect' since a number of these conditions involve completely unrelated processes but it would be nice to see some negatives for equally unrelated illnesses that do not have the 'auto-' tag. I am not sure about the relation of Behcets to infection. The...

I am quite sceptical about the PPI project as a whole - which I suspect is largely another of these these things that achieves the opposite of what is wanted. It gives the impression that patient interests are being served when in fact it has not means of ensuring that and may well screw things...

I doubt this is meaningful. There are likely to be confounding factors. The conditions listed are in several cases completely unrelated but the risk ratios are all rather in the same range.

Seems more like an HIV denier - which is a bit different.

The criteria were presumably discussed at an IiME colloquium meeting - which does not include patients, although there have been one or two patient advocates involved in the past. I personally do not put much store by committee decisions on methodology. The optimum methodology is different for...

Really? That sounds like BS to me. The only effect I have encountered is that you slide down the bed and end up in an uncomfortable scrunch against the bottom bed-end.

Sky's the limit, though! Mutters something about playing fields...

I appreciate all the hard work you have put into this @Daisy What I would like to understand more, though is the need for sessions for pacing. I have no doubt that pacing is difficult but if we have no evidence base for recommending anything specific - i.e. 'guidance' - then is there any...

It's deceit, let's face it. Straight deceit. And of course psychologists would know a lot about deceit and why people go in for it.

Thanks for the heads up. They used to notify me but don't seem to now. I thought I was pretty rude about the BPS people!

This is getting quite confusing! Kennedy thinks things are overmedicalised and too much money spent but he thinks ME is an underfunded medical problem? He talks of an epidemic of chronic disease that just needs diet and exercise but presumably that doesn't include ME? He is against big Pharma...

Looking at the blurb for Kennedy's book, it seems that a lot of facts are wrong but the corruption has been at least as bad as Kennedy claims. And the incompetence as well.

I am amazed that the Ostrom book came out in 2022, when all the CFIDS stuff had largely died down.

What does Kennedy say about Ostrom's work I wonder? The blurb for Ostrom's book indicates that it is misleading pseudoscience - very nasty stuff indeed in fact. Edit: judging by the quote he likes it?

One thing that worries me is that it seems that now a GP has to make a diagnosis before referral. In order to refer there has to be a disease name to fit a 'service'. In the old days a GP referred to whoever they wanted to, describing the symptoms and asking for advice and expertise (not...

I think the problem is that if a drug gets over the counter approval nobody really cares whether it works or not. Most over the counter things you can buy do nothing - supplements, cosmetics, hair tonics ... Testing for drugs on prescription tends to be reliable, even if there are some dubious...

Some quotes from Cornwall: "She said their nurse had initially applied for an OT vacancy on the team but was “so good and so interested” that she was hired as a nurse. Now, the nurse takes the lead on visiting patients at home." Which seems to validate the idea that the best professional to...