Search results

There's already this much of a transcript. A repost of a repost, so I cannot give credit to whoever first did it, and I've not checked for accuracy.

This whole area looks such a mess. Some people do have real problems with health anxiety, getting caught up in concerns about any health problem they just read about, fears about potential health problems in the future, etc, but I have little confidence in some doctors ability to distinguish...

Anyone live nearby and fancy raising PACE concerns in front of some MPs?

That image is interesting for showing how they are encouraged to interpret patients' words. The 'Change talk' words sounds to me like a patient submitting to a doctors recommendation, but it's presented as evidence of 'desire, ability, reason, need, commitment to change behaviour'... was that...

While less entertaining than social media shenanigans, this piece is probably more important, and I thought it was good and that we're very lucky to have Monaghan as an ally. It's only a very short article. I'm slightly worried at a drift in focus away from the PACE trial, and I think it's a...

I thought that their CBT/GET sections were improved, and I want to recognise that even while complaining about the problems that remain, and Action for ME's really shameful failure to apologise for their role in the PACE trial. Of their current pages, I found the CAM one the most infuriating...

That is pretty annoying, and quite an important misunderstanding on Wessely's part. Even with the null employment outcome PACE is still hurting how ME patients applying for benefits are treated.

A lot of newly ill patients get directed to them, and AfME is very pro-active with fund-raising so can attract people unaware of the problems with them.

Wessely evades the point again. It feels like he's used to getting away with these tricks when a) he's speaking to people who don't really care about the details and just trust him and b) there's no written record of exactly what was said.

Meanwhile, I was just reading FOI'd letter from Action for ME telling the DWP it's important for people with ME to stay 'positive' about prognosis... who could have guessed that might come back to hurt us.

LOL.

It has also been linked to an increased risk of dementia: https://www.nhs.uk/news/medication/some-antidepressants-and-incontinence-drugs-linked-dementia/

But no explanation for his claim about the need for 'additional occupational support' here: Also, there's been a failure to update this document since PACE showed CBT and GET failed to improve employment levels, so there's still a promotion of the notion that CBT/GET do aid return to work...

This could be OT, but my impression from UK charities over the years is that the ones run by volunteers are better, and have a culture that's more focussed on achieving things rather than maintaining their salaries. I don't want this to sound like I'm saying that people working in charities...

This is the sort of thing where I feel it would be really useful to have good patient engagement, but where we're unlikely to have the skills and time needed to meet the deadline. Anyone already super-well informed on these issues and able to knock out a quick submission? Setting the rules for...

Best wishes to Gary. They've been coming faster than I can listen to them... slow down for my sake!

Some notes on this, but a lot was whited out and so difficult to really understand the full context of. I skipped over some bits at the end which were in colums, and the edges being missing made it a real chore to read. 7 of 34: Action for ME raising concern that NICE had removed reference to...

You have too little faith in their ability to delude themselves! When PACE did release a partial analysis of their primary outcomes, after they lost the Information Tribunal, they still tried to present this as supporting their claims about the efficacy of CBT/GET. If they'd released their...

That they dropped actometers seemed really worrying to me at the time (and TSC minutes now show that these were dropped once they became aware of the null results from earlier trials). There was an outcome that (if used over a reasonable length of time, and after treatment had been completed)...