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I’d like to just highlight the massive own goal of “the assessment does not refer to PEM, there’s a different assessment for that” PEM being one highly specific feature of ME/CFS but also one which can be disregarded when assessing how ME affects you? Is this real? I have no words.

I don’t think it’s actually worth asking Sarah Tyson anything, partly because of the way she answers (long, but incomplete) and partly because of her brusque style. Perhaps the same questions could be put to Peter Gladwell, or the ME Association?

Ok well we can all use technical jargon to describe something that isn’t very good. Anybody able to translate? she didn’t answer all of the questions did she?

I guess if you can “think yourself better” it makes sense that other sick people can “think you sick” too. I didn’t realise my ME gave me psychic powers! Amazing. There should be more promotion of that.

It’s the lie Miranda is promoting though. But she hasn’t got any answers. But she has written a book where she explains extensively and in detail how she got better. Sucks to be her when the inevitable “good vibes only” -proof crash happens.

Nonpaywalled https://archive.ph/aLlkO

Amazing. As I’ve since got ME I should probably sue her!

I’m not saying I have all the answers or a cure, I’m just saying that when I did these things which include believing that a pain in my shoulder was a piece of grief which needed to be exorcised, and so I stood in a garden and screamed, then did a big tidy up and didn’t think “oh I feel...

He stated that she had capacity. He also made some sort of comment that expressed surprise at one point that Maeve had capacity because he thought brain fog was a part of ME/CFS. I’m paraphrasing from memory. His testimony was fascinating, he seemed totally self-assured. He also made reference...

Isn’t “magical thinking” one of the signs of some kind of mental health issue?

It was covered at the inquest, they didn’t consider it until a very late stage. The earlier discussions were that she could still swallow, she has taking some nutrition (inadequate amount like under 700cals per day) then the argument was they couldn’t do a PEG as she was unable to wash and it...

The reasoning was discussed at the inquest, the doctors considered it but she was of sound mind.

Thought experiment - They section Maeve and try to sit her up to NG feed her. What happens next after one day, three days, seven days? Taking into account the complications the first time, and that in evidence they said if they sectioned or re admitted her she would be on NG again.

But she couldn’t be sectioned because she didn’t meet the criteria. People with other diseases (usually terminal ones) can refuse further treatment. And these doctors felt she was not going to live past another 8 months. Anorexics don’t just get sectioned and force fed, there is a lot of case...

Five pages of posts have been moved from George Monbiot on ME/CFS, PACE, BPS and Long Covid As background: Some of these posts consider the question of whether current assisted feeding policy in the UK prevents some interventions for people who have decision-making capacity and do not have...

My baseline temp is 36.2, this is normal in women. The “standard” 37.5c is a myth. Sometimes when I’m unwell it increases up to 37.5 I had flu and Covid this year and hit 39 I’ve only hit 39 three or four times before in my life pre-ME

I really hope if it goes ahead, for the question “do you want to be able to ask questions…” everyone ticks “no” because it’s daft. I don’t care how many times Sarah Tyson talks about “gold standard” and “good quality” this is nonsense.

I didn’t realise how bad it is until I just read Long Covid Advocate. It’s bad bad bad. She’s practically gone Paul Garner, but with a book deal and nice manner.

I can’t see an NHS service with the capacity to even sit and go through the answers to be honest. Nobody in the NHS ME/CFS or LC spends this amount of time per patient. And if they did, I’d like them to spend that time in another way. I can’t believe I’m no longer upset on behalf of pwME, this...

It’s great, much longer than I anticipated. And for good reason.