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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.

It’s important though - the consent is meaningless? Moot? It’s not consent. You can withdraw but never remove your data? What in the dystopian, post-GDPR, Elon Musk is less problematic, data theft is this?

It’s bizarre isn’t it? I didn’t sleep well before I posted it, but it’s just….bizarre? What even is it?

There is another questionnaire CNA-ME https://meassociation.org.uk/2024/10/update-the-me-cfs-clinical-assessment-toolkit-project-and-survey/?fbclid=PAZXh0bgNhZW0CMTEAAaaU_995vCfv-T_3ENRR0XKcheSmGxu53CYkqJrkUq07IZM_zvalEzNTL0o_aem_59aMYD2Xck8ahY1K-J4A3A

Article in the Telegraph non paywall https://archive.ph/HvYM3 How Miranda Hart’s comeback fell flat

I think maybe (not a SM or marketing expert though!) you need a “tag line” to hook people in and get patients discussing the blogs. Something like (and these are rubbish, just examples) “behind the headlines/behind the accepted wisdom/a deep dive into the research..” kind of thing. I...

I think the name makes people think you’re sceptical of ME/CFS, more so than someone deconstructing the b*llocks around it and being skeptical of the bad advice and research pwME get.