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https://mastodon.social/@_slotek_/112847835155852556

To save anyone time if you were thinking of going to read the paper: it's just as weak and dishonestly slanted as you might be imagining.

Seen on social media, not an ME case but relevant to eating difficulties being treated as a mental problem not physical: https://www.justgiving.com/crowdfunding/Help-Megan-debs-wood

It's interesting to see journalists being unafraid to present the psychological view of ME as a causal factor in the failings of care. I wonder if we'll see any pushback from the BPS guys (via the SMC?)

There's a group called Not Fine in School for parents of children experiencing exclusion from education for a range of reasons, including health conditions - they might be able to give you some contacts. They have a Facebook group just for parents and carers which has 60,000 members, but their...

Postscript: sometimes the amazing improvements reported in case studies of toddlers turn out to be mainly that they got a couple of years older (but their parents spent a massive amount of money so we have to do a write-up).

My perspective on this is that I'm autistic and I have an autistic child who would fit the 'severe' categorisation (at a specialist school, may never live independently, etc) except for being verbally fluent - the concept of 'severe' autism normally includes being non-verbal or just speaking a...

PIP consultation closes at the end of today. It's a stupidly long form that you can't save - but there's no requirement to answer all the questions. I just picked one box and wrote a couple of sentences...

I found it hard to navigate - it's cluttered and visually overwhelming with a lot of irrelevant pictures and repetitions. Might be more useful for people who don't get brain fog! Relatives and friends of patients maybe.

So either that's an unusual cohort at the outset or their definition of LC is meaninglessly broad.

I'll speak up for my local LC clinic, which hasn't tried any GET/CBT nonsense on me at all. But yes, 'get the help they need' is the wishfullest of wishful thinking. The most practical help they've given me - and it's no small thing - has been supporting me for ESA and PIP.

Thanks for transcribing all this, Dakota15. Fascinating and frustrating.

They're working on the assumption that there's a 'virtuous circle' in which brain fog goes away as long as you just work harder on your 'skills', just as the physical exercise proponents think that physical fatigue goes away if you just train your muscles harder. No awareness at all of the...

Tiny numbers (7 in the treatment group, of whom one didn't adhere to the treatment; 9 in the control group, of whom 5 dropped out at various stages), not well matched (treatment group were on average a decade younger than the controls, and had been ill on average 7 months - so still at the stage...

My husband is gluten sensitive and his experience is very much like yours, including not knowing that the test wouldn't be valid if he was gluten-free at the time (why don't they explain this to people?!).

Not terribly well controlled then, if some of the participants were completely off gluten at the time of the trial and some weren't?

Not a fan of "dark" being used to denote "bad". If her work stands up to scrutiny then she ought to be able to find a scientifically descriptive term for this personality type, rather than relying on an emotive symbolic one.

Part of the Lightning Process is that patients are told that in order to get better, they have to tell their 'recovery story'? i.e. they have to say they've recovered when they haven't recovered, otherwise they won't recover.

In the cohort description it says "Individuals recruited were symptomatic COVID-19 patients aged 18 or older, who had at least one risk factor for severe disease."

Needing intervention for homicidal thoughts and needing a chat and a hug after a breakup are just not in the same category of therapy, however much the person selling the service says they are.