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The physiotherapist at my LC clinic suggested I try this technique. I found it really difficult and unpleasant: almost immediately I would feel lightheaded and see stars, then would come a point where I'd automatically have to take big gulping breaths until I felt relatively normal again. I told...

https://cerebra.org.uk/research/systems-generated-trauma-survey/

Interesting stuff. Looking at tags, there seem to be a few papers that have found the same sort of thing, but it doesn't come up much in general discussions of Long Covid.

If he really wants people to 'put aside polarising narratives' and engage in productive conversations, I'd suggest that a positive first step would be for him to stop employing the glaringly obvious strawmen and false equivalences which make it very clear that he's engaged in a spin operation.

is it though?

Ah thank you, that's not a thread I normally look at!

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...