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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.

If my maths is right, less than 5% of the people invited to participate returned an intake questionnaire - and presumably not all of those will have done the follow-up surveys - so possibly not very representative of a general population?

happy unhappiness upward downwardness daytime night-timeness words, what even are they?

also when you're typing on here it's a communication with people who broadly get where you're coming from, whereas if you're writing a letter to someone in government it takes a paragraph to explain each concept that you could communicate with just a phrase here.

It's good to see increasing numbers of studies looking at PEM. I'd love to see some research on what happens *before* PEM, what chemical state the body gets into when it's responding to unusual demand, which triggers or cascades into PEM later. What it is that enables us to 'push through' at a...

Paul Garner is a signatory to one of the letters responding to the article about Toby here https://www.theguardian.com/society/article/2024/jun/18/concern-over-children-with-long-covid-and-theories-on-its-cause At least the letter itself doesn't include any psychosomatic waffle, although it...

No idea if this is relevant or any good, but someone I follow on Mastodon just posted a link to this with the comment that it's good to see a study taking menstrual cycle into account when looking at POTS. "Abnormalities of Angiotensin Regulation in Postural Tachycardia Syndrome" 2011...

Rifle shooting? Especially the category where you can lie down?

(Not really sure where to post this, sorry if it's off topic) I was half-listening to the BBC 6 Music breakfast show as usual today. Someone who'd called in to suggest a song started talking about his partner who has Long Covid, and how they can't listen to music together the way they used to...

or maybe she's just getting better.