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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.

This. All the well-meaning friends and relatives saying "But that person on that TV show said it made them feel so much better! Are you sure you couldn't just try...?"

Unserious Science The first section of this article by Adam Mastroianni made me think of quite a few studies that show up in the psychosomatic subforums... https://www.experimental-history.com/p/surely-you-can-be-serious

Also https://www.ipsea.org.uk/ is a great source of advice on statutory rights for young people with medical issues.

Ah, makes sense. Sad.

who wants to tell them?

Thinking about this a bit more: the consequences of doing an activity are the direct result of how ill you are. Your decisions on how to adapt that activity or avoid it (if you can) are based on the consequences you've experienced and/or can predict from doing it, but also affected by other...

What I find deeply confusing about the MEAQ is that it has so many overlaps. 'Adaptations' are factored into some of the activities listed, but are also included in one of the answer options. eg 'Sit up in bed for approx. 30 minutes (NB. less than 30 minutes = an adaptation)' and there's an...

"Lucy’s GP diagnosed her with long Covid and referred her to a specialist clinic. The help she got was limited. “Every medic I saw did their best, but it was all so new; nobody knew anything. I got introduced to graded exercise therapy, to try to improve my fitness, but that just set off a...

and if you're a parent researching the condition because your child is suffering with it, face having that used against you in an accusation of FII that could tear your family apart.

Seems extraordinary that a research group at one of the flagship research universities in the country is having to beg for £10 donations on the internet (from a patient population which almost by definition has little spare cash). edited to add: I don't mean this as a reflection on the...