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Yes, me too. It may turn out to be an artefact or error, but someone needs to show that before it can be abandoned. Even if it picks up evidence of an energy limitation but can't reliably discriminate one disease from another, it's still important.

Literally never mentioned, either time. I guess it's possible the reason for the procedure makes a difference. In my case it was just general investigation, firstly to rule out malignancy and then later any inflammatory conditions. It turned out my problems were caused by a sudden onset...

It all seems very inconsistent. I didn't want an anaesthetic because I'd have needed to find someone to sit with me for 24 hours afterwards, and my mates were self employed and needed to be earning rather than babysitting me. The hospital tried to convince me it would be much better to be...

From @MSEsperanza: Science Media Centre (UK) did a briefing that was accompanied by an SMC Roundup of comments...

He certainly deserves recognition for his persistence and generosity, but if the character portrayed in the TV series is anything like him, he might see the offer of a peerage as an attempt to shut him up? (This might be projection on my part. The rebellious bit of me hopes he'd see it as an...

It would be crucial if it examined how to provide support to people with ME who have irregular or even no access to the internet. Or how to provide adaptations to enable severely affected people use it more easily. But studies that result in nothing actionable aren't crucial, and probably...

That's interesting. I've never asked for help with sleeplessness since I was prescribed various types of sleeping pills decades ago. They knocked me out well enough, but that isn't the same as sleeping. I decided that getting used to living with it was preferable to a rubber cosh. But I'd be...

But developers know what those things are, that's the point. Accelerometers measuring speed and direction work very well, so you can leverage that. It's impossible to tell whether someone is awake or asleep without specific, intrusive equipment, so you ignore that. Heart rate monitors work...

Yes. Which goes back to needing someone to write an app that will collect information specific to ME from smart watch-type devices. Which first needs a detailed look at how body movement changes between the PEM state and relatively well rested, perhaps starting with people who're aware...

If it's delivered properly, it's not like that at all. It goes at the client's pace, and only as far and as deep as they want to go. It's someone listening to the things they've identified that they already know are negative or unhelpful, and suggesting another way to look at, deal with, and...

The glorious irony is that some people with ME might benefit from help to change the way they think and behave. For instance, it's particularly hard for recently diagnosed people to deal with the guilt of failing their kids/partners/elderly relatives, not being able to support their friends, not...

Follow-up post from @MSEsperanza: Don't want to endorse healthcare based on pseudoscience ('anthroposophic medicine'), but thought it could be interesting that / what objective outcome measures are used in this trial -- when I last checked I couldn't find a trial on behavioral/ exercise/...

From @MSEsperanza: Abstract Background Cancer-related fatigue (CRF) is the most taxing symptom for many breast cancer patients during and after therapy. In patients with metastatic disease, the prevalence of CRF exceeds 75%. Currently, there is no gold standard for the treatment of CRF...

My experience: that's quite true to the extent that I'm no longer doing whatever caused the reaction. I'm at rest from that. But I'm not at rest in the way I would be without the PEM. I'm fidgety, I can't focus, I can't sleep, and I need to visit the loo every 20 to 30 minutes. There's an...

That's brilliant news! I hope it gets confirmed and accepted, it'll make a difference to a lot of women. I'm pretty sure mine's inherited (via my dad, who of course didn't have it), as my grandmother, aunt, and great grandmother developed it.

https://www.theguardian.com/science/2024/feb/03/the-situation-has-become-appalling-fake-scientific-papers-push-research-credibility-to-crisis-point

From @MSEsperanza: It seems this BMJ review from 2022 has received no thorough published critique yet -- at least nothing linked on the Altmetric page, and on the BMJ article only two endorsing responses. However, 2 references on wikipedia and 81 citations in medical papers. Altmetric –...

Absolutely fecking not! They need to do something about this. Why should people be encouraged to waste energy they don't have on therapy that might be useless at best and dangerous at worst, especially if the therapist knows nothing about PEM and starts encouraging them to "think positively"...

If you got your result via an NHS LFT, you can still register it (I reported both my recent infections). They don't accept results from privately bought tests, though, it's only the ones issued by the central service. https://www.gov.uk/report-covid19-result

Yes, they are. I've been on it since April 2020 and am still submitting test results every month.