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I can see the argument for that being justifiable in relation to sources (though I'm not sure I necessarily agree), but there's no harm in recommending that journalists use ME/CFS in their own references to it even if their article includes direct quotes from a patient who uses ME or CFS.

Sorry for the duplicate post, I did a search before adding it but obviously picked the wrong terms.

Exactly, that's what I meant about using them in other contexts. More than one GP at our surgery has suggested using them for activity and heart rate monitoring, and the afib alerts I kept getting for a few months—which it would be easy to be sceptical about in consumer electronics—were taken...

https://www.nature.com/articles/s41586-024-07501-1 Also reported in The Guardian (UK): https://www.theguardian.com/society/article/2024/jun/05/bowel-disease-hope-researchers-find-biological-pathway

Ohhhh, they're well worth reading! There are a lot of them, and it will probably make most sense if you read them in date order as and when you have the energy. https://thesciencebit.net/category/me-cfs/

I really like it too. As @ME/CFS Skeptic has added a heading examples of excellent reporting, I wonder if next to it there should be a category of (and I can't think of the right way phrase this) reporting angles likely to add to patient stigma? Under that, we could highlight the confusion...

I'm suspicious about the motives behind the assertion that technology isn't acceptable to the NHS because of accuracy, privacy, or whatever. Not least because it seems perfectly acceptable in other contexts. Thing is, results from a step counter are so much harder to fudge than responses to...

They probably understand that if you keep using the same system, it effectively is accurate. The scores don't need to be absolute, they only need to show your numbers and your trends.

Why categorise less than 30 minutes' activity as an adaptation? Nobody would call it that or understand it as such. Why not just 'no'? As for the focusing on a cognitive task, it's a bit tone deaf given the number of neurodivergent people who'll have to fill this in. Some of them will always...

Thanks, that was what I was thinking. If people are told this, any who have enough experience to be aware they'd only received a smallish dose might be less inclined to question it or base expectations on it. Similarly, any who spent the next two hours wearing out the carpet leading to the...

Yep. The fact that doing activity has disproportionate consequences is pretty much a definition of ME.

This is too confusing to parse. Adaptations could be considered separately at the beginning. As it is, I'd have to indicate repeatedly that my ability to do both essential and elective activities is always conditional on using a powered wheelchair, a wetroom with a shower chair, and a raised...

I don't think I was really aware it existed. Maybe the first thing to do is to see if the wiki will accept a note saying the page is in the process of being updated and reorganised? That might make it look a bit more credible, and give a hint to journalists that it's worth exploring other...

If any of them are ladies my age, showing them a glass of water is enough to make them desperate for a pee! But seriously, are there problems with giving participants some information, e.g. that the trial includes exploring what the optimum dose (most effective, least uncomfortable) might be...

And where there is no treatment, it's moot anyway. We have nothing that would allow a substantial proportion of patients to increase their activity levels, which is presumably why there's this insistence on only recording perceptions. Most do, but there are differences in the way the data is...

It starts from a place of deep prejudice, so it's not surprising it's alive and kicking. In my early teens I actually thought I'd witness the end of the racism, homophobia and misogyny we saw in older people. We thought the work our generation was doing to understand biases and fight against...

Probably only two things, really. The age of the doctor doesn't matter. I was diagnosed 25 years ago by someone who was well into in his 70s then, and in a very crabby mood at having been called in at short notice as a locum. I'd got nowhere at the previous half dozen consultations with a very...

And unwieldy PROMs that don't actually capture anything meaningful do? :whistle:

I think malaise does it reasonably well, and post-exertional malaise does it better because it's more specific. I wouldn't have picked it myself, but as medical professionals use it to mean something that's difficult to describe concisely, and it can be modified (severe malaise, profound...

It was great for me, even though I had a rough time! If you've struggled for 30-odd years with endometriosis, the day your periods stop is a massive celebration. Every day I felt stressed, sleep-deprived, and embarrassed by the fact I looked as if I'd just walked in to the office out of a...