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Indeed! There are people who experienced what used to be called PVFS (aka the long tail of some acute illnesses), then went on to be diagnosed with ME/CFS because they still hadn't recovered after a lengthy period. There are also people who were diagnosed with ME/CFS, advised to do graded...

The tendency in the UK now, specially with glandular fever/mono, seems to be to regard this as part of the normal course of the original illness. I know a couple of people who developed it as mature adults, and from recollection both their GPs said similar things. It seems reasonable enough...

Bear in mind I inherited my terminology and understanding of its meaning from people born in the 1920s. I've no medical training, and meanings change. I describe fever as a burning head and chest that's often flushed red in lighter skinned people, but that doesn't mean you do. :D

Is a high fever is all that common anyway? I can only remember two episodes in a lifetime, one with measles and the other with 'flu. I didn't have ME/CFS when I got measles, but did when I got 'flu. I've probably had an elevated temperature at times, but what I'd call fever is so pronounced you...

Wouldn't that be a long discussion! :D

Maybe it's the Special Insight that can't be taught on a course. Or tested in an exam. Or even known by an individual themselves. Only those with Really Special Insight can ever know whether Special Insight has been achieved. It's a fair bet people have been pulling this one since before Homo...

Yep. But also, people with experience of living with ME/CFS have a very good idea of what exertion is too much—what will leave them with the post-exertion effects that people want to investigate. Guess I'm wondering whether it's possible to use that knowledge to design short term...

I'd like to ask something about research into findings like this. Given that real-life PEM is almost never triggered by pedalling a bike and breathing into a tube, are there practical, scientifically respectable ways of measuring pre- and post-effort effects without all the resources needed for...

I'm pretty sure we played it on recorder at junior school, only with piano and shaky eggs.

I don't understand why, but alcohol ingestion is a trigger for paralytic episodes in genetic hypokalaemic periodic paralysis. Not directly relevant, I only mention it because it's an odd effect, just as it is in ME/CFS.

It seems to me the article is trying to draw a useful line in the sand between the history and now, but also call bullshit on the pretence that we understand what's going on. It's important to underline that doctors can diagnose it, discuss it, and be genuinely helpful to people trying to...

That would help but the biases may remain, such as differences in the response to men's and women's pain, and to white women's and black women's pain.

Interesting one, isn't it? Maybe we should dig further into how it presents in those that have it. A few conversations suggest my experience (muscle pain and marked weakness, as well as nausea and headache, in response to a single unit of alcohol) isn't especially typical, but I'm not sure. The...

The doctor sounded like a blokey chef talking tasty winter stews. We could really do without help like that.

Really interesting read, thank you! First thoughts: This seems to me so important that I'd put it in its own paragraph. Possibly even starting "First, ME/CFS appears to stand for...". This may need clarifying a bit. People do talk about fatigue, but the difference is that they describe...

It's really frustrating. Some of it, especially where they talk about how patients describe their symptoms to doctors, could be really useful. Do GPs need to hear all the theories about aetiology anyway? Surely they'd be most interested in what they can do. Given the base we're starting from...

Starting with the fact that practically nobody with a chronic illness has a baseline capacity resembling a healthy person's, so the idea's nonsense from the off. No matter how well they manage their symptoms, the answer to every question is "It depends on...".

ME bus drivers would be like our day trip to Scarborough in the 1960s! :laugh: The coach driver had had to stand in for another bloke at half an hour's notice and he'd no idea how to get there from Sheffield. The passengers had to direct him all the way, and my dad's mate somehow managed to...

Or any social care for those who can eat, but need support with other aspects of their lives to stay as well as they can. There's been a growing trend of significant numbers of people having legal entitlement to services which are either already overwhelmed or effectively don't exist at all...

What a fabulous talk.