Search results

I don't know, but possibilities are that either the doctors didn't believe it could be justified, didn't believe a decision to order it would be supported, or believed it was too late and surgery would only hasten Maeve's deterioration. I had a relative in rather the opposite position, pressure...

Would it make a difference if someone did all the prep? I sometimes get help with that for batch cooking. Chopping raw veg is a whole order of magnitude easier to explain, but it still makes life a lot easier.

Sort of! Though it could just be someone who for whatever reason needs ultra-flexible work and not too much of it. I used to have help with cleaning from a woman who'd been made redundant a few years before pension age, who topped up her income doing cash-in-hand work four mornings a week. Her...

Maybe just a lesser evils argument, in extremis? No pilot wants to land a plane on a road, but if the engines are gone and the only other option is crashing into houses...

That's interesting. Have you found it all right with doctors? I mostly tend to talk about PEM as a consequence, rather than a cause or a separate thing. Not because I'd understood the problem with trying to explain the processes—I only learned that here, and even then it took a while to grasp...

If they're anything like the local schools built under it, their useful lifespan isn't much longer than the rental contract. We'll soon be back to square one, with the only durable asset gained being a ready-levelled building plot and an asphalt drive. In the case of the NHS, the building...

The autism passport might be a useful starting point for some pwME/CFS. It lists some of the things we might want to draw attention to—specially as a brief summary for nurses, who'll be handing over to others at shift changes. Most important things to know about me How I would like you to...

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...