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An aside, but the funny thing is that when we find something really works the evidence will be hard to capture in graphable form. Years ago I had ME remissions, and if I'd been attending a clinic the doctor wouldn't have recognised me at the next annual review. I'd resumed work, friendships...

I'm still hoping they come to understand that questionnaires should never be filled in whilst the patient is in a clinic. If they're sitting there, at best they're already fatigued and stressed, and at worst they may be hanging on by their fingernails. Questionnaires need people to have the...

It'd be hilarious if someone asked whether "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults" counted as abusive language.

Yeah, much the same. My cycle stopped at age 45, and 20 years later I still have symptoms. My 88 year-old nan once informed me cheerfully that she'd never stopped having hot flushes! :confused: At one point I couldn't work properly, as my hair and face were being drenched with sweat every...

They don't usually test at all, really. It's a fair assumption that if you're a certain age, hormone levels will be changing. I'd have been surprised to be offered a test, and I think that would go for most of the women I know. We didn't need a doctor to diagnose the cause of tiredness...

I agree, but they can sometimes be useful in this context. I'm of an age where nearly all the women I know have now gone through menopause, and some of them did develop anxiety or depression. It can be confusing, specially for people who're not used to experiencing symptoms like this and still...

I thought about this earlier, but is it the best way to go? As I understand it (and to be fair I don't), one of the values in these tools is that they learn. I realise they have to be trained, but is it not enough to ask them to focus on things like objective outcomes, so they're learning to...

When it was used to describe my illness, I think it really was in that sense. I first heard it in the mid-70s, when I'd seen the GP numerous times after developing ME. I saw 'general malaise' on my notes card and asked about it; I thought it was a diagnosis. He explained it was shorthand for...

To me, there might also be an opportunity to work on something sooner rather than later, iron out as many of the creases as we can, and then it's available as part of post-treatment monitoring when we do have potentially useful interventions being trialled. If somebody who likes partnership...

It is genuinely difficult and I wouldn't suggest allowing anyone else to do it. I was thinking of it either in terms of something members could offer to a researcher doing a project they supported, or an attempt (again by members) to create some summaries with all the personal/identifying...

Yeah, I think it just sounds discriminatory and patronising. You tend to know from the context whether it's being used in a neutral, clinical way, and to be fair it quite often is.

I'm not suggesting doing this, I just thought it might be an interesting question to raise. Could one of these tools be targeted at either a long thread on S4ME, or a topic discussed across several threads, to summarise the discussion points for a busy researcher? Or direct someone with limited...

My worry too. But if it can be made workable using that as a source to start with, all well and good. Most problems can usually be ironed out, once it becomes clear what they are.

I haven't the faintest idea how any of this works, but can you also ask it to prioritise other fairly reliable sources? Like the 2021 NICE guideline? If so, maybe it could even learn about the Larun review problem... :laugh:

That wouldn't surprise me, I imagine it's more the volatile chemicals that activate the trigeminal system. I could also detect those in very small concentrations, and they still make my eyes stream and my throat sore. Luckily age has knocked some of the acuity off my smell/taste system. Not...

Both of mine must be maddeningly over-enthusiastic then. I spent years reporting a really strong smell of gas that I picked up every time I passed a disused church, but no one else could detect it. After numerous emergency callouts I had to give up; I was still in my teens, and the gas company...

It is, but feeling ill seems to be common. People sometimes experience infection by the same virus differently, so if PEM includes some kind of immune ... 'thing', it's probably not surprising.

This! :laugh: Mine taste and smell has always been so acute that it's a problem, but there've been periods in ME where it's got even worse. I kept half-wishing I'd get anosmia after Covid, because just for once I'd be able to eat normal food and use a public toilet at an event where people...

Me neither, PEM makes me ill. Isolated mental fatigue or fatiguability is a different thing. Perhaps we all have a slightly different understanding of PEM because it manifests differently. Whether it's a bit of minor overdoing-it or a hideous crash that will last months, mine always starts...

Your question wasn't aimed at me (sorry!), but ... illness. Sore throat and swollen neck glands, hypersensitive bladder, feeling 'wired', inability to sleep, everything out of kilter. For me at least, fatigue isn't much of an issue on the first day of PEM. It kicks in on Day 2 and is worst...