Search results

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...

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.