Search results

Good points. I suspect many of us do our best to escape the culture by not participating in these clinics once we've been diagnosed, learned the basics of management, and realised there is no treatment. At their very best they consume valuable energy for little benefit, and the worst are...

This is key. But I'd still like to know who the forms are for. Most pwME are managed by GPs, as almost no one in Britain seems to have an ME consultant (please correct me if that's wrong). To begin with, a good proportion of those managed by GPs actively avoid discussing ME unless their hand...

And is anyone going to do it? I've never had an assessment, and nobody monitors me the way the rheumatology and asthma clinics do.

Patients will only be able to give useful answers if the questions are related to their real lives. They can't compare themselves with someone else, or accurately rate symptoms on meaningless scales—they can only say how the illness impacts their ability to do the things they need and want to...

Apart from the use of CFS, I think it's rather good. I'd change "extreme physical and mental tiredness" to "mental and physical exhaustion" and "treatment" to "management", but I could live with the rest. (The Daily Mail ties me up in knots. I'm often infuriated by the political stances they...

I think I have a slightly different understanding. During a sustained activity I'll experience rapid muscle fatiguability, pain and OI; if I keep going there are likely to be additional symptoms, such as nausea, dizziness, breathlessness. If I was rested beforehand, it's not PEM. But I still...

Not in the slightest. I feel like I'm wearing a lead suit, have the 'flu, am wearing something I'm allergic to, am developing cystitis, and have just found out a favourite uncle's terminally ill. I'd pay money to have sore muscles instead.

That, and protecting the herd from infection, perhaps?

Not entirely, no. I think this is saying the person either can't complete the task, or abandons it because completing it isn't worth the payback. To me, the second point's irrelevant, and—given the history of psychologisation of ME—shouldn't be highlighted. Almost everyone makes an assessment...

Just wanted to say that this is so much more interesting than the publication!

People with co-morbidities might be excluded from some trials because they have diseases with overlapping symptoms, so it's not possible to say for certain which of them is causing Symptom X or Y. This could make the results of some studies unacceptably muddy. I wasn't even sure I'd able to...

"I need to publish something, and I've already done the cranial massage, the electronic detox, and the happy app. Crystals, maybe? Oh, I know – nobody's done coloured light for ages."

He was probably mirroring the sort of language he hears from patients, as it was for a general TV audience. He might phrase things differently when speaking to fellow doctors.

This. I'm not severely ill, but I've never experienced PEM that only lasts minutes or a couple of hours. I find it worrying that something so transient is described as PEM, as it suggests a fundamental lack of understanding of what is arguably the defining phenomenon of ME. I quite understand...

Thanks and congratulations to everyone involved in this broadcast—I've only just found out about it by logging on here. What struck me most was the lack of bitterness in the contributions from the two parents. I couldn't have done that without sounding bitter and angry (which would have been...

Wasn't it. I'd assumed a good number of the exclusions could be due to comorbidities / medication / recent surgery / ongoing investigation / pregnancy or fertility treatment / etc, but it would be puzzling if that wasn't the case.

I agree, but think it's only practical to do that if they're broken down into groups of symptoms on questionnaires. For instance, I'd never describe symptoms that aren't delayed as PEM—in my mind, part of the definition of PEM is that it is delayed—but if some people are using it that way, the...

Me too, I just keep a amount for other stuff, or spot-cleaning obstinate stains on garments. My current bottle's getting a bit elderly now, but the detergent's still fine. ETA: My cat was sick on a small rug a couple of weeks ago, and I decided to try the last of a bottle of carpet shampoo...

It's brilliant for getting accumulated breath condensate out of the heads of tin whistles, too, but that's probably a less useful tip for most members... :laugh:

Nothing to add about rice, but I do have a cleaning tip for yucky pans and bowls. I discovered it when I was 17 and too disorganised to put washing up liquid on my shopping list. I'd baked a cheese dish in the oven for some friends, it had burned a bit at the edges, and I was left with a...