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Just as a postscript to my comments about DWP—one area of potential risk might be if the research involved something a person has said they can't do. Knowing the answers I gave to the PIP questionnaire, they'd have every right to come after me if I then went off and did a 2-day CPET on an...

I think in the UK it depends how it's set up and what it's called. I once received a £600 incentive for a market research project, plus the rail tickets to get me to London and back and the cost of an overnight stay. I was self employed at the time, so I declared it to the tax office. They told...

I've said "It depends" because participation could mean anything from a 15-minute questionnaire to a day-long trip to a clinic that involves a lot of discomfort during or after the tests. One thing that has come up in the last few years, though, is the apparent difficulty in recruiting control...

I'm really sorry to hear that, @Woozy, it sounds like a heck of a shock after all that time. It's good to hear you're seeing a doctor, though, as it can be easy to assume everything's down to ME. It might be, of course, but maybe just describe the symptoms and see what they say? Good luck with...

Yes, and it'll save money in the same way that creating conditions where people can only afford to house their kids in Rachman-like hovels full of black mould does.

But there's not reason patients shouldn't flag issues that come up again and again in trials, but because there's no feedback mechanism to the researchers, they just keep happening. One of the worst problems is the diagnostic criteria. I understand that researchers want to be able to compare...

Even the level of risk assessment I had to do when taking fully functioning adults to a public building would have consigned it to the bin! :mad: But it'd be a great idea to come up with a risk checklist. The same criticisms about diagnostic criteria, control-matching, cohort sizes, the way...

If he were arguing this was the only reason, I could understand it. If someone developed ME/CFS symptoms after a Covid infection, it would be irrational to exclude them from trials on groups of patients who developed ME/CFS symptoms after a Covid infection, but who don't happen to have that name...

It would be a start if they pointed out that the first sentence of the conclusion contradicts most of the effing content.

Yes it is, but that's true of many (most?) symptoms of many (most?) diseases. People experience things differently for all sorts of reasons. That doesn't mean it's difficult to characterise the symptoms. Very few diseases have a single defining symptom or sign, it's more that they form a...

It sounds gruesome. Apart from the muddiness of thought, I don't think I've experienced it much from purely cognitive exertion—possibly because I don't do very much of it. I don't get headache unless I have a virus or hay fever, and I've noticed that migraine and frequent headache sufferers...

No, I suspect they can't. What I meant about rapidly fogging brains is that cognitive limitation often gets much worse as physical energy runs out, which can mean people are less aware of the warning signs. I don't know if this is universal, but I think it's fairly common. Most of my cognitive...

I agree it's potentially useful. :thumbsup: But reading about wearables studies just makes me wish someone would study how movement changes when people are beginning to exceed their activity capacity. My watch can tell me what swim stroke or training drill I'm doing, so it might be able, with...

I made a rare foray onto Facebook the other days, and saw five ads for DecodeME (three from the project team, two that others had shared). The last push seems to be working well. I also shared them, of course, but as I almost never post anything except occasional replies to other people's...

It's not about safety, as Jonathan says. It came in as the result of the EU regulation on the reduction of mercury use for environmental reasons. The British Dental Association says they don't know the reason for the restriction in children: Even the MEA dentist makes it clear that his...

I imagine the impact on NICE will be someone briefly rolling their eyeballs, so I plan to add the article to the gargantuan heap of crap I can't even remember happening.

As fas as I know, white fillings are available if they're on your front teeth or if you have a proven sensitivity to one of the metals used in silver amalgam. I imagine that's quite rare. My dentist told me white fillings don't last long if you have to chew on them, so using them on a back...

Now published - link here ******** Preprint From @MSEsperanza: "The idea of rehabilitation needs to be completely rethought for this disease" A qualitative analysis of patients' experiences with inpatient rehabilitation for long/post COVID, Hammer et al [full text in German only] Abstract...

Also from @MSEsperanza: This appears the study mentioned in the annual report of Kliniken Schmieder group (Germany) -- see this thread: https://www.s4me.info/threads/germanys-kliniken-schmieder-group-2022-report-on-long-covid-research.35731/ Some quotes from the paper's discussion section...

From @MSEsperanza: Prominent Fatigue but No Motor Fatigability in Non-Hospitalized Patients With Post-COVID-Syndrome Abstract Objectives: Fatigue is a frequent and often disabling symptom in patients with post-COVID syndrome. To better understand and evaluate the symptom of motor fatigue in...