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It sounds really interesting, I so wish I could still read things like this. I know I'd last barely 10minutes before needing a break, though, and when I went back to it I'd have to read the first 10 minutes'-worth again to pick up the thread. Rinse, repeat ... give up!

That looks really good, doesn't it. Hopefully it will get read and used. It reminded me of the thing I'd like inexperienced GPs to know about ME, and that's the importance of powered mobility aids for some of us. Using one was very strongly discouraged by my GP, on the basis that I would become...

It's slightly difficult, as it wasn't always consistent and not always by choice either. For instance, I might be ready for some work but have to wait a few weeks before something came up within striking distance of where I live*. But on average, I'd say four to five months was optimal. That...

Agree 100%. I wouldn't refer to it as rest if I were speaking to anyone other than an ME community, I'd call it recovery time.

I was only able to take time off because I was too ill to work, it wasn't negotiable. But when there isn't that level of illness, I'd agree entirely about breaks of only weeks in duration. Momentum is crucial, and every time I took a bit of annual leave, it was a nightmare to get going again...

I did it when I retired from full-time work. Not in the hope of recovery, but of recovering more function. It worked, but as with previous recoveries from parlous states, it would not be hurried. It took 18 months to begin thinking about work again, and it was two years before I was as...

My experience of fractures has been much as you say, recovery is bit slower. But it is definitely a great time to pack in some recuperation, as you don't tend to beat yourself up so much for not doing stuff. I've never broken a hip since developing ME, though, only a collarbone, ankle, and...

It might, especially given that at proof-of-concept stages, more effort and care goes in to delivering interventions and fewer corners are cut. Some people suffering from depressive illness seem to benefit from talking therapies and gentle exercise, and if some have comorbidities and/or need...

Yes, that does get to the nub of it. It also has the advantage of potentially making it easier to monitor patients for longer, as they're less likely to get bored by completing a long questionnaire. Given the natural ups and downs in function that some ME patients probably experience no matter...

Aah, but they still get paid, and that's what matters! Perverse incentives need to be removed, and funders ought to get a lot sharper—if people in receipt of arts grants produced effluent comparable to the output of BPS researchers, they'd never get any more money. But the edifice has been...

But this is part of my problem with the SF-36. It compares people to "normal", even if they don't have anything like normal function. So is the purpose to show how disabled we are, compared to others; or is it to measure what happens to the function we have—however low or high it is at entry...

No, I haven't for ME, but then again nobody has needed to monitor my long-term response to a treatment in a trial, because there haven't been any. It's the issue of how to record whether people have got better, stayed the same, or got worse as a result of receiving a treatment or placebo, in a...

Ah, yes—now I've had chance to look, I have been screened using this. The rheumatologist got to the third hilariously inappropriate question to ask a wheelchair user, screwed it up, and lobbed it expertly into a bin eight feet away. I got the feeling she'd done it before. As it makes no attempt...

I've never heard of it, at least by that name—I'll look it up.

I'd say I've had the fatigue—lots and lots—but not really burnout. I've been lucky enough to have a fair degree of control over my environment, specially as I've lived alone since age 16. I wasn't even allowed to do further/higher education, with all the stresses that brings at a...

That's mainly what drives me to contribute to research. I've long since reached an accommodation with ME on a personal level, but it breaks my heart to see young lives still being blighted from the teens onwards, as mine was—especially those who're severely ill.

I don't expect to see much change in time to make a great deal of difference to me, to be honest. But I'm sure we'll find drugs eventually that offer worthwhile improvement, as in other chronic diseases, and we may learn how to lower the risk of developing it too. Let's hope the genetic study...

I know this wasn't addressed to me, but when I think about it, all I get is a question in return. If there is a really effective disease modifying drug already out there, shouldn't we have stumbled on it by now? ME is common enough that patients must surely have been treated for other conditions...

It would have been very useful for me. Doing part time fixed-term contracts could have meant I was able to stay in work longer, using a system of working for a few months and then claiming ESA during the obligatory recovery period before starting the next one. The trouble was that if I was off...

I wonder whether it's occurred to them to do this study on people with chronic pain caused by cancer, or inflammatory arthritis, or basically anything that isn't a maligned disease like FM? Thought not. Cancer wouldn't stop you publicly lampooning halfwits who suggest that walking isn't curing...