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Funny that no one diagnosed me with a music disorder when I was young, despite spending all my time and money on it and throwing sickies to attend gigs. My housemate didn't have a rugby disorder, despite losing jobs for turning up with black eyes or missing teeth after playing, or hungover...

That struck me too—I was expecting to see it being put in context with the other findings. When it wasn't, I assumed it must be due to publishing conventions, or the work being done by separate labs/in separate studies, or some other technical reason. Or perhaps Walitt thought it might...

Perhaps misunderstood—I thought you meant where she'd made a post but then edited it later. I never see the MEA FB page and had no idea she'd been involved, so I haven't seen the pattern.

Oh I definitely agree, but I can't see it would be of much practical use for benefit applications, workplace adjustments, or medical care. They all need it set out in detail, with examples, timelines, and (often) evidence. I can't really think of a context where I'd use a measure like this...

On FB it's very easy to screenshot the post you're commenting on, and add it to your post as a picture. I've done that before just to make clear who I was replying to on a busy thread.

I wouldn't want to see that either. I just want it to meet the basic criteria for scientific research. It will be interesting to see whether research co-production becomes mainstream. I'm hoping more funders will make meaningful patient participation a condition of grant, especially for major...

These percentages are really unhelpful. Disability doesn't tend to work like this. I used to be in two different groups for physical impairment. I had enough function to work full time and could sit upright all day, but needed a powerchair to visit other offices in the same building.

Absolutely! But one of the really important things they've done is to avoid starting from the assumption that a physio can actually help someone with ME. Obviously individuals sometimes develop problems or injuries in addition to their ME, and the Physios for ME guide for treating them is great...

It's particularly upsetting that in one of the cases Dr Speight describes, the hospital got around the NICE guidelines by denying the patient had ME. The attitudes all of them encountered is frightening, but removing their right of consent by involving the courts is an outrage.

It sounds like a good start—but one nurse, for a whole country. It's not enough for one city.

I remember reading about that when I was first diagnosed. But that epidemic wasn't really comparable to the sporadic cases of ME we see now, yet I suspect people might still be drawing on the research as if it were.

I want to see ME specialist nurses trained instead of all these practitioners. Nurses can be as ill-informed, badly trained, and dismissive as anyone else, obviously, but it's partly about status and respect. Developing a nursing specialism shows a different kind of intent to sending...

I think it's little more than an assumption, and it might have arisen from the Royal Free studies. There were suggestions then that the people most likely to get ill were those who didn't feel able to take adequate rest and recovery time because they worked as nurses. It may have been...

It's good to see that final sentence, which often gets missed out of articles.

I don't get asked about work (too old), but that's a really interesting question about faking or masking. I certainly avoid talking to people about ME whenever humanly possible. Not because I'm trying to hide anything, but because unless the conversation's about research or disability...

But if we had indulged in "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults", wouldn't we edit the worst bits out? Investigations of behaviour look at what happened and in what context, and it's unusually easy in this case. There's no need for witness...

Lord Simon, I think, where it's a title in an individual's personal name. Unless he's named Simon of Twittingdonthorpe (or wherever), in which case he'd be Lord Twittingdonthorpe.

I wonder if the difference is that there aren't any treatments or drug trials, and nobody really knows how to go about delivering these services? I suspect in some respects it's not even clear what they're for, beyond initial diagnosis and offering management advice to new patients. There don't...

I'm not sure you do. I suspect it's not for you, it's to justify the existence of a service. If it were for you, you wouldn't need a questionnaire. You could scribble a PEM score out of 10 on a calendar every day, and that would tell you whether you have more or less than a month ago. It'd...

I think so, yes, but many people won't meet all of them exactly. There are conditions for which there aren't any specialists, for instance, but on balance there would be enough evidence for DWP to conclude that the person is severely disabled. That's how most of the rules and guidelines work in...