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I don't know, but when things like that happen I usually start by quitting the browser and then reopening it. Might not work, but it's wort trying.

When I asked my consultant rheumatologist to remove the diagnosis of fibromyalgia she'd written into my record, she said it didn't matter because [edit: FM and ME/CFS are] the same thing. I said it mattered to me because I've never even been assessed for FM, let alone diagnosed with it. She...

Done!

I like that they just got on with the work, instead of spending half their time drawing sciency-looking diagrams and telling the Xitterati how amazingly expert they are.

I don't know. I guess it's safety—with newer drugs we may not know the risks of repeatedly using them over decades—but cost/benefit is bound to come into it too. Prescribing guidelines tend to be conservative generally, and in any case some less severely affected patients may respond well to...

That's great news! Sadly I failed to stop myself imagining them pioneering the first consultant-led ME/CFS service, working with research partners at UCL... I always get carried away. :rolleyes:

That's great news, although it's a shame about those two points. After retirement age the reassessments tend to get less frequent. I'm sure there'll be exceptions, but there seems to be an acknowledgement that older people are less likely to improve, so it probably costs more than it saves to...

Yes, in the UK these tend to be third or fourth-line therapies. They use safer drugs where possible because some people need treatment on and off for life.

My mind's still trying (and failing) to get around the idea of finding a medical practitioner who'd be interested enough in the place of rest in disease management to take part. In ME/CFS, at least. In other chronic illnesses with a fatigue or fatiguability component, it seems to be regarded as...

I don't have any. I rarely speak to doctors about ME/CFS because apart from the pain relief, there's nothing much they could do. All I have is my summary health record, and even then it's buried at the bottom because the date's 1976. So far (touch wood!) it doesn't seem to have been a problem.

Specially coarse-cut, with a splash of oude jenever in each jar. Yumm.

You can also have both pathogenic variants and not be affected. My mam did, though her sibling was affected. Quite a substantial percentage of people in Britain and Ireland are carriers—10 or 15 percent is the usual estimate. I don't think it's usual for haemochromatosis sufferers to feel...

It sounds like an opportunity to grab a share of the funding for...well, something, we can work out the details later. If they promised access to basic healthcare and twice yearly review I'd be genuinely excited.

I don't understand most of what's written on these threads, but do find it interesting. Could you train a model like this on an entirely different dataset, where there's known to be a genetic component but it isn't at all straightforward—autism, lupus, psoriasis, etc? Or do you have to...

It also strikes me that "measuring" fatigue (as per title) and "assessing" it (the objective) are very different things, and the first is implausible anyway. Doesn't give me much confidence in what follows.

Yep. I was willing to do this one because I saw it in its early stages, so I knew it was worth the effort. So many are shams, designed to give the answers the service provider wants. There's also feedback fatigue. Every time I receive a package from a UK courier I'm asked to rate the...

I wonder if there's a vision for severe services that everyone could unite around? What's missing for us is the consultant who's usually at the centre of patient care, even if some of the routine monitoring is done by nurse specialists. Are there models where a GP is in that role? Or would it...

Surely it would be difficult to do this kind of work without setting it up properly as a project, with its own ethics assessments and so on? It's hard to see how you could just bolt additional investigations on to DecodeME, unless they were explicitly consented during recruitment. It's even...

They're mostly nurses, ambulance techs, etc. There are hundreds of them and there's no reason to think any were involved in this. They're just ordinary workers who're very unlikely to have been in positions of influence (it doesn't pay well enough). Judging by interviews I've heard/read, some...

I think it would be great, provided they wanted to do it for themselves rather than being put under pressure to be lab rats for the whole community. But maybe the big sequencing project needs to happen first, to reveal where to look? First degree relatives will have vast numbers of genetic...