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But it presumably wasn't the result of them being bullied into submission by "action" carried out by "militant patients", and it was the result of a review of evidence. The evidence might be hopelessly weak and the conclusions might be unreliable as a result, but it's still a review process...

Surely he'd only really need to read the draft, though. The story is about the response to it by a group of doctors and researchers, who're conspicuously few in number and employing familiar and not very sophisticated tactics. That alone ought to raise at least one eyebrow.

It is, of course, but NICE had already done the work for him. In great detail and with not inconsiderable expertise. All he needs to assess is how likely it is that the NICE committee is made up of gullible idiots, and whether the objectors are actually presenting any scientific arguments. I'd...

I explain that I'm disabled, so moving X pieces of furniture would need to be priced into the decorator's time (which signals that you don't expect it done as a favour). They always want to come and look at the job before quoting, so they can see what needs doing easily enough and include it in...

Yes, there are studies ongoing in the UK. The trouble is that it's not easy to draw clear inferences from waning antibodies alone (they're not our only defence against infection), but on the other hand, there are people who're extremely vulnerable because they have low immunity, and when it...

I think you can opt out of sharing with commercial partners before you sign. I ticked No for that box, even though I don't think I feel particularly strongly about it. Most of the autistic folk I know personally seem to have joined up. This is actually how I heard about it, as I'm not a member...

Didn't hear that one! Honestly, bloody journalists...it's mostly about genetics (so in fairness I suppose mothers are 50% to blame), but the only questions I can remember about family in the main survey are whether they had autism or related diagnoses, how old your parents were when you were...

As people may have heard in the news, a new study launched yesterday called Spectrum10k. I thought I'd post it here in case any of our autistic members had missed it. Headline description Spectrum 10K aims to investigate the genetic and environmental factors that contribute to autism and...

There was talk in the 90s about ME patients being in a sense comparable to highly trained athletes, in that both groups are functioning at the limits of their endurance. I don't know whether that comparison is meaningful or not, though.

Does that mean you don't owe him the courtesy of refraining from tweeting his hilarious tantrum for the entertainment of Sweden's ME patients, then?

Are you on Twitter, @Yvonne? That would make a really neat thread to shortcut the arguments.

This whole individualised medicine thing is a serious concern. Didn't the concept emerge from the possibility of (eventually) predicting which patients are most likely to respond best to a particular cancer therapy, or be at risk of serious side effects from a drug, depending on their genetics...

I'd completely forgotten how bizarre the criteria are! My claim was indeed based on mobilising. I use a powered wheelchair, so they've never even bothered to call me for assessment. But my inability to concentrate for long is far more of a barrier to work than needing bloody wheelchair access...

That's how it's supposed to work in the UK, and for some fortunate people, it does. In theory, it's a sound idea: the impact of the same condition, impairment, or injury can differ vastly between individuals depending the their age, co-morbidities, profession, and social circumstances. In...

As an aside: We had (briefly, fortunately) a GP covering at our surgery who believed much the same, but even he knew that GET and CBT don't work. "I wouldn't recommend this clinic [our local ME service] because they haven't done much to help anyone I've referred – people are still not getting...

Yes, I guess even if it's more an attempt by a patient rep to gather additional evidence than a formal part of what the committee is doing behind the scenes, it could still be important.

If it is real, surely NICE will make the request in some formal way?

Good-o! Let's see it then, Andrew.

I would agree if there were any specialists available, or any existing understanding of what needs to be monitored and tested and reviewed, as happens in other specialisms. But these services, and the expertise to run them, need to be built from the ground up. I don't know what the clinics are...

Thank you!