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Fightback used to post quite a few stories about claimants being rung up to see if they would accept this or that award (lower than they were entitled to), probably on the basis that some people would be grateful to get any support at all. Completely outrageous, it's not a salary negotiation—the...

Proper length of wet haddock, isn't it! :laugh:

'Deviance' and 'valence' are just terms used in linguistics. I've had too little sleep and so can't attempt to explain them, but I wouldn't worry about them too much. ETA: that odd-sounding term, 'utterances', is also common.

Would quite like to send them all a T-shirt, saying My patients are already doing too much!

I suspect it isn't, if there's no external ethics approval and participants have to pay for the treatment. Research projects take a strict approach to those issues for very good reasons. Patients can be really poorly placed to assess risks unless they're getting unbiased information. Apheresis...

I could really have done with someone advising me that I should be making plans to withdraw from work a lot sooner than I did! Not that this is what they mean, of course.

Indeed. It's one of the short surveys that could usefully be done with the DecodeME cohort eventually, to get a bigger and possibly more representative sample. If it turns out that, as we suspect, many people with ME either can't work at all or have scaled back their household budgets because...

You must forgive us for a bit of a pile-on in response to some of the apheresis stuff, @SNT Gatchaman! Some of us have just been watching similar stories play out for decades. Many of us (me included) would have been much more excited about it the first time round. It's actually got worse with...

By behaving like scientists? This must have happened thousands of times, but until you do a blinded trial, it's completely meaningless. It's not only unprofessional to sign people up for something with no evidence to back it up, it actually risks creating an impression that the therapists are...

I think the problem there is, useful to whom! Perhaps one of the helpful pressures might be patient involvement in setting standards for trials. If that became sufficiently attractive to funding bodies and high profile institutions to which researchers might look for future employment, it would...

It's really difficult to see people with PASC going through exactly the same exploitation as desperate ME patients in the past (or even fairly recent present).

It often is. Capital purchases are usually treated differently to revenue costs such as overheads, staff, and consumables, and are accounted for differently, too. The classic in my industry was small touring theatre companies being given thousands of pounds in funding year after year to cover...

Same here—said on the news that the website (which refused me last week) was being changed from today, and I've been able to book for 21st. Only came up with two venues with wheelchair access and disabled parking that are close by, but as one of them's five minutes away, all good. Sometimes...

Thanks, Tom – it was easy to find the charity and vote, and it appears you can opt out of follow-up emails too. (Hopefully!)

That's all really interesting. I'd never read anything about it, and was clueless about the 'commitment', but had made assumptions about the acceptance bit: learning to accept the limitations of your illness and finding things you can enjoy without making your symptoms worse, instead of...

I'm not sure of this, but do you not ask the assessors for the report? The idea that that DWP couldn't provide it is laughable since they based the decision on it, but something seems to stick in my mind about asking the assessment company for the reports. I've only ever done three assessments...

I'm much more interested in this, since it seems at least to be a real phenomenon. We don't all have it, but it does seem to be a feature in some of us. There are a lot of potential explanations for it, but I'm not sure anyone's really pinned it down yet. The effects of it on patients aren't...

In strict terms the guideline shouldn't have any effect, as awards are supposed to be based on how an illness affects the claimant, not what their diagnosis is or what any guidelines about it say. I've heard reports of issues with assessors questioning whether people have or haven't taken part...

They're not used to people actually checking their homework, are they? Can't decide whether it's hilarious or just terrifying.

I take them because they reduce PEM and help me digest carbs, but I've no idea why. I once spent six or seven weeks getting though a tub of identical-looking but different supplements, which I'd picked up thinking they were BCAAs. I cursed the brand for selling fakes because they didn't work at...