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Well, at least George Monbiot has a platform, and is unlikely to be willing to keep quiet about being gaslighted!

Presumably one of the reasons it was introduced? In order to make money out of healthcare, there has to be a way of disposing of patients who keep needing interventions but just stay obstinately ill anyway. It won't be long before it's grading more apps than medicines...until they can grade...

Indeed! OTs I've worked with have explained pacing to me in various ways, but all could be summarised fairly as 'removing activities'. There seemed to be a recognition that people with ME need encouragement to add activities like Labradors need encouragement to eat.

Oh, absolutely, if people have a deficiency. I have to inject B12 because I lost the ability to absorb enough of it naturally, and if the deficiency hadn't been uncovered, I'd be in need of institutional care by now; I was developing dementia in 2012. People with malabsorption need to supplement...

Thank you for your efforts!

I so wish I could remember the name of the German theatre company doing the very funny non-verbal show at the Edinburgh Children's Festival, where they made a mess on the floor with paper and then tried to conceal it with more and more paper. I'd like to ask them where they got the idea. But...

Was it in the 80s we had this debate, or the 90s? I suppose it's like flares – they'll always come back into fashion again at some point, whether or not they're actually a good thing.

I dare say, if you got really bored, you could write an entertaining spoof trial. :whistle:

Yes, it's pain and deterioration, as @lunarainbows says. Much less of a deterioration in function for me, I suspect, as I'm not severely affected. It just burns though a day's energy in minutes. However, my autism means that pain from sound – and especially light – can be as acute as someone...

Clinical trial, then? :laugh:

Funny, though, that he doesn't say who these 'numerous v experienced ppl' are who apparently say '@NICEComms caught in a corner'. Why on earth would NICE be caught in a corner anyway? They can take any view they want on ME, because they make the rules. People tweeting this sort of codswallop...

I suspect it's thought to be part of the whole 'broken battery' phenomenon, since sensory stimulation consumes a lot of energy resources. Even people who're not chronically ill find it becomes a great deal less tolerable when they're exhausted. If we can find ways to increase energy levels in...

Yup. Also – and side-stepping the fact that 'unconscious thoughts' is a contradiction in terms – have we ever claimed that our thoughts don't have an influence on our symptoms? It would be bizarre to claim that attitude doesn't influence experience. It just doesn't cure illness.

Any academic who doesn't like been sworn at, or who is unwell or feeling vulnerable, doesn't have to make provocative posts on Twitter. They could just keep quiet and get on with their job. And yet...they don't. They quite deliberately poke the bear. I wonder why that is?

Yep. It's 42.

I'm not sure it's even this any more, to be honest, although I agree it may have served their purposes in the past. Now it looks more like death throes.

But surely an exasperated ME patient doesn't have any power at all, and that's why they're exasperated? If they had even a fraction of this kind of influence, they'd hardly waste their time insulting Paul Garner. If you could get into the House of Lords by bravely ignoring a few Twitter trolls...

There's also the fact that clinical response doesn't necessarily equal recovery. We don't know the extent and nature of the response, but as with most drugs, it would be very surprising if it were remission of all symptoms. The fact that PWME often have demonstrable cardiovascular...

Yep! Not always, but very often.

This is the bit before that; before I have any inkling that I've picked up a cold. When I worked in an office and there was a bug going around, an unexpected improvement was usually the point at which knew I was in for it too! The sniffles and crash would follow on afterwards.