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They did discuss severe patients taking part via Skype etc. That's not clear from this, but I expect this will form a separate group that checks in with and provides evidence to the main group? I suspect they're still figuring that bit out.

I know that the BBC contacted some patients who attended the debate for comment. Whether that results in an article or not depends on a number of factors, including editorial bias/whim. #MEAction UK and Scotland have also sent out press releases, images and quotes from the debate. I suspect...

Very interesting. I wonder if NICE will include this in evidence for harms? There needs to be a proper assessment of studies that suggest potential harm from treatments as well as those that look at the positive effects of treatments too.

She's hitting all the right notes so far. Incredible! Sharpe will be having a heart attack.

That's also a problem, indeed. For it to work, there would need to be scientifically derived averages for each of the measures included, rather than assumptions or guesses. That may be hard to cobble together, although it may be feasible. It would certainly strengthen the measures used.

It's interesting. Better than I expected. Still no mention of objective measures in outcomes (which I suggested on our table). The intro is much stronger and gets across the severity of the illness.

This in a nutshell. Note that you can also technically be sued for this if you say the same on Twitter, but journalists are a more obvious target. UK libel law is a nasty mess.

The other issue here is that people tend to work longer hours in some cultures than others. In the UK, 37.5-40 hours per week is considered 'full-time'. In other countries, you might work 60-70 hours just for employment. Obviously, that excludes things like cooking and dressing (which you...

'Nothing new'? Rather like every one of their responses to date, then.

Halving the numbers each time doesn't really make sense. A more sensible idea is to use the 10% increments of the MEA or Bell scales. Then your score would be the lowest (or the average) rank that corresponds across a number of variables: work, housework, daily living, etc. Daytime resting hours...

Mainly because the whole thread appears to implicate Wessely (so he can be added to the complaint) and because it's showing up the multiple flaws in their study. Godwin is highly respected, so his comments are very quotable. I would love it, in fact, if he were asked to give a testimony and did so.

But also, it's very political language. It implies that we're being profligate, careless and over-excitable. We're like those damn socialists in government spending all the taxpayers' money and causing the financial crisis (rather than, you know, the bankers and their ilk). It implies we're...

The recent informal assessment of the trial by Mike Godwin might help?

Not all grants are for services (many funds will specifically give grants for 'core costs', which includes staff and day-to-day advocacy), and even those that are usually factor in some amount to contribute to overheads (in 'project management', usually). Some grants are really 'donations'...

The numbers quoted in this thread for monies raised by ME charities are saddening. That's not an insult to charities or patients, but a recognition that they're tiny amounts. We don't need five-figure or low six-figure sums. We need millions. ME has evaded understanding in a way other illnesses...

It's sad if all the useful patient representatives resigned, leaving only the crappy ones. This is, unfortunately, why sometimes it's not a good idea to simply abandon an organisation we don't agree with. Sometimes it genuinely is better to stay within and fight the good fight (easier said than...

The only benefit of this is when people wake up and realise this trial is an abomination that should be cleansed with fire. It'll then hopefully lead them to the authors' other (similarly immoral) work, including PACE. This may work in our favour yet. I just feel sorry for all those people with...

All great ideas. Thanks. Another thing Nathalie suggested was some way of capturing complaints/bad experiences with clinics (that anyone can contribute to).

Yes, I've seen that one. I keep referring to the part on most/least appropriate source of care (GP and psychiatrist, respectively). That's mainly the source of Keith's 2017 paper on harms. Though unique individual stories with a picture of the person affected would be more compelling/persuasive...

I know about 1500 people have used the 'contact your MP' feature on the #MEAction website, so that's a lot of MPs who will now be seeking case studies and info! The next really useful thing to have would be a PDF of case studies. A selection of adults and children from across the different...