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The whole thing's arse-about-face anyway. They shouldn't be focusing entirely on improvements, at least not in anyone who's been ill for more than two to three years. Real improvement is quite infrequent, so the aim and the measurements should first and foremost be about stability. Any...

You can. I work on a Mac, so my screenshots and some options might look slightly different to the way they do on Windows, but there's rarely a big difference in the actual approach. Click on the fill colour picker and choose More Colours. A palette like this pops up: Choose the middle one...

@bobbler, are you using MS Excel? If you are, you don't have to use the automatic colour sets. You can set the RGB balance and black level to anything you like. It's the More Colours option, then click on the colour wheel. (Sorry if you already know this.)

From @MSEsperanza: Apologies if that has already been posted—only able to skim but had a quick glance at some references in the paper and saw that at least in one participant-rated outcome measure, the item "minimal change" comprised all three: “a little better” and “a little worse" and "no...

Sounds much better, but what about when they get to the point that they're no longer making management decisions? It's possible I've misunderstood some of the gobbledegook in the original text, but this is my concern. I don't see how the test can show whether the outcome is the result of...

They might be, but even if they weren't, we still wouldn't be able to do it. Jaysus. How many different ways do we need to say this?

There are some professional careers that would be well suited to some pwME if they had the right skills. The trick is in picking a type of work where you can still maintain reasonable cognitive function even with brain fog, because you have a natural aptitude for it. My friend's sister is...

I'm guessing you only need to be a member of a special academy if you have particular sorts of ideas, since everybody else makes do with buses, pubs, and WhatsApp?

In't it funny how practically everybody in Britain doesn't need to join a free speech union?

I do too, but forget to mention it as a symptom. It's been there every day of my adult life, so I can't even remember not having it. I think the 'poisoned' feeling may be different in me. Some people seem to experience it with every PEM episode, others get it whenever they have a more severe...

I agree. During activity started from a well rested state, my fatiguability symptoms are similar to those of 'flu, but aren't as severe at the outset. Activity attempted during a PEM state produces symptoms just like 'flu. The pattern includes that odd stage during recovery, where an activity...

Thanks, @Ravn, I will. I guess I've already drafted most of the thoughts I had, so it won't take much longer to finish it!

Great work, everyone. I've struggled to follow the thread because there are so many figures and graphs in it and I don't really understand them. I agree that the throwing out of one participant's results because he was smarter than they expected looks shonky, but I wonder if it's a distraction...

I agree. I have friends whose lives were more stressful than mine in some areas—bringing up children, or navigating difficult relationships—but they didn't have to survive a 40-year working life with ME. We're all very different.

I haven't, but it's because I see a lot of issues with the approach but am not knowledgeable enough to suggest otherwise. I suspect their working methods are so inflexible that it'd be a waste of my time anyway. My worries include: That they're not starting from ME, they're starting from a...

It sounds unfortunate, but I think this is a recognised term for a collection of responses to acute illness, some of which are the result of unpleasant symptoms rather than behavioural choices.

I imagine so, but their business is to rake in lots of money for publishing stuff on their website. As long as institutions are prepared to pay it, they'll keep charging it. And NICE knows perfectly well that someone will post it on Twitter anyway, for people who can't access it via institutions.

I did myself a lot of harm by trying to work full time. Self employment was much better, and meant I could work on a project for three to four months, then take time off to recover before I bid for another. I had to give it up after a while, though. I live alone and couldn't support myself on...

From @MSEsperanza: Earlier in this thread I think someone asked about the possibility to leave rapid responses both on the White et al Anomalies paper and on the response by NICE authors Barry et al. Also I think someone asked about reactions on social media or media coverage etc. Apologies...

I wonder if their screens have melted?