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Yes, mine was 2.85, which I think is fairly accurate – though it's skewed a bit by a walking impairment that I don't think can be explained fully by ME alone.

What do folk think about specifying that the tool offers an indication of maximal functional capacity? I got my result by answering as if I was having a reasonable day. I usually get several of these a week, but never seven; sometimes there are none, often because something outside my control...

I wonder if there's also something in the disclosure of evidence rules. I'm not sure how this works in private prosecutions, but a public prosecution requires full disclosure on both sides. Of course people may try to game it, but there's a real risk of live cases collapsing and convictions...

Private prosecutions (those not pursued by police or law enforcement agencies) might be more common here, I'm not sure. They can be a good thing—animal and wildlife charities often have to bring them, because in some cases there's not much chance of the police acting. But there isn't the same...

Same here. I'd had it for 30 years before I even knew it existed as a concept.

It used to annoy me like crazy when I couldn't find the diaeresis on a keyboard. Now I just wish I had the energy to be annoyed!

Whilst I've been saying that the ME story is very different to Mr Bates vs the Post Office, it was interesting that in that dramatisation, most of it was scripted by a writer but Paula Vennells' own words were used throughout. That was very powerful.

Yes, but compensation alone isn't justice, especially if it's funded wholly by the taxpayer. Justice would be the senior managers involved on trial in the criminal courts, the repayment of some performance bonuses, and Fujitsu getting a very large bill.

Some of the deficits may not have existed, but it's difficult to unpick because engineers were invisibly changing branches' figures in the background. The money the sub-postmasters paid in to balance their books was real, and appears eventually to have been paid into the business's profits...

This. People knew Horizon wasn't fit for purpose from Day 1. They knew engineers were making adjustments that sub-postmasters couldn't see. They decided to blame the operators because there was too much at stake to expose the failures. They deliberately and persistently isolated individuals...

I'm not sure how much to worry about this. My experience of physical, cognitive, digestive, sleep, and sensory symptoms in the first two days of PEM is a near-perfect match for the onset of a respiratory virus, which suggests they have something in common. That brings @Sean's point back in...

Same thing thing has occurred to me—I've even wondered whether DecodeME will look at maternal haplogrouping. (I haven't asked, since I'm mostly curious because I'm a member of a weirdy one and the question's probably irrelevant.)

That looks fine as long as the definition is tight enough that everyone is describing the same set of phenomena. If they're not, it's potentially very unhelpful. We need to know whether PEM (as defined in ME) occurs elsewhere, but a slack definition will result in confusion and lost opportunities.

Those are good points—they're also good arguments for much more patient participation in study designs. A registry won't solve the access problems either. Travelling for an hour is difficult for most pwME, and unfeasible for some. It's a major challenge in a country like Britain, but the...

Interesting, I'd forgotten that. It needs clarifying, then, if it isn't to cause confusion.

And to me, I've never known cognitive exertion provoke the flu-type symptoms or muscle pain that physical exertion does. Might be slightly beside the point, though, as the study seems to have involved an exercise challenge.

Britain still has a similar thing. It's now called a Lasting PoA and it's been spilt into two types, finance and health. My attorney is a sibling and I trust them implicitly, but I can't tell them to act against their own instincts. But then again, I haven't got a blanket aversion to...

Few would complain about preventive strategies as long as they're not used to stigmatise or blame people, but that's definitely got a whiff of 1930s Germany about it. :wtf: Even if they are well meaning, they need to look at their vocabulary.

Me too! :thumbup:

Yes, which is what we don't really have at present. Too many people, too confusing a story arc, no hero, no single villain, and no obvious route to resolution. There are several stories that could be told at some point, perhaps focusing on the journey of one person but with parallels to others...