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Is there a confusion/conflation between symptoms and measures? Just because one of the (many) symptoms of ME is bone-crushing fatigue, that does not automatically mean fatigue is the right thing to measure. It's as if there is this automatic assumption that "measuring symptom severity" is the...

It's akin to risk analysis, for aircraft, cars, etc, etc. Risk => likelihood of an adverse event x the severity of harm from that event. As soon as the per-event severity gets a bit high, then the risk shoots up even if the event frequency is not that high. You would not need many Jumbo jets to...

I fully agree with this. But I've just had a response from my MP, who in stating this, seems to be using it as a prop for implying MPs should not be getting involved at all. I know this is a cop out on his part, but would like to be able to respond back with what I believe MPs should be doing...

Absolutely. Sometimes even if you gather mostly anecdotal information, then a golden nugget of hard evidence might turn up that would otherwise have never been volunteered or discovered. I'm sure that many investigations brought to a successful conclusion, end up accumulating vast amounts of...

However, this surgery http://www.dromarasurgery.co.uk/news.aspx?p=Z00226 has a link to the BBC item in their news page (scroll down BBC Health column). In case it also disappears, I've saved it at https://web.archive.org/web/20180627213408/http://www.dromarasurgery.co.uk/news.aspx?p=Z00226...

So I wonder who talked to who then. Beyond pathetic.

Yes, it's as if SW, MS, et al have this way of hijacking the names of things that make sense, and then corrupting them to a nonsensical form of their own manipulative choosing ... but still use the same name. CBT, BPS, etc. A bit like the way invaders throughout history have superimposed their...

Now that is one of the best indicators yet that the snowball effect is kicking in. Especially as it has that attention-grabbing "Future lawsuits" section. Seen evidence - after Carol Monaghan's Feb debate - of personal injury lawyers starting to get interested, which will add another dimension.

Just got this image in my head of you in an ME clinic. Doctor: Would it help if we broke your leg?

Yep.

No, just providing a valuable sanity check :).

Yes, rereading my post (including typo!) I can see it sounded accusatory rather unfairly - sorry @kmclellan. I guess I'm just concerned we must strive hard to never seem churlish in such situations, no matter who is making a statement - it can be an easy trap to fall into, and so damaging for us.

I think your gotcha maybe got to Prof. Michael Sharpe. I dearly wish doing right by PwME would also get to him, as he still could do if he really cared. We are not playing games, far from it, but MS's tweets show his own form of game playing, and how to not take seriously the lives of so many...

Which may also be when they start blaming each other.

Exactly. More as a thought experiment.

This articel may not be perfect, but it's a hell of a lot better than the BBC's previous track record, and I think it should be recognised as such. Slamming everything just because it's not ideal can be very counterproductive. Why hammer people who show promise of becoming good advocates for us...

Steven Lubet is a professor of law, and therefore I would think have an extremely pragmatic eye on the ball from a legal perspective. I would not pretend to fully understand his strategy here (for strategy I'm sure it is) but I would not be surprised if it helps our BPS folk to perhaps dig...

This is pretty close to direct, and if that participant was prepared to talk to Carol Monaghan, they might (but their choice of course) be prepared to go directly on the record. But the above is a pretty close second to having that. Also interesting that the above quote includes "and that...

???

Yes, a better comedian than scientist maybe.