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A rough analogy, albeit different timescales, is boiling a pan of milk on an electric cooker. For this analogy let's also assume the pan cannot be removed from the hob. If you wait until the milk is just coming to the boil before turning the ring off, the milk of course all boils over the sides...

Excellent letter. I like the way you have noted how the PACE authors have never set the record straight for PwME (despite their being best placed to do so, and despite their proclamations of only wanting to do their best for PwME).

Yes, I posted about this going back aways in another universe ... http://forums.phoenixrising.me/index.php?threads/jhp-policy-on-data-sharing.53153/ Edit: I think all data should go into some sort of "trust house", where even the researchers cannot tamper with it.

It would be good if science had a way to properly (i.e. objectively) measure energy efficiency for PwME. There must be ways this is already being done, in sport for example. Useful energy out divided by total energy in, per unit time. Energy in is relatively simple, just adding up calories...

Been trying to get my head round whether it is unethical to fund a trial whose hypothesis is one you favour. I imagine it's how a great many trials might be funded. It clearly becomes unethical if the trial itself is unethically run, and especially if the researchers have any conflicts of...

By which of course you mean the supposed go to source of information. And of course Wessely is very influential in the SMC ... http://www.sciencemediacentre.org/about-us/governance/ governance TRUSTEES The board of Trustees is the major decision-making body of the Science Media Centre and...

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Absolutely. It's like part of an illusionist's trick. Take something airy fairy and intangible, stick an arbitrary number on it, and then convince everyone that anything with a number must be solidly tangible and OK. Unfortunately it's an illusion that seems to have been working far too well.

My feeling always is that it's better to focus strongly on just a few powerful messages (or even just one) in a session, than try to sandblast people with everything all in one hit, and end up throwing lots of information at people, but transmitting no message that normal mortals can pick up on...

Good blog @Gary Burgess and congratulations on forthcoming wedding.

Being angry is one thing, and I agree it can be a constructive driver of good endeavours. But it can also be very destructive. I'm only interested in the constructive sort, as I'm sure you are @Lilpink.

Agreed, but that would be much less likely to convince a court, as even if there had been lots of good research over the years, I don't see a court taking it as a certainty PwME would have had a cure that enabled them to work again. Whereas there is a pretty solid causal relationship between...

My wife has had ME over 10 years, and it was only 18 months or so back I realised the weird situation PwME are in, especially as the PACE trial is home grown and has screwed things up for PwME all over the world. There is a major learning curve I found, on various fronts. I'm not a scientist...

Agree whole heartedly. Although in the past there have been massive attempts at raising awareness, it has been all-too-effectively stifled by those very powerful people who fear it. The big difference now is not simply about raising awareness, but raising awareness effectively, and that is a...

Interesting. Can you clarify please @Lilpink.

Absolutely so. Probably not something that would be so easy to pin down in a court of law though, as technically fraud. Whereas what Sarah Myhill is going for I think may have a good chance. I really hope so!

I wish I could agree with you, but SW is an incredibly influential individual, and I've no doubt he achieves this through deeply insidious networking - a network he has doubtless nurtured and cultivated over a lifetime. He is not someone to underestimate.

... aaaand it's gone again ...

Re-reading the letter, I'd previously missed the fact that so far as financial fraud is concerned, it is not just about financial gain to the fraudsters, but also about financial loss to their victims. The case made is very strong I think where patients have lost various benefits as a...

It's back again.