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Yeah, Nick is well aware of it, and SMILE.

Thank you for all your comments. I don't have the time unfortunately (for the obvious reason) to reply to everything. I have noted some points, though much of what has been argued I put to the ICO when she told me in October she was minded to find the way she has. My impression (partly on the...

It's that decision which has been followed in this one.

Thanks, Marge.

Sure. It would be interesting to see that. It had also occurred to me to ask AfME. Though I have a feeling that their idea of 'moving on' is to keep everything to do with their involvement as hidden as possible. I think that may be difficult as they weren't in fact anything to do with the...

I have received the decision from the ICO who accept that QMUL do not hold the anonymized data. The decision is here: https://ico.org.uk/media/action-weve-taken/decision-notices/2018/2173169/fs50673373.pdf I am intending to appeal. I have also made a similar request to KCL.

Yes, that occurred to me.

'Results have implications for treatment development and suggest that interpersonal operant conditioning may contribute to fatigue becoming a chronic symptom.' Most definitely not a recommendation. https://www.sciencedirect.com/science/article/pii/S0005796718300135

I asked the MRC for the application form. I received a heavily redacted version and asked them to review. I have now received a somewhat less redacted version. I note Wessely named as collaborator and that AfME sent a letter in support of the trial (redacted). Any thoughts on whether it's...

https://www.thetimes.co.uk/article/how-it-feels-to-treat-your-own-mystery-illness-9lmt5d2x5 Mentions ME a lot, but then it turns out he didn't have it. It's very confusing and makes some false statements. “I must say,” he said, “you don’t strike me as particularly depressed.” “No,” I agreed...

It's interesting how we all use language and want to see language used in different ways.

I don't see my illness as having been triggered. I experience it as an infection/inflammation/post-inflammation encephalitic-type illness. I don't experience it as infection followed by triggered response.

Some of my point is merely semantic. I don't see failure to recover as perpetuation. I just see it as an ongoing failure to recover. More generally, I just don't see my illness as PPP, which as I say, seems to be the BPS model.

That was how my virus became ME. I wish someone would investigate what could happen if someone infected by a nasty upper respiratory tract virus continued to be very active, because, for me, that is ME.

My illness has never been a mystery to me. I know when where and from whom I contracted the virus. I know also that in the three weeks following infection, despite feeling unwell, I continued to party and to do vigorous physical exercise and that as a result the virus became ME. I cannot...

Agree with most of comments above. I'm not too keen on Charles Shepherd's adoption of the PPP approach, which seems to me to be a BPS model. I don't believe anything predisposed me to be ill and I don't see that my illness is being perpetuated. No one would say that MS or encephalitis is being...

Yes, I've seen him use this 1/3, 1/3, 1/3 before. He says it's 'using best available therapy', but the same rough guide was being used in the 1970s as a prognosis without any intervention. (Incidentally, I don't suppose anyone else has seen that 1970s quotation and could link me to it, could...

The ICO are still considering the matter. I'll let everyone know once a decision is made.

https://www.nature.com/articles/nn.4643 Just today came across this study from September. Seems interesting to me. "Our study was based on the premise that nerve pathways originating in the spinal cord exert a direct influence on organs involved in the immune system, such as lymph nodes and...

Yes, that's what struck me. But it is strangely worded, as so much about this trial is. I think I'll still use it. I presume she is saying that data as collected are anonymous. Or something.