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Yes, understandable.

They did gather a mass if information. This trial is very odd. I don't think I'd have qualified on the walking tests (too 'well'), but if I'd been asked to fill in all these questionnaires, my mind would have shut down and I'd have put them in the recycling.

Thanks.

I also asked for the Client Service Receipt Inventory scores. Their response was: Anyone have any ideas as to it's worth asking for anything?

Thanks for all your work on this @Lucibee

Here are all the trial data so far released, thanks to @sTeamTraen who has combined everything in the one file. 'File is ready to be saved as CSV and then opened in pretty much any statistics program.' In fact Nick has done a csv file. Both Excel and CSV file and a consolidated readme file...

It's true many Johns are called Jack, but it was the Swansea connection that I had in mind for the handle.

Thanks, everyone for your kind words. I shan't respond to all and clog up the thread. And a word for Alem Matthees who made it possible.

It does, though the KCL decision opened that door very wide.

Hehe. Thanks, Woolie.

Hehe. Exactly. (For those unaware, a Jack is someone from Swansea.)

Thanks, Rob. That's kind of you. I would say that I did have some help in the latter stages of the appeal and thank all those who did. I'll update Tom Whipple who has been kept in the loop all along.

I first applied back in 2016. I went through review and then a complaint to the ICO and then all through last year I was in the process of an appeal to the FTT. The ICO switched right at the end to support me and QMUL settled, promising to send me the data, 'if they could'. Today I have just...

Public records show that an author of both Cochrane Reviews for ME is Jonathan Price who is an Oxford colleague of Michael Sharpe. https://www.neuroscience.ox.ac.uk/publications?author=jonathan-price

Programme on fabricated or induced illness (FII) on at 11:00 am UK time. Will be on website and app after broadcast. Trailer suggests includes reference to children with ME. https://www.bbc.co.uk/programmes/m00050jw

Interesting article by ME patient Ruth Lampard on her virtual Camino. https://www.churchtimes.co.uk/articles/2019/3-may/faith/faith-features/virtual-pilgrimage-the-road-less-travelled

It may be also that they weren't allowed access to the school records and asked schools to check a few samples.

That may just mean they checked a few against the records. I don't think it is clear that for participants they matched actual records against self-report. Indeed, there wouldn't be much point in having self-report if they were all checked against the actual records. They could just use the...

Excellent work again, Adam. Thanks very much.

Yes, age and gender were omitted as part of the anonymization.