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On this we have very good support including from the Campaign for FOI. https://www.cfoi.org.uk/ I have had contact with Maurice Frankel there (who helped Alem, I understand).

Sure. I am a little disappointed by a couple of things in the decision. The first is that it says I have CFS, when the only time I mentioned that I was ill (in making the appeal I said I may need consideration at some point during the process because 'I have ME') and his characterization of the...

Very interesting post. Thanks for your hard work on it @Trish and for your clear analysis.

It should be enough: Please provide the following patient-level data at baseline, 3 months, 6 months and 1 year assessments, where available 1. SF-36 physical functioning scores. 2. School attendance in the previous week, collected as a percentage (10, 20, 40, 60, 80 and 100%). 3. Chalder...

Thank you everyone for the kind words. I won't clutter up the thread with replying to each one, but they are appreciated.

It's the legal test: can a resourceful, motivated person identify someone from the data released.

This can only be appealed on a point of law.

Hehe. Indeed.

Thanks, Cheshire.

EA/2018/ 0142 John Peters v the ICO and University of Bristol. The First Tier Tribunal finds for the Appellant. And orders the release of the SMILE trial data. Unanimous decision. Date: 11 March 2019 Promulgated: 12 March 2019 Decision here...

https://www.nature.com/articles/s41562-019-0560-3#Sec6

Yes, absolutely. I just meant in terms of treating the illness. I didn't mean to suggest that I was against psychotherapy in itself. And in fact that's another point those psychiatrists make.

I agree it's important not so see this as medical or mental. It also is not good tactics: Some of the people working in this field who support us or who remain open to hearing our case are those who are fighting the 'critical psychiatry' people who try to deny there is anything but the...

Yes, and this is a bit more on the funding. https://www.nihr.ac.uk/about-us/how-we-are-managed/our-structure/infrastructure/biomedical-research-centres.htm And the SLAM one here. https://www.maudsleybrc.nihr.ac.uk/

My understanding is that they have tried to suggest certain personality types and life experiences are linked to developing ME and that trauma can 'trigger' the illness.

I think that's an important point. The BPS model is not 'psychosomatic' or 'psychological' as generally understood. ME is not seen as a product of an underlying emotional/psychological problem. Indeed such a problem would actually exclude a diagnosis of ME. The BPS crowd have in a sense...

Drink cocoa for chronic fatigue. Not a recommendation. Not looked at details. https://jnnp.bmj.com/content/early/2019/01/31/jnnp-2018-319496

The first thing I would try is to send an email to both FOI departments, copying the responses you have received and saying something like: To both parties, As you can see (below) I have made requests to both authorities and each has said the other is responsible. I wonder if you could please...

Moderator note: the posts on Sue Pemberton have been moved to the ME show thread here https://www.s4me.info/threads/the-me-show-series-two.7873/page-3#post-148075

Not a recommendation. Paywalled here: https://www.thetimes.co.uk/article/nathan-douglas-london-2012-was-the-darkest-period-of-my-life-vxt5gftcx