Search results

Update. This actually made me laugh: I have heard back from KCL and... They don't hold the data either apparently. I shall be asking them to review the decision. I have now prepared my appeal on the QMUL decision and shall be mailing it at the start of next week.

Update. I have been reading the thread, but haven't been able to respond for the obvious reason. QMUL has 35 calendar days to provide the information (from the date of the decision). The other questions about redactions etc are answered in the decision itself, which I have now scanned and...

Thanks for your concern, Luther (hehe). 1. So far no it hasn't. I have been doing everything online. The PACE data appeal, which I have been working on this week, will need to go through the post, but printing and mailing should be <£10 so manageable. If it starts requiring massive amounts of...

Thanks. It relied heavily on data released by Alem so it's very much his work as well. 35 calendar days to release. They can appeal, but decision suggests there have been negotiations between QMUL and ICO on what can be redacted, and my impression is that this time they won't appeal.

Yes.

Just received decision in the post. Not read it all but ICO has ordered release of TSC and TMG minutes.

Would you be able and willing then to answer some detailed questions I have? (If so, I think it better in private, if that's OK. I don't want to sound too green ink, but I understand these forums are sometimes monitored.)

I went back to the MRC and checked some of the redactions. They said: On pages 12 and 13 the name of a Research Assistant intended to work of the study has been redacted. Research Assistants are generally junior positions and the name has been withheld under section 40(2) of the Freedom of...

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.