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Yes, amazing nonsense.

The CI has been away on holiday so we're still waiting on wpai_q3 and wpai_q4. Here though is the information booklet sent to patients.

https://www.frontiersin.org/articles/10.3389/fmed.2020.00006/full?utm_source=fweb&utm_medium=nblog&utm_campaign=ba-sci-fmed-botanical-lyme-disease

Heathers is a data thug with @sTeamTraen

They have been requested.

Good.

I presume your exchange means S4ME will be applying to be recognized as a 'patient advisory group', @Adrian ?

Yeah, I think that may not be available.

Ah, yes, I was using the format from the data summary. I'll ask for that then. Yeah, I can imagine. They have been busy. Hope it's all good now.

Thanks very much for that. I saw about your connection. Hope everything is OK and no other damage and it's all repaired. The wilds of Wales. So I should ask for the information booklet and the results for WPAI questions 3 and 4. Is that correct? Namely: 'Median hours missed from work due to...

OK, thanks. I don't think there is any chance of getting the TMG minutes. I think it's these data and that's it.

Thanks. Interesting. Does the dataset (such as it is) look complete to you, as in, they have given us all there is to be had?

'While the ICO do not make formal adjudications, except where a formal complaint is lodged, the ICO confirmed they were satisfied that NBT had applied the regulations appropriately and undertaken appropriate due diligence in reaching the decision to disclose the information.' And here is the...

Another excellent video, thanks, Adam.

It doesn't actually mention ME, but it does apply, and is quite a good article. https://www.huffingtonpost.co.uk/entry/what-people-with-invisible-illnesses-want-you-to-know_uk_5e380677c5b69a19a4b2d94d?utm_campaign=share_twitter&ncid=engmodushpmg00000004&guccounter=1

https://www.thetimes.co.uk/article/perseverance-pays-off-for-joe-salisbury-as-he-claims-mens-doubles-title-at-australian-open-h7l6qrxgm

I'll ask for that when I hear back from them about the data.

Just to clarify: UoB would have no idea that I have asked for the data. They would just know someone has. At least I presume that is true as to identify me would be revealing personal information contrary to the DPA and I would expect departments dealing with the FOIA and DPA to conform. It...

All the pre-trial stuff is in the first post in this thread.

I think that would be considered as private work and not subject to any demands for publication or sharing.