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Good grief! Not seen that before. I wonder where they found the 'evidence' for that. (In case not obvious, that was sarcasm on my part). They just dream up these fancy-sounding but completely spurious justifications for their equally spurious claims of treatment successes. It is they who seem to...

Just a quick double-check @dave30th. "After Berkeley takes a 5% gift fee and a 2.5% credit card fee (except from the few donations made in the form of paper checks)". In the UK the credit card fee is truly only charged on credit cards, not debit cards. Is that true for the US or not? Just...

To be honest Andy, as I assemble my comment here ... I'm confused to. Imagine a graph, time along the horizontal x-axis and "ability to do stuff" up the vertical y-axis. (The y-axis labelled that way because it might be physical, cognitive, whatever, and ultimately it's all about being able to...

But how would you necessarily know? Many diseases start with such microscopic effects that build ever faster until they eventually become noticeable, and then intrusive, and then maybe worse. In the case of ME I was postulating that something similar might be happening, but the levelling off...

Hopefully that was just a general comment and not specifically for me, because I am 100% aware of what you say as a good number of my posts show.

The more evidence that emerges proving ME is not due to deconditioning, the more it must (surely?) prove their trial claiming to prove it was had to have been flawed. The issue then will be to convince people that it was not a case they could not have been expected to know better due to lack of...

I can't fully agree with that. My wife (who is the one with ME, mild/moderate) does pace herself extremely well, and seems to have an intuitive grasp of balancing costs versus benefits. But she does push herself into PEM not uncommonly, though normally manages to keep the severity of it...

Maybe, not qualified to answer that. If you look at extremes, then someone who is confined to bed all day with virtually no activity other than staying alive, must inevitably become deconditioned, whatever health condition it is that confines them to bed. So I was just saying that a very...

Unless a new FOI request included enough of the previously released data to reliably marry up new with old anyway, in which case it would make sense to just ask for for a cumulative dataset, as well as unique participant IDs for good measure.

Which is why I said this ... ... they would be flagrantly breaching the FOI requests if they did as you suggest. I do agree with you in principle, but worry it would potentially give wriggle room to turn FOI requests down more easily, if we ask for cumulative datasets that are potentially...

Is it possible that the more severe a pwME is, the more confounding factors there might be? e.g. A severely ill pwME will almost certainly also be deconditioned; etc.

Do we have access to a UK legal eagle's informal expertise? Maybe first ask them what, if they were acting for Bristol, they would advise Bristol to do; I suspect the advice would be to do pretty much what they are doing. Then maybe ask them, if they were acting for us, what their advice might be?

That's interesting to know. In which case I can see where you and others are coming from. I think in future, for our own peace of mind, it would always be good to get unique patient IDs with every dataset requested; then we never have to trust the data providers to have got it right, because we...

Not what I was saying. I'm well aware that sort order is inapplicable to a relational database, else it would not be relational. But once you've extracted that data, or a subset of it, into a spreadsheet format, then sort order does matter if you want to correlate different spreadsheets you've...

Another very quick thought. We may have to be prepared for the possibility that QMUL may not actually be able to guarantee a particular sort order! Someone who better understands databases will know this better, but I'm guessing that when data is queried out of a db there will be a default sort...

Yes. There may well be a disconnect, in terms of sort order, between the two data releases, and there may very well also be a disconnect between both releases and QMUL's data records. Sort order is not top of the priority list really when compiling data like this, and we only now have the...

Would there be any chance of getting them to also include a couple of variables (or however many needed) from the original 2016 release to act as a surrogate ID to sort on. We would then not have to trust their sorting of the table rows, but could ourselves sort both old and new against the same...

Is it possible to have a copy of the unmerged dataset from this recent FOI data release please @JohnTheJack, as supplied to you? I know I could probably infer it by removing the data columns pertaining to original 2016 FOI release, but would prefer not to.

Ah ... I see @Lucibee's point now. That's a bummer. The fundamental issue is really that these data releases do not include a unique participant ID (anonymous of course), such as a relevant database key or suchlike; every data release needs to include the same ID parameter. ETA: I also now...

Only had a short while to look at this, but I think it is possible to reliably align the original FOI dataset with the new ... unless I'm being silly and missing something. The new dataset is a superset of the previously released dataset so includes the same columns of information, but the...