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There are a couple of issues as I see it @ Perrier: Some (few) people do recover or at least improve significantly. Without a biomarker we simply cannot be sure that they have the same illness. It may be a variant, or better management in the early days or just luck. We are more likely to...

Will anyone from NICE be attending, I wonder?

I think this might be all very well where the condition is fairly stable. ME/CFS is not stable. This smacks of Graded Activity Therapy to me and not suitable where even tiny increases in exertion make the condition worse. Most of us have really struggled because it took us too long to let go...

I agree @Mij - we don't. I tried to keep active and functionally able, but I now wonder if even the gentle yoga was too much and if that's why I am now severely affected.

Mark Baker to Kathleen McCall If they truly empathized with patients then they'd stop inflicting treatments that not only don't work, but that actively harm. So they want to continue inflicting harm on patients to justify keeping open services that offer no effective treatment and are of...

When I was first ill I started practising very, very gentle yoga. I absolutely loved it. I even found it helped manage pain a little. Now I am severely affected, even a tiny amount of extremely gentle stretches, done while lying down will have the effect of someone hitting the off switch for...

Thank you for all the work and effort you put into this @JohnTheJack. :)

Archiving may be a very different thing. You may need to pull in data in different formats, that use different acronyms or names to means the same thing, or the same terms and acronyms that mean different things.....all sorts of complications. Here we are talking about a database set up for a...

Again, this just shows up QMUL rather badly. They take £5 million for a project and allow it go ahead without the correct procedures and policies in place to safeguard the data. As someone said earlier in the thread: what if something happened to Peter White after the data had been input and...

I understand what you are saying here, but I'll bet your data wasn't based on a £5 million research trial which was going to guide the course of treatment for 250,000 patients in the UK and millions of patients worldwide. Bolding mine: while they are arguing that access be controlled, they are...

Iw sorry @BeautifulDay , I have no idea or suggestion. Just :hug: to you both. I hope you find some answers.

I think we are trying to explain the inexplicable here..... How can any university be this incompetent?

They also need to understand that the "disaster" is not just about the lack of scientific rigour and all the other documented shenanigans, but how they themselves have dealt with the situation. The university seem to be more concerned that they appear to have high standards, rather than...

You're very welcome here @dave30th! :) Having people here who are not patients, but who understand is an advantage for us. It's a very useful perspective. We have family members and carers here too, not just patients.

I understand @Indigophoton . I rather suspect they are gaming us, but I would so love to see it backfire. It would be good to use their own devious games to undermine their situation/reputation. I don't understand how these things work, but it seems astonishing that the establishment...

Even if everyone is gone either: The university owns the data and therefore has some responsibility for it. Or The researchers own the data and thats who we should be chasing. Or The data, paid for out of public funds, has been passed back to the DWP In any case the university should at the...

I don't tweet either unfortunately. It could just be the site is down because of a fault or maintenance. Is there anything in our library that might help?

If QMUL are now saying they can no !onger access the data, and they stick to that, could we go after them by any other means? I'm thinking along the lines of: 1) is there some sort of charter / standards they have to uphold? Given that patients have been generous with their time, suffering and...

Now, to be fair, they had no problem with women overworking themselves cleaning houses for the gentry or in mills. Interesting that women are only susceptible when doing a job that a man might like to do or that might confer some status.

Hmmmm..... Still a lot of psychologists mixed in there. Wonder if they'll be attending Dr Fluge's presentation.