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I think anything questioning the integrity of PACE that he can't answer is an accusation.

Congratulations @Simon M at getting yourself a PhD student. This could be a really good example of including patients in research work also good from a perspective of getting someone in research to understand what ME really is which I always feel can feed back into better research.

I would ask him to comment on why as measures get more objective they show a smaller change with CBT and GET with the biggest change based on CFQ and least we believe with the step test.

I think this could be the link https://www.gofundme.com/meactionuk

That's the point. Lots of implicit threats so it becomes a case of parents managing doctors and telling them what they want to hear. I do think it would be worth collecting anonymous accounts.

My daughters temperature used to fluctuate quite quickly so when she felt worse it went up. It does occur to me that if someone is getting an abnormal temperature rise when stressed then although it may look like stress causing it it isn't normal. So it suggest that a part of the body's control...

If I was looking at the data the first thing I would want to do is collect additional data and look for correlations. For example activity measures, temperature in the room, I wonder if there are proxy measures that could be used for stress as well. Then look for correlation (including leading...

I'm reminded of one FoI around the step test results for people who were claimed recovered. They turned the request down as it would take too long. But once they released some data it took me less than 2 hours to calculate including working out the details of their recovery measures. And that...

I think someone did that and they didn't have the info. When it happened to us I had been warned that it could happen but I can't remember who warned me. (it was tweet that Andy quoted).

Even then there are a vast range of different things that may be thought about including stuff like the stress of getting to where ever the test was. Maybe they should get the patient to write down their thoughts during the test so they could include a coding of that in any cluster analysis they...

I think he does believe he is right and doesn't understand the criticism etc But then for his self image he has to believe that.

Its clear that they are still lobbying for their work. What they don't say is that they are the people responsible for the poor methodologies that are being attacked and hence have a vested interest. Also because there are no other treatments isn't an excuse for using a bad treatment.

But the treatments they are pushing are ones that claim to cure that is what the PACE manuals claimed. It just shows they are pushing a 'treatment' they know how to do rather than understanding the evidence.

I think they only linked to Action for ME because AYME no longer exists. They clearly are avoiding making any attempt to understand the criticism of the approach they are pushing. Instead they seem determined to listen only to those with similar views and hence continue to harm patients. What...

I like the video. There are a few issues with the details she describes around PACE but the overall narrative is good.

They also published an article from White after the initial reanalysis of the recovery results and ignored complaints that it was inaccurate.

Not only the recovery claims but the claims in the manuals (which they seem to have removed from public view) where CBT and GET claim to be curative where as APT and SMC claim to help with symptoms and allow the body time to recover. This difference in expectation setting is one of the things...

Maybe they will eventually get concerned about researchers general ethical behaviour. I would be interesting if research funders sanctioned Bristol University because they had failed to deal with researchers who didn't get ethical approval

@TiredSam I can set what media gets included as a media link and what doesn't. I think most things are selected on the media pack but I'm quite happy to change that. I only installed it to do twitter (and it doesn't do that very well).

From what I remember of the previous framework projects they are big consortiums that need to be put together and they need the right members to get approval. I think Framework 4 needed southern European partners and FW5 needed east European partners (the new members). A consortium will include...