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I think things like Vitamin D should be looked at for all house bound patients as should other vitamins where people struggle with diet. When my daughter was struggling to eat a dietitian was helpful in terms of supplements as well as general advice.

I get the impression there is no real evidence base. I've seen PACE results be quoted by them (but without attribution). I think they do claim an evidence base but never seem to point to anything anyone would think was reliable but rather they seem to believe that if they chant 'evidence based...

I think there is an important point here that I suspect comes from how multidisciplinary teams work in the NHS. To me you need different specialist to do the stuff they do. For example the OTs to look at home adaptations to help with disability. So to include them(and social workers etc) I would...

Was that Crawley's clinic or the adult one?

The answer for me is they are out of curiosity as to how he can defend his actions.

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.