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Just a side note on this point, while it is often described this way - as something they planned to do and then "dropped" - the trial management group meeting minutes tell a different story. They planned for actigraphy as a predictor, and then considered making actigraphy not just a predictor...

Great puns, everyone! I learned/played tennis as a kid and I reckon it's about the worst sport to try if you have anything resembling ME/CFS, particularly if orthostatic intolerance is a feature. There's loads of standing around, waiting while your blood happily sails down into your feet...

More from the MEA's 2010 survey, this time about acceptability (full survey here https://meassociation.org.uk/wp-content/uploads/MEA-Management-Survey-2010.pdf).

This is from the MEA's 2010 survey (full survey here https://meassociation.org.uk/wp-content/uploads/MEA-Management-Survey-2010.pdf). The far right column shows the percentage who say their symptoms were worse after various therapies. The LP is in the middle of the list at 21% worse, far below...

Agree. We know that spontaneous deterioration, or deterioration for reasons other than LP, can happen in ME/CFS - for example, at 12 weeks, 25% of people in the control group of the GETSET trial reported physical function scores 10 or more points lower than their baseline score. So something...

Meant to also say, I think the general public does not like being made a fool of (eg by being made jump around on a piece of paper), and does not like being ripped off (eg by paying £1000 for the pleasure, and not getting better), and those two things came across in the report.

It's funny you say that as I am not known for my optimism! But yes, I do think plenty of people are capable of listening to a programme and getting the message. I don't think much, if any, critical thinking is required in this case - the reporter has done that job and presented it in such a...

I think it's important that the BBC critiques the LP and am glad this journalist did so. When you have NHS clinicians on the LP bandwagon, critique is essential. I think most listeners will have understood the message - that this is an exploitative, nonsensical, ridiculously expensive thing to...

Interesting how AfME interpreted that table, especially the fifth bullet point: It looks, to me, like (some at) AfME had their own priorities.

Here's one of those surveys, published in the October 2002 edition of InterAction (issue 42), after the Medical Research Council asked for research priorities from patient organisations, following the CFS/ME Working Group report to the CMO published in Jan 2002: What patients got was PACE.

I’ve always thought the timing of the PACE protocol changes need to be seen in the context of the earlier-finishing FINE trial. The protocols for the FINE and PACE trials had the same criterion for improvement on the SF36PF scale (having agreed to swap protocols in a May 2003 TMG meeting). The...

Exactly. The CFS/ME Working Group began their work in 1998, culminating in their report to the CMO published in January 2002. The first minuted PACE trial meeting was in June 2002, and those minutes reference earlier meetings. In July 2004, the MEA publishes this: ME Association. MEA calls...

The working group that produced the 2002 report to the Chief Medical Officer included Shepherd, Pheby as well as Chalder, Chris Clark (AfME), White. Names we'd know like Anne Macintyre, Speight and Weir were also involved. So these quotes might give an idea of what early objections to the PACE...

My guess is that it was about negative patient feedback on exercise and CBT, and possibly about physical vs psychological, but I haven't found the relevant documents.

I don't know, perhaps people like @Dolphin would recall? Certainly the earliest document in the Trial Management Group meeting minutes - from June 2002 - references previous meetings and a protocol. So there were drafts pre- June 2002. At a meeting in September 2003, the primary outcome...

Always reminds me of this:

For Walitt it's both "conscious and unconscious". He was criticizing the terms effort allocation and effort-based decision-making for not including the unconscious part, and saying that they went with "preference" instead because that would include the unconscious part. Nath, on the other...

I completely agree with your overall point, that objective primary outcome measures would have given more reliable results. But the published protocol paper, published in 2007, long after they started planning and indeed doing the trial, does not list actigraphy as an outcome measure, only as a...

Yes, the birds' preference makes sense. They don't seem to agree that effort preference has to be conscious:

The hard task is coming up with the model you have proposed, that takes it right from the point of infection and explains why patients might feel how they feel, and how the sex differences that have been reported in the literature might make sense, and how to try to identify a treatment that...