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For the general public, I think patients tell the most compelling stories. But I think that a lot of patients would like to hear from the researchers running the trials: Are they making a good case for me to give them my sample and data (Have they convinced this is an important study to join)...

Thanks for all the comments On the blog and the facebook page about it, there are quite a lot of people saying that they already use resting heart rate to help avoid PEM eg Important points. It's worth noting that all Snyder's health "discoveries" were checked out with clinicians (avoiding...

Love this! And I agree with the later comment that "pass it on" is key. For that reason, we need a good name for the GWAS project that people who know nothing about ME will remember and pass on. And that when you put into google will bring up the GWAS project website (so nothing too generic)...

Mike Snyder is a pioneer and I thought he gave the standout talk at Stanford this year. Stanford symposium: the potential of smartphones to better understand diseases, including ME/CFS “We think smartphones will be the most important health tool in future”, said Dr Michael Snyder at the recent...

Chris’s inaugural talk at Edinburgh as professor of , um, whatever:

My blog is now live (thanks, @Andy, for checking). Probably nothing new in it for anyone who has read this far in the thread. Bold plans for two big UK biomedical research projects November 8, 2019 Simon McGrath The ME/CFS Biomedical Partnership, led by Prof Chris Ponting and Dr Luis...

This seems important to me. The project has to go through peer review - and on average only 20% of proposals are funded - but the MRC is taking an active interest by organising a workshop to improve the research proposal. Fingers crossed. Having a huge genetic study (GWAS) and a major expansion...

The key paper, by Pendergrast, was discussed on PR in 2016 on this thread. With wise analysis here :)

Thanks, @Snow Leopard, interesting. VO2max is certainly affected by the volume of blood pumped, and also by the quantity of red blood cells (hence the effectiveness of erythropoietin in anaemia and in doping). But it must also be related to actual oxygen consumption by the body. If tissues are...

Lien 2019: some analysis and thoughts The day 2 differences for patients in lactic production, and power at the gas exchange threshold (GET), look pretty interesting – though the differences aren't huge. However, the big differences between patients and controls seen on for almost every outcome...

And for many outcomes such as fatigue, mood and pain nobody knows better than the patient the levels of fatigue, pain and mood they experience. I think it is important to respect patients' ability to describe their own experience. added (I agree that the SF36 PF has alternatives) This is...

It’s also worth considering the MID in relation to the smallest possible improvement for a patient on the actual scale. For the CFQ, this is one point. So the PACE threshold of two points effectively means “a clinically useful improvement is anything bigger than the smallest possible improvement...

Because the PACE trial is very large, it’s quite easy for small differences to achieve statistical significance. Which is why they used a “clinically useful difference“ threshold for the primary outcomes, of 0.5 SD effect size. This is a generic measure and so it’s reasonable to apply it to...

Certainly the SF36 SD problem has been well documented. I wasn't sure that CFQ SD had been shown to be "non-normal" (I think it's a pretty high threshold to reach, isn't the null hypothesis that every distribution is normal?).

More brilliant analysis, @Michiel Tack ,thank you Using Cochrane fatigue effect size, PACE trial CBT was ineffective. I think this is very important because it undermines the PACE trial claim of clinical effectiveness for CBT. They chose the widely used criterion for a clinically useful...

You are right that Cochrane has a very poor track record of actually listening to patients and doing anything differently. And I suspect the new approach coudl easily end up being effectively a whitewash. Yet the move to involve patients has potential, but will only come to anything useful if...

I think this is an excellent idea, @MSEsperanza , thank you. If the desired outcome is to actually get the editor-in-chief to agree, as opposed to make the point about the failures of the revised review, It might be worth slightly modifying the pitch. We are concerned that the revised review...

Re Chalder fatigue scale and the ceiling effect: The Chalder Fatigue Scale scoring deosn't quite work like that. It is a bit weird, see below. "If you have been feeling tired for a long while, then compare yourself to how you felt when you were last well. [score each of 11 items] Less...

The minimum score on shoulder is effectively 11, making it a 23 point scale. 3.4 point difference strikes me as credible for 0.5 SD, given that 0.5 SD isn't actually a very big difference (see the graph in my previous post). You're right that a ceiling effect would constrain the baseline...

Thanks very much, @Michiel Tack. Standard mean differences/minimal important differences I don't think there is a real issue with describing the effect on fatigue as measured by the Chalder Fatigue Scale as "moderate" , or the 3.4 point reduction as a "minimal important difference". The key...