Search results

Maybe, when the list of trials to be looked at is decided (and we can probably identify them now) we can make sure we have threads on them, and forum members can analyse them. Probably not to feed into the process directly, but anyone involved could look at the forum comments, and it would help...

Yes, we are covering old ground on this. Of course there can be valid reasons for having subjective outcomes in a trial; having some is not a disqualifying feature of a good trial. And applying some thought to what people have measured is always a good move. I don't think anyone ever thought...

Why not? Research methodologists who deal mostly with drug interventions rather than behavioural interventions would probably understand the issues with PACE -- surely Cochrane have some. Expert patients who understand the methodological issues would understand the issues with PACE very well...

While I appreciate the honesty, that's a bit sad Hilda. It reads very much as an 'old boys' club' situation, something people who aren't 'old boys' have been criticising for a long time. It's a fine approach for choosing who to go out to dinner with, but it's sad to see it applied to something...

Thank you for the links Hilda. I have read them carefully and you are clearly aware of some of the issues. Here are my thoughts: (crossposted with Bruce's point about subjective outcomes...) The main problem with all of the BPS intervention studies is the use of subjective outcomes (answers...

I don't think anyone was suggesting that, I certainly wasn't. What I was saying is that Cochrane does not appear to be sufficiently free of bias to be able to conduct a useful review. Therefore it is riding into a process that can only have a bad outcome for all concerned. This. The...

Thanks @oldtimer, that is a good article. The lab-escape idea does look compelling. Chinese and US organisations are looking very culpable. Interesting to see the involvement of NIAID (US NIH). Plenty of blame to go around.

I just want to add to that, that this exercise review also has the potential to harm the reputations of those associated with it, including Hilda's. I'm particularly concerned that @Medfeb, a good ME/CFS advocate, might get caught in the crossfire, being expected to work a miracle with people...

Thanks @Nightsong. I can't make those images big enough to read. Personally I have found that an increase in the POTS measure (increase in HR on standing) is associated with being in PEM. That is a problem. Re the strengthening of core muscles. If I had to hypothesise a mechanism, I'd go...

I find this quite a problem, thank you for highlighting these connections Hilda. Dr Newton is certainly not the first problematic researcher to be associated with patient charities. This is partly why we find ourselves where we are, although slowly things are improving. When we had so few...

@Hilda Bastian, have you had time to read the thread on the 2011 paper by Julia Newton that I tagged you into? The link is here; the thread is not terribly long. Physical activity intensity but not sedentary activity is reduced in CFS and is associated with autonomic regulation, 2011, Newton...

What is really surprising is that, 10 years ago, Newton and her team were being surprised that fatigue wasn't correlated with physical activity. And commented that probably the FIS fatigue measurement tool wasn't up to the job. 10 years later, a team with Newton in it is surprised that FIS...

To be clear, I'm not blaming doctors. I totally agree that the health care system of 15 minute 'what is your problem, here's a quick fix' consultations isn't working well. Obesity is a big complicated problem.

I think if one did, one would probably be wrong. Maybe not everything is right in the article, but I think there are some truths. From memory, one is that doctors do not receive enough education in nutrition and weight-management, and the primary health system is not coping well with the need...

I guess the problem, from a weight control point of view at least, is that we don't live in prisoner-of-war camps. Most of us live in an environment where energy-dense foods can be delivered to our door, almost at our whim. And wherever we turn, on tv, on social media, on billboards, our...

The correlation is not causation problem The last line of this paragraph is a nice example of the 'correlation is not causation' problem that we see in nearly all BPS papers. Yes, people with multiple sclerosis who exercise regularly do report being more well than those who don't. But, people...

Sorry Hilda, could you be clearer please? Are you saying that you accept that among the ME/CFS patient experts there are some with useful technical knowledge and analytical and written skills, including those you specifically named upthread, but among all of those ME/CFS patient experts, there...

Ok, coming back to this to try again to understand the study's findings about activity levels. I found its logic quite muddled on a first read. Most of the people with ME/CFS were actually relatively active, making conclusions that people with ME/CFS need to increase habitual physical activity...

I'm trying hard to think of an analogy that might resonate with you @Hilda Bastian. The best I could come up with is a time when women did not have the vote. Suffragettes have worked hard, developing coherent arguments why women should have the vote. As a result, a committee is to consider...

@Hilda Bastian, I sorry to have to keep going on about this, I'm really tired of this and I'm sure you are too. But you still haven't explained how you came to select Kay Hallsworth. I think we've established that she expressed an interest in being on the writing team. And then, as there is...