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Landmark is not a clinician and is clearly clueless about ME/CFS and PEM.

It looks like this is just for clinicians and is a collaboration between University of Utah staff and Bateman Horne Center. ABOUT PROJECT ECHO Salt Lake City, UT

I don't think that's true for White and Sharpe. If they are tenured professors of psychiatry, their jobs don't rely one one particular treatment trial outcome. If one fails they just move on to another bit of research and go on treating patients and teaching students. Even the example of...

I think Landmark has a COI because her income depends on the outcome of the trial showing the treatment works, so that introduces a potential for bias in her study design and choice of outcome measures, and interpretation of the results. Similarly White and Sharpe have a COI related to their...

I agree with all of you. The whole concept of baselines is nonsense anyway, since they are unknown and shifting. Substituting one activity you want to do instead of one you don't like doing is a nice idea in theory, but complete fantasy for those of us on the edge of coping just with what we...

I haven't read the PhD. I am very concerned if a health psychologist doesn't say clearly that exercise refers, in the case of ME/CFS, to all physical and cognitive exertion. It's not just going for a walk or to the gym. I think BACME particularly try to get around the problem of not recommending...

I googled SARMS and found this: Selective Androgen Receptor Modulators (SARMs) - Current Knowledge and Clinical Applications

Does anyone have a non-paywalled link to the article?

The Wikipedia article about SIBO looks helpful in deciding which treatment to try: https://en.wikipedia.org/wiki/Small_intestinal_bacterial_overgrowth

Sadly that's not what the current BACME guide for therapists says. It still involves goal setting and increased activity, modified to more flexible pacing up instead of GET with fixed increments. They pay lip service to being NICE compliant, but don't really get it about supportive CBT. If it is...

It's very like the BACME guide for therapists - start with pseudo explainations for symptoms, then work through some lifestyle and psychological changes.

I tried skim reading this article. What a lot of words. The bottom line seemed to me to be the aim is to get people with persistent symptoms like fatigue pain and digestive issues out of the GP's office and make them responsible for their own medical care by working through an online program on...

I think that's an important point. Wearables can be very helpful for some pwME in the early stages where we are learning how to adjust our activities to reduce the chances of getting PEM, or when our health or circumstances change and we have to adjust. But it's a servant, not a master. We need...

I think there should be specialist nurses as the main point of contact for patients, providing a range of ways to communicate including online, phone and home visits. That way even the sickest patients and their carers should be able to get quick access to someone knowledgable who works directly...

Oh dear. It's so sad to see the flawed CBT/GET trials being 'reviewed' and recommended all over again so another nation's pwME will be harmed. This highlights the necessity for retraction of PACE even many years after publication, and how badly let down we are by medical journals publishing junk.

This is getting ridiculous. Since when is a social media survey the basis for 'evidence based' treatment? The world has gone mad.

That sounds like torture.

Ugh, yes, kids would be embarrassed to make something so bad as a school project. It's badly made, patronising and belittling of serious illness. I think it demonstrates what little value there is in the psychology/physio provision for kids with ME/CFS.

A senior politician's child, spouse or sibling getting very severe ME/CFS. Nobody will take any action unless it becomes totally real to them.

no adherence? I assume they intended to use the double negative: no non-adherence. So all those endless variations on exercise interventions for FM are useless. The emperor has no clothes.