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I think we're agreeing here (though no need to nail it down in a plan, I think we'd agree!) What my lengthy post did not say, was that I do not like at all that the new NICE guideline allows therapists to keep delivering the same things in roughly the same way. But it does. And that's what...

Because the plan the doctor or therapists have could be daft. For instance, if the physio is suggesting starting sitting out for 10 minutes 3 times a day and the person is currently bedbound and thinks they’ll faint or crash if they do this, they would not agree, and they’d suggest something a...

Any health professional could ask any of these questions in an informal conversation, but they could not record those answers on a SCOFF sheet. Would be completely unethical. I think many patients are well aware that they have to be on their guard at all times - it's a kind of "Anything you...

And maybe you are. If people who have gone through this get access to their medical records afterwards, they might be able to see if (a) the SCOFF was done, (b) score raised because of their ME/CFS and (c) if undue weight was placed on it (eg if it keeps being mentioned as supporting an eating...

Yes @JemPD I was looking at the SCOFF in that regard too. I'd answer it...carefully. As with all questionnaires, what matters is who interprets the answers, and whether the person/a carer is able to give full answers. And the SCOFF is a screen, not diagnostic. In the right hands, it will...

No difference, just as dodgy. To me, Vitality 360 sounds like a professional version of the Optimum Health Clinic. Less dodgy in some ways – you get professionals who are actually qualified to work with sick people - and as dodgy or more dodgy in others. Most of Vitality 360’s testimonials are...

It is the "When to suspect an eating disorder" part - I had to truncate because the nutrition section is long and you can't quote more than 10% of a document because of copyright. I've added...to that part of my post to clarify that. The nutrition section starts on p.23. The subsection...

I agree with @JemPD and @Dolphin. I have such respect and gratitude for Dr Shepherd. Occasional quibbles about an MEA stance or action won't change that.

Not a fan of this scattergun hit piece. Regarding the bit on Luscombe - a dietitian: Huh? A dietitian has absolutely nothing to do with whether or not somebody is fit to work. They couldn't influence such a decision if they tried. This is what Sharland says about the BACME document on...

I had the same impression, that there has been an uptick in the use of the term "rehabilitation" to refer to GET/CBT for ME/CFS, but it's always been there. Wessely et al start their 1989 paper with: The FINE trial protocol from 2006 also describes their GET-CBT-"education" combo intervention...

You made me snort!

Just highlighting an edit to my post above, so that anyone who read my error will also see the correction: Edited to correct the lengths of easy and hard tasks to 7s and 21 seconds respectively. Which makes it worse, right? So the corrected post reads:

So they looked at fatigue according to trial number. But easy trials were 7 seconds long and hard trials were 21 seconds long, and we know that pwME chose fewer hard trials/more easy trials. If fatigue is measured by trial number, then pwME would have been measured earlier (timewise) than...

What a clearly-written post. Assuming the analyses are appropriate (not something I can judge), I think you're right, this will be the heart of the response. Great call on going back and checking. Agree, I think they're worth a look and a mention. We can't assume that participants were...

After about 7 pages of discussion of the EEfRT task, I tried to summarise what we as a group had figured out so far by pulling out key observations. Hope this will help. Use of EEfRT in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al Edit: The authors of the NIH study have...

Oh that wasn't what I intended! What I was pondering was whether a study could be done that would control for diagnostic preferences, by not allowing the assessor to know whether the participant had a diagnosis of ME/CFS or EDS, and getting them to just work through a carefully honed checklist...

I don't know if anyone has sent anything to the authors. I have not. My understanding is that others on this thread are working on a response/responses.

Agree on both counts. I haven't seen a methodologically sound study that suggests a link between ME/CFS and either hypermobility or EDS, however either is defined. I think it's also possible that physicians are more likely to diagnose EDS when someone's ME/CFS is severe. And/or that people...

In the teensy NIH study (Walitt et al. 2024), there was no difference in Beighton scores between pwME and healthy volunteers. It’s in Supplementary Data file 5: Characteristic HV (n=21) ME/CFS (n=17) p-value Beighton Score [mean (SD)] 0.6 (1.0)...

I would interpret that as plain old orthostatic intolerance, with the hunger signal you're getting probably your body's way of saying, "Give me fluids! Give me salt!" to rectify it. So more of a dehydration signal than a low blood sugar signal. Could absolutely come along with feeling hungry...