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About the diagnostic test/tool question: Both Dr Myhill's initial response (see @Sarah94 ‘s message #25 above) and this response by Dr McLaren-Howard stress that @Snowflake already pointed out that Dr Myhill seems to suggest otherwise in her book (#31 this thread). Here are quotes from...

I see it now! Sorry about that. I've put an edit in my original post so hopefully people will see that. If I hadn't been so brainfogged I would have noticed the difference in wording.

The results of this one-question survey could be used similarly to how Action for ME’s 2011 survey was used by White et al in their 2017 response to Geraghty’s 2016 commentary (see the Journal of Health Psychology’s special issue on the PACE trial for both): Hazel O’ Dowd was a co-author of...

I found the tables and figures in this paper helpful - they show what happens on tilt testing with various types of orthostatic intolerance (generally, not in ME): https://onlinelibrary.wiley.com/doi/pdf/10.1111/joim.12021 For what it's worth, my tilt test results would indicate delayed...

Overall, I'm glad that researchers are starting to look at severe and very severe ME. There's something a bit bull-in-a-china-shop about these early attempts. I have severe, not very severe, ME, and this would be astronomically beyond what I can do. It would completely rule me out of...

Hi Jonathan, So sorry to hear that your daughter’s health has deteriorated and that you’re facing into a rough summer (and beyond). It’s great that you have advance notice that this is happening and that you’re mindful of how badly this will affect Hannah. I have severe ME and noise...

Yes, exactly! I think these kinds of discussions are helpful - I definitely sharpened up on what Goudsmit and Jason did and did not say in various publications as a result. And it's interesting to see everyone's comments. You never know, it could be helpful for the NICE patient...

I think there are two different things getting conflated here – one is resting excessively and thus doing too little (as you might if following the 70% rule) and the other is resting pre-emptively. The way you’ve defined pre-emptive rest there is not how the term is used in the literature...

@Invisible Woman and @Nellie Pledge have explained the problem very well. @Invisible Woman needed to work through feelings of boredom to get the rest she needed, and she needed long, flexible periods of rest (sounds like both pre-emptive and recuperative but correct me if I’m wrong there...

I know what pre-emptive rest is. My point is that the advice to limit “these periods” to 30mins is (a) debatable and (b) easily overinterpreted, which could lead to a recommendation in the NICE guidelines that rest periods generally should be limited to 30 minutes. (The advice being originally...

I think you make a good point in your opening post, @Michiel Tack , about the need to define pacing in the NICE guidelines so that it is not misunderstood to be GET/GAT-lite. I have some reservations about using the paper by Goudsmit, Nijs, Jason and Wallman to do that, though. From the third...

Wanted to step in here to say that my personal experience with Dr William Weir was that he suggested supplements that were well within what I would consider mainstream use. For me, he suggested: Testing vitamin D levels and supplementing if low – seems entirely reasonable for a housebound...

Yes, I think this study is a helpful snapshot but to really see how people's illness changes over time, you've got to follow them. At three different timepoints in my illness I would have been in three different categories, but I now know which category I really belong in. And it isn't the one...

I'm not sure I understand your first question - on average, the participants had an illness duration of 7ish years (it varied between groups, probably not enough to matter), they were in their 40s and had become ill in their mid-late 30s. They didn't follow them over time, they just asked them...

About the progressive/course of illness question, Stoothoff et al’s 2017 paper (Leonard Jason’s team) is helpful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5710812/ They got 541 ME/CFS patients from DePaul US, Newcastle UK and Norway to rate their illness progression and then classified...

Unhelpful illness beliefs perhaps?

So beautiful @Robert 1973 . Particularly loved your and Kaeley's vocals. The combination with images from people's rooms and quotes is very powerful. Congrats to all. This brought tears out of my eyes! :emoji_sob:

I think even in my early, most naive days if I’d been asked to parade around with an artificially filled grocery bag, then watch a video of myself walking with said bag and say how I felt, I would have been hard pressed to remain polite. What am I thinking? Eh, I’m thinking you’re a… What are...

Me too. I'm slower to swallow apparently simple solutions for any health issue. This endocrinologist always highlights that obesity and particularly attempts to reverse it are more complex than we like to think...

Thanks for taking the time to do that, @Lucibee . I think that's 'cos it's wobbly, like all good jelly! More seriously, I think it tells us a lot. If we assume that there is some worth in the Clinical Global Impression scale, then we'd expect a good outcome measure to have some semblance of...