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Thanks as ever David. It's good to draw together Miller's infamous historical and current association with the BPS cabal. I think that Guardian article is deeply insensitive to pwME, their families, and those mourning loved ones. I hate seeing Maeve's image at the top of such a travesty of the...

I have done a quick skim read and can see a lot of thought and work has gone into this article and some useful points are made. I have some concerns. If I'm misinterpreting the article please say so, I admit I haven't read every word. The neuroimaging part is over my head, for example. I would...

It's good to hear you are able to eat again. If it's feasible for you, a home visit from a physiotherapist may help, as they will be able to assess your specific needs and recommend exercises/movements to help. If I were trying to deal with this on my own I think I would concentrate on lying...

That article by Alastair Miller is inaccurate, deeply inappropriate in these circumstances and insulting to pwME. He should be ashamed of himself. There is NO evidence to support this.

I'm fine with judicious use of swearing in a blog. There is only one swear word in the whole article and it seems to me to be wholly justified and I find helpful emotionally, as it expresses David's solidarity with all of us in this dire situation. And I'm an elderly middle class woman who some...

@dave30th An excellent article, thank you. A misspelling of Maeve's name in the paragraph that begins: The inquiry is designed to answer that question.

Thanks for the link. I think if you want to read a summary of the first week at the inquest, this is probably the best article. It places Maeve's own words at the heart of the article and raises all the key points we have been discussing really clearly.

Can someone post a link to an archived version.

Do you mean the ones in the media articles or the ones on this thread? I think we need to be careful either way, as people are inevitably selectively quoting, quoting out of context and may accidentally misquote, and I think if you want to use material on this thread you'll need to get the...

Blimey this is bad.

Sadly that's sort of what the 2007 NICE guideline recommended at the time, but they should have used their observation and learned rapidly that it makes pwME worse, especially in such a severe situation.

Even that is insufficient for detecting PEM in my opinion, as it doesn't mention delayed effect, and doesn't distinguish between fatiguability/exertion intolerance that happens immediately, in my case to some extent during and after all physical activity, and the more dramatic delayed crash that...

Hi Nightsong, thank you very much for all your reporting. Please put your health first. There are others listening who can provide feedback and your health is more important.

Basing the study of a disease on 13 people who recovered, and not including people who have not recovered is bound to give a false perspective on cause and effect, especially in the hands of people with a preconceived notion of what ME/CFS is. This stuff is so harmful. Have they no idea that...

"...a gastroenterologist and intestinal failure expert" I assume it means intestinal failure.

Split from previous post which I added to. The old 2007 guideline, which would have been current at the time of Maeve's hospital stays, mentions dietetics as a possible specialism to be involved in care for pw severe ME. It also recommends an activity program on the principles of CBT/GET. I...

I've just checked. In the section on Severe ME: https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#care-for-people-with-severe-or-very-severe-mecfs see my next post for 2007 guideline

Or perhaps Walitt is demonstrating his 'fear avoidance' and 'effort preference' - avoiding confrontation, but still really believing he's right.

So why did they place it as the central hypothesis in the published paper. If he really think that, he should withdraw the paper.

I hope clinicians from the hospital who don't believe ME/CFS is real, or think it's psychosomatic will be made to explain the evidence on which they base their belief and their recommendations.