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@Matth, can you tell us more about what your interest is in this protocol? Are you trying it yourself, or interested in discussing some aspect of the scientific or clinical justifications Leisk makes for it? When we heard about it from Leisk a few years ago, he was persuading some very sick...

Given that it seems to be being funded by the drugs industry I think it's highly unlikely ME/CFS will be included. There's no drug for them to trial that will be profitable for the drug companies involved, I think.

Some posts have been moved to: Care and Support Plan template free to download, Action for ME

The data is from the UK Biobank, not the UK ME/CFS biobank. I hope the samples from the UK ME/CFS biobank will be tested to see if the finding it replicated, as that's a much more carefully diagnosed cohort.

I'm allowing myself to be a little bit excited by this. I hope Ponting's team and others will work on replication, and also see if there's any connection with the DecodeME genetic data.

Thank you for sharing your experience, @JellyBabyKid. I wonder whether it would be better for clinical psychologists to learn a whole range of strategies that help some people and to use their wisdom, experience, training and common sense to decide with their client which strategies they will...

But surely that doesn't happen in other diseases. No matter how likely someone is to die soon, they should stlll be provided with nutrition and hydration if they want it. I think of my friend with motor neurone disease who died a few years ago. The local arrangement for people with MND was for...

What is DBT?

I think one reason they found it hard to recruit sufficient ME/CFS patients was their insistence of a diagnosed infectious trigger, and less than 5 years illness duration. Maybe that applied for PTLDS too.

I have received the following from AfME: I can't help contrasting the prompt acknowledgement and clear document outlining their procedures with the opaque and inordinately slow procedures of Cochrane.

I have added it.

I think energy management is an OK term mainly because it's a contrast to treatment, which was the old appoach. Nor is it rehabilitation, reenablement, an intervention etc. Management makes it clear it's not expected to lead to improvement, it's about giving the pwME information and support to...

Sadly there was one outlier, in the offensively inappropriate Observer/Guardian article by Alastair Miller, written about by David Tuller Article l Thread

My experience of CBT was similarly unhelpful. The eagerness to tell people they are thinking wrong things and should think other allegedly more rational things is superficial, likely to be short lived, and potentially harmful.

Thanks again everyone, I've got over it. You know how we often think afterwards of something we wish we'd said in a difficult situation. I thought when I woke up this morning that I would have liked to say: "Thank you so much, Professor Greenhalgh, for providing me with a new experience to...

I think there is a huge problem with trying to make analogies between computers and living cells and organisms. There must be many orders of magnitude greater complexity in the molecular, organelle, cell, tissue, organ, organism interactions in living organisms than in computers. One thing I...

But haemoglobin is inside red blood cells which in turn are inside capillaries. There is no way I can see that haemoglobin has meaningful proximity to the muscle cell wall for such an active removal process. As far as I can see the 'demand' comes in the form of simple osmosis, ie diffusion...

PEM involves, as Jo says, significant increase in symptoms. It also includes significant reduction in the ability to function. If you imagine the feeling when you have a nasty bout of influenza and feel to ill and weak to get out of bed, that's how my PEM affects me. I have no idea whether...

I have been looking for relevant articles to learn more about the myoglobin and oxygen getting from blood into cells. So far I've found these, both from the NIH library: Biochemistry, Myoglobin Trey Vanek; Arpan Kohli. Author Information and Affiliations Last Update: July 17, 2023. This makes...

Direct link to the article. https://www.theguardian.com/wellness/2024/apr/30/cbt-cognitive-behavioral-therapy-ocd