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One of the biggest barriers, I think, is time. Asking pwME to contribute meaningfully to discussion and decision making in rapid real time meetings will preclude many. Group emailing is inefficient. I think something like a forum where people can contribute to an ongoing discussion as and when...

Thanks for posting the reply, @Andy. Yes I received the reply by email today. And many thanks to AfME and Sonya Chowdhury for taking concerns from us and others seriously and acting quickly.

I'm sorry you and your family suffered that treatment, Arnie Pye. According to this article the Liverpool Care Pathway was abolished in 2013, largely it seems because they realised depriving dying people of fluids was cruel...

I have looked at the first couple of pages of the survey. It's 8 pages with several questions on the pages I looked at. There are open ended questions which I might answer in a sentence or 2, or, if I have the energy, it would be possible to say a lot. This is going to take some thinking about.

@Joan Crawford, I have quoted your post from another thread.

Thread here: UK: British Psychological Society survey on their planned new guidance on ME/CFS

I'll start a new thread on this. I'm sure UK members will want to be alerted to it.

Thanks Adam.

Don't think I've seen nadir used as a verb before.

What was the newsnight piece?

Last day for registration today.

@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.