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I think for a survey to be accurate it needs some in depth digging into what services are actually doing. If it's just a questionnaire sent to the local funding bodies, or to the clnics themselves, they will probably just tick the boxes saying they are NICE compliant, or not bother to fill them in.

That seems a pretty accurate article to me. Thanks, Hannah Sharland. I respect Sonya Chowdhury for her swift action once the problems had been pointed out, but there is clearly an underlying problem that she and the trustees need to sort out over their ongoing relationship with the Bristol clinic.

I think the point of these closed meetings is that researchers can share unpublished research and discuss it. I guess Janet Dafoe is leaking bits of it via Twitter.

I haven't been feeling well enough to sort out a coherent reply to Sonya yet, but am reading this thread, as of course AfME staff and trustees are free to do too.

Another thing I think AfME should consider is asking for recommendations of existing resources such as some of Charles Shepherd's MEA resources. Cooperation where, for example, AfME endorses and recommends specific materials by others seems sensible to me.

It could be done more informally. AfME is a forum member. They could open discussion vial social media, including here on S4ME of any of their documents or projects, and allow free flowing discussion, then post their amended version for further comment. They could also invite applicants to be in...

I agree, @Sly Saint. I think we need to stay independent and be very careful about endorsing other organisations or letting them suggest S4ME approves particular projects or materials. Our committee has agreed to support some things.

I guess people who are colour blind wouln't be given this test.

Currently crashed so not able to say much. Very pleased by this response.

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.