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Agreed most of these clinics only have OTs and physios. I think it looks like they would be handling people with chronic fatigue in the proposed structure. Which is OK if the don't have PEM then working on activity may be appropriate. But yes a few questions are begged.

The whole set up is flawed isn't it. It is never going to be an easy thing to get right and no doubt if left to GP advice there would still be a lot of issues especially for ME patients and a total lottery where you could get people treated properly, or GPs being too strict or too lax. I don't...

Seemed to be some work done on a review of existing NHS service provided in east of England and a proposed upgrade which actually includes involvement of a Dr/Consultant for ME patients. This is the exception in those clinics currently but could be a significant step up in many areas and mean...

I think the bed rest or at least stop work altogether for 6 months may be right in some circumstances. If the person has had a very bad viral infection and is ill for a few weeks. I haven't to my knowledge had glandular fever. I had a nasty bout of chicken pox but I don't remember having...

I decided to order the book by the way it is only £5 and I thought maybe if it is any good I can give it to my GP after I've read it and ask her to share it round the surgery which was an idea from this thread.

Sorry @Esther12 youve stumped me with SETI?

@Trish yes Facebook does my head in but there are some who seem hooked on it. It definitely is just about whatever the last couple of posts were about unless the page owner keeps something pinned everything becomes chip paper. It is quite good for the questions like I have this symptom or I've...

Not read the book had a look at the Facebook page it seems to be picking up people who are a mix of people who hang out on Facebook including some more long standing patients but some pretty new ones as well. Some good advice from the Doc and more experienced patients to the new folks and most...

Which would be difficult as they aren't a proper membership organisation so they control who joins their board

Colin Barton perhaps? He often posts pro AFME stuff I remember there was a lot of comments on their Facebook at that time arguing for and against. Didn't pick up on anything that seemed abusive, as you say definitely unpleasant tho I think AFME will increasingly regret they didn't sign that...

What did the abuse involve?

Exactly what NICE should be saying in an interim advice until the guidance is replaced.

Picked up from FB The event is being recorded as the screening room is too small and they have arranged to have it live streamed to a second room. I guess anyone who is going would need to get there early in case it is first come first served for getting in to the main screening room. Anyone...

Thanks for the offer but I've got a friend bringing some back from her holiday in the USA.

Event info updated Patients on Q&A are both psychology students at Bath Annabelle Fitch doing an MSc Jack Waterhouse doing a PhD

Appropriate place for this paper then ;)

As a pediatrician what is EC doing involved on adult research. She says Adult and pediatric ME are different doesn't she Journal of Psychosomatic Research - says it all

No UK I did a French degree

So the follow up question should be Can the DoH explain what process is in place to ensure that CCGs are meeting the NICE standards for care for people with ME/CFS including access to specialists.