United Kingdom: Scotland NHS Lothian ME/CFS clinic

As I said in another post, Sharpe was based at Edinburgh university when the PACE trial was started and he published the first paper on FND in collaboration with Jon Stone who is still there. His views will have infected the whole department.

I may be wrong but I seem to remember than some of the PACE data came from Lothian.
 
Amw66 said:
From Twitter tonight.
It is very much a case of be careful what you wish for. Seems to be GET through the back door via " activity management". Sleep hygiene us also a big issue.

The failure to understand what is proposed, and how this affects pwME seems to be endemic.
There is a real lack.of understanding if placebo effect and that there is no justification for it.

How many more must be harmed.

@Action for M.E. , @phil_in_bristol I can't understand a stance against GET and support for this.
Yes we need specialist services, but not thi
ETA "activity management" caused this woman's daughter to be be bound.

@PhysiosforME , perhaps you could enlighten them

Click to expand...

The tweet is no longer available
 
Amw66 said:
From Twitter tonight.
It is very much a case of be careful what you wish for. Seems to be GET through the back door via " activity management". Sleep hygiene us also a big issue.

The failure to understand what is proposed, and how this affects pwME seems to be endemic.
There is a real lack.of understanding if placebo effect and that there is no justification for it.

How many more must be harmed.

@Action for M.E. , @phil_in_bristol I can't understand a stance against GET and support for this.
Yes we need specialist services, but not thi
ETA "activity management" caused this woman's daughter to be be bound.

@PhysiosforME , perhaps you could enlighten them

Click to expand...


already on it! ;)
 
I don't trust the phrase "tailored to the individual". As usual, when words and phrases are used by the BPS crowd whatever meaning they used to have masks a new interpretation, and we are permanently playing catch-up. If a therapist decides that this individual patient needs GET, then they have offered a service tailored to the individual patient. The therapist, having applied their knowledge, skill and experience to the question, decides that the best treatment considering all the individual patient's circumstances is GET. The phrase "tailored to the individual" becomes meaningless if the individual solution the therapist offers is based on the willful blindness and delusional thinking that is the BPS paradigm. Homeopathic remedies are tailored to the individual. So what?

So excuse me for not being reassured by the phrase "tailored to the individual". I expect in too many cases the treatment will be tailored to the individual therapist and their interests or sheer ignorance.
 
Perhaps that is an impossible task, in which case it is essential that we recognise and acknowledge when the process has failed in order to ensure that the media, health service planners and, most important of all, patients are given a fair representation of the evidence base. After that, they can make up their own minds

If that is the conclusion of that Smith and Wessely paper, as it seems to be, it is not clear that the preceding argument or discussion leads naturally to it, nor what the practical implications would be.
 
Amw66 said:
Given Afme publicly confirmed that this proposed service did not have their support , and the tweet was removed, did you manage to find out anything about this?
Click to expand...
I will check with the others - it's been a hectic couple of weeks at work and I am not totally up on where we are with everything!
 
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