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.

 

The tweet is no longer available

 

Fascinating. Now they will operate in the shadows...

 

There's a cardiopulmonary doctor in London who's an expert in exercise physiology. I've tweeted him some stuff and he retweeted Mark Guthridge thread on exercise physiology. He's aware ME could be a consequence of LongCovid.

 

Chris Ponting's GWAS study might provide some clues - yes it takes too long---.

 

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.

 

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?

 

Posting this link here , but can be moved.Apologies, I am in a rush for an appointment .

Wessley ' s role in the CFS / ME debacle in Scotland, which seems to have had an impact

Probably similar to come re NICE


https://jnnp.bmj.com/content/85/2/214

 

see also
https://www.actionforme.org.uk/uploads/managing-me-a-guide-for-gps-in-scotland.pdf

(written in 2015)

 

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.

 

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!

 

Thank you.
ME Action are looking into this too.

The weird thing is that if it is historic , why would it be teeeted now ?

 

It's been ongoing for years
ME Association complacency and A4ME complicity ?

Jon Stone, Son of Sharpe is prefixing many syndromes with "functional"

https://pn.bmj.com/content/9/3/179

 

It is like a giant cartoon mouth swallowing all of medicine.