United Kingdom: Scotland NHS Lothian ME/CFS clinic

A

Amw66

Senior Member (Voting Rights)
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

 
Amw66 said:
I can't understand a stance against GET and support for this.
Click to expand...

If people just complain about GET, or a deconditioning model, or things like that, it's easy for them to change a few words and then carry on as before. If people want specialist services for ME/CFS in the UK at the moment, chances are it's going to look like this and it's going to be run by people like Crawley.

Here's the page, and some other related links:

http://www.sense.moonfruit.com/me-cfs-rehabilitation/4585096069

http://www.sense.moonfruit.com/me-cfs/4585077142

https://www.scot.nhs.uk/wp-content/uploads/2015/06/GoodPracticeStatement.pdf

https://apps.nhslothian.scot/refhelp/guidelines/ResourcesLinks/ME CFS pathway April 2019.pdf#search=cfs

https://apps.nhslothian.scot/refhelp/guidelines/Pages/ChronicFatigueSyndromeME.aspx#tabs-1

https://apps.nhslothian.scot/refhelp/guidelines/ResourcesLinks/ID - ME_CFS Doctors Information Sheet V4 Feb 2019.pdf#search=cfs
 
Last edited:
NHS Lothian had a representative at a seminar in Edinburgh a few years ago who did not condemn GET as " some people improved ".

The same response ( same words) as in the Scottish Government letter re GET and COVID19.

It is this that is the nub of the problem.

If this was a pharmaceutical the NNT would make the process unjustifiable.
 
Trish said:
It seems impossible to work out what the program of therapy involves.
The vagueness and 'individualised formulation' seems to leave it entirely up to individual therapists.
Click to expand...

Call me a cynic but I suspect this is deliberate.

When it's so vague I suspect it's because they don't necessarily want folk to know that no matter how "individualised" the treatment path is the goal is GET & CBT.

Some patients may have heard of that so stay away in droves. Those that don't know or hope for better will unwittingly falk into their clutches and they'll find they are herded towards their doom. Updates to their GP will attempt to get them on board if they're own gaslighting and persuasion techniques aren't enough.
 
I remember being told by a prominent psychologist that criticism of PACE was irrelevant because psychologists do not use that technique any more - it is all tailored to the individual.

I think it is perfectly right that treatment should be tailored to the individual. I always tried to do that in my clinics. But that consisted of offering the patient a range of evidence-based treatments and tackling through which suited them best for practical or other reasons.

You cannot use individualisation as the basis for the care, you have to use evidence.
 
I get very weary of this global trend to organize ‘multi-disciplinary’ teams for self-management, coping and ‘wellness’. It simply means that you will not get access to any kind of medical care, but you will be offered a smorgasbord of group sessions to learn how to cope, how to be positive, how to meditate, learn about healthy eating habits and good posture. They may even insert the ‘hollistic approach’ terminology which most certainly means no medical care, anything but that. They will teach you about ‘over-active nervous system’ (aka central sensitization or central sensitivity) and how to calm that. Then they will call this health care.

Most patients will do this kind of learning on their own, and self-management is by definition done with yourself, but seemingly we need further education, which is usually delivered at very low level. Knowing this, feel free to confirm by attending and feel free to decide where you should spend your precious energy. Hopefully these sessions are not mandatory to anything including access to disability insurance.
 
Last edited:
Milo said:
I get very weary of this global trend to organize ‘multi-disciplinary’ teams for self-management, coping and ‘wellness’. It simply means that you will not get access to any kind of medical care, but you will be offered a smorgasbord of group sessions to learn how to cope, how to be positive, how to meditate, learn about healthy eating habits and good posture. They will teach you about ‘over-active nervous system’ (aka central sensitization or central sensitivity) and how to calm that. Then they will call this health care.

Most patients will do this kind of learning on their own, and self-management is by definition done with yourself. Knowing this, feel free to confirm, and feel free to decide where you should spend your precious energy. Hopefully these sessions are not mandatory to anything including access to disability insurance.
Click to expand...
Brilliant Milo, brilliant post. Thanks.

I really wish the scientists could just zero in on what the heck is causing the exertion intolerance. Why is it taking so long?
 
Trish said:
Posts about what may be a similar service with AfME involvement in another clinic have been moved to this thread:
North Bristol NHS Trust: ME/CFS clinic
Click to expand...

another one
https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/
We combine the evidence-based approaches of graded exercise therapy (GET) and cognitive behavioural therapy (CBT), with activity (lifestyle) management. We offer a maximum of 12 appointments which may take place in a group setting or individual appointments. Therapy will be delivered by a specialist CFS Therapist. You will be expected to practice the strategies you have learnt between appointments and take an active role in your therapy.
Click to expand...

https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/

GRIP group rehabilitation programme
Pacing is used as a user-friendly term for patients but the emphasis is on supported, controlled activity management to help the patients get fitter and stronger.


The team use ‘PACE’ as an acronym to help people remember the key principles of rehabilitation:


P – Physical energy levels & symptoms


A – Activity management


C – Cognitive energy levels & impairments


E – Emotional status
Click to expand...
https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/rehabilitation/
 
Pacing is used as a user-friendly term for patients but the emphasis is on supported, controlled activity management to help the patients get fitter and stronger.

So the dishonesty is in black and white:

Pacing is used as a user-conning term for patients ...


This is the sort of stuff I could blog about on my new website...
 
Sly Saint said:
another one
https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/


https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/

GRIP group rehabilitation programme

https://www.southtees.nhs.uk/services/centre-for-clinical-infection/cfs/rehabilitation/
Click to expand...
Orwell would be genuinely impressed by this. Pacing means going faster. Hell yeah down is up and hot is cold. Everything is made-up and nothing matters, YEEEEHA!

Evidence-based medicine is a massive failure. End this dystopian nightmare.
 
You must log in or register to reply here.
Back
Top Bottom