ME/CFS services in the United Kingdom

Sounds a bit like Lord High Everything Else (Pooh-Bah from the Mikado).
A one woman multidisciplinary team no less.

 

Such services may be otherwise available. Caveat emptor.

 

What has happened here? Is Dr Chaudhuri no longer involved with ME and CFS?
Is it a Commissioning decision or something else?

 

This is my local clinic (though have been on the waiting list for >18 months) and I'd heard rumours of the closure at the weekend from some who have been under the care of the OT, but hadn't seen anything confirmed. Sounds like folks are being referred to rheumatology at UCLH as an alternative.

 

I had a private appointment with him earlier this year and whilst he confirmed the prior diagnosis of ME, he also told me that there was a deconditioning theory with ME and that I should be aiming to walk 30 mins, twice a day. I stopped listening at that point and thought, I want my money back. So, whatever the reason, maybe patients in East London/Essex are better off without him and this service.

 

This news of his approach is extremely worrying bearing in mind the highish profile of the MEA Purple book..... and that DR C also was very keen to b e involved with the NICE process and committee....

 

Err, yes, I was slightly concerned when I saw how involved AC was in the Purple Book after I had bought it..

 

job ad
Rehabilitation and Exercise Practitioner
Employer:
Nottingham CityCare Partnership CIC
Department:
Mosaic
Location:
Nottingham

https://www.jobs.nhs.uk/xi/vacancy/916908493

 

job ad
NHS Royal Cornwall Hospitals

Clinical/Counselling Psychologist/Psychotherapist - Chronic Fatigue Syndrome/ME Service

https://www.healthjobsuk.com/job/UK...igue_Syndrome_ME_Post_Covid_Syndrome-v3773823

eta: note also for long covid patients

 

Surely the workload for this job will be non existent?

CFS/ME doesn't exist (since the new guidelines) and people with covid 19 are either supposed to be isolating, or if more serious, in hospital.

'Have experienced covid-19'? but there is no name for this? Baring in mind that at some point this will be close to 100% of the population, it's a teeny bit vague as a selection criteria.

So, the NHS is attempting to recruit people to perform treatments that don't work (according to NICE) for conditions that don't exist (according to NICE).

Doesn't bode well.....

 

The key phrase is "and post covid pathway" which will be as defined by the National guidance for post-COVID syndrome assessment clinics along with
COVID-19 rapid guideline: managing the long-term effects of COVID-19


https://www.england.nhs.uk/coronavi...e-for-post-covid-syndrome-assessment-clinics/

https://www.nice.org.uk/guidance/ng188

Intensification of lockdown presumably will mean most of the work is done by phone or internet. Though unless there's an inhouse candidate getting someone in post by the time the funding runs out in April seems unlikely. Maybe this is a paper exercise and the job description has been written for an individual already employed by the Trust.

 

Given the new guidelines IMO they should not be trying to recruit in order to continue/increase using the approach outlined in the job description;

https://www.healthjobsuk.com/documents?vdoc=5614996

IMO this is appalling.

It was appalling before the new guidelines, but doubly so now.

 

https://www.royalcornwall.nhs.uk/services/chronic-fatigue-syndrome-cfsme/

The only thing these clinics seem to be taking from the new NICE ME/CFS guidelines is to change a few bits of terminology.

The photo shows what they consider ME to be and are all about very clearly.

Does anyone have any experience of this clinic? (I'm interested as I may end up moving to Cornwall as it's on my list of places where I'm looking for a mutual exchange to a social housing bungalow - and my place of birth!).

 

I think it shows the difficulty of removing the grip of the existing psych based services - as far as I can see there's nothing in that job spec that contradicts the letter of the 2021 Guideline, even if the psych focus is against the spirit of the GL. It maybe also indicate just how much of a Faustian pact having a linkage between ME/CFS and post/long COVID may turn out to be.

 

CBT service
"
We’re Oxford CBT. Established in 2012, we provide a service that assesses people quickly and provides high quality, evidence-based treatments and courses that are designed to improve the quality of life.

We’re not only in Oxford.
"
"Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME) Adults / Children
CFS and ME affect people of all ages leading to fatigue, muscle and joints pain, poor sleep, and poor concentration among many other issues. Although they affect some people more than others, it can have a pronounced impact on your life, from employment to friendships, social life to family life. Although there is no one accepted cure, we can offer, support and advice as to how best mitigate the effects. For more information and details of how we can help..."

https://www.oxfordcbt.co.uk/cbt-therapy/

 

https://www.oxfordcbt.co.uk/our-fees/

Therapists Adult Assessment Child Assessment + Report Child Session Online Therapy
& Treatment Session (90 mins) (50 mins) (50 mins)
50 minutes
CBT Therapy £ 120 £ 250 £ 120 £120

CBT Therapy
(Trainee) £75 £190 £95 £75

Clinical Director £150 £ 250 £150 £150


– – –

 

Just seen someone on a Facebook group saying they have just been diagnosed and been told by their diagnosing doctor that they should push themselves and allow others to 'bully' them into doing more/getting out of bed.

Looks like things still have such a long way to go!

Folks on the group have advised to do her own research and not listen to that claptrap.