ME/CFS services in the United Kingdom

I notice the list of training for the retiring OT included a brand of psychotherapy, and coaching and NLP. Which sounds awfully like quackery verging on LP.
I noticed someone employed by my local clinic is listed as doing mindfulness and NLP. The quacks are creeping in through the cracks.
 
Andy said:
Closure of the ME/CFS specialist service at Queens Hospital Romford, Essex

"We have just received some disappointing information from the ME/CFS specialist service at Queens Hospital, Romford, Essex:

“The specialist myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) service from Neurology is closing and appointments to newly referred patients are no longer being offered.

“As background information, Amelia Goldsmith-Lister, Highly Specialist Occupational Therapist, is retiring next year. We have closed the clinic to new referrals although we will be offering follow up appointments until March 2022, after which the service will close completely.” "

https://meassociation.org.uk/2021/1...ist-service-at-queens-hospital-romford-essex/
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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.
 
Suffolkres said:
What has happened here? Is Dr Chaudhuri no longer involved with ME and CFS?
Is it a Commissioning decision or something else?
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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.
 
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Fainbrog said:
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 decision, maybe patients in East London/Essex are better off without him and this service.
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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....
 
job ad
Rehabilitation and Exercise Practitioner
Employer:
Nottingham CityCare Partnership CIC
Department:
Mosaic
Location:
Nottingham

We are excited to be able to offer a full-time or part time positions for a Rehabilitation and Exercise Practitioner (REP) within our MOSAIC (Musculoskeletal Orthopaedic Spinal pain And Integrated Chronic fatigue syndrome) team. MOSAIC is a large, friendly and innovative team of physiotherapists, occupational therapists, rehabilitation exercise practitioners, pain practitioners, clinical pharmacists and pain consultants.
Click to expand...
https://www.jobs.nhs.uk/xi/vacancy/916908493
 
job ad
NHS Royal Cornwall Hospitals

Clinical/Counselling Psychologist/Psychotherapist - Chronic Fatigue Syndrome/ME Service
An exciting opportunity has arisen for a highly motivated, experienced, committed and flexible clinical/counselling psychologist or psychotherapist to work within the Chronic Fatigue Syndrome (CFS/ME) Service which is a multi-disciplinary service based at Royal Cornwall Hospital, Truro and offering a county-wide service. In addition to the CFS/ME core service funding has recently been allocated from NHS England on a temporary basis to develop a multi-disciplinary team (MDT) to offer assessment in an integrated pathway for people who have experienced Covid-19. The MDT consists of the following disciplines Clinical/Counselling Psychology, Specialist Medicine, Rehabilitation, Respiratory Physiotherapy, Dietetics, Specialist Occupational Therapy, Occupational Health and the peer support through the HOPE programme.
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https://www.healthjobsuk.com/job/UK...igue_Syndrome_ME_Post_Covid_Syndrome-v3773823

eta: note also for long covid patients
 
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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.....
 
Wonko said:
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.....
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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.
 
Wonko said:
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.....
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https://www.royalcornwall.nhs.uk/services/chronic-fatigue-syndrome-cfsme/

We offer an outpatient and community based service for patients who live in Cornwall and are suspected of having Chronic Fatigue Syndrome, which is also known as Chronic Fatigue Syndrome (CFS/ME)

Our specialist team offers diagnosis and assessment, and works with patients and their GPs to develop a clinical management plan [note - this is not the same a as the general 'Care Plan' that the new guidelines mandate] and help them with their longterm rehabilitation [bolding and words in brackets mine].

The team comprises a consultant, two GPs with a specialist interest, a consultant clinical psychologist, a specialist clinician, three occupational therapists and a clinical secretary/administrator.

This page was last updated: November 9th, 2021
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our-services-chronic-fatigue.jpg


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!).
 
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Wonko said:
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.
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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/
 
Sly Saint said:
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/
Click to expand...
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.
 
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