ME/CFS services in the United Kingdom

It has several words in it that I have learned to distrust;

Living in combination with Well, which is nearly as big a trigger for me as 'wellness'.
NHS,
Sussex,
Foundation
Trust,
Community,
Trained volunteer tutors;
etc.

in short, all of the words have previously been used, by the NHS and it's agents, to deceive and mislead pwME.

No offense intended to anyone but.....
 
The course is provided by two trained volunteer tutors, who themselves are living with long-term health conditions, and involves six weekly sessions, each lasting two hours.
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Well, you can't do any cheaper than free labor, that's for sure. They will sure meet that target of not spending money. And not meaningfully helping anyone, that is clearly an operating process in this system.

Although the idea of people who clearly would benefit from several 101 courses on the issue writing a course on a topic they have no useful knowledge about, to the very people who could teach them things, is really a good image of where we are, and why. Adopting the letter without the spirit doesn't count. Ugh. What a mess perverse incentives produce.
 
Just posting these links to UK ME/CFS service surveys in case they contain anything useful with regard to questions about implementing the new NICE guideline:

  • Cited in that survey is:

    Devasahayam A, Lawn T, Murphy M, White PD. Alternative Diagnoses to Chronic Fatigue Syndrome in Referrals to a Specialist Service: Service Evaluation Survey. JRSM Short Reports. 2012;3(1):1-5. doi:10.1258/shorts.2011.011127
 
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job ad

Highly Specialist Psychologist in Pain & ME / CFS
The Pain Service is an award winning psychology/therapy led interdisciplinary team providing high quality pain management services to people in Hackney living with persistent pain. The ME/CFS Service was set up in 2018 to work with patients with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS).

This is an exciting opportunity for a clinical, health or counselling psychologist with experience of working with clients with long term health conditions, to join a dynamic team of psychologists, occupational therapists, physiotherapists, nurse specialist, pharmacist and consultant working across both services. With support from psychology, the teams work in a psychologically informed way and the multi-disciplinary teams are trained to use an acceptance and commitment framework to support our patients to live well even in the presence of pain and ME/CFS. Psychological therapy is both highly valued and well-established within the teams and the successful applicant would work as a member of a team of psychologists who are skilled in a range of approaches including ACT, CBT, mindfulness and compassion focused approaches.
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The successful applicant will assess and manage a caseload of patients with persistent pain both on a 1:1 basis and will work alongside MDT colleagues to deliver our pain management group programme and to develop groups in the ME/CFS Service. There will be opportunities for close interdisciplinary working, research, teaching and training & contributing to service development. We place a strong emphasis on CPD through team based training and support for attending external courses. There may be opportunity to work into the newly set up Long Covid Service which is also based in the same department, depending on service needs.
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https://www.jobs.nhs.uk/xi/vacancy/916799359
 
Sly Saint said:
job ad

Highly Specialist Psychologist in Pain & ME / CFS


https://www.jobs.nhs.uk/xi/vacancy/916799359
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'Developing groups for the ME/CFS service', this can only be for the most mildly affected patients. I have no confidence that anything is going to improve for the more severely affected (including 'moderate') ME patients over the coming years. We're likely going to stay invisible to NHS services. I do hope our charities step up and start working to get us actual healthcare in the future.
 
job ad

CFS/ME Specialist Therapist
Oxfordshire CFS/ME Service (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis)

Band 6 Specialist Practitioner

(Occupational Therapist)

Full-Time 37.5 hours per week.*

Would you like to work in a small specialist service making a positive difference to people experiencing chronic fatigue?

We are seeking an autonomous healthcare professional to join this dynamic specialist team at a very interesting time when fatigue management is high on the agenda following the Covid-19 pandemic.

You will be an experienced clinician who has an understanding of CFS/ME or fatigue management approaches and is enthusiastic about working in this specialist area.

The service provides diagnosis, management advice, education and rehabilitation for adults and young people (from age 14) with CFS/ME, both individually and in groups.

It is also currently developing ways to support people who require rehabilitation following covid-19 in relation to fatigue and activity management.

The successful applicant will be required to manage their own case load, providing clinical expertise for people with moderate to severe and complex presentations of CFS/ME and Long Covid.
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https://www.jobs.nhs.uk/xi/vacancy/916815016

this combining services (ME/CFS LC) seems to be on the up; the sooner the new guidelines are published the better...
 
and another job ad for CBT therapist
also treating LC
The Derbyshire Chronic Fatigue Syndrome/ME Service has an exciting opportunity for a band 7 cognitive behavioural therapist to join our team of existing cognitive behavioural therapist, occupational therapists, physiotherapists and consultants in rehabilitation medicine.

The service provides MDT specialist assessment and interventions for adults aged 16 and over with CFS/ME and has now expanded to provide treatment for people with long covid fatigue.

In view of this increased demand we are looking to recruit an additional cognitive behavioural therapist with a broad range of skills to provide biopsychosocial assessment and treatment of these patient groups.

We take a holistic, collaborative approach, to help manage symptoms more effectively, working with clients towards achieving their goals.

If you are a passionate, experienced cognitive behavioural therapist looking for a new challenge in CFS/ME and long covid fatigue we would love to hear from you.
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Applicants should have a keen interest, good knowledge and experience of working with clients with CFS/ME or other long term conditions. Experience of working within a multidisciplinary team and competency in provision of clinical CBT supervision for other team members is also required. Experience of working in a mental health background is preferred.
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https://beta.jobs.nhs.uk/candidate/jobadvert/C9320-21-3879
 
Sly Saint said:
this combining services (ME/CFS LC) seems to be on the up; the sooner the new guidelines are published the better...
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Depending on the local service pathway, this will probably be for those who have gone through the separate stand alone long covid assessment service, and been assessed to have or possibly have ME/cfs, possibly among other diagnoses and needs.

ME clinics have been given extra funding to hold groups for long covid patients who meet the ME criteria. I'm not sure how long they will be seen separately, at the moment it seems the two groups are kept apart despite meeting the same diagnostic criteria.
 
Haveyoutriedyoga said:
Depending on the local service pathway, this will probably be for those who have gone through the separate stand alone long covid assessment service, and been assessed to have or possibly have ME/cfs, possibly among other diagnoses and needs.

ME clinics have been given extra funding to hold groups for long covid patients who meet the ME criteria. I'm not sure how long they will be seen separately, at the moment it seems the two groups are kept apart despite meeting the same diagnostic criteria.
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With current mindsets, to acknowledge common ground officially may take a revisionist episode which would make Stalin smile...
 
They've just changed the name to GAM (graded activity management). What they were calling GET sometimes turned out to be more like APT (adaptive pacing therapy as per PACE). But none of them are 'pacing'.
The key thing to spot is when if they talk about 'boom and bust'.
 
Job Sheffield Health and Social Care

At Sheffield Health and Social Care NHS Foundation Trust we provide a range of mental health, learning disability, substance misuse, primary care and other specialist services designed around the needs of people in our city.
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Job overview
This is an exciting opportunity for an enthusiastic and well organised person, with previous experience of working in an administrative / secretarial role, to join our dynamic and supportive service. The service offers specialist interventions for adults and children, with a diagnosis of CFS/ME, from across South Yorkshire and North Derbyshire. This fixed-term role also includes supporting the adult clinical team in processing and managing long-covid referrals from across the region as part of the national response to the long term impact of covid-19 .
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https://www.healthjobsuk.com/job/UK...on_Trust/CFSME_Service/CFSME_Service-v3477337
 
Sly Saint said:
They've just changed the name to GAM (graded activity management). What they were calling GET sometimes turned out to be more like APT (adaptive pacing therapy as per PACE). But none of them are 'pacing'.
The key thing to spot is when if they talk about 'boom and bust'.
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Wait I thought boom and bust was the same as push crash, with the idea that you don't push so you are less likely to crash, is it not that?
 
Haveyoutriedyoga said:
Wait I thought boom and bust was the same as push crash, with the idea that you don't push so you are less likely to crash, is it not that?
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It sounds like the term push crash as you are using it might be a technique to avoid boom and bust behaviour.

Boom and bust when I was diagnosed was used to describe what happened when a patient had a good day/phase/hour and attempted to make use of it (conveniently ignoring the theory patients were scared of activity).

So the theory was the patient felt a little better and so did a bit more. Then felt a lot worse so did less until they felt a bit better and did a bit more again.

Of course they are so slippery with language and definitions that I wouldn't be at all surprised to find different clinics use the same terms to mean different things.

In fact we already know they do.
 
Our understanding is that GAM is finding a baseline of activities that doesn't make our symptoms worse and then gradually increase it. In other words, it's pacing instead of GET. However, let's wait for the publication of the new Guidelines to confirm this.

That isn't pacing as I understand it. My understanding is that there should be no deliberate increasing of activity unless the person is well enough for it to be within their baseline. In other words the above makes no sense. GAM is GET.

I am wondering who R and K ME Group is?
 
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