ME/CFS services in the United Kingdom







Code: 
https://twitter.com/livingnexisting/status/1278595656039481345

According to that report it seems to me that participants benefited from exchange similar to the chats we have in the S4ME community lounge or to what people who are able to attend meetings in person do in their local support groups.
 
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It depends on the group leaders. The pace lite message is subtle. I only fully understand some time afterwards that despite being aware of issues with GET I thought I was avoiding any pressure nevertheless I had increased activity rather than adopting exercise. Two aspects. One I had done some sorting cupboards in my house that needed doing but could have been started at another time. Second I had added the three hour group session onto my 15 working hours a week. After the first week I had to reduce work hours to accommodate the group session,


There was no benefit gained from the course that couldn’t have come from having a coffee once a month with a support group.

eta when I say some time later it was several months

eta2. It was like there was an assumption you should be doing more and a range of things. I was already working part time and doing all my own shopping cleaning etc......
 
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Sly Saint said:
job ad
General Practitioner with Special Interest in CFS/ME

https://www.jobs.nhs.uk/xi/vacancy/916096627
Click to expand...
Replace a few words with stuff like Reiki or healing crystals or cosmic energy and this reads exactly like an advert for an alternative medicine cult.

This is not normal. Never let people tell you this is normal. This mind-body woo is absolutely not normal in a field of science. It's like a regression to before the 20th century, except somehow worse.
 
MEMarge said:
@Gecko does the Sheffield Group have anyone they would recommend to apply for this?
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I'll raise it, thanks for the tag, but honestly doubt it. Reports of positive experiences with GPs in Sheffield are few and far between.
And tbh I think it's a weird role. I hear the lead therapist may be retiring some time too, which could lead to quite the change in the service. Let's hope the new NICE guidelines can do better at defining what a good service would look like.
 
another one based on the same report

Better relationships are key to improving ME patients’ experience of visiting their GP
Researchers analysed results data from a survey of people with the condition
Results
In research published in BMC Family Practice, a team from Manchester Metropolitan University analysed data from a nationwide survey of more than 470 patients with ME about their experiences of primary care.

The survey was carried out by Healthwatch Trafford - the independent health and social care services watchdog for the borough of Trafford in Greater Manchester - in response to an individual with the condition's experience.

Lead study author Dr Stephen Walsh, Senior Lecturer in Psychology at Manchester Metropolitan University, said: “A significant proportion of people with ME reported unsatisfactory relationships with their GP, and we wanted to try to understand the factors behind this by examining the Healthwatch Trafford data.

“We found approximately half of respondents did not trust their GP, and those who trusted their doctor were more likely to visit more often.

“This is important as a lack of trust can dissuade patients from attending their surgery as often as they would like, and this has a knock-on impact on clinicians being able to properly manage their condition.”
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full article here
https://www.mmu.ac.uk/news-and-events/news/story/12677/
 
I think something is wrong with the advert.

Assistant psychologists in the UK are usually people with an undergraduate psychology degree who work to gain practical clinical experience under supervision, and hope eventually to be accepted onto a doctoral post-grad programme (very competitive entry) to become a Clinical Psychologist.

I think most qualified Clinical Psychologists in healthcare would have a doctoral psychology degree, but I would have expected their registration bodies would be the British Psychological Society and the Health Professions Council. They would not be registered with the GMC.
 
MSEsperanza said:






Code: 
https://twitter.com/livingnexisting/status/1278595656039481345

According to that report it seems to me that participants benefited from exchange similar to the chats we have in the S4ME community lounge or to what people who are able to attend meetings in person do in their local support groups.
Click to expand...


It's all good and well to be validated . . . but then what. You're still ill and the BPS therapy people do not have anything to offer in terms of recovery if this is all that is happening at clinics. As time goes by the newly ill will discover that it may not be enough to have gotten a 'feel good' moment out of the therapy but for now this is enough and standing up for the clinic as having provided a service they find useful will eventual (I am presuming here) pale somewhat as they realise that having a treatment option would be preferable.

But, and this is important. Even as these clinics adjust to the reality that they don't offer recovery their official stance is still that of a psychologically driven response to initial illness and there is not now nor ever will be a 'biological' treatment so there is no need to look for one. Newby's are likely not aware of the decades of private lobbying to ensure that the BPS clinics are the primary and / or only treatment modality that is relevant to this illness.

Newly diagnosed may be fine with this now but what about if they are still ill a decade from now. From that vantage point how complementary would they be toward the help they received at these clinics?
 
Sly Saint said: ↑
Job advert
Specialty Doctor in Chronic Fatigue Syndrome / Myalgic Encephomylitis
Royal Cornwall Hospitals NHS Trust
https://www.psychminded.co.uk/job/s...onic-fatigue-syndrome-myalgic-encephomylitis/
Click to expand...

this appears to only be one of the jobs on offer

Specialty Doctor in Chronic Fatigue Syndrome / Myalgic Encephomylitis
Job details
Posting date: 08 August 2020
Salary: Not specified
Additional salary information: £40,037 - £74,661 per anumn pro rota
Hours: Full time
Closing date: 31 August 2020
Location: Truro, TR1 3LQ
Company: NHS Jobs
Job type: Permanent
Job reference: 156-MS-3065
Apply for this job

Summary


Speciality Doctor

in Chronic Fatigue Syndrome / Myalgic Encephomylitis (3PA's)

Applications are invited for the part time post of Specialty Doctor in Chronic Fatigue Syndrome (CFS)/ myalgic encephalomyelitis (ME) Service at the Royal Cornwall Hospital in Truro. (This post and the service may not stay with the Acute Trust in the future)

An exciting opportunity has arisen to join this small and very experienced specialist team in the Cornwall and Isles of Scilly CFS and ME Service. Applicants with an understanding of CFS/ME and related presentations of fatigue are invited to apply for the above post. The Cornwall CFS/ME Service comprises this post, a Clinical Specialist Therapist OT (Specialty Lead), Specialist Occupational Therapists x 4 and a Clinical Health Psychologist.

We would welcome applications from clinicians from a range of disciplines and grades, this could include GPwSI, Physicians, Associate Specialists in either Medicine or Mental Health who have an interest of working with people with severe fatigue within the CFS specialty as detailed in the NICE guidelines (53).

A suitably qualified medical practitioner is required to provide diagnosis and medical management of this group of adult patients and support transition from local and out of county Paediatrics. The service is commissioned to work across the Cornwall Peninsular, working closely with physical and mental health teams.

The service runs a training programme with the University of Exeter Medical School for undergraduates and a number of training days for local GP’s and clinicians.
Click to expand...
https://findajob.dwp.gov.uk/details/4537042
 
Merged thread

Cognitive Behaviour Therapy (CBT) for Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis/ Encephalopathy (ME)-UCL

An ability to draw on knowledge of factors considered to maintain CFS/ME, particularly:
unhelpful beliefs about the illness linked to avoidance as a coping strategy (e.g. a fear that activity will make the illness worse, leading to avoidance of most activities)
‘boom or bust’ cycles (bursts of activity followed by long periods of rest) or consistent under-activity
Click to expand...
unhelpful interpretations of symptoms (e.g.catastrophising about the consequences of
symptoms,or construing symptoms as a sign of ‘damage’)
Click to expand...
high levels of perfectionism, leading to unhelpful patterns of coping (e.g. construing regular periods of rest as “a waste of valuable time”, and falling into a ‘boom or bust’ pattern as a consequence)
Click to expand...

An ability to help the client discuss the psychological impacts of CFS/ME (such as low mood or worry, panic, capacity for enjoyment, sense of self-worth, suicidal ideation/intent)
an ability to phrase questions about psychological factors in a way that does not imply that these are seen as the primary drivers of CFS/ME
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ie lie to patient

Client’s beliefs about CFS/ME and symptoms
An ability to help the client discuss their beliefs about the causes of their illness and the factors that are maintaining it. An ability to gauge the strength of beliefs (e.g. how strongly they believe their illness has a purely physical cause, or how open they are to alternative multifactorial explanations)
An ability to identify and discuss fearful cognitions and their consequences (e.g. a fear that activity will lead to symptom exacerbation, leading to avoidance of activity)
Click to expand...


https://www.ucl.ac.uk/clinical-psychology/competency-maps/physical-health-conditions-competences/specific interventions/CBT for Chronic Fatigue Syndrome web.pdf
 
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Think we have seen this before as part of the UCL paediatric service although this may be from the adult service at the Royal Free?

The current UCL paediatric ME/CFS page indicates a standard BPS approach with GET and psychology. It also talks of 'pacing yourself better' which is clearly a misuse of the term.

I don't see any real likelihood of this group's approach changing unless the NICE guidelines change.
 
 
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