ME/CFS services in the United Kingdom

I think that might be a bit like trying to abolish beer from inside a pub.

 

https://twitter.com/user/status/1278595656039481345


https://twitter.com/user/status/1278595761354280960


https://twitter.com/user/status/1278595999360057344

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.

 

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.

 

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.

 

this came up in a search, published July 2020 as 'news'
Healthwatch Lancashire contributes to national picture of ME/CFS patient experiences
https://eastlancsccg.nhs.uk/covid-1...ional-picture-of-me-cfs-patient-experiences-2

however the report appears to be from 2017, and the link to it in this article doesn't work.......ie the page isn't there.
the report can be found here
https://www.healthwatch.co.uk/reports-library/me-cfs-patient-experience-report

 

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

full article here
https://www.mmu.ac.uk/news-and-events/news/story/12677/

 

Job advert (Belfast)
Consultant Physician with an interest in ME and CFS ref:52163009
https://jobs.hscni.net/Job/10441/71820111--consultant-physician-with-an-interest-in-me-and-cfs

Discussed further here
Consultant post for N Ireland

 

Speciality doctor - when you read further the role is for an assistant psychologist.

If you're an Assistant Psychologist why not refer to the role as such?

Is it because doctor sounds more sciency?

 

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.

 

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?

 

this appears to only be one of the jobs on offer

https://findajob.dwp.gov.uk/details/4537042

 

Merged thread

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

ie lie to patient

https://www.ucl.ac.uk/clinical-psychology/competency-maps/physical-health-conditions-competences/specific interventions/CBT for Chronic Fatigue Syndrome web.pdf

 

Excuse me while I go and throw up ...

 

Thanks. Do you know when this is from? How did you just come across it?

 

Exactly. Is this current or is this something from 10 years ago?

 

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.

 

https://www.ucl.ac.uk/pals/research...gy/research-groups/core/competence-frameworks

Psychological Interventions with People with Persistent Physical Health Problems (Long term conditions/medically unexplained symptoms)

https://www.ucl.ac.uk/clinical-psychology/competency-maps/physical-health-map.htm

chronic fatigue on map ------>

https://www.ucl.ac.uk/clinical-psyc...ons/CBT for Chronic Fatigue Syndrome web.pdf