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.....

 

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.

 

"and involves six weekly sessions, each lasting two hours."

2 hours! Clearly not 'designed' by anyone with knowledge of ME.

 

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:

• BACME’s National Services Workstream undertook a 2018 snapshot audit of the current provision of NHS CFS/ME services in the UK: BACME CFS/ME National Services Survey (PDF)

• 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

• Table 1 Reasons for rejected referrals and diagnoses after assessment (from the Devasahayam et al 2012 survey)

 

job ad

Highly Specialist Psychologist in Pain & ME / CFS

https://www.jobs.nhs.uk/xi/vacancy/916799359

 

'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

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...

 

Sounds like it will include everyone I wouldn't want, given that 'experienced' will inevitable mean 'experience in doing it wrong'.

 

Yeah, right.

 

and another job ad for CBT therapist
also treating LC

https://beta.jobs.nhs.uk/candidate/jobadvert/C9320-21-3879

 

Of course many of these people are possibly not aware yet, or only peripherally aware, of the new impending guideline. Presumably there will be some cats amongst pigeons soon.

 

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.

 

With current mindsets, to acknowledge common ground officially may take a revisionist episode which would make Stalin smile...

 

https://twitter.com/user/status/1452268125693566979


https://twitter.com/user/status/1453106824396300289

 

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

https://www.healthjobsuk.com/job/UK...on_Trust/CFSME_Service/CFSME_Service-v3477337

 

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?

 

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?