ME/CFS services in the United Kingdom

What is on the website looks positive, but it would be helpful to understand what they mean by ‘rehabilitation’ given they provide ten week rehabilitation courses for adults and tailored individual rehabilitation programmes.

 

Yes, I would really like to know what their "rehabilitation programs" consist of.

 

another job ad for this group
ACTIVATE Team, Kingsway Health Centre, Stevenage, Hertfordshire

Clinical Specialist Physiotherapist

https://www.nhsjobs.com/job/UK/Hert...Pain/Musculoskeletal_Persistent_Pain-v4741163

 

job ad London
Highly Specialist Occupational Therapist

https://www.nurses.co.uk/jobs/17891...university-college-hospital-london-nhs-trust/

 

In case anyone else is wondering what autogenic training is. Seems to be a form of self-hypnosis. Wikipedia has this (written by a true believer by the look of it)

Can't argue with perceived quality of life and youthful skin, can you (sorry guys, the latter is for women only)

https://en.wikipedia.org/wiki/Autogenic_training

 

erm...aren't we already accused of paying too much attention to bodily sensations?

and they want us to pay more attention, using some form of hypnotic state?

as someone who has spent a considerable amount of time learning to ignore 'bodily sensations' - I'd probably be even crazier if I didn't - I can't see this helping much.

 

yes, it also comes up here
https://www.s4me.info/threads/me-cfs-services-in-the-united-kingdom.5625/page-29#post-442272

(I think it's the same job, just being readvertised.)

 

Questions need to be asked of NHS Herts and West Essex ICB Primary Care Board on their web information and approach to ME and NICE 2021?

Have approached MEA and Charles to have a look.
May put in a question from the , they are our adjacent ICS and part of Essex.

We are Suffolk and N E Essex and it's confusing isn't it?


The NHS Herts and West Essex ICB Primary Care Board meeting will be held on Thursday 24 November from 9:30am.

Members of the public who want to register their attendance or would like to raise a question for the Board please email by 4pm on Monday 21 November.

Papers will be available before the meeting.

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https://hertsandwestessex.icb.nhs.u...algic-encephalitis-cfs-me-inpatient-treatment


NHS Herts and West Essex Integrated Care Board (ICB)
Chronic Fatigue Syndrome / Myalgic Encephalitis (CFS / ME)
Inpatient treatment

July 2022 V1.0


"Rationale
There is limited high quality evidence relating to the effectiveness of this intervention in CFS.
There is evidence of effectiveness from randomised controlled trials of cognitive behavioural therapy (CBT) and graded exercise therapy (GET). Guidance on the management of patients is provided in the latest clinical guideline from NICE.

should be aware of the NICE clinical guideline on the effective management of patients with CFS. Referrals to in-patient services for CFS will only be considered in exceptional circumstances as effective management is available locally.Treatments of unproven effectiveness will not normally be provided under the NHS."
------------------------------------------------------
A presentation referencing ME and CFS....

Long COVID and Rehabilitation

https://www.activeessex.org/wp-content/uploads/2021/05/Long-COVID-v02-Ruths-presentation-.pdf

What is chronic fatigue?

Chronic fatigue syndrome (CFS) is a long-term illness with a wide range of symptoms –the most common symptom is extreme tiredness
CFSis also known as ME, myalgic encephalomyelitis
CFS/ME can affect anyone including children and is more common in women, tending to develop between mid-20s and mid-40s
Recognised before Long COVID


Treatment for chronic fatigue
A structured exercise programme graded exercise therapy new guidelines refer to exercise envelopes
Medication for pain, nausea, sleep etc.
Cognitive behavioural therapy (CBT)
Most people with CFS will improve over time, especially with treatment, although some people do not make a full recovery
It's also likely there will be periods when symptoms get better or worse
Children and young people with CFS/ME are more likely to recover fully

Ruth Barlow Respiratory Lead
Mid Essex,
Provide

 

Please feel free to pitch in if you are in Herts/W Essex with a question!

 

MEA and others from area are willing to consider dealing with this.

 

Those kinds of lies from public officials are scandalous. There is explicitly no evidence that those treatments make any difference in outcome. In the end even many, when pressed, admit that this makes people "feel better", that this is not a cure. Even though they could go right back and say it in the next sentence without seeing any problem with the blatant contradiction.

And yet here they are claiming explicitly that this is a cure, there is no interpretation for improving "with treatment" other than asserting that the treatment is what caused the recovery, this is how sentences are constructed. There is no more basis for this than saying that drinking water cures diabetes, on the basis of excessive thirst being a common symptom and that drinking water can relieve that thirst.

The amount of lying in healthcare is excessive. Seriously excessive, even by normal standards of politics.

 

So frustrating that it is being done local by local rather than a proper get shot of all the frauds and fake claims and paying for things that do harm whereever they are. Which is what needs to be done otherwise even the areas that might finish themselves off sorting their locality could find that whilst this lot still exists elsewhere they are vulnerable to what they've fought for not lasting long. It's exhausting but also not an effective way of sorting it ever, the grime will just keeping popping up from wherever it is allowed to keep festering.

 

this is also used in the NHS Scotland site
see https://www.s4me.info/threads/nhs-scotland-website-not-yet-updated-nov-2021.23115/#post-413868

source is AfME.

eta: although the 'especially with treatment' has been added.

 

job

https://uk.indeed.com/viewjob?jk=5899cecbc58d2bf0&from=serp&vjs=3
'chronic fatigue' again
indeed:
https://uk.indeed.com/Chronic-Fatigue-jobs
not sure quite why a lot of the jobs come up under 'chronic fatigue'

 

Re: the job search result for Chronic fatigue - there's a standard UK Government "Reasonable Adjustment" statement which is what is likely triggering the result (I haven't checked them all )

"Reasonable Adjustment
At DWP we value diversity and inclusion and actively encourage and welcome applications from everyone, including those that are underrepresented in our workforce.

We consider visible and non-visible disabilities, neurodiversity or learning differences, chronic medical conditions, or mental ill health. Examples include dyslexia, epilepsy, autism, chronic fatigue, or schizophrenia.

If you need a change to be made so that you can make your application, you should:Contact Government Recruitment Service via DWPrecruitment.grs@cabinetoffice.gov.uk as soon as possible before the closing date to discuss your needs.

Complete the “Reasonable Adjustments” section in the “Additional requirements” page of your application form to tell us what changes or help you might need further on in the recruitment process. For instance, you may need wheelchair access at interview, or if you’re deaf, a Language Service Professional."

Stockport NHS full job description: CNRS Specialist Physiotherapist Chronic Fatigue/ME

pdf full spec: http://jobs.stockport.nhs.uk/documents?vdoc=6805642

Responsibility for Patient Care

To undertake Physiotherapy assessments for a designated caseload, including those with diverse or complex presentations/multiple pathologies; use advanced clinical reasoning skills and manual
assessment techniques, to provide an accurate diagnosis of their condition.

To work with patients to identify physiotherapy goals as part of the overall patient’s treatment.

To plan and implement individual interventions, in collaboration with the patient, using graded activity to achieve therapeutic goals, within CNST Team.

To plan and implement individual interventions, in collaboration with the patient, which could include advising about exercise, positioning at rest, Graded exercise approach is not recommended for
individuals with CFS/ME and has been found to be harmful for some.

To take delegated responsibility for managing patients with particular conditions and be responsible for providing specialist physiotherapist assessment and treatment plans for patients with these
conditions.

Assess patient understanding of treatment proposals, gain valid informed consent and have the capacity to work within a legal framework with patients who lack capacity to consent to treatment.

Evaluate patient progress, reassess and change treatment programmes as appropriate.

To discuss with patient and carers outcome of treatment and prognosis.

​

 

Cambrian Community Gym

https://cambriancentre.org/health-referrals-to-the-cambrian-gym/

exercise referral form

https://cambriancentre.org/wp-content/uploads/2023/03/CCG-Exercise-Referral-Form-digi-v0.2.pdf

@PhysiosforME