United Kingdom: Oxford Health NHS Foundation Trust; Oxford University Hospitals ME/CFS service

The latest deceptive language manipulation used to disguise GET/Graded Activity is to frame exercise as rebuilding your stamina.


Oxford Health NHS Foundation Trust

Treatments

'.... Starting with some gentle, regular, activities you can gradually begin to rebuild your stamina.'

https://www.oxfordhealth.nhs.uk/me-and-cfs/treatments/

Even creepier:
Introduction to ME/CFS course
These programmes run in different localities around Oxfordshire throughout the year.  Each programme has someone attending who is already recovering from ME/CFS and who can share their experiences.

Starting to see that they are trying to use distortion of the old criteria to use 'Recovery Norway/LP' mislead by not giving people correct stats on their own condition - as should be their right - in order to mislead them in behaviour that harms most. It's like a diabetes unit being allowed to use a dodgy programme which they market by getting in that one person from 1998 who it turned out had hypoglycemia due to other causes but they think is still allowed to be used as a flag-bearer for claiming 'everyone recovers'.

'.... Starting with some gentle, regular, activities you can gradually begin to rebuild your stamina.'


Based on assumptions/research in non-ME/CFS persons. Whereas e.g. Workwell research shows erm that ME/CFS - when you acknowledge you are treating an actual illness with PEM, or people with it - means such an approach has the risk of reducing someone's energy envelope/threshold.

That is a contradiction in terms - the whole webpage on that website is someone creating themselves a false reality where they can feel comfortable in their delusions that all their ignorance works. I'm guessing they still don't look for PEM as that would reduce their gravy-train and I highly doubt any of their recovery tales from years gone by are scouted to make sure they have PEM/PESE ie ME/CFS. Which I think should mean they are mis-selling/lying by having them there if they cannot prove that.

The interesting thing in this case is that whilst King's decided to 'play the game' by claiming they don't treat ME/CFS because they still call it CFS or CFS/ME and use various different names, this lots have gone with ME/CFS. But I see no talk of PEM/PESE, and they clearly don't know the codnition ME/CFS at all from what they do or say. So they should, in a sensible world, be more straightforward to right-off as incompetent and to be closed and any staff deemed as such?

PLus, Ergo it [their tone and phrasing re: stamina] is disability-bigotry-sewing/incitement, and incompetence and lack of knowledge is no excuse but also inexcusable given that is the one thing their position requires.


So....
I'm imagining the lovely patronising marketing-focused spiel

gradually increase activities which decreases your function and health over time.

Heck your willpower will be there as you slowly make yourself more disabled! We'll 'motivate you all the way to do more, and look disappointed with you for getting worse'

And we'll make you take responsibility either way: if you don't do enough you make yourself worse we'll say you 'didn't try hard enough' and if you do we'll say 'you didn't try hard enough'. But to ensure the coercion is there we will only tell you that is what we will do at the end.

And we'll stick up out of date anonymous testimonials/where we didn't check someone had PEM as if that is representative of 'recovery' from the illness but not provide enough info for anyone to be sure they had it at all. It's OK that we only use recovery ones because we claim these are 'inspiration', even though really we should be operating a medicine-based department for an actual health condition and be open and honest on prognosis and information.

Why can you be more like Dave? Dave has stamina... because he recovered in a year.
 
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Therapy is designed to work with all the above processes described in the pragmatic model. The aim of a rehabilitation plan is to regulate bodily systems and to begin to desensitise a heightened level of sensory processing inside the body by doing a small amount (a baseline) of activity and achieving a better balance of rest in all areas of activity in daily life. Having achieved this, the challenge may be to then build up activity gently over time thereby reeducating the body and increasing tolerance for activities.
Nothing has changed, and nothing will change until the senior offenders are removed from power. They have made it brazenly clear that they are going to do everything in their power to block any meaningful reform.
 
And of course SMILE's "the bastards don't want to get better"
just for the sake of accuracy... That was from the FINE trial (sister trial to PACE), it came years before SMILE. I dont have the quote evidence to put my hand on right now, but i'm certain it was from FINE - which was nurses trialling exercise on severely affected patients in their own homes.
 
Just having a look at the Oxford services in relation to this advert. At OUH (there is another one) it is run by clinical psychologist anyway, with 2+ psych and a physio. https://www.ouh.nhs.uk/chronic-fatigue/treatment/

It says that their approach is in line with 'the Nice guideline' (and links at least to the 2021 one) and BACME guide to therapy in ME/CFS

I think that this document - and indeed others in BACME's archive page ( https://bacme.info/library/management_guides/ ), which seems to have quite a lot of materials I wasn't aware they've been building up - needs to be looked at carefully by us and probably charities too. It's nonsense like this that makes me think a clear out is needed, because it doesn't matter how good the communication of pwme and scientists is then it feels there is deliberate misinterpreation and hear what they like tactics

Yeah good point. I just looked up The PEM guide on there. It’s all in the name
Post Exertional ….Fatigue. Either these medical professionals weren’t trained on what the word malaise means and have never thought to do a cursory online dictionary search to check it out and despite this decided to designate themselves “experts” on the patient group most strongly associated with this condition and to use the term-incorrectly- often and in print, in so doing mislead fellow healthcare workers and misinform their own patients. Or they were taught basic medical vocabulary. They are capable of understanding the medical meaning. They have found themselves with reason or reasons enough, to deny this knowledge.
 
BACME is not an authority of any type here. They flaunt their defiance of the NICE guidelines, while pretending to follow them, but will pretend that somehow this lobby group of commercial therapists is an authority worth citing.

Good grief this profession...

As someone who worked for years and was what would be termed as a dedicated workhorse, make sure you are getting it right by figuring out what is the right thing, not just box-ticking of doing something I cannot help but get totally polar opposite feels from the outlook and personal qualities that come from @PhysiosforME vs BACME

And I don't think it is a sales spiel issue, even though clearly BACME's target isn't us or patients.
 
Merged thread

https://www.thecanary.co/opinion/2023/08/16/me-cfs-nhs-trust-clinical-psychologist/

...may require managing difficulties in understanding (such as cognitive deficits, or unconscious denial of psychological conflicts), or overcoming communication difficulties with patient who are hostile, antagonistic, highly anxious or psychotic.
For those of you who don't remember, this is Michael Sharpe's territory.

...specialised plans for formal psychological intervention, based upon the individual assessment and formulation, and making use of an informed judgment of evidence of treatment efficacy and psychological principles.
The ME Association put out a statement from its medical adviser Dr Charles Shepherd. He said:

The way in which people with ME/CFS are described is inaccurate, offensive and unnecessary and I am sure that people with kidney disease who are awaiting a transplant would also find these descriptions offensive.
 
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ME Association responds to disappointing reply from Oxford NHS Trust about ‘inaccurate’ and ‘offensive’ job advert
August 21, 2023

On 14 August, Dr Shepherd wrote to Dr Haldene and the Oxford NHS Trust about an ‘inaccurate' and ‘offensive' job advertisement for a clinical psychologist to work with the ME/CFS specialist service (and the renal transplant service). We received a disappointing reply from Dr Prangnell – Consultant Clinical Neuropsychologist – to which Dr Shepherd has responded (below). He has also written to Professor Meghana Pandit, Chief Executive of the Oxford NHS Trust.

The reply includes:
The job description is based on a nationally agreed template from NHS Employers as part of the Agenda for Change Framework.
The claim seems to be that it's generic content not specific for ME/CFS.

There's an excellent response from Dr Shepherd, which includes the following:
However, I have worked with people who have ME/CFS for over 40 years – some of whom are upset and distressed by the lack of care and support they have been given by health professionals. During this time I have never had to deal with anyone suffering a psychotic episode or who was been physically aggressive. In fact, most people with ME/CFS are far too unwell to be physically aggressive.

Having looked at some other job adverts for psychologists it is clear that there is no compulsion to use this form of discriminatory wording from the template.

Well said, Charles Shepherd, if you're reading this, thank you.
 
ME Association responds to disappointing reply from Oxford NHS Trust about ‘inaccurate’ and ‘offensive’ job advert
August 21, 2023

The reply includes:

The claim seems to be that it's generic content not specific for ME/CFS.

There's an excellent response from Dr Shepherd, which includes the following:


Well said, Charles Shepherd, if you're reading this, thank you.

Charles is spot on here - there is no compulsion to use the wording - it's a generic format that NHS services can use, adapt, modify to fit the job role. I suspect it was lazy editing before the job advert got posted. Many of the generic content might have some relevance for some posts in certain specialities but not for pwME. Mixture of lack of knowledge, care, attention to detail and minimal oversight / final edit before approval given to post the advert. They need to take more care. Embarrassing. They are not helping themselves by being defensive. Could simply apologise, remove, re-edit and repost an appropriate job description/person specification for the role. Sad that this seems hard to do. Who'd wanna work there?
 
The Oxford NHS revised job advert is hardly an improvement on the first one. I don't know why anyone is thanking them for writing a new advert. NHS ME services should be led by ME educated specialist doctors. We are medically abandoned and suffering from gross medical neglect, but if we become psychotic there must be psychologists trained to 'deal with' us ???? The NHS is still getting it all wrong. ME sufferers are being further put off from engaging with any ME so called services.
 
job ad:
622ca266133218c58214a8cdda91aaba

Specialist Occupational Therapist/Specialist Physiotherapist

Would you like to work in a highly regarded specialist service making a positive difference to people experiencing chronic/persistent 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 ME/CFS, Post COVID-19 condition or fatigue management approaches and is enthusiastic about working in this specialist area.

The service is integrated with the Post Covid Assessment Clinic at the Churchill Hospital and the Post Covid Rehabilitation Team, working closely with specialist respiratory physiotherapists and Oxfordshire Talking Therapies. It provides groups and 121 sessions. From an ME/CFS perspective the service provides diagnosis, management advice, education and rehabilitation for adults and young people (from age 14) with ME/CFS, both individually and in groups.
Someofyour duties:
  • To contribute as a team member to the provision of a specialist countywide community service for adults with Post COVID-19 condition (Long Covid) and adults and young people (currently over the age of 14) with Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS).
  • To operate as an autonomous Therapist providing advanced clinical expertise within the multi-professional team for the assessment, treatment, management and evaluation of adults and young people with the conditions.
  • To implement a range of specialist therapeutic interventions for patients and their relatives/carers, through individual and/or group sessions, that facilitates and supports a culture that enables patients to develop self-management skills to improve health outcomes.
https://www.simplyhired.co.uk/job/gTOlMJ7X_mGAsTtrkvyb2Q6vYMCihopZq_TnYozasf9MfV4r8aA6Og
 
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