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

Even creepier:

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'.

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.

 

ME patients' wholesale gaslighting by Oxford NHS Trust stinks (thecanary.co)

 

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.

 

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.

 

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/

For those of you who don't remember, this is Michael Sharpe's territory.

The ME Association put out a statement from its medical adviser Dr Charles Shepherd. He said:

 

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?

 

and well done me for finding it in the first place

 

Indeed.
Your pseudonym, 'Sly Saint' evidently describes you well

 

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:

https://www.simplyhired.co.uk/job/gTOlMJ7X_mGAsTtrkvyb2Q6vYMCihopZq_TnYozasf9MfV4r8aA6Og

 

this is still available on the web.
from 2019 Young persons guide to CFS/ME
Leaflet (oxfordhealth.nhs.uk)