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

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Note: There are two services in Oxfordshire dedicated to help patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): the OUH ME/CFS Service - and the Oxford Health ME/CFS Service.



Website updated Dec 2021
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Service
ME/CFS is a relatively common condition with symptoms that can be as disabling as other chronic conditions.

This can have a profound impact on the person, as well as their family.

It affects people of all ages.

Extreme fatigue most of the time is the main symptom – this is very different from ordinary tiredness.
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Symptoms
Symptoms vary from person to person and can include:




    • persistent and/or recurrent debilitating fatigue
    • feeling ill or flu-like, with painful glands and sore throat
    • joint and muscle pain
    • headaches
    • sleep disturbances
    • digestive problems
    • memory and concentration difficulties
    • dizziness and/or nausea
    • sensitivity to light and sound
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https://www.oxfordhealth.nhs.uk/me-and-cfs/what-is-cfs-me/

no mention of PEM.

 
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Okay so.

On the one hand they have clearly felt pressure to be slightly less directly dismissive and derogatory.


On the other hand.

“can be as disabling as other chronic conditions”

It depends which conditions doesn’t it?

Depends on how affected a person is with another chronic condition.

Depends on how affected a person is with ME.

So overall they are saying, nothing. On face value reading.

A case of using words located in prominent position in a statement of necessarily limited length to say, nothing.

For someone charged with writing about a subject that they know nothing about, this would be an understandable panic response.

If this someone were charged with formulation of an official document with far reaching implications for public health and disability discrimination, that would be unfortunate indeed.

More importantly the system that allows for an unqualified person to perform a communication role for which they are not qualified would need an urgent review and safeguards would need to be introduced.


However in this case this statement has been -unless all of them failed to do this?- approved by those who claim specific knowledge of this “condition”.

That they have chosen to say nothing about this condition to those readers who come free from prior knowledge or those with little knowledge looking to learn, says something.

Some readers will notice this lack of information immediately. Some readers will notice this later. All readers will notice this lack sooner or later.

The author/s have made the implication that a patient might be very much affected or they might not be. This is common to many chronic conditions, all of those with any kind of spectrum.

This statement is from an organisation whose members generally not focused their argument on a pure view that “cfs/me” or “me/cfs” or “chronic fatigue”patients were not affected by these “chronic conditions”.
At least not in regards to patients yet to experience forms of “treatment” offered by these particular professionals. That approach wouldn’t bring in the grant money.

These professionals have been targeted in suggesting that it would be easy for most patients to recover if they so choose. Through stepping back into “normal” function. That however badly “affected” a patient can with better behaviours stop being “affected”, more or less.


For them it’s what people with ME or “CFS” are affected by that they argue. Along with why.

Fatigue
Behaviours
Psychopathology

Recommitted to right here in this statement.


.
 
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Some advice on managing your condition may be all that you need to help you.

Initially it’s helpful to restore balance to your day-to-day living. This is done by establishing a pattern and a level of activity and rest that is achievable for you on a daily basis.

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

GROUP-PROGRAMME-300x211.jpg


Group programmes
As this condition can be very isolating, group programmes can be especially helpful in providing the opportunity to meet with other others have experienced similar difficulties and identifying together the best ways forward.

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.

Individual programmes
For people who are more severely affected or unable to attend a group – we will offer an individually tailored activity management programme. This can be delivered through home visits, phone, Skype, email or audio files.

Page last reviewed: 6 December, 2021
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I've never had a vision in my head of PWME sitting around crossed legged in a circle before.

Perfect conditions for spreading Covid in a vulnerable population. Okay, maybe that's part of an NHS strategy to reduce the ME population...

Where is the recognition this condition destroys sufferers' lives?
 
I think our charities need to be collating all this information from the 'specialised' NHS services being offered to PWME, so that if things do not improve over the next few years, they can argue for the NICE guidelines to be reviewed and the loopholes for unevidenced 'individually personalised programmes' closed. It really is sickening.
 
Initially it’s helpful to restore balance to your day-to-day living. This is done by establishing a pattern and a level of activity and rest that is achievable for you on a daily basis.

Starting with some gentle, regular, activities you can gradually begin to rebuild your stamina.
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Yep. Same old shit. They are barely even pretending anymore.

Simbindi said:
I think our charities need to be collating all this information from the 'specialised' NHS services being offered to PWME, so that if things do not improve over the next few years,
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We should certainly not wait that long. There is already evidence accumulating that the service providers are not serious about change. The longer they are allowed to get away with this crap the more entrenched it will become.
 
I note there is nothing in there about the patients having a 'Care Plan' devised, as recommended by NICE. Nothing helping with getting social care or aids and adaptations for housebound patients. Instead they have focused on offering an 'Activity Management Plan'.

If you click on the 'Your Care' tab, they haven't updated that part:

Diagnosis
A provisional diagnosis will generally be made by GPs and some initial advice or symptom management may be given.

Diagnosis is made after screening out other conditions (through blood tests) and through identification of how the condition began and has continued.

GPs can refer you to our service for confirmation of a diagnosis or, if mild, they may refer you to Oxford University Hospitals Trust’s Chronic Fatigue Service based at the Churchill Hospital, Headington.

It is recommended that children and young people have the diagnosis made or confirmed by a paediatrician.

Our highly specialised clinical lead practitioner and/or specialist therapists will confirm the diagnosis, if not already confirmed, and will then recommend the next steps following discussion with a wider multi-disciplinary team.

Treatments
Once the diagnosis is confirmed, recommendations are made for the best course of action based on the your particular circumstances, taking into account your needs and preferences. The service offers:

  • individualised, person-centred programmes that aim to sustain or gradually extend, if possible, the person’s physical, emotional and cognitive capacity.
  • support in managing the physical and emotional impact of symptoms (as recommended by NICE)
Page last reviewed: 15 March, 2019
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It really upsets me that all the NHS 'care' for PWME is about making them more 'functional' and not about actually reducing symptoms and suffering due to pain, extreme debilitating exhaustion, severe malaise, neurological dysfunction, orthostatic intolerance, severe headaches, nausea, sensory sensitivities etc.
 
I guess they rewrote this statement initially because they had to. To appear relevant they needed that -last updated on -date to be later than the NICE guideline release date.

It looks like at some point in the process they then found a good deal of enthusiasm for the project , unnecessarily cruel.

I don’t know what the most expedient way to deal with this is. I am sure we will have to display a similar level of enthusiasm and organisational purpose to get it dealt with.
 
Simbindi said:
I think our charities need to be collating all this information from the 'specialised' NHS services being offered to PWME, so that if things do not improve over the next few years, they can argue for the NICE guidelines to be reviewed and the loopholes for unevidenced 'individually personalised programmes' closed. It really is sickening.
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Isn't there an organization that does something like that? Enforce compliance? To at least make the process as streamlined as possible. Without someone wielding a hammer to force compliance, there is no incentive for the clinics to bother, they can simply do this right here and pretend it's good enough. Especially knowing the colleges and NHS administrators will back them up all the way.

It would probably still be necessary to feed them all the info and follow through on everything but otherwise repeating the same process dozens of times over is almost pointless, this could go on for years as long as they feel comfortable pretending to comply while flouting that they have no intention to change their model.

This is especially hard as most LC clinics are on the same model, and they have none of the protections in the ME guidelines, including being OK to push stuff like LP. There is basically no incentive to implement the guidelines unless there are consequences, LC offers a giant loophole for it. And of course any service can simply rebrand as FND or MUS with "chronic fatigue" in it and say it's all good to them, that it's not a ME/CFS service, just chronic fatigue.
 
NHS Oxford University Hospitals ME/CFS service website

What therapy involves
Recovery is a really important part of what we hope to offer to people who attend our service, though the term 'recovery' can mean different things to different people.

Often people experience an improvement in their symptoms after attending the service.

For others, recovery is more about being able to fulfil particular goals or to feel less limited by their symptoms.

We will talk to you about your hopes for your sessions and regularly monitor your progress with you. We may also ask you to complete questionnaires to help review your progress.

There is no set number of sessions with the service though as a guideline people tend to attend four to six sessions of specialist physiotherapy or six to 12 sessions of CBT with a Clinical Psychologist.
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Strategies covered in physiotherapy sessions may include:
    • activity management, including establishing or stabilising routines
    • education about ME/CFS management approaches
    • sleep advice
    • goal setting
    • gentle stretching
    • walking advice and planning
    • increasing strength, fitness and stamina
    • collaboratively developing and implementing physical activity or exercise plans
    • working towards a valued activity
    • flare-up management
    • practical techniques to help to improve quality of life and function.
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Our CBT sessions often involve themes such as optimising activity levels, understanding more about factors that can impact on ME/CFS, and managing the changes involved with having ME/CFS.

As well as using traditional CBT approaches, we often also draw from other modern CBT based approaches including Acceptance and Commitment Therapy (ACT), Compassion Focused Therapy (CFT) and mindfulness.
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https://www.ouh.nhs.uk/chronic-fatigue/treatment/whats-involved.aspx
 
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Remember that a lot of clinics responded to the consultations with "PEM? What is this new, arcane symptom you have invented to make a new disease?"

So maybe it is intentional. Then again, most of them don't understand what PEM is anyway and just see it as part of the fatigue.
 
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