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

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

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

no mention of PEM.

 

Have they in a co-ordinated way decided to minimize or not to mention PEM across NHS websites, or...? It's fairly strange given the guideline.

 

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.


.

 

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.

 

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

I find this quote deeply troubling.

 

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

No.
It mayn’t.
It may not.

 

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:

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.

 

This makes it sound like ME is deconditioning or loss of "stamina" which goes against what is explicitly in the guideline.

 

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.

 

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.

 

It's just so insulting. Stamina. **** off.

 

Yes. Everything that was won was fought for.

 

NHS Oxford University Hospitals ME/CFS service website

What therapy involves

Strategies covered in physiotherapy sessions may include:

https://www.ouh.nhs.uk/chronic-fatigue/treatment/whats-involved.aspx

 

I emailed them about the surprising omission of PEM (ie. the hallmark of the disease) on the MECFS symptoms list. I received a response thanking me for drawing attention to it.

 

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.

 

it's only been around for 30years.... and pwLC are now using it, so it's time they read up on it.

Even though NHS Scotland haven't updated their website since the NICE guidelines PEM is there
https://www.s4me.info/threads/nhs-e...2021-nice-publication-date.23065/#post-386720

 

PEM is now listed. Hooray!