Oxford NHS just re-gaslighted the entire ME community – and a charity rolled over and took it

Oxford University Hospitals NHS Foundation Trust has issued an apology – of sorts – to charity the ME Association. It’s over an offensive job advert that angered people living with the chronic neuroimmune disease myalgic encephalomyelitis (ME). However, Oxford NHS’s ‘apology’ is barely that – and has actually done little more than re-gaslight a whole group of chronically ill disabled people.

Oxford NHS: one advert igniting a whole community

The Canary has been documenting the controversy over Oxford NHS’s job advert. It’s hiring a clinical psychologist. The role will be working in the ME service, and the renal and transplant medicine service. However, Oxford NHS said in the advert (since altered) that the role would involved working with patients who have:

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.

It would also involve dealing with:

verbal abuse and risk of physical aggression (for example from people with behavioural problems or enduring mental illness).

Of course, it goes without saying that people with ME aren’t ‘hostile’, ‘antagonistic’, ‘verbally abusive’, or ‘physically aggressive’ – generally because they live with an energy-limiting chronic illness that barely lets them do things like wash up or go out for a coffee, let alone kick off at psychologists.

Enter the ME Association

In short, as I previously wrote, Oxford NHS’s overall thinking implied:

that ME patients are ill because, at least in part, their illness is psychosomatic (“unconscious denial of psychological conflicts”) – and this needs to be clinically psychologised out of them.

So, the ME Association got involved. The charity wrote to Oxford NHS asking it to change the advert to “remove the offensive language”. Consultant clinical neuropsychologist at Oxford Dr Simon Prangnell replied to the ME Association. He said that the wording that caused offense was not about people with ME. It was there in case the post holder had to respond to “emergency situations not necessarily within their usual service”.

This still wasn’t good enough for the ME Association – and rightly so. It then wrote to the boss of the NHS trust. Now, Oxford NHS has replied – saying ‘sorry’, noting that it has changed the advert and “revised the wording”. And the new wording must be good, because the ME Association said that it will be writing back to “thank them for taking this action”. Surely, Oxford NHS must have got it right this time? Yes?

No, of course it bloody well didn’t.

Rewording, but still saying, the same shit

The Oxford NHS ad for a clinical psychologist still states, in relation to ME patients, that the post holder will have to deal with people who are:

highly emotionally charged (such as eliciting/discussing experiences of trauma or childhood abuse), and which may require managing difficulties in understanding (such as cognitive deficits, or unconscious denial of psychological conflicts)

And that the person will need to be:

Skilled at communicating with patients who may at times present as hostile or who are highly anxious or psychotic.

All Oxford NHS has done is put the part about patients being ‘verbally abusive’ or ‘physically aggressive’ in the context of:

exceptional circumstance (for example, when working with a person experiencing a mental health crisis or responding to an urgent / emergency situation)

So, people living with ME still:

• Have unconscious denial of psychological conflicts – implying that ‘the illness is all in people’s heads’.
• Are “hostile”, “highly anxious”, and/or “psychotic” – implying that ‘the illness…’ etc etc.

Moreover, they’ve had some “childhood trauma” which is also causing their ME or making it worse. Although they may not remember it (probably because it never bloody happened), it is definitely somewhere at the root of their post-viral illness and the multitude of symptoms this causes. ‘The illness is all in people’s heads AND it’s their parent’s fault’.

ME: round in circles we go

How the ME Association thought the appropriate response to this re-gaslighting of the people it’s supposed to represent was to grovel and say ‘thanks’ to Oxford NHS is anyone’s guess – because even the letter from the trust to it was deviously worded and obtuse.

Oxford NHS said that:

The Trust did not intend to imply that all people [with ME] experience severe mental health conditions such as psychosis, or that all individuals would present with challenging behaviour.

In other words, people with ME aren’t ALL psychotic – just some of them are! They don’t ALL have challenging behaviour – just some of them do! Unless I’m missing something, this is the implication of Oxford NHS’s words: the words that the ME Association accepted as a sufficient apology.

All of this is unsurprising, given – as I previously wrote – Oxford NHS is a hotbed of crank psychiatrists desperately applying their fraudulent, pseudo-scientific ideas to a physical illness.

So, round in circles we go. After decades of abuse and neglect, an NHS trust repeatedly gaslights patients (while ignoring a wealth of actual science), and a charity (who said patients pay money to, to advocate for them) rolls over and takes it. Not good enough, in any way, shape, or form – given that just this week I reported on another ME patient dying while the NHS neglects her – but not surprising, either.

Once again it’s marginalised, chronically ill disabled people who have to tolerate this shit – on top of tolerating an illness which leaves many of them more functionally impaired than even cancer or heart disease does. They should not accept this continued abuse from Oxford NHS – and nor should they accept the ME Association’s simpering response, either.

Featured image via Alex E. Proimos – Wikimedia, resized to 770×403 under licence CC BY 2.0. the NHS – screengrab, and the ME Association – screengrab