The DWP and the PACE trial

The PACE trial was a controversial research project. It looked into treatment for people living with myalgic encephalomyelitis (ME). You can read Canary articles on the disease here. The PACE trial claimed that patients could improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).

The results of the £5m trial, part-funded by the DWP, was originally published in the Lancet in 2011. But it was dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.

In the UK, CBT and GET are still the NHS’s approved treatment under guidelines from the National Institute for Health and Care Excellence (NICE). But NICE is undertaking a review of this. Recently, more and more academics, medical professionals, and people living with ME have been actively campaigning against the PACE trial and its results. But this has now stepped up a gear with the involvement of a doctor.

A doctor in the house

Dr Sarah Myhill is a practising doctor, author, and campaigner. She has been a consistent advocate for people living with ME. Myhill has written several books and is a seasoned speaker on the disease. She has also been forthright in her views on the PACE trial. And now, she has taken this to the next level.

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Myhill is running a campaign calling for a public inquiry into the PACE trial and what she describes as the “abuse” of ME patients due to its results. It’s called Medical Abuse In ME Sufferers, or #MAIMES.

As she told The Canary, she believes the PACE trial has resulted in the abuse of people living with ME because:

People who are powerless, because they haven’t got the energy to fight, are told by doctors who should know better about treatment that actually makes them worse. This is medical abuse. That’s why I’ve called it MAIMES.

The notion of the PACE trial resulting in the abuse of people living with ME seems a valid one when you look at people’s experiences.

Medical abuse?

Jessica Taylor-Bearman is one such example. She wrote a book called A Girl Behind Dark Glasses about her experience of severe ME and how the medical profession dealt with her and the disease. In the book, Taylor-Bearman describes how she spent a period of time virtually paralysed in hospital. During this period her experiences included;

• Doctors effectively leaving her to vegetate.
• Sexual assault by a carer.
• Doctors giving her energy drinks as a form of treatment.

One consultant told her:

I want to see a big improvement in you, otherwise I will be sending you back to where you came from and you will never get better. You wouldn’t want that, would you?

But moreover, Taylor-Bearman’s experience of medical professional’s approach to ME is symptomatic of countless other people’s. So many have been disbelieved, stigmatised, given incorrect treatment or ultimately told it’s ‘all in their heads’. Children with ME have also been negatively affected. Myhill and others believe much of this stems from the PACE trial. So, MAIMES aims to do something about this.

A public inquiry

Myhill is calling on people to contact their MPs to get them to officially sign up to support the call for a public inquiry. It needs the support of at least 50 MPs. Currently, it has 38. Then Myhill and the campaign organisers will officially approach the health secretary Matt Hancock. They’ll call on him to launch a public inquiry. You can read full details of MAIMES goals and approach below:

So, this is where the public come in. The MAIMES campaign needs people to contact their MPs. They need to explain about the PACE trial and the campaign. Then they need to ask MPs to officially support it. Myhill and her co-campaigners Craig Robinson and Kathryn Twinn have produced all the resources people need to do this. Contact forms, detailed information, and more are all available here.

As Myhill told The Canary:

This has got to be a patient-driven revolution. We need to start that with a proper public inquiry. And to get that public inquiry we need enough MPs to demand that… When we get enough MPs… then we will have our day. It could change the whole management of ME in this country.

Enough is enough

It’s a bold vision but one that’s needed. Because the PACE trial’s implications have been far-reaching. As Dr Keith Geraghty described in a recent review of the trial, CBT for ME patients is:

an idealised narrative model. It exists as a dogmatic model favoured by model promoters. Our review exposes stark weaknesses, inconsistencies and contradictions, both in its theoretical underpinnings and the research said to prove model validity. Our findings suggest the CBM [cognitive behavioural model] is not fit for purpose, as it poorly reflects the accounts given by patients and it ignores the wealth of evidence showing biological, immune and neurological dysfunction in ME… Given that the CBM is cited as the basis for CBT and GET interventions, there is an urgent need for clinicians, therapists and health providers to review this treatment paradigm.

Carol Monaghan MP thinks that the PACE trial was, in part, a DWP money saving exercise. As she said:

One wonders why the DWP would fund such a trial, unless of course it was seen as a way of removing people on long-term benefits and reducing the welfare bill.

But whatever the reasons behind the PACE trial, one thing is already clear. It was and is flawed. Its treatments can be highly damaging to patients. And as Myhill says, it could be considered a form of abuse. Now is the time for people living with ME and their supporters to redress the balance. And that starts with MAIMES.

Featured image via UK government – Wikimedia and Elias Sch – pixabay