A watershed moment is happening for millions of missing people

A pair of shoes from a Millions Missing demo in London
Steve Topple

There will soon be a watershed moment for millions of chronically ill disabled people. Because what one MP described as a “medical scandal” will now face a full parliamentary debate.

ME

Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects an estimated 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:

  • A worsening of symptoms brought on by physical activities, mental activities, or both. Often referred to as post-exertional malaise.
  • Flu-like symptoms.
  • All-over pain.
  • Sleep disturbance / problems.
  • Cognitive impairments.
  • Impairments of the body’s autonomic systems, such as nervous, digestive, and endocrine.
  • Hypersensitivity.

But ME has been fraught with controversy. For decades (and often still to this day), the medical profession has not properly recognised it. People living with ME have been disbelievedstigmatised, given incorrect treatment, or told it’s ‘all in their heads’. One SNP MP, though, is making moves for people living with ME.

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Carol Monaghan and three other MPs have secured a debate in the House of Commons on ME. It comes after their submission to the Backbench Business Committee. It will happen on Thursday 24 January.

The debate comes after one in Westminster Hall that Monaghan held in June 2018. As The Canary reported at the time, MPs from all parties came together in their criticism of the treatment of people living with ME. One target of the criticism was a controversial study that forms the basis for NHS treatment guidelines.

PACE Trial

The PACE Trial was a study into treatment for people living with ME. Its results claim that people living with ME can 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 UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been 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 treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this. But this has proved controversial. Because as ME Action UK reported, among the people sitting on the review committee are a co-author of the PACE Trial and other contentious medical professionals.

In August 2018, over 100 academics and 10 MPs published an open letter calling for the PACE Trial to be reviewed. But as Monaghan previously told The Canary, there are other concerns over the PACE Trial:

Equally concerning was the revelation that the trial was partly funded by the DWP  [Department for Work and Pensions] and that key investigators had links to major health insurance companies. The results of this controversial trial have in some cases been used to sanction people living with ME.

Horrific effects

You can read The Canary‘s full analyses of the PACE trial herehere and here. As I previously wrote:

I could point you to countless instances where people describe their appalling treatment by medical professionals. Because I’ve spoken to more sick and disabled people than I ever imagined I would. And they all describe being beaten down, dismissed, called liars and fantasists, and mentally undermined by medical professionals; often off the back of this most disgraceful research.

The real world effects of the PACE Trial on people are horrific.

But the trial is just a part of the picture surrounding the scandal of ME. It’s a disease for which the medical and scientific communities still only have limited answers, and one around which accusations of wilful ignorance, neglect, and conflicts of interest blight professionals.

Monaghan’s debate is a groundbreaking moment. Not least because of its cross-party support, but also because it represents the first time ME and the scandal surrounding the disease will be properly discussed in parliament. This could be the beginning of a drastic change in fortunes for the millions of people blighted by ME, but also by the damage caused by the medical community.

Featured image via The Canary

Get involved

  • Write to your MP asking them to attend the debate on 24 January.
  • Use ME Action’s “Meet with your MP” toolkit to help you speak with them.
  • Support the ME Association.

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