An SNP MP is pushing for a House of Commons debate into what she called potentially “the biggest medical scandal of the 21st century”. And it can’t come soon enough for millions of people living with the disease in question: 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.
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 disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’. One SNP MP, though, is making moves for people living with ME.
Carol Monaghan, along with three other MPs, has made a submission to the Backbench Business Committee for a full House of Commons debate into ME. Contrary to Twitter reports, it has not approved her application nor has it set the date for the debate.
But the committee seemed positive about Monaghan’s submission. The chair Ian Mearns said:
I note that the application is supported by 30 or so Members of Parliament, which is very heartening. It is timely; I have been aware of the problem for over 30 years. It is the sort of issue that the Backbench Business Committee was created to air, so thank you very much for the application.
It follows a Westminster Hall debate that Monaghan held in June. As The Canary reported at the time, MPs from all parties came together in their criticism of the treatment of people living with ME; Including a controversial study that forms the basis for NHS treatment guidelines.
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 treatment under guidelines from the National Institute for Health and Care Excellence (NICE). But NICE is undertaking a review of this. And in August, 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.
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; a disease which the medical and scientific communities still only have limited answers for, and one around which accusations of willful ignorance, neglect and conflicts of interest blight professionals.
So, for the millions of people living with ME, Monaghan’s debate could be a positive move after the years of abuse they have suffered.
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