Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’?
This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, view themselves as healthy, and increase their exercise. The NHS guidelines amalgamate ME and Chronic Fatigue Syndrome, assuming symptoms are caused by deconditioning and ‘exercise phobia’. Sufferers are offered Graded Exercise to increase fitness, and Cognitive Behavioural Therapy (CBT) to rid them of their ‘false illness beliefs’.
Enter Spectator writer Rod Liddle, who’s baffled by ME patients wanting better treatment than this. The culprit, he claims, is not the therapy, but society’s stigma of mental illness. With a strange logic, he asserts that because ME patients deny that they have a psychiatric disorder, this proves they have a psychiatric disorder.
Meanwhile, people are quietly dying of ME. ME sufferer Emily Collingridge died, aged 30; Victoria Webster died at just 18. People don’t die from ‘exercise phobia’. ME is not ‘lethargy’ and ‘aches and pains’, as Liddle claims. Severe ME is lying in a darkened room, alone, in agonising pain, tube-fed, catheterised, too weak to move or speak.
Sophia Mirza was such a person. Her doctors believed ME to be psychiatric, so police broke into her home, carrying her by force to a psychiatric institution to pursue Graded Exercise Therapy. She never recovered, and died soon afterwards of ME, aged 32. The cause of death was officially recorded as 'Chronic Fatigue Syndrome’. Her autopsy revealed indisputable, pathological proof of the disease.
Though Graded Exercise helps some, the ME Association reports 74 per cent of ME patients are harmed by the therapy, with some made permanently disabled. Dr Julia Newton ran electrical pulses through muscle biopsies; Dr Van Ness tested anaerobic thresholds of ME patients - both studies demonstrated ME patients are damaged by exercise.
What about the claim, by the PACE trial, that Graded Exercise Therapy and CBT can treat ME? This is a trial where you could enter moderately ill, get worse in the trial, and be declared ‘recovered’ at the end. Even the recent follow-up study conceded that, long-term, Graded Exercise and CBT are no better for ME than doing nothing. Investigative journalists and academics alike have dismissed the PACE trial as ‘clinical trial amateurism’.
Like MS or epilepsy, which were also once wrongly believed to be psychiatric disorders, ME is a neurological disease, and the World Health Organisation lists it as such. I am too weak to walk more than a few metres, needing to lie in bed 21 hours a day. With the little energy I have, I am an ME patient activist.
Patients are releasing awareness documentaries, petitioning the NHS to reform their guidelines so that fewer patients are harmed, and asking for medical journals to retract misleading claims of recovery from the PACE trial. Liddle may see this as ‘blind fury’; I think our eyes are wide open.
Tanya Marlow is a writer, author, broadcaster and campaigner. She can be found at Tanyamarlow.com or @Tanya_Marlow