There has been so much ME news over the past few months – the PACE trial scandal, #MillionsMissing protests all over the world, and Esther Crawley’s proposed research splashed all over the papers as a ‘breakthrough’, that I thought I’d do a summary.
Tag Archives | M.E.
The church brought a camera to my house, an hour away from their church, and asked me lots of questions about my experience and theology. They played this 38 minute video interview to 200 people gathered there,
“Enter Spectator writer Rod Liddle, who’s baffled by ME patients wanting better treatment than this… 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.”
I watched rugby! For the first time in my life, I watched rugby and almost understood it. What’s more, I actually enjoyed it. For a spectator, it’s vastly superior to a football match. There’s always something happening – surfing over the line with the ball, or a kick, or wrestling someone to the ground, or a group hug, or a ballet jump. Plus, when there’s a foul, it’s not someone jumping in the air and clinging onto their ankle like a baby. If there’s a foul in rugby, you’re gonna see some actual blood.
It is not just the lack of make-up that makes me feel particularly vulnerable and ‘naked’ about this film: I tell stories here that I have confided to very few others. The aim is to assist awareness of this much-misunderstood disease, and to campaign for a review of the Nice guidelines for M.E./CFS in the UK.
The Telegraph article gave the impression that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) offer the best chance of recovery for M.E. patients. Actually, the study found something quite different – that those in the GET and CBT groups had no greater improvements, long-term, than those in the Pacing group (APT) and those who did nothing at all (Standard Medical Care). In other words, their new follow-up study showed that there is no advantage in Graded Exercise Therapy over other therapies.
These past few years have shown a flurry of small breakthroughs in ME research, indicating inflammation in the brain, showing perhaps for the first time biochemically the ME patient’s abnormal physiological response to exercise, and a possible autoimmune origin. Finding the cause seems closer than ever – but because the government won’t fund it, we are reliant on people who know how devastating this illness can be in order to take research forward.
All the same, this is a time for celebration: ME is in the news in the UK, and it is due to a study which seems to indicate ‘robust evidence’ that ME is a physical not ‘functional’ illness. I dare not even say it, but it could well be that greatly-elusive biomarker the ME world has been waiting for. This could be a huge breakthrough for the future of research and treatment for ME.