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.
Archive | M.E. awareness
Video – Interview – Exeter
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,
Why I’m Giving Up My Trainers #millionsmissing
I am Tanya Marlow, sick with ME for twenty years, housebound for the last six, one of the millions missing.
Because of ME, I miss playing with my son at the park, singing opera arias properly; I miss the freedom of going round to friends’ houses for meals or coffee, I miss walking hand in hand with my husband; I miss my ministry in church.
I miss running.
ME is not exercise phobia, it’s a physical illness
“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’m in an ME awareness mini-documentary (Change for M.E. Campaign)
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.
Can exercise and positivity overcome M.E. / CFS? A look at the evidence
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.
ME Awareness Day 2015
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.
Do miracles still happen?
“I don’t know what God is doing. I don’t know why He heals me and then doesn’t heal me. I don’t know why He heals some and not others. I don’t know what governs His actions. That is what makes Him God.”
