“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.”
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.
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.
I don’t know where to start, so perhaps I shall say this: every single attempt to get the NHS to treat me for my M.E. feels like a battle.
We were at the back of the hall, both of us, huddled up, our backs against the wall. Her coat smelt faintly of the secret cigarette she’d smoked before she came in.
I will be continuing my 1 Peter Fiction series next week, but for today I am over at Preston Yancey’s fine abode, guest posting on a series called ‘an everlasting meal and a moveable feast’. Today I am sharing about a time that is still a little vulnerable for me: the week after I gave […]
This is the fourth week of an M.E. relapse, which means I am more isolated than usual, needing to spend even more time in bed, in silence. I am an extrovert. I find that when I’m with people, I have more thoughts and ideas, more motivation and excitement to write and learn, than when […]
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Tanya Marlow blogs on the Bible, suffering and the messy edges of life [read more]
