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 | Chronic Fatigue Syndrome
While British politics has been merrily imploding, I’ve been finally well enough to leave the house. Hence: #millionsmissing ME funding protest, fish and chips by the sea, the boy’s baptism, plus NEW HAIR! TV, music, online recommendations
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.
“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.