The ME/cfs NICE guidelines urgently need a thorough review. You may be asking, what can I do to help? Here are three ways depending on how much time and energy you have:
Tag Archives | Chronic Fatigue Syndrome
ME patients in the UK have been waiting for ten years for the NICE Guidelines to be updated to reflect current science, and stop the only recommendations for treatment being Graded Exercise Therapy and Cognitive Behavioural Therapy.
Through the Shadowlands is a fascinating memoir, with a compelling story, nuggets of wisdom, and a thorough survey of the scientific research around ME and mould- based illnesses. It is a science-writer’s personal story of contracting ME – (myalgic encephalomyelitis, labelled as Chronic Fatigue Syndrome in the US), and how she made a good, though not full, recovery via extreme mould avoidance and psychological ‘brain retraining’.
It’s much easier to draw a correlation in the Bible between good followers of God who have suffered, than good people who haven’t. My interview (30 minutes audio or transcript) on disability and M.E. for Off The Page.
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.
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.”