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
Tag Archives | myalgic encephalomyelitis
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.
This is a late, double-bill edition of What I’m Into – the Mysterious SuperVirus ME Relapse edition. Which means LOTS of recommendations – including Addie Zierman, Carolyn Custis James, Carolyn Weber, LB Hathaway, Helen Dunmore, Joshua Ferris – plus birthday photos and #FrontdoorSunbathing
“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.”
Whenever I’m feeling the sense of shame of not achieving as much as I would have liked, I remind myself that if something is worth doing, it is worth doing badly. Change often comes through lots of people doing small things imperfectly.
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.
crisis hits, you grab whatever lifeline you can in order to survive. Facebook and Twitter saved me from loneliness at the most difficult time of my life. But if you’re not careful, the rope that once saved you can become a noose around your neck.