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 | myalgic encephalomyelitis
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,
Last year, I wrote a popular post entitled ‘When Your Holiday is Not Heaven.’ I stand by that, but this year, my holiday was actually pretty darn close to heaven, and here’s some reasons why:
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.
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.