Tag Archives | myalgic encephalomyelitis

ME is not exercise phobia, it’s a physical illness

“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.”

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The gift of knowing a suffering God

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.

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I’m in an ME awareness mini-documentary (Change for M.E. Campaign)

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.

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Can exercise and positivity overcome M.E. / CFS? A look at the evidence

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.

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Like me, like me, like me (Confessions of a social media addict)

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.

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When your holiday is not heaven

When the grief of chronic illness strikes, I am Adam and Eve, homesick for Eden, looking at the angel barring the way back. My sickness is part of the metaphor that reminds me of the brokenness of the world. When I am paddling in the clear Mediterranean, I am John in Patmos, with a glimpse of heaven and the riches of eternal life with the Creator.

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What I’m Into (April 2015)

My son had his first movie premiere at the church with about ten of his classmates, who were kind enough to come on a Saturday morning and were fed popcorn and ice cream for their efforts. Alas, there will be no sequel, however – even before the boy said his emphatic ‘No’, you could have guessed from looking at the director’s bloodshot eyes that this would not be repeated. (Magic Man got bored of wearing the helmet about one day into filming.)

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ME Awareness Day 2015

These past few years have shown a flurry of small breakthroughs in ME research, indicating inflammation in the brain, showing perhaps for the first time biochemically the ME patient’s abnormal physiological response to exercise, and a possible autoimmune origin. Finding the cause seems closer than ever – but because the government won’t fund it, we are reliant on people who know how devastating this illness can be in order to take research forward.

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