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Beauty in the dark.

A wonderfully written guest blog by CNN reporter and ME patient Ryan Prior about his trip to Amsterdam and our brief meeting.

“For years I’d dreamed of backpacking through Europe, of seeing the Eiffel Tower and the Mona Lisa and the Roman Colosseum. This summer at the age of 28 I finally got to achieve that. But in the shadow of the monuments, many of the intimate human moments became far memorable…”

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David “PACEman” Tuller in Amsterdam 2018

An interview with David Tuller where he talks about:
Patients and advocate like Alem Matthees from Australia.
The largest treatment trial for “Chronic Fatigue Syndrome” – the PACEtrial.
The Dutch “Chronic Fatigue Syndrome” studies.
The British Parliament and the role of Carol Monaghan.
The parallels between Trump and PACE-case.
Changes and developing, CDC.
ME as a fascinating story, a challenging thing.
He talks about hope.

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The “X” factors of ME.

The questions are often; Why do patients with Myalgic Encephalomyelitis (ME) have such issues with psychological factors with regards to their disease? Especially the aversion towards CBT and GET? Which would be weird because psychological factors play a part in many diseases!? Now is that really the whole story? Do patients with ME really have issues with the fact that psychological factors could play a part in their illness? Do patients really not want any psychological treatments?

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