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  This is a Google translated version.  In the Dutch Journal of Medicine (NTvG) is an article published by Huijbregts et al. It is about…

I’ve always feared HIV/AIDS. I’ve always been inspired by ACTUP.

Stunned by the passivity in regards to HIV/AIDS, ME and now LongCovid despite the immense suffering.

Check out my blog about activism, fighting back, love and revolutionizing medicine.

Patients with a disease like ME are by some considered “difficult” patients. Not only because of the fact that they might be hard to treat, but difficult as a person. All kinds of character traits have been assigned to patients that suffer from diseases like ME. Some practitioners almost seem to hate their patients. I’ve always wondered how it got to this point. Are these really the characteristics of patients with a disease like ME? Is this exclusively for a disease like ME? Are there likely ways to improve communication?

We are in a crisis! A pandemic! The coronavirus is spreading. It’s frightening. Will I be infected? My friends? And most importantly how will it affect us? The uncertainty of the unknown is probably the most unsettling of the whole situation. Especially for someone with an underlying health condition.

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…”

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 and…

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?