Anil van der Zee Capture.Dance.Words Wed, 17 Feb 2021 01:41:11 +0000 en-GB hourly 1 Anil van der Zee 32 32 125130613 Confused confusion in the Dutch Journal of Medicine. Tue, 16 Feb 2021 20:28:36 +0000   This is a Google translated version.  In the Dutch Journal of Medicine (NTvG) is an article published by Huijbregts et al. It is about…

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Your silence is killing M.E. Wed, 29 Jul 2020 19:46:19 +0000 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.

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The fear in my doctor’s eyes. Tue, 19 May 2020 03:09:04 +0000 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?

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The distant corona connection. Sat, 28 Mar 2020 04:16:53 +0000 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.

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Beauty in the dark. Thu, 07 Mar 2019 21:54:44 +0000 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 Wed, 26 Sep 2018 00:32:19 +0000 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...

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The “X” factors of ME. Thu, 12 Jul 2018 20:48:42 +0000 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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#art2cureME #millionsmissing #timeforunrest Thu, 19 Apr 2018 14:52:11 +0000 Last year, I started an online campaign where my friends helped to raise awareness for ME through performance art. Artists from all disciplines gathered and, undoubtedly, many dancers participated. This year, I wanted to do something similar but with a twist.

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The denouement Wed, 28 Mar 2018 20:38:07 +0000 After all the disastrous press related to the Dutch Health Council I really needed to set the record straight and do some explaining. Here's my response to the opinion piece “ME is not ‘purely physical” by Knoop et al, (our Dutch PACE-trial friends) in response to the Dutch health council in the NRC.

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Thoughts On Reaching 40 Thu, 15 Feb 2018 15:29:17 +0000 Guest blog by Naomi Whittingham.

Last year I turned forty. For most people, such an occasion is cause for reflection. This is especially true when severe illness has formed a major part of life. Having been seriously ill with ME since the age of twelve, birthdays such as...

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