Capture.Dance.Words
I have read the news reports about the opening of long-COVID clinics for children with mixed feelings. On the one hand, I find the stories…
Deja un comentarioI finally got myself to order a copy of the TV show Spoorloos (Without a Trace 14-05-2001), where I got to meet my mother. It…
Deja un comentarioThis an uncorrected Google translated text from the original Dutch version which you can read here: Boek review “De Achterblijvers” Book review “De Achterblijvers” by…
Deja un comentarioThis a google translated version this response: https://anilvanderzee.com/reactie-trouw-ontzeg-patienten-met-long-covid-niet-bij-voorbaat-de-fysio/ PEM is new!! My response to one piece in Trouw written by pulmonologistsJoost van den Aardweg, Harm…
Deja un comentarioAn interview with #NIETHERSTELD for severe ME day. It was a very special experience for me to be able to speak so extensively about severe…
Deja un comentarioIt’s the first day of M.E. Awareness Month 2023. It’s not only a month to make others aware of this debilitating disease. It also serves…
Deja un comentarioThis is a Google translated version. In the Dutch Journal of Medicine (NTvG) is an article published by Huijbregts et al. It is about…
Deja un comentarioI’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.
1 comentarioPatients 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?
6 comentariosWe 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.
2 comentariosA 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…”
6 comentariosAn 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?
18 comentariosLast 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.
1 comentarioAfter 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.
1 comentarioGuest 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…
Deja un comentarioSince David Tuller, DrPH, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health at Berkeley University, started writing extensively about the flaws of the now infamous PACE-trial for “CFS”. A real paradigm shift is happening and I’m beyond honored to have been able to meet him, photograph him and ask him a few questions. Enjoy this exclusive interview with this incredible man!!
20 comentariosThis year I’ve arranged for saline IV’s. As I have a hard time tolerating any medication, and I’m not improving enough because of it. Saline IV’s seemed to be the best solution to help with my orthostatic intolerance or rather my postural orthostatic tachycardia syndrome. What could go wrong with a bit of water and salt, right??
37 comentariosUnrest NL -Tuesday, October 17, 2017 by Roland Cheung
A few of you may have been wondering who I am. Why is this Chinese guy from the US in the Netherlands? What is his involvement with ME activism? Why is he screening Unrest in Leiden? To answer some of your questions, I would like to share with you a bit of my story.
6 comentariosAs long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark quite hurtful but most of all, unfounded. As there is still a lot which remains unclear about Myalgic Encephalomyelitis (ME) which could be the reason why people might come to such a conclusion, whilst there are those who go even as far as claiming the same thing about a horrible disease like cancer. But is that really true? What does the literature say?
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