Capture.Dance.Words
The IT. I was about 17 or 18 when I first stepped inside of the IT. The IT was a famous nightclub in the center…
1 CommentPatients 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?
3 CommentsWe 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 CommentsA 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 CommentsAn 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 CommentsLast 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 CommentAfter 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 CommentGuest 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…
Leave a CommentSince 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 CommentsThis 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 CommentsUnrest 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 CommentsAs 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?
43 CommentsYou quite often hear about people doing amazing things for good causes. Yet Myalgic Encephalomyelitis is not a disease that has had the privilege of attracting that kind of attention. So it’s been quite something to get to know Mike Harley from Bristol. He’s running a marathon in every country in the EU, raising awareness and funds for Invest in ME, a UK charity promoting education and research for ME. What an amazing effort. Here’s my interview with someone I consider to be a true hero.
1 CommentPatient and doctor Mark Vink about Chronic Fatigue Syndrome.
Having so little energy that you can only leave your bed twice a day: that’s what CFS can be like. Researchers suggest it’s a mental disease. Nonsense, says doctor and CFS-patient Mark Vink.
Written by: Ellen de Visser, September 30 2017
7 CommentsBeing alone on stage, you really don’t see audience. The first 2 rows might be visible, however the rest is as obscured as the dark night.
Possibly some sounds reach your ears on stage, but for sure, they are felt. Their presence from that dark void, their spirits merging collectively with yours, what an amazing feeling, a high relatable to no other. It would fill me with energy for days. Do I now experience a similar feel??
The Dutch neurologist Emile Keuter, a “prominent” figure in the Medically Unexplained Physical Symptoms (MUPS) world referred to the ME community as the “militant CFS/ME community”. He ends his blog by claiming that CBT seems to be reasonably effective against physical fatigue but not with ME patients and makes the suggestive remark by saying “You may guess why”. I had to respond!!!
14 CommentsAs a dancer I have been surprised by the treatments I’ve received for my disease Myalgic Encephalomyelitis. I want to share my opinion from a dancer’s perspective. What do other professional ballet dancers think about the treatments and the current care that’s being offered to ME patients??
60 CommentsI’m raising awareness for Myalgic Encephalomyelitis (M.E.) better known as Chronic Fatigue Syndrome (CFS) through (performance) art. M.E. is a debilitating neuroimmune disease affecting 17 million children & adults worldwide. The name CFS wrongly suggests that this illness is all about chronic fatigue or rather chronic exhaustion. I asked some my fantastic friends, who are (former) professional dancers and fellow artists to help me explain.
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