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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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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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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Since 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!!
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This 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??
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Unrest 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.
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As 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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You 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.
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Patient 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
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Being 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!!!
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2016 turned out to be one of the most challenging years I have ever had to deal with. My housing situation was impossible in combination with my disease. I reached a real breaking point and became in need of urgent help. What did the Dutch health care system have to offer me? Did I get any help??
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As 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??
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I’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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