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Author: Anil van der Zee

Response Trouw: “Don’t deny patients with long covid the physio in advance.”

This a google translated version this response: PEM is new!! My response to one piece in Trouw written by pulmonologistsJoost van den Aardweg, Harm…

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The fear in my doctor’s eyes.

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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Beauty in the dark.

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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The “X” factors of ME.

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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The denouement

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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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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My promised saline IV update. How did it go?

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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Forging a Better Future for You and ME.

 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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Can positivity cure any disease?

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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Mike Harley is running for our lives in Amsterdam.

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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For patients with CFS, going to the bathroom is similar to running a marathon.

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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