Category: Blog

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.

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??

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?

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!!!