Science for Patients: M.E. and My Life : Past, Present and Future - Frank Twisk (M.E. Patient and Advocate) interview with Dutch ME/cfs Association

M.E. and My Life : Past, Present and Future - Frank Twisk

My name is Frank Twisk. In a previous life, I was a project manager, business administrator, information scientist, mathematician, and university lecturer. And also an enthusiastic football player who just missed out on the Dutch national team. 

I have had M.E. (also known as Enteroviral Encephalomyelitis) since 1996. 

I am a medical refugee in Belgium; thanks to Prof. De Meirleir, I have recovered somewhat. I have my own website , and I am an author and activist against my will.

Like many patients, I have lost a great deal. From a university lecturer and author, I became a loser and a slacker with an imagined illness. From a very active young man, I became a couch potato. 

I went from a university level back to an IQ of 100. 

From a social life to an isolated existence, a medical refugee in Belgium, and someone who has lost a small fortune in personal income.

During the first few years, I tried to find answers in the medical world, but without success. I then decided to seek answers myself. I started writing medical articles myself, which resulted in a number of articles that can be called controversial, not least because CBT and Wessely are critically attacked in them. 

If we look at the fight for M.E. (also known as Enteroviral Encephalomyelitis) and for the truth, we see that the arguments put forward by the patient community matter less and less. 

Apparently, the free market has also made its entrance into the medical sector. The sales apparatus behind the evidence beast wins the battle every time. 

The role of the media in this is not exactly up to par either. The media blindly adopt the sales pitches (read: press releases) from the established order. 

This is partly because journalists often do not have the time to do their own research, but I find it incomprehensible that all evidence of biological abnormalities is simply swept under the rug and that psychobabble is given free rein in the Netherlands. 

Patients often write letters to the editor. 

Apparently, paper arguments are insufficient to win this battle. We will have to defeat the opponent in a more creative way.

In my view, a number of things are relevant for a better future. First of all, there is the distinction between M.E. (also known as Enteroviral Encephalomyelitis) and CFS. 

M.E. (also known as Enteroviral Encephalomyelitis) is not CFS. 

M.E. (also known as Enteroviral Encephalomyelitis) was defined by Ramsay, and we should not tamper with that. 

Symptoms of M.E. (also known as Enteroviral Encephalomyelitis), such as "muscle weakness" and "memory loss", are not mandatory for a CFS diagnosis. 

Yes, I am chronically tired, but that is from fatigue clinics, fatigue apps, and fatigue specialists. 

No, I am not tired; I want to play football, read, and play. 

To find a solution, we will have to take a step back. We must return to the basics. And in my view, those are the symptoms and the diagnosis. 

We must stop using questionnaires. 

As an expert, I say: measure, measure, measure. 

Things like “exercise intolerance” are too vague to end up on questionnaires. 

We must ensure that the "unbelievers" can no longer deny the problem. And we can only achieve this by "making the symptoms rock solid". 

Given the scientific developments, I am quite hopeful about the future. 

But on the other hand, I have been waiting for 18 years. A scientific breakthrough is a matter for scientists, but that does not mean that patients should just sit and wait for something to happen. 

We will have to draw attention to the problem in a creative way and put it on the agenda. It is time for renewed vigor, otherwise I will be telling the same story again in 18 years.