In 2005, the same year I got ill with an unknown viral infection from which I failed to recover, a council of The Ministry of Health in The Netherlands claimed biomedical research into myalgic encephalomyelitis (ME) was needed. The Minister of Health, Welfare and Sports at that time, Hans Hoogervorst, decided differently.
Thirteen years later, on March 19th 2018, a report by a new council expressed the same urgent message that biomedical research and treatment was urgently needed for ME. Last December, the current Minister of Medical Care, Bruno Bruins, stated that he would be following up on all accounts.
And today, exactly a year after this second report was made public, I am wondering what his promise can possibly mean? What can this mean to someone who cannot imagine a life without dealing with symptoms, no disability allowance, and other uncertainties. I am that someone, I have to deal with ME and I can no longer close my eyes and pretend I am not ill.
Imagine all the people
Bruins’ announcement was only three months ago, but I don’t think I’m being impatient, despite the fact people with ME tend to have a reputation for being willing to fight for acknowledgement, treatment and research, while coping with extreme fatigue as well as other debilitating symptoms. It is just that nowadays I spend my days exactly like I did a year ago: mostly in a horizontal position. My partner and I have not gone for a cup of tea somewhere, it has been five years since we did that. So I am not impatient, I am eagerly awaiting the rest of my life. Improvement of my health will most definitely mean a less restricted life.
Thirteen years have been wasted. Thirteen years! All this time it was common practice for doctors from regular hospitals to send patients with these mentioned symptoms (possibly tens of thousands of people) home empty-handed after checking them for well-known serious health conditions. Cognitive behavioral therapy was often suggested.
If it wasn’t for patients, caregivers, and advocates, politicians would not be discussing biomedical research regarding ME in the Netherlands. It was a petition in 2015 that subjected parliament to debate the abominable situation of patients and lack of funding in the first place. And that brought us to this unique opportunity.
You may say that I’m a dreamer
It will be a first in the history of the Netherlands that ME will be regarded as a serious, but not well-known illness. One for which immediate intervention is required. The Low Lands get the chance to lose their reputation for not being the sharpest tool in the shed, and change it to a leading position worldwide if only Minister Bruins steps up the plate.
His promise might, for instance, mean that clinics for people with ME will be opening soon, even though only a single one is mentioned in his statement. But surely he can’t expect those who are often far too ill to do their own grocery shopping to visit the one ME clinic in the country? Why not start six centers, one for every two counties on average?
Another part of the promise is related to research, biomedical, that is. Therefore, this might be the most important part of what we people with ME are waiting for. Can he fund a scientific center that dissects the neurological, gastrointestinal, and cardiological nature of this myalgic suffering? Perhaps in fifty years time anyone who is unfortunate enough to be hit by ME might know who Bruno Bruins was: the Minister who set a precedent for other countries where fellow patients were fighting the same battle.
We can safely assume that as we speak all sorts of things are going on behind the scenes. And in all honesty, I am indeed trying to win over the minister’s ego. Whether or not I am a dreamer, the sympathy of politicians never got us this far.
In this exact same week, I have been ill for fourteen years – which is no cause for celebration, needless to say. There won’t be any cake from me – I will be on the sofa waiting for whatever Minister Bruins and the Ministry of Health will reveal as their plan. I am hoping someone will use his or her imagination, unchaining us from our confinements and the need for escapism. May it be glorious.