A Glorious Moment For The Dutch Government To Step Up The Plate

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. 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 lost her imagination to guess how a life without dealing with symptoms, no disability allowance, and other certainties, might look like. 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

Being aware that Bruins’ announcement was only three months ago, I consider myself not being impatient. I am not, 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 still 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 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 averagely?
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 that I am 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.





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Valentine’s Day Last Year

Do you also think Valentine’s Day is an overrated festivity? Oooobviously, the first thing on people’s mind – since they don’t stand a chance ignoring this phenomenon – Valentine being everywhere right when the cheerfulness of the New Year starts to fade.
However, I have very happy memories to last year’s Valentine’s Day. This was one for the books really, as I had a blind date (with my partner being present) and I got a lovely surprise from my secret lover.  Continue reading

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A Ghostly Visitor – Buddy, The Sequel

A quick online search showed that the caterpillar Buddy might be a ghost moth. Apparently, it can take up to two years before such a moth changes into a chrysalis. Nope, no typo, no brain fog, no kidding… it could indeed be two whole years until Buddy will no longer be my bed and breakfast guest.

The good news is that it might not be a ghost moth. The bad news? It might not be a ghost moth, it could be worse.  Continue reading

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Meet Buddy, My B and B Guest

The relief when the first butterfly was born was tremendous. Don’t get me wrong: there was joy and lots of it, but relief as well… that those previous few weeks I wasn’t growing maggots as a friend had suggested. Continue reading

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Unfamiliar Body Parts

Winter hasn’t even begun yet, but at the moment I am trying very hard to recover from my third flu this year. Yes, since 2018 has started I had the flu three times already! That is more than my partner and I… Well, you fill in the blanks. Continue reading

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The Hand That Rocks The Cradle – Raising Butterflies

Saturday morning. I am emailing a friend, telling her that we already raised two butterflies and there are five caterpillars and eleven chrysalises left.
For over ten years I used to babysit her children. But despite caterpillars looking small and cute, I kept thinking back to the days I changed nappies. It being far easier, definitely quicker and baby poo was not even half as scary. Continue reading

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Meet Bob, My BFM

I am not sure it is being housebound or my brain fog, but when the days all look the same I often cannot remember what day it is or when something happened. And then there are incidents that I cannot recall if I did or didn’t do something specific. On top of that, thinking I was hearing sounds (imaginative or not) I got really uncomfortable. And that was when Bob turned up. Continue reading

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The Obsessive Dyer

It has been slightly more than two months since natural dyeing in general and solar dyeing in particular piqued my interest, but already I am turning into a maniac. Continue reading

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The Guilty Dyer

My partner has been complaining about the freezer being filled to the brim with petals of the rhododendron (collected by me after he pruned it), columbines, and from the pansies not only the petals – the stems and leaves as well, since I started a new hobby.
But the guilt I experience because of my solar dyeing has nothing to do with him. What I am afraid of is ruining resources for bees and butterflies in our garden. And we all know these lovely creatures can use all the help they can get. Continue reading

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The Ill-mannered Patient

Last month I was ill for exactly thirteen years. Involuntarily, I spent most of that time indoors and I developed some rather unusual habits. Continue reading

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