About 2% of people with ME develops very severe ME. These are the people who are in bed 24 hours a day, 7 days a week. Who can't do anything anymore. Who lie in a dark room, because normal daylight is overwhelming. Who wear headphones, because everyday noises are too much.

When I suddenly got ME in 2015, my life was turned upside down, even though I had only a 'minor to moderate form'. It was no longer possible to work and as a self-employed person I ended up on social welfare. The first couple of years I was quite stable, physically. But then I started a treatment that went very wrong, causing me to deteriorate seriously in a few months. It took over a year to recover.

A while later, due to moving house and a failing Social Support Act, I again seriously deteriorated. In six months I became completely bedridden and severely demented. My specialist confirmed that I had progressed to 'moderate to severe form, with an emphasis on the latter'. That was two years ago and I am still recovering from this. That's just how ME works.

Minor push

These experiences have taught me that it takes very little to push someone with ME over the edge. We have no leftovers, so by chance we can seriously deteriorate in a surprisingly short time. I was lucky, because I know the cause of my backlashes and what I could do myself. Although I don't know if I'll ever get back to my 'old ME level' again. Time will tell…

But if you are unlucky and you do not know what the cause is, there is a high risk that you will continue to slip. Or maybe you do know what the cause is, but you have no influence on the situation. For example, because medical examiner of the Employee Insurance Agency (UWV) 'doesn't believe in ME' and therefore thinks you are able to work normally. Then there is a good chance that you will literally destroy yourself.

Some statistics

• Approximately 25% of people with ME have severe to very severe ME (IOM, 2015).
• People with severe ME are completely dependent on care, but often lack adequate medical care (Mihelicova, 2016).

Very severe ME

In that regard, very severe ME is much closer to the eye than many people think. If you are unlucky a few times, because you make an error of judgment yourself or because the world forces you to go beyond your limits, you can slide into very serious ME relatively easily.

Many people with ME don't want to think about this – with good reason, because very severe ME is the big spectre. Many doctors and other health care providers simply have no idea – and that is dangerous, because full of good intentions they give us a disastrous treatment or other fatal advice.

And no one sees or knows! People with normal ME are already poorly visible, but people with very severe ME are not visible at all. Because they are at home in bed and do not see doctors, because they are too ill to be able to visit a doctor. And they often depend on housemates, family or friends, because a 'kitchen table discussion' with the Social Support Act is not feasible and they therefore receive no support.

That's why this month, we let all those people with very severe ME know: you are not alone!

Jochem Verdonk got ME/CFS in 2015. He is a journalist at WijRollen.nl, de community for and by wheelchair users. On his own website he writes about his life with ME/CFS.

This column was published on ME Central on 26 August 2022.