About living with ME/CFS.


My experiences at the Fatigue Clinic


In the past year I did the multidisciplinary treatment at the Vermoeidheidkliniek (Fatigue Clinic), location De Bilt. When I contacted them, I had 4 specific questions and I wondered if they could help me with those issues. Yes, they certainly could, the internist and the occupational therapist assured me at the intake. Uunfortunately reality was different: the treatment caused me to regress so badly I almost became bedridden. In this blog you can read what happened.

ME/CFS and the MUPS myth

Cartoon. Sick man is lying in bed, connected to a heart monitor. Female doctor stands next to the bed and thinks: "Everything checks out normal".

For a long time I didn't want to write about MUPS, for several reasons. Because ME/CFS is not a MUPS. Because I don't want to encourage the MUPS myth around ME/CFS. Because the MUPS myth bears witness to an unparalleled arrogance. Because... However, I notice it is time for me to do write something about it. Why? For exactly the same reasons!

(More) unknown causes of ME/CFS: mold

Wall with (dark) mold.

If ME/CFS is suspected, some obvious causes are excluded, and then the examinations will soon stop. After all, the cause of ME/CFS is unknown, so further investigation is considered futile.

If you are willing to look further, then indeed all kinds of possible causes for ME/CFS will appear. A number of them can even be treated properly! Although that isn't always possible in the Netherlands. Mold is one of these examples.

Living with ME/CFS is... Having to write down everything, because I will forget it otherwise.

Since the ME/CFS I forget a lot: I have to write everything down, otherwise I will forget it again. In the past I forgot things too every once in a while, of course. But then I still knew that I had to remember something (but what again?). Most people will recognise this feeling. Now it is different.

Can or can't ME/CFS be (bio)medically identified?

Can or can't ME/CFS be (bio)medically identified?

In various groups or forums people regularly complain that it's so annoying that ME/CFS can't be determined biomedically. I think docters are able to determine ME/CFS biomedically indeed. After examination ME/CFS specialists are able to determine whether a person has or hasn't ME/CFS. They are able to exclude ME/CFS as well, for example if there's evidence of another disease.

Living with ME/CFS is... Being total loss the rest of the day after an hour of mild activity.

After a (not very intensive) conversation of half an hour in the morning and a travel time of 2x 20 minutes (cycling at ease), I can be so exhausted that I am not able to do anything else for the rest of the day. And "nothing" is really NOTHING!

New normal

Green % sign, with a person in thinking posture in front of it.

Now I have been ill for about 3 years, something strange happens to me: I am starting to forget how it used to be. I realise very well I could do much more for the ME/CFS than I can do now, but the memory of my old life is starting to fade. I have become so used to my current situation that I can no longer imagine well what my former life was like.