It is important to have a community where you are among like-minded people. Where people accept you as you are, where half a word is enough. In short, where you are at home. For me, that is the community of transmen. Only there are made no (unspoken) assumptions about my gender, my youth and/or my physical appearance. Only there I can be fully myself without expectations.
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!
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.
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.
Regularly I read messages from people with ME/CFS who are this incredibly exhausted that they're very ill and in great pain. Unfortunately, this is the reality of people with the heaviest forms of ME/CFS. A situation that you don't wish for your worst enemy! Nevertheless, I find it striking that further reading often shows that these people go (far) beyond their limits. And that happens (almost) every day. I think we can no longer afford such "distractions".
At the moment I found peace with my situation bit by bit, the diagnosis was 2 years ago. I thought that was a good moment to repeat the exercise test with which my diagnosis was made. Cognitive I had progressed well: the brain fog was significantly less than in the beginning. I was very curious what had changed physically in the same period. My ME/CFS specialist thought this was a good idea, and so we made an appointment.
Last year I attended a two-day course at PGO Support, the organisation that supports patient organisations such as the ME/CFS Foundation Netherlands. We were with 13 participants from all kinds of different patient and health care organisations, and from all over the country. In short, a very mixed group!