I’ve dealt with ME/CFS since 2001, when I caught a major respiratory infection from which I never recovered. Instead of getting up after two weeks and going back to work I found myself stuck in a flu-like state – that I now know is ME/CFS.At the time I fell ill I was 28, I had a great job as a consultant in environmental management and corporate sustainability, I used to travel a lot and spent most of my spare time outdoors, trekking, kayaking, scuba diving. The difference between my life then and what is my reality now could not be greater.
After having struggled hard for a few years to try to still manage my job, I had to let my working life go. I kept getting worse and had to let most of my social life go. Today I am housebound, but trying to still keep some things going that matter much to me.
One such thing is the fight for ME/CFS care and research. So much needs to change! We need to raise awareness, get physicians educated about ME/CFS, make sure there is proper funding for the all-important biomedical research and see to it that specialist health care for ME/CFS patients is established in all countries.
The great part is that there are many of us working for these things. I feel inspired and encouraged by the international ME/CFS community and what we’re getting done together. I’m in Stockholm, Sweden, but am in close touch with ME/CFS advocates and researchers all over the world, and that regenerates my hope for a better future.
One day I hope to not have to relate to this anymore: