[Artwork Title: “Far-from-my-bed show”, 30×30 cm, colored pencils on paper, 2021]
I am Markus, father of three daughters and caregiver of two family members, both bedridden. My wife has been ill for over 36 years and had to wait about 31 years for an ME/CFS diagnosis. She now has a very severe form of ME/CFS and has been in the dark for almost four years. Medication provides some relief from symptoms but offers no solution.
In 2019, she had to give up her career as an artist, but she still draws, only very briefly and very little. She made the artwork below entirely with colored pencils, over 9 months (a tiny piece each time), depicting the loneliness and distance from the ‘normal world’ that she and many fellow sufferers experience daily.
Our youngest daughter fell ill at the age of five after an infection, but became progressively sicker around puberty (resulting in a particularly severe form of ME/CFS), even requiring hospitalization. She is doing much better now, partly due to medication, but she is still seriously ill. She has had to say goodbye to her dream of attending a musical training program but still engages with music and creation whenever possible.
Our eldest daughter also became progressively sicker during adolescence and became bedridden as a result of following Graded Exercise Therapy (GET). She now has ‘moderate’ ME/CFS, after three years of being bedridden and with the help of supportive medication. Like her sister, she has seen many dreams fade over the years but still holds hope for the future.
Our other daughter, who lives 50 km away with her partner, fortunately has not been affected by this terrible illness, and neither have I. At least, not directly, but indirectly, of course, to a high degree. This means we can only see our two children and their partners, parents, or friends very rarely. I have been working from home for over four years due to continuous caregiving. My wife and daughters can tolerate very little, and their energy levels always dictate our activities. Despite everything, we all continue to hope and cherish the small moments: ‘Seize the moment’!
Our eldest daughter also lives 50 km away with her husband, but it might as well be on the other side of the world. During the darkest period of their illness, my wife and eldest daughter were unable to see each other for almost three years. When a meeting between them became possible again, it was a very emotional reunion, of course. The uncertainty that it might take another three years (or longer) before a new meeting was possible made it very difficult. And it comes at very high cost, in the form of Post-Exertional Malaise (PEM), which shouldn’t be underestimated as it can feel as being ‘run over by a bus’.
Around the time of the COVID-19 pandemic, the health of our youngest deteriorated rapidly. She eventually could not go to school anymore and spent a total of about 1 year and 9 months in a dark room. Fortunately, we had a pediatrician and a general practitioner who took us seriously and provided support, even in the toughest times. For example, when a school doctor felt the need to threaten my family with a report to Child Protective Services because we were not enthusiastic about the Fitnet/GET program she proposed (read: mandated). This was against the advice of the pediatrician, general practitioner, and other authorities, but it cost us a lot of time, energy, and stress. This stress caused further deterioration in my daughter and wife.
Ultimately, we were able to handle this situation, but unfortunately, we still hear almost weekly stories of parents who find themselves in a similar situation, where children with ME/CFS are still being prescribed Fitnet/GET, even now, as if it were mandatory. If you don’t comply, you have a serious problem as parents. I think (and according to the ‘latest state of biomedical science’), we have long surpassed the idea that ME/CFS is ‘all in the head’. But well, that’s a different discussion, for a different time…
All of this, combined with all the heartbreaking stories of fellow patients who today still lack care, languishing alone in dark rooms, being minimized, and ignored by doctors (often lacking recognition and support), drives me to want to contribute. Also, to give some substance to my overall feeling of helplessness.
Partly due to my own biochemical background and family situation, I was asked by a former board member of the ME/CFS Association, Ieke van Doorn, to join the developing NMCB project from January 2022 onwards. After a brief and pleasant introduction, including with Jos Bosch and Betsy Van Oortmarssen (from the ME & Disability Support Group), we quickly delved into the details.
Jos’ starting point was to fully follow the ME/CFS Research Program, with the core idea that it is a program ‘by patients, for patients’. And based on that idea, patient organizations got to work to create something beautiful and unique (not only on a national level but also internationally).
In this process, co-creation between patient and scientist was the ‘modus operandi’, which honors the approach of the Research Program. We have had many discussions with Jos (and others) about matters such as: diagnostic criteria, inclusion/exclusion criteria, patient participation, recruitment, strategy, mission/vision, communication, the importance of recognition and empathy, education, improving care, patient-led research, etc.
Since October 2023, I have officially become a member of the NMCB board on behalf of the ME/CFS Association and hope to further contribute to this wonderful initiative, with all my heart, hoping that it will lead to great results that will drastically improve the quality of life of my family members and all fellow patients (in terms of recognition, care, and treatment).
