“In 1962, when I was nine years old, I developed hepatitis. I was immediately prescribed six weeks of strict bed rest and a very low-fat diet. After that, I spent another six weeks at a convalescent home to recover and rest. I am still grateful to my GP at the time for prescribing rest straight away. I believe this helped me function reasonably well for many years afterwards.
Nevertheless, my symptoms never really disappeared. I was left with an enlarged liver, fatty liver disease, a raised temperature and, above all, persistent fatigue. I was unable to take part in sports; everything I tried, I eventually had to give up.
When I was around thirty, I saw a GP who described my condition as a post-viral syndrome. In addition to the fatigue, I was experiencing severe sore throats and muscle pain. It was soon suggested that the problem was “all in my head”. I was referred to an internal medicine specialist, who detected the Epstein–Barr virus through blood tests but reached the same conclusion: a post-viral syndrome that I would have to learn to live with.
In the years that followed, my condition fluctuated. There were periods when I was unable to work for an entire year and could do little more than lie down or recline. My arms and legs felt like concrete, and the exhaustion was extreme. The occupational health physician again dismissed my symptoms as psychological and advised me to exercise. I was placed in a supervised fitness group, but instead of improving, my condition deteriorated. Eventually, I was advised to see a psychologist. I did not do so because I felt that this was not the root of the problem.
Gradually, my symptoms worsened and I became increasingly dizzy. With considerable difficulty, I obtained a referral to Professor Visser, a professor of cardiology. A tilt-table test revealed that I had orthostatic intolerance: I fainted immediately and had a 30% lower blood volume. Medication helped somewhat, but new symptoms soon emerged.
The pain in my toes and shins became increasingly severe: a tingling, icy sensation that is difficult to endure. My eyes also began to react differently. Following an examination, a neurologist concluded that I had neither small fibre neuropathy nor ME/CFS. According to her, I had made it all up and the problem was psychological. Through a different route, I eventually ended up at Maastricht University Medical Centre (Maastricht UMC), where small fibre neuropathy was diagnosed. To this day, no painkiller has helped, and my symptoms continue to worsen. After the Moderna vaccination, the pain became more severe and the weakness in my legs increased. Sometimes I can barely walk.
One thing has always been clear to me: my symptoms worsen after exertion. I have repeatedly explained this, but my concerns were often ignored. Instead, I was advised to exercise more, even though this had the opposite effect for me.
Now, at the age of 72, I find it difficult to accept that serious biomedical research into ME/CFS is finally being carried out. This should have happened much earlier. It also feels bitterly unfair that I can no longer participate in research myself, even though people who have been ill for so long can provide particularly valuable information. I follow developments with great interest and hope that researchers will finally pay closer attention to what is happening inside the body — something that has received far too little attention for many years.”
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We fully understand how disappointing it can be when, like Ettie, you would very much like to participate in research but are unable to do so because of the upper age limit of 65. As we get older, gradual changes occur in our muscles, immune system and other parts of the body. These changes can affect research measurements and make the results less precise.
NMCB is committed to improving diagnosis and treatment for all patients, regardless of age. We are therefore extremely grateful to everyone who follows and supports our work, including Ettie!
