As a 19-year-old, Cecilia Blomqvist got strep throat on holiday – an illness she never really recovered from.
Four years and countless tests later, she was diagnosed with ME and today, 10 years later, she still lives with one of the world’s most disabling diseases.
– A terrible disease, says Cecilia.
ME stands for myalgic encephalomyelitis and is a neurological disease that makes you extremely tired and exhausted. Many patients are bedridden for days on end, the disease cannot be put to rest and there is no treatment that completely removes the symptoms. Many people get ME after a viral or bacterial disease, and in Cecilia Blomqvist’s case, the disease came as a result of a completely common strep throat infection.
– I was 19 years old, in the best shape of my life and looking forward to the future. But I got a sore throat when I was out train-hopping in Europe and since then I have never recovered, she says.
In the first years, Cecilia was able to live a fairly normal life, while she clearly felt that something was wrong with her body.
– I felt out of energy all the time and always got worse after I worked out or overexerted myself, which I later found out is a typical sign of ME.
The birth was the trigger
The same year that Cecilia got the disease, she met her current husband, Fredrik. It didn’t take long before they moved in together and got married and soon after that Cecilia became pregnant. Completely unaware of the risks a pregnancy would pose for someone with ME.
– I had a great pregnancy, but when I got milk congestion, everything was thrown upside down. Overnight I went from living a fairly normal family life to being bedridden 23 hours a day, says Cecilia.
Fredrik describes the time after his son Carl was born as shocking.
– It took a long time before we could begin to grasp what had happened to us, he says.
Not an unusual story
Jenny Lundgren, union chairman of RME, the National Association for ME patients, explains that there are many who live in the same reality as Cecilia and her family. Knowledge of the disease has long been deficient and, according to Jenny Lundgren, the care is not good at all.
– In several regions, people do not even believe in the disease and do not want to refer patients when they need to see a specialist.
However, as more and more people are affected, the understanding of ME has increased. RMF has seen outbreaks of more ME sufferers after every epidemic that has been and after the Corona pandemic, clear connections between ME and long-term covid have been seen.
– Unlike many others, we were not surprised by this, says Jenny Lundgren.
Despite ME patients having to fight to be heard and receive their diagnosis, research is progressing and RMF is working to spread knowledge about the disease.
– We want there to be a specialist clinic in every region in Sweden, she says.