Dear ones, we recently had a report here about ME/CFS, which prompted Tanja to get in touch with us. Almost 4 years ago, the whole family was infected with Covid19, the two sons (now 7 and 12 years old) developed severe symptoms after the infection and were diagnosed with ME/CFS. Normal family life has been impossible ever since. In this interview, Tanja tells us exactly how the boys are doing and how she is coping with it all.
Dear Tanja, you have two children who are affected by ME/CFS. Please tell us about the beginnings of the disease.
In December 2021, we all contracted coronavirus, our boys were 3 and 6 years old at the time. After we had overcome the acute infection, more and more new symptoms appeared in the first few months after physical or mental exertion. There were symptoms such as circulatory problems, problems with breathing, temperature regulation disorders, weakness, morbid exhaustion, pain, memory problems, flu-like symptoms and, to this day, numerous other symptoms have been added.
The youngest child, who had only just started nursery school, was soon no longer able to attend nursery school normally. At some point, kindergarten became so exhausting that he could no longer walk at all and this condition continues to this day. Although he has started school, he is unable to attend school and only attends lessons remotely for a few minutes every day.
Because of his temperature disorder, it was agreed with the school that his older son would only attend school for 1 to 2 hours a day. After the first few days at school, he had a breakdown, so he stayed at home again for the time being. When he had halfway recovered, we tried school again, but only for one hour a day at first. Over time, however, more and more new symptoms appeared, so we reduced the attendance to three times a week for one hour in consultation with the school.
In February 2023, he was so unwell that he could no longer speak due to massive word-finding difficulties and the doctor put him on sick leave until the summer holidays. He is still very unwell, so he has been unable to attend school for two and a half years and can only take part in lessons via avatar for a few minutes a day.
We’ve had a proper diagnosis since June 2022, when we went to a university hospital and both boys were diagnosed with post-Covid, with the older boy ME/CFS in spring 2023 and the younger boy in December 2023.
How are your children doing today?
Our children are much worse compared to three years ago, they can no longer leave the house without risking a PEM (short for post-exertional malaise, which is a worsening of symptoms after little physical, mental or emotional exertion) or a crash, which can also occur 1 to 2 days later.
The symptoms have worsened, they now have over 30 different symptoms, which occur in varying combinations and are dependent on stress. They are both unfit for school and can no longer attend school. They now have a disturbed day-night rhythm, during the day they lie on the couch or in bed a lot.
The boys can only play or use media to a very limited extent, as this is very exhausting. We always have to make sure that they don’t go beyond their limits. This is hard for them because they are still children and would like to run around and play like other children, which is absolutely not possible due to their serious illness. The children live in social isolation due to the illness and have no friends; they both have care level 3 and need a wheelchair outside the home.
This illness has completely changed your family…
Yes, normal everyday life is out of the question. Shopping and visits to the doctor have to be planned precisely, nothing can be done spontaneously. My husband can work from home, which makes everyday life a little easier. We can no longer go on trips, go on holiday or do other leisure activities. We almost only leave the house for shopping or visits to the doctor.
My husband now has to do the shopping alone or with our daughter (12) because I have to stay with the boys as they can’t stay on their own. Unfortunately, we can no longer receive visitors as the joy of a visit leads to a massive deterioration in the children’s condition. I haven’t seen my mum/grandma for over a year and a half now, we can only talk on the phone. The last time we saw my parents-in-law was also a year and a half ago.
You have certainly sought help. How have you experienced the doctors over the past few years?
On the one hand, our doctors are very helpful and understand the illness, but on the other hand they are also helpless because they have reached their limits. In their day-to-day practice, they don’t actually have the time to look after affected patients properly, so care is also dependent on the doctor’s personal commitment. We are very grateful to our doctors for this.
We also received help from the self-help groups „NichtGenesenKids“ and „ME/CFS & Long Covid Elterntreff“, in which we learnt a lot. For the most part, we were very lucky with our doctors and hardly experienced any stigmatisation or psychologisation. But there are also many sufferers who unfortunately experience it differently.
Are there any therapies or medications that can help your children?There are medications that help our children, but they only alleviate the symptoms. There are no approved therapies or medications for the condition The medications they receive are mostly off-label medications, i.e. they are not approved for the condition and some of them have to be paid for themselves. Here we have doctors who go down this path with us.
How do you experience your environment in relation to the disease?We are in close contact with our school, which is very cooperative and responds very well to the condition and needs of our children. The teachers help where they can and are very committed. There are hardly any friends or acquaintances. Our neighbours and the village are helplessly uncomprehending. On the other hand, we have met many new people in the self-help groups and we are also in contact with some of them privately, which is good for me and helps.
What would bring you immediate relief?
Better treatment options, help with the authorities, doctors who have more time, care close to home, help with everyday tasks, help for a healthy sibling, no constant battles with the authorities, people who don’t question the illness
Is there any prognosis as to how the disease will progress?
As things stand, the prognosis is poor. The longer the disease lasts, the worse the prognosis…
What is this whole situation doing to you?
How am I doing…That’s a good question. It’s actually working…but I’m not hopeless, because I will never give up hope that it will get better. And I try to experience nice moments from time to time when I can just leave the house and go shopping with my older daughter, for example
What else is on your mind on the subject?
There needs to be a lot more education, especially with the medical service, doctors, schools and public authorities in general. More research funding should finally be made available. It is also important that this stigmatisation and psychologisation finally stops and what is also important to me is that there are no more reports of child endangerment, which are very common with this disease, or that mothers are no longer accused of Munchausen by Proxy syndrome (fortunately we have not experienced either of these yet)
