any friends and rarely manage to talk on the phone. My mother and many close family members have ME and we are afraid that I have inherited the disease. A little over a week ago I met my doctor at the paediatric clinic. It was an ugly experience for me. The doctor we met would not allow me or my parents to explain my situation and my symptoms. They only talked about psychiatry and how I should be «forced back to life». It was clear that they did not believe in me being physically ill. They did not want to hear about my symptoms because they did not want to «encourage me to be sick». They were totally against the school robot and home tuition because there are local children sick with cancer who do not receive such help. I think that is very wrong because I think it is equally bad for me to be too sick to go to school as it is for other sick children independent of the diagnosis. I am very confident in that I do not have a psychological problem. The PPT have also tested me quite thouroughly since last October and they confirm that there is nothing pointing to school refusal or my having something psychologically wrong. Despite this the doctor had decided even before seeing me that I was mentally sick. So I think that it is very hurtful and bad when a doctor «makes it sound like» I am missing shool for the rest of my life because I myself want to, and things will sort themselves out if only I push myself a bit. If the doctors had listened to me they would have known that I had pushed myself for two years until I collapsed. Just a month ago I was so sick that I just slept for many weeks. My mother had to wake me up regularly to get me to eat and drink. Luckily my mother has a lot of knowledge about exhaustion and I am a little bit better now even though I am still bed bound. I am fearful of going back to see this doctor. My next appointment is in a month’s time. My mother has explored possibilities of getting a referral elsewhere but it looks like children with exhaustion are treated in the same manner in most hospitals in the country. I think this is dreadful. When one gets sick as I did then it should be obvious to be met in a positive manner whilst in hospital. At least it should clearly be so that one is not disbelieved the moment one meets the doctor. I choose to give the doctor the benefit of the doubt and I think they would have treated me in a different manner had they had more knowledge. There is after all no doubt any longer that ME is a physical illness. Nevertheless, children with exhaustion, when there is a reason to suspect ME, are being treated as mentally ill. It is like rubbing salt in the wounds of children and their families who have it bad enough as it is. In my case the doctor has already, after the first appointment, gone as far as phoning my case officer at PPT and asked them to force me back to school. That will most probably make me even sicker. To become sicker does not only mean that I will be more exhausted. It also makes all of the other symptoms worse, such as extreme pain all over the body, nose bleeds, nausea, head ache, flu like feeling, sore throat, dizziness and much more. If it turns out that the symptoms were due to ME, as we suspect, then the chances of getting better will be reduced. It means that if I get pushed into using too much energy now then it may lead to my chances of never getting better or healthy - this is frightening when one is only 13 years old and has numerous plans for one’s life. I therefore think it is strange that the doctor will do this, long before I have a diagnosis – as the doctor is taking a huge risk on my behalf. I have been frightened ever since I came home from the hospital. I am worried that I shall miss all lessons at school now as I am not allowed to receive home tuition or use the school robot. I am also terribly scared of getting sicker than I am already, especially now that I have finally had some improvement. I know that you have previously engaged with ME patients. I think that is wonderful. Unfortunately, the situation for us children being investigated for ME and children who already have the diagnosis is critical – there is no expertise and no help available. It is urgent to improve our situation. I therefore ask you to address this so that we can get help soon. I am happy to contribute if there are any questions. With kind regards, Nicoline Invest in ME research (Charity Nr. 1153730) www.investinme.org Page 35 of 56
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