If you are a decision maker, here is what you urgently need to do: You need to bring funding for biomedical ME/CFS research up so it’s on par with comparable diseases (as an example, in the US that would mean $188 million per year). You need to make sure there are dedicated hospital care units for ME/CFS inpatients in every city around the world. You need to establish specialist biomedical care available to all ME/CFS patients; it should be as natural as RA patients having access to a rheumatologist or cancer patients to an oncologist. You need to give ME/CFS patients a future. Anne ended her letter with – Take care of each other. Love, Anne Anne’s Swedish ME/CFS newsletters, distributed via email to 2700 physicians, researchers, CMOs, politicians and medical journalists https://mecfsnyheter.se/ To Prime Minister Erna Solberg and any other relevant recipients An Apeal for help to a seriously ill child My name is Nicoline and I will soon be 14 years old. The last half year I have been too ill to go to school. For 2 years before this I was often sick with many infections. I really like school and I am what one would probably call a concientious pupil. For me it has been awful not to be able to go to school. This is my first year in secondary school and I had really looked forward to beginning to get marks. My plan is to study law in the future. Luckily I have had extremely good help from PPT (Norwegian educational psychology service) and the school. I have received a robot that makes it possible for me to take part in lessons at school when I am able to. I also have home tuition up to two hours a week. This has meant that I have managed to keep up with the most important subjects and this means a lot to me. The reason I am writing is that, unfortunately, I have met with a part of the system designed to help which does not function at all. I suffer from exhaustion and many other awful symptoms which mean that I am bed bound and isolated at home. I am mostly too ill to meet Page 34 of 56 www.investinme.org Invest in ME research (Charity Nr. 1153730)
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