Journal of IiMER Volume 13 Issue 1 Invest in ME Research As for paediatric research - well, the less said about that the better. We have commented before on the appalling SMILE trial and on pyramid businesses that are unregulated, unaccountable and unscientific. Junk research that attracts funding thanks to a rigid system that defies any logic or concern for children. It also recreated the social relationships. We feel that it also educated other children – and their families, and teachers and possibly SENCOs. No Isolation & Invest in ME Research Removing isolation Most of the effort from Invest in ME Research in recent years has been aimed at trying to get research into ME started that looked at the long term. However, we have also looked at other issues – the consequences of ME. One insidious consequence is isolation – affecting young and old patients. Little had been done to tackle this. This year we wanted to change how young people may be affected by this. A disease such as ME presents many challenges to a patient and to a family. It can provide challenges also to schools when a child or young person is unable to continue full time education. In such situations families can find themselves on the receiving end of the ignorance about ME that pervades our society where social services and education authorities may use a one-size-fits-all attitude to treating families where the child must remain at home. Children and youths with long-term illness such as ME do not need to be excluded from their friends’ activities and progress and schools have a responsibility not to ignore them – something which can otherwise lead to long term discrimination. We started a trial of remote participation by working with Norwegian company No Isolation to conduct a trial for young people with ME and the results were very good. This trial not only facilitated the re-connection of young ME patients to their schools. Invest in ME Research (Charity Nr. 1153730) No Isolation is a Norwegian-born start up founded with the aim of reducing loneliness and involuntary social isolation through the creation and implementation of warm technology. Its first product is a physical avatar named AV1, which allows children and young adults, who are forced by illness to take extended time away from school, to maintain a presence in the classroom and communicate with friends. In 2017, to expand the number of children it could help, No Isolation launched in the UK, and today, over 900 children use AV1 across Europe. While in the Nordics, AV1 was largely used by children suffering from leukaemia; however, since its arrival in the UK, AV1 has fast become an invaluable lifeline for children with Myalgic Encephalomyelitis (ME) thanks to Invest in ME Research. One of the UK’s most avid users is 15-year-old Makayla Nunn, who was first diagnosed with ME aged eight. Makayla was introduced to the technology through the trial arranged by Invest in ME Research. Her family and school saw how essential AV1 had become to help Makayla maintain the increased attendance in class, and subsequent increase in grades and social confidence. Makayla has been using her AV1, who is lovingly named Robbie, for well over a year now. There is no better way to explore the AV1’s success in transforming the life of someone with ME, than to speak with a real-life user. Ahead of this year’s Invest in ME Research conference, we caught up with Makayla and her mother about their experiences with the technology. Hi Makayla, can you tell us a little bit about your journey with ME? I was diagnosed with ME at eight years old, and since then I have been unable to attend school full time due to tiredness, flu-like symptoms, and brain fog. I also suffer from hyper-mobility syndrome, meaning that it often hurts to move my joints, and POTs (postural orthostatic tachycardia), which causes a spike in my heart rate, leading to dizziness and fainting. As well as missing out on school, I had to give up sports and hobbies, including dancing and investinme.org Page 39 of 52
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