Invest in ME Research newsletter, November 2017: Removing isolation from young people with ME
IiMER invites families that:
- have a child who has been forced to stay at home due to ME,
- and who would like to participate in a trial of a robot at their school
- and work with IiMER and No Isolation to describe the results, then please contact them.
There will be three robots to trial.
About the project:
The Norwegian start up – No isolation – has developed a robot that helps children and young people with long-term illness participate in the classroom on their own terms.
Initially, a trial of three AV1 robots will be set up involving families who currently have a child with ME who is unable to attend school, or whose regular attendance is compromised by ME.
Children and young people 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 lead to long term discrimination.
The robot, called AV1, acts as the students’ eyes, ears and voice in the classroom on days where they cannot be physically present.
The student controls the robot with an app on a tablet. When the student raises their hand, a light flashes on AV1’s head.
The robot can be turned 360 degrees, so the student can see the entire classroom and talk to other students.
If the student does not feel like actively participating, they communicate it by turning on a blue light on AV1’s head.
Research fellow Jorun Børsting and senior lecturer Alma Leora Culén at the Institute for Informatics, University of Oslo, are researching the technology needs of ME-patients. Having studied the use of AV1 among nine children and youths suffering from ME they see a big advantage in the fact that the robot is designed with ME-patients in mind. Børsting stresses that the robot cannot fully replace normal attendance at school or home teaching, but act as a supplement.
More info in November newsletter 02380 643736 or email at info@investinme.org
Chronic fatigue syndrome affects between 836,000 and 2.5 million Americans, according to a National Academy of Medicine report. The disorder was thought to be psychosomatic until a 2015 review of 9,000 articles over 64 years of research pointed to unspecified biological causes. Still, no definitive diagnosis or treatment is available.
Dr. Michael VanElzakker is a Martinos Center research fellow affiliated with Massachusetts General Hospital, Harvard Medical School, and Tufts University. He has a background in neuroendocrinology and clinical neuroscience and is known for an influential hypothesis of ME (CFS) that centers on the intersection between the nervous and immune systems.
My multiple jabs, which were administered over the course of two months, went terribly wrong. Instead of protecting me against infections, the cocktail of vaccinations triggered an adverse reaction. What should have helped me travel the world prevented me doing so – and no one could tell me for how long.
As the opening credits roll on the documentary, Unrest, we see filmmaker Jennifer Brea lying on the floor of her bedroom, eyes glazed over, as she stares apparently peacefully at the camera. Then, with arms shaking, gasping for breath, she tries to pull herself up, managing only a few inches before she collapses back on the floor. Eventually she is able to crawl slowly to her bed, before dropping the camera, collapsing with relief and fatigue.
