On Friday 2nd June, No Isolation attended the 12th Invest in ME Research Conference (IMEC12) in London.
The conference was organised by the independent UK charity, Invest in ME Research. Their objectives are to initiate, maintain, and augment a strategy of high-quality biomedical research into Myalgic Encephalomyelitis (ME), to provide and promote better education about ME, and to raise awareness of the effects of the disease on patients and families.
AV1 – an exception
The charity does not normally advertise products or businesses, however when No Isolation contacted them, they immediately saw the parallels with ME and the opportunity to raise awareness of one of the least publicised side effects of ME/CFS in patients and their families – social isolation (1). No Isolation and AV1 were therefore invited to the conference.
AV1 was popular among the participants. Several had ME themselves, or family members with ME, and could easily see the benefits of AV1 for children and young adults with ME. For example, one conference participant told us that he developed ME when he was a teenager and that he would have been able to attend more classes if he’d had an AV1 in the period between being totally bedbound and returning to school.
Facts about ME from the conference lectures at IIMEC12
“ME affects 250,000 people and 25,000 children in the UK. For many, the disease is long-term.” – Professor Ian Charles, Leader of the Quadram Institute in Norwich, UK. He held the keynote speech at the conference.
“ME/CFS is in the blood, not between the ears.” – Professor Olav Mella, Haukeland University Hospital, Norway, is investigating the effects of Rituximab (a cancer medicine) in ME/CFS patients.
Researchers in the US are creating the first ever ME/CFS genetic database from participants all around the globe. They are currently recruiting ME patients and they need your data. – Professor Nancy Klimas, Director of the Institute for Neuro Immune Medicine, Nova Southeastern University.