Ros Amor is a founder member of the Let’s Do It for ME team and has done a lot of fundraising for IiME despite being severely ill. She is currently still rather wobbly from a relapse at Christmas. As usual, for May ME Awareness week she came up with a suggestion she would like to do –
Guess the Weight of my Guinea Pig!
Guinea pigs have been a great source of comfort and companionship to Ros throughout her illness. Currently she cuddles her guinea pig, Herbert, while she is having her final medicines in the evening and he stays overnight in her room, as he has done for many years. It is well known that a number of severely affected youngsters enjoy similar ‘furrytherapy’.
UPDATE: The competition closed at midnight Sunday 15th May 2016 and the prize: Ethel, a hand knitted guinea pig (value £22) will be posted to the lucky winner Henry A. Thanks everyone for taking part and congratulations Henry!
A bit more about Ros..
When the Let’s Do It for ME campaign launched in July 2011 by a small group of people with severe ME (myalgic encephalomyelitis) to help raise awareness of the work by Invest in ME to establish a Centre of Excellence for ME and funds for the research, Ros made soft wool blue wristbands to sell for the charity, until her health took a turn for the worse and she was moved to a nursing home, fed by nasojejunal tube, where she spent her 21st birthday raising awareness and funds for Invest in ME with the help of the staff and her family. The article pictured below appeared in London Business Matters – the magazine of the London Chamber of Commerce – in December 2012.
The focus of the Invest in ME Centre of Excellence biomedical research strategy is the role of infection and the immune system. Most of the immune system is in the gut. Ros was 8 years old when she got ME after a gut virus. Our initial crowdfunding target of £100,000 enabled the 3-year foundation study on the role of the gut microbiome in ME to get underway in 2013. Our target increased to £200,000 in readiness to fund the next phases of this vital research.
One of the usual problems with ME research is that studies tend to be small and isolated, with promising findings not followed up by larger or replication studies. That’s what makes Invest in ME Research different. It is being carefully designed by leading researchers in their fields, intent on finding answers and establishing diagnostic tests & treatments for this complex, chronic, immune-mediated neurological disease. The latest stage involves the researchers visiting severely ill patients at home to take blood and stool samples.
The other major arm to the Invest in ME Research strategy is currently investigating the role of B-cells and autoimmunity leading to a UK clinical treatment trial of the B-cell depletion therapy, rituximab.