17 July 2014

Remembering Rob

Our thoughts are with the loving family of Robert Doyle, who sadly passed away on 6th July 2013. We first published this blog in memory of Rob on 4th May 2014, when his mother Diane had said, “Sunday is going to be hard as it is the first time we have spent his birthday without him. He would have been 31”. 
Robert Doyle 4.5.1983 - 6.7.2013
Rob fell ill with myalgic encephalomyelitis (ME) around 10 years ago and became well known by the name of “Knackered”in the online ME patient community. He helped to establish and run an internet forum called People with ME. This announcement on the forum was posted on Invest in ME Facebook group last year:

It is with great sorrow that we announce the loss of one of our own. Knackered, who was instrumental in establishing and running the People with ME forum, passed away on the 6th of July 2013.

A large gathering of family and friends including three members of the forum attended his funeral on July 17th. For most of the over 200 standing room only guests his passing came as a shock. For those of us who became his close friends with daily contact, we knew he had suffered severe complications over many months and had great difficulty in receiving proper medical care.

For the family and friends who knew him, Robert Doyle was bright and funny, thoughtful and intelligent, with a mischievous sense of humour, a ‘wind-up-merchant.’ Often wise beyond his 30 years, Rob was far too young to be lost to his family and friends who miss him terribly.

Rob’s sister has set up a page for charitable donations in his name at:


We miss our dear friend Robert Doyle

Tino, Joy Scobby, Beorc, Polly, Snow, Stuart, Flex, Hatshepsut

Rob at a family wedding
Rob's mother Diane knew that the forum had members from all over the world and that Rob made some lovely friends, not all with ME. Her response to the tributes from his online friends:

“First of all I would like to thank you all for being good friends with Rob, I don't think he realised how well thought of he was. Rob started with ME when he was about 21. At the beginning he coped going part time to uni and part time work. As time went on Rob's life changed, as you all know what it's like, never going to family parties and get-togethers. Most of his life was four square walls. He described his illness as having flu all the time. Last year he heard about a doctor in the Netherlands who was doing good things with ME sufferers. He was looking forward to going with his dad to see if anything could be done. Then at the beginning of this year things changed, he was in terrible pain he tried A&E, local doctors and even went private. He would have done anything for relief but none came. His own doctor more or less threw him out and said there was nothing wrong with him. He tried everything to no avail. No-one deserved to be treated this way. Just before he passed, he read about Lyme and wished he had known about it earlier. It's a shame he found no peace. Rob never lost his sense of humour. He was funny, generous, would do anything for anyone, and was looking forward to coming to the coast to live, but the NHS took everything away from him. All I can say is fight the NHS and the doctors try and stand up for your rights, and now and then think of Rob.” 

Rob with sister Rachael
Diane said that Rob had “asked that he didn't die in vain”. His sister Rachael created a JustGiving fundraising page and Facebook group and Rob's wonderful family, including sister Jo Ann, niece Lucy, and their friends set about a number of ways to raise funds for Invest in ME. This included selling the Christmas cards and calendars produced by our campaign in support of Invest in ME, wristbands, running raffles and collections at family events and, “anything else I can think of to make money for such a deserving cause, we just want to do something for others who suffer just like Rob”. She wrote:

In July I lost my younger brother Robert who suffered from ME. We're trying to raise money for a great charity that doesn't get the publicity it needs to raise the fund that so many deserving people in this country, and others, need.

ME stands for Myalgic Encephalomyelitis, And there are over 250,000 sufferers of ME in the UK alone, with around 25% of them being severely affected, in other words they're bed or house bound. with your help, we can help these people, and the their families.

Your donations will be a BIG help for such an unknown cause, no matter how small.

People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble. Invest in ME campaign to burst that bubble by raising awareness and funding high quality biomedical research into ME. To those donating, “ I cant thank everyone enough, this is a charity that is so close to us as a family”. 

Our team members join Invest in ME in expressing our thanks to Rob's family for allowing Robert's memory to be used to raise awareness of ME and help others. Our hearts go out to them. Rob is also remembered in the Spring 2014 Journal of Invest in ME and the 2014 Invest in ME Conference DVD (IIMEC9) is dedicated to his memory.

Robert Doyle - forever in our thoughts.

Robert Doyle 4.5.1983 - 6.7.2013