A highly successful fundraiser for cancer research told me that in the 1960s, when she began, the word ‘cancer’ could barely be whispered. But over years, thanks to the efforts of people like her, there was a sea change in awareness… We have to do the same — it is ground-level, back-breaking work, but only with data, data, data will be able to answer our critics AND solve the enigma of ME/CFS.
On 12 November 2005, ME Research UK Chairman Dr Vance Spence gave a talk at the Oak Tree Court Conference Centre, Coventry, at the invitation of the Warwickshire Network for ME. This event was enthusiastically supported by a number of local ME groups, in particular the group from Solihull and South Birmingham.
Warwickshire Network for ME is based in Rugby and Coventry, but networks throughout Warwickshire and beyond! The group actively supports biological research into ME and campaigns for appropriate services for people with the illness. As many of the group are housebound and from a wide geographical area, a group e-mail/telephone contact list and a quarterly newsletter enables the severely affected and the housebound to be in contact with others locally. Network co-ordinator Duncan Cox said, “
We wanted to help spread the word about the very latest biomedical research findings and the funding challenges that lie ahead — what better way to do this than to hear first hand from an internationally respected researcher in the field of ME/CFS.”
The Oak Tree Court Conference Centre, at the Binley Business Park in Coventry, is home of the Coventry and Warwickshire Chamber of Commerce, and was an ideal venue for the people who had made the journey — from as far afield as Dawlish in Devon, Winsford in Cheshire, Stowmarket in Suffolk, and West Sussex. Although the majority of the audience were people with ME and their carers, there were several doctors and others involved in local ME/CFSservices present, as well as the MP for Rugby and Kenilworth, Jeremy Wright.
The meeting was introduced by Andrew Mushing, whose wife Sarah is a member of the Warwickshire network and has suffered from ME herself for 12 years. Vance then took the floor, followed by a question and answer session during which he fielded over 35 questions from the audience.
At the end of the meeting a very personal and poignant message was read out from a person with ME who could not attend the meeting but who supported the standing order appeal: “
Only published biomedical research is going to help us with what I think are our most significant problems: lack of help and understanding from the medical profession; lack of treatments; lack of help from government agencies; the perception amongst family members, friends and the media that this is not a serious illness — with sometimes devastating consequences for the person’s life.” Duncan Cox adds, “
By the end of the afternoon many people felt inspired by the work that ME Research UK were doing but also felt frustrated at the lack of funding for biomedical research. Since the meeting several people have been sufficiently encouraged to take out standing orders with ME Research UK to help support their important research programme. We were also pleased that the event itself raised £400 for the charity.”
Many thanks to everybody who contributed to making it a very successful and thoroughly worthwhile afternoon.