The following people were elected as committee members.
Chairman and Treasurer: Tony Golding
Secretary: Colin Parratt
Membership Secretary: Martin Sondergaard
Committee members: Catriona Courtier, Janet Freeman, Colin Parratt, Alex Duffie, Megan Arroll, Carolyn Appleby and Luisa Beck.
Chairman, Action for ME contact, ME Association contact, treasurer - Tony Golding on 020-8400-1904 (weekdays) and 020-8994-0989 (evenings and weekends). Tony@bedfordpark.demon.co.uk
Membership Secretary - Martin Sondergaard on 0208-840-9445 (After 2 pm only). mesh@talkingrobot.org
Library co-ordinator - Jason Campbell 020 8537 1724 jason@campbell87@ntlworld.com
Benefits Information - Colin Parratt 8995 5609
The following is an informal guide to some of the people who are active in running the group with a few background details.
I got ME in 1985 and had to take two and a half years off work but managed to return to full-time work after three and half years. I first became involved with the forerunner of Network MESH in 1988 and have been chairman since 1990. I've had three relapses since my original recovery - as a result of overdoing it - but recovered well, mainly because I now know what I'm up against and how to handle it. I took early (non-medical) retirement from my firm (in the City) in 1998 to write a book on the City. I'm also involved with ME at the national level and am a trustee of a recycling charity.
I've had M.E. for over 15 years. My M.E. has been about the same now for many years, never getting much better or much worse. My main symptom is fatigue, and sometimes my concentration is poor.
I'm not well enough to work, so I spend most days alone at home. My illness limits my social life, because if I go out to a social event this can lead me to feeling exhausted for two or three days afterwards.
I used to find that shopping for food would make me feel exhausted afterwards. So now I shop using an online supermarket, Ocado. I can recommend online supermarkets for other people with M.E.,
depending on how bad your illness is.
Fortunately most days I am well enough to use a computer. I spend a lot of time on my computer, doing research into Artificial Intelligence. I enjoy the work. I'm working on creating a chatbot, which is a computer program that you can chat to. My chatbot, Asimov, is on display at my website.
I have had ME since 1989 and joined NETWORK MESH in 1995 when I moved to Acton. I look after my daughter who also got ME when she was eighteen and is severely affected. I regularly attend the Ideas meetings and the Art Group and was the editor of the group's quarterly newsletter, OutReach, from winter 2002 to spring 2006. Before I became ill I worked as an Education Officer for the borough of Ealing.
I came down with M.E. gradually over a year. In July 1989 I went off sick from my social work job and was later medically retired. I had another career before that which was as a nurse. I first joined Network MESH in March 1990, helping to structure the meetings and make them more constructive. I was then involved with the group for about three years. During this time I helped prepare the first library list. We also had a Women's Group.
Whilst I kept up with the friends I had made, I left for a while to work on a voluntary Quaker-funded disability project. I also coped with divorce and moving house twice.
I came back to Network MESH a couple of years ago and was one of the people who started T.H.A.T. Fund, for which I am now one of the people to contact. I also attend the Ideas Group. I am most interested in living with ME so I have written various articles. A list of tips for Network MESH was published and sent out to new members some years ago but it is now out of date.
I used to be a mathematics teacher in central London. I have been sick since June 1988, although I did try to carry on working until December 1989. I spent the next two and a half years trying to get a diagnosis and to manage the illness. In September 1992 I joined Network MESH.
I have at various times contributed to, photocopied, collated and distributed the newsletter. I was one of the group who included Ian Maddick, Dinah Miller and Sue Heaven that met with newly diagnosed M.E. patients at Dr. Ash’s fatigue clinic at Ealing hospital. I have helped to organise the talks with Dr. Richard Bruno and Dr. Nancy Frick, Dr. Betty Dowsett, Jane Colby and Marilyn Howard from Disability Alliance. I have represented Network MESH at two health authority “ health fairs”. I keep in contact with the relevant voluntary organisations and MPs in Hounslow Borough.
I've been with the group since about 1991, and have always enjoyed taking part. I took part in the Ideas group edited the newsletter, then did the library, and had many meetings at my house, including visiting speakers, Yoga for ME, a short course in music therapy group, and art therapy.
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