- Megan Arroll (B.Sc., M.Sc., Ph.D., FHEA, C.Psychol., C.Sci., AFBPsS) is an experienced researcher who has worked in the fields of education, technology and most extensively health research. She has taught at numerous higher education institutions including The Open University and the University of Surrey. Megan’s specialty is research design and methodology and she holds a masters degree in Research Methods and Assessment. Megan’s Ph.D. concerned sub-grouping in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a condition that is close to her heart since her diagnosis with ME/CFS at the age of 14. Megan is currently a Chartered Psychologist with the BPS and a Chartered Scientist under the Science Council, a Fellow of the Higher Education Academy and holds a Visiting Research fellowship with the University of East London. Megan currently runs an independent research organisation, Simply Research (www.simplyresearch.co.uk).
- I have had M.E. since 1989 and joined NETWORK MESH in 1995 when I moved to Acton. My daughter also has M.E. I regularly attend the Ideas meetings 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 London Borough of Ealing.
Tony Golding, Network MESH Chair
- I came down with M.E. badly 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. Although I am much improved, M.E. is still with me and I still have symptoms. Since 2003 I have also been involved with M.E. at the national level as a trustee of the larger of the two national ME charities, Action for M.E.
Colin Parratt, Benefits Advisor
- 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 am currently responsible for the distribution of Outreach.
- I was one of the group who included Ian Maddick, Dinah Miller and Sue Heavens 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.
Martin Sondergaard, Membership Secretary
- 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 maintain the membership database for Network MESH.
- 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
Heidi Tyrvainen, Editor of the Website
- I was diagnosed with “Post-Infection Fatigue Syndrome” in the summer of 2007. At that time I was working in the IT department of an investment bank in the City. My health had been steadily deteriorating for about a year before my diagnosis; I was getting frequent colds which always seem to lead to a sinus infection. Although I had an operation to fix the sinus problems, my health just didn’t pick up after that and at the same time I was getting more and more tired. Eventually I had to stop working.
- I have tried various treatments and therapies available in the public and private sectors, including the NHS Chronic Fatigue Rehabilitation programme at Hillingdon Hospital, the CFS/ME Clinic that covers West London. Most of the treatments I have tried have helped a little bit, but not enough to make me significantly better. The most helpful treatment so far has been the Gupta programme.
- I contracted M.E. in 1992 or 1993. I was able to work a few years part-time before having to take a medical retirement in 1997. I became involved in Network MESH in 1996 and was treasurer for 7 years, as well as assisting with the newsletter. I had to take more of a backseat from 2003 when I started studying for my new career and I am now able to work full-time in my own business, although I still have to manage myself extremely carefully.