‘For years I haven’t been able to make a meal’: The Oxford Times, 5 May 2011

May 5, 2011

From The Oxford Times, 5 May 2011.

You have probably heard of ME/CFS ( Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome), and you may know someone with it — in Oxfordshire approximately 2,400 people are affected. But do you know what it is really like? ME/CFS is characterised by persistent and debilitating malaise/exhaustion, quite unlike ordinary tiredness or fatigue — made worse for some time after minor activity.

Susanna Geddes, who suffers from ME, said: “For 23 years, I haven’t been able to read a book, watch TV, or make a meal.”

The type and severity of symptoms can vary from day to day, and from person to person. They include muscle and joint pain, headaches and migraines, and problems with memory and concentration and there may be over-sensitivity to light, sound and smell. Another sufferer, Patricia Wells said: “I lay in a darkened room for five years — that’s about all I could do.”

All body systems can be affected, including digestion, balance, sleep, blood pressure and temperature regulation.

This year for ME Awareness Week (May 9-15) the Oxfordshire ME Group for Action (OMEGA) is planning a series of events, and the launch of a new Facebook page — Oxfordshire ME Group for Action. OMEGA is a friendly support and campaign group for people with this often confusing and isolating illness, and for their friends and families. One of OMEGA’s service users, Jo Breheny, said: “I have found OMEGA fantastic for support, guidance, fellowship and information. I like their positive outlook.”

Special events planned for the week are: Facebook launch and social: May 12, noon-2pm Shillingford Bridge Hotel; and socials at: Bicester (May 11, 11am Swan Pub, Church Street), Sandford on Thames (May 9, 1.15-3pm Four Pillars Hotel) and Grove (May 9, 10.30am-noon Cornerstone Coffee Shop). As well as these special awareness events, OMEGA has special interest groups and regular social events throughout the county and for those members (half) that are house-bound or bed-bound, OMEGA includes them through a regular newsletter, website updates, and a telephone contact list, members can also join their group on Skype. Jan Seed, OMEGA’s volunteer organiser, said: “We are able to do so much thanks to our great team of volunteers.”

To find out more about these events or to join OMEGA visit oxnet.org.uk/omega.

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