Knowing ME

Ian PurserIan Purser

In the first of a series of articles by members of the East London ME Group, Ian Purser explains what it's like to live with an illness many believe is not real and why group support is so important.

It was 1986, and after a degree course, I returned to stay at my parents' house in Wanstead before going on to do an MA. I'd put up some shelves to hold the books I'd accumulated, and feeling tired after that, flopped into an armchair. When I tried to get up again, I was utterly without the strength to do so. I was shortly able to get up and collapse into bed, and the next morning had improved, but still felt thoroughly drained of energy and strength.

At the doctor's, tests were all negative; the only advice was to rest and wait for recovery (I'm still waiting). My body was on half-power: functioning, but only as long as I did nothing requiring exertion, strength or stamina – otherwise, fatigue would set in and muscles would ache painfully, with a stroll having the after-effect on my legs of a long hike. I deferred my MA for a year, then for another year, then gave up on it.

In the meantime, I'd found a name for my condition: myalgic encephalomyelitis (ME), which is also known as Chronic Fatigue Syndrome (CFS). I contacted the ME Association and got the phone number of the East London ME Group, which had just started meeting at Wanstead Library. I went along, have been going ever since, and am now one of the organisers.

It's impossible to overestimate the importance a support group can have for ME sufferers. The nature of symptoms and lack of a diagnostic test cause scepticism from some in the medical profession, the media (remember 'yuppie flu'?) and the public. Though the World Health Organization classifies it as neurological, the NHS continues to see it as psychological in nature. Obtaining ill-health benefits can be scandalously difficult, and ME sufferers have to battle all this as well as their illness – which makes meeting up with others going through the same struggles an important source of support.

I'm lucky – my ME has been stable and at a level enabling me to work part-time, but others have it much worse – some bed-bound, some suffering drastic relapses and some living in semi-darkness due to extreme light sensitivity. ME can devastate lives and families, and it's rewarding to help through group meetings and also information (I've made up an information pack for anyone interested).

Currently, the group meets every five to six weeks at Wanstead House, kept going by members' donations and Waitrose's green token scheme. We would love to offer more, such as a newsletter and monthly meetings, but our limited finances (and energies!) mean those are future hopes. But then hope – for more research, better treatment, even a cure – is what everyone with ME lives with.

The next meeting of the East London ME Group will take place at Wanstead House on 9 June from 2.30pm to 5pm. For more information, call 07957 152 566 or email This e-mail address is being protected from spambots. You need JavaScript enabled to view it

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