Knowing ME part III

Muriael KeoghMuriael Keogh

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

I worked in PR for many years. In 1974 I opened a musical instrument shop in Covent Garden and later, I became my husband's manager in the music business. Life was very busy then. I had bundles of energy. While bringing up our two children, I was fortunate enough to be working from home.

Around 2015 I began to feel very tired; my body ached and I would sleep much more than usual. Various trips to doctors brought no answers. At that time, I was doing volunteer work every Tuesday at the British Heart Foundation shop on Wanstead High Street. I was coming home from the shop one day and found myself walking slower and slower until I came to a complete stop and could not move. I felt utterly exhausted. I eventually got home and slept for seven hours.

It was at this time I was diagnosed with ME (chronic fatigue syndrome). It was actually a relief to have the condition diagnosed as it was quite frightening not knowing what was happening to my body

ME robs you of so much in your life because you don't know how you will be feeling from one day to the next. I can be bed-bound on any given day of the week. It's a matter of wait and see how you feel when you wake up.

We refer to a bed-bound day as 'the crash', which describes it perfectly. Then you have 'the fog' – losing word power in the middle of a sentence and losing track of things and time. It's a real struggle and so very distressing when you were always a person who coped well in any given situation.

People with the condition often call me with regard to the support group. I hear how upset they are and their relief to find someone who understands what they are going through. There does not seem to be one common denominator with ME. People come to our meetings with their stories and they are for the best part all different.

I was in a lonely place with this condition until I found the East London ME Support Group in 2016. The first meeting I attended was actually meant to be the final one. But I decided there and then to try to carry it on as it was a lifeline for fellow sufferers. It helps so much to be with people who understand you and your changed lifestyle. The meetings help in so many ways. People feel less alone.

If you have a friend or relation with ME, please contact the group. It would be great to have some funding (I am working on that too).

My wish is to raise awareness of ME – more research is urgently needed. People's lives are being wasted.

The next meeting of the East London ME Support Group will take place at Wanstead House on 21 July 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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