Based in Wanstead, the East London ME/CFS Support Group has been a lifeline for those living with chronic fatigue syndrome. Long COVID sufferers, like Tim Armitage’s wife, are also invited to join them
My wife, Sally, has had ME for the last six years. The effects of her condition are varied. There’s extreme fatigue, where doing even light work around the house or ‘just popping to the shops’ can wipe her out, muscle aches and weakness, sleep disturbance and cognitive dysfunction, where facts and figures that were once readily available are now difficult to remember.
After activity more strenuous than a short stroll, she experiences post-exertion malaise, meaning that at any time, from a few hours later to the next couple of days, she is exhausted. Her symptoms become more intense with no amount of sleep lessening the effects. She calls this payback!
Then, in 2020, she caught Covid.
This worsened her existing problems and added new ones on top. She now suffers from regular migraine attacks and an altered sense of taste and smell.
As a family with two teenagers, we’ve adapted. She and I used to be a partnership, splitting household jobs equally, but now most things fall to me. As someone who was always on the go, my wife has found this difficult. It’s one of many things that’s changed.
We have to limit social activities, dog walks and holidays. Everything is planned with precision. Public transport is often not an option and I have to drive and drop her close to the door. We also limit the time spent somewhere so she doesn’t get too tired, and sometimes I’ll go out with the kids on my own so she can rest at home. It’s not how we would choose life to be, but, unfortunately, it’s our new reality.
My wife likens living with ME to a smartphone that can’t be fully charged. Even if it’s plugged in all night, by morning it’s still only at 25%. And by lunchtime, it’s empty.
This forces her to make micro decisions about how she spends what little energy she has and how to programme in small periods of rest for recharging, simply to make it to the end of the day.
One thing that has kept her sane has been the ME support group she came across in 2018. They meet monthly, on Saturday afternoons at the Wanstead House Community Centre. They have been a lifeline. The informal drop-in group share their experiences and knowledge of having ME.
My wife wants to spread the word to anyone suffering from either ME or Long Covid that there is a supportive, local group waiting to help and listen to those who need it.
The East London ME/CFS Support Group will meet on 10 September, 15 October and 26 November at Wanstead House, 21 The Green, E11 2NT between 2.30pm and 5pm (free; donations welcome). For more information, call 07957 152 566