IMAGINE the isolation you've been living with became your new normal.

You're unable to meet a friend for coffee, go to your favourite restaurant or travel on holiday.

Your job becomes uncertain and you live your life on permanent lockdown.

This is what life is like for many of the 4,193 adults, children and young people in Cheshire and Wirral living with the serious neurological condition, Myalgic Encephalomyelitis (M.E.).

Kathy Simms, 58, from Wistaston, Crewe, has shared her story with UK charity Action for M.E.

She was diagnosed with M.E. in September 2019 by which time she had become pretty much housebound.

Kathy has recently been approved for medical retirement from her job as business manager at a large primary school in Stoke-on-Trent.

“I was a very social and active person, I have two grown up daughters and a three-year-old grandson, and I’ve always worked.

"I love my job in a school and the difference I can make by doing a good job.

"Giving up work has been the most difficult decision, I feel I’m too young to retire and still have a lot to give, I just don’t have the energy or the physical or cognitive ability to work now.”

M.E. affects people’s bodies and brains ability to recover normally after any activity, physical and mental, and however small.

On top of the significant daily challenges this presents fluctuating condition presents, much of the support and services people with M.E. in Cheshire have come to rely on – such as supermarket deliveries or carers providing personal care – have disappeared overnight.

Wirral Globe: Kathy on her 35th wedding anniversary - the same month she was diagnosed with M.E.Kathy on her 35th wedding anniversary - the same month she was diagnosed with M.E.

“We have been contacted by people with M.E. in truly desperate situations,” explains Sonya Chowdhury, Chief Executive, Action for M.E.

“So we set up our new Crisis, Support and Advocacy Service to meet this urgent need, sourcing practical local assistance such as help with shopping and picking-up medications, connecting people with peer-support, and advising on the ongoing changes to welfare benefits.

“So far, we have seen a three-fold increase in requests for urgent support – all at a time when our income is expected to drop by at least 50%. Like many other organisations and charities, we made the difficult decision to furlough several staff.

"We are continuing to make critical decisions to ensure we are here for people with M.E., now and in the future.”

For M.E. Awareness Month throughout May, the charity is encouraging people with M.E. to share their insight and experience when it comes to living with uncertainty and isolation, with the aim of shining a spotlight on this hidden condition.

Kathy said she was managing to cope through lockdown: "We were already having food deliveries from a supermarket and I don’t go out very much anyway.

"Life hasn’t been too difficult for us. We’re very lucky to have lots of support from family and friends.

"I posted a message on Facebook at the very beginning of lockdown telling family and friends how I had coped with nearly six months of being at home all the time and lots of positive ways to deal with it.

"I continue with that positivity and try to message, ring or FaceTime as much as possible to reach as many friends and family so we can all get through this together.”

Anyone living with or caring for someone with M.E., of any age, can contact Action for M.E.’s Crisis, Support and Advocacy Service by email at questions@actionforme.org.uk or call on 0117 927 9551.