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More Long Covid patients contacting ME support group, says Newry founder

A new branch of Hope 4 ME & Fibro has started in Lurgan

The Hope 4 ME and Fibro Northern Ireland group

A new support group for people affected by ME, fibromyalgia and Long Covid has started in Lurgan.

The Hope 4 ME and Fibro Northern Ireland group is part of the Newry-based parent group of the same name.

It was set up in 2011 by Newry woman Joan McParland after she suddenly developed ME, or chronic fatigue syndrome, 23 years ago.

Just last month, Newry, Mourne and Down District Council hosted a reception for the group (main image) to mark it receiving the Queen’s Award for Voluntary Service – the highest award given to voluntary groups.

The support group has more than 2,000 members and over the years has campaigned for more awareness and research.

In the past three years, its membership has included growing numbers of patients with Long Covid, another post-viral condition.

Speaking of her illness, Joan said: “I have never known anyone to fully recover from ME but you can improve. If you try to push through this illness, you end up the way I did and that’s pushing yourself into severe ME.

“That’s something we highlight all the time in our educational events.

“There are now about 50 per cent of Long Covid patients meeting the criteria for ME. Some of them have been sick for three years now. We have one nurse from Belfast, Rebecca Logan, on the committee. She is in a wheelchair two and a half years after a mild Covid infection.

“People have no idea what a post-viral illness can do. Mine was a mild virus and I thought I would be back to work in two or three days. Twenty-three years later and I’m still lying in this bed.”

Joan said the support group – a lifeline for many – is now being contacted by doctors for advice on Long Covid and its symptoms.

“I set up the group because I felt I was the only person on the planet like this,” she said. “Now we are working with World ME Alliance to try and educate doctors here.

“I think research on Long Covid will find answers to both it and ME. They are looking at the immune system and the brain. It’s only a matter of time.

“Governments are now pouring millions into research because it’s mainly healthcare workers who are left with Long Covid. It’s all doctors and nurses who are coming to us.

“I am extremely lucky that I have excellent family support. I couldn’t do what I do for the charity without them.”

Meanwhile, Lurgan woman Rosalind McKinley will be facilitating the new group.

The mother-of-one, who is 50, has had fibromyalgia for “at least 20 years”.

She said: “It causes a whole list of problems, from pain to fatigue to issues with concentration.

“There are some people who have both ME and fibromyalgia.”

However, Rosalind said she had benefitted greatly from the main support group, of which she is a member, and was more than happy to facilitate the new group.

“The resources and the support the group has given me for a number of years now is outstanding,” she said.

“No other group I have been involved in has ever given me the same support.

“It is very much a positive group and this sub-group will be the same.

“There is going to be a structure to it, which is very much about helping each other, and the hope is that there will be sub-groups in other towns.

“The plan is to have regular speakers. At the main group we have had physios and occupational therapists come to speak as well as advice on benefits, and this is the plan for the new group too.

“This month, we had someone talking on sleep and we have had pharmacists looking at the whole medication side.”

The new group meets on the last Thursday of every month from 7pm-8.30pm at Emmanuel Church in Lurgan, which is disabled-friendly and has accessible parking.

Carers and family members are also welcome.

Anybody wanting to find out more or join the new group should contact Rosalind on 077 144 73708. Alternatively, send a message to the main group by emailing hope4mefibro@outlook.com or by Facebook Messenger.

 

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