Carlisle News and Star, March 5

Making up for lost time

Great-grandmother Elsa celebrates getting life back on track with ME support group

Story by Pamela McGowan

CARLISLE great-grandmother Elsa Champney lost years of her life through an illness that some experts still don’t believe actually exists.Myalgic Encephalopathy, or ME, causes severe and debilitating tiredness that can leave sufferers unable to perform even routine daily tasks.

But for years the condition – also known as Chronic Fatigue Syndrome – was met with widespread scepticism and has only recently been accepted as a real illness. But 63-year-old Elsa knows only too well how ME can drain a generally fit and healthy person of their life and lead to depression.

Now, after overcoming her own illness, she is working with a new support group, which aims to give hope to sufferers in the county. Elsa, who lives at Hebden Avenue with her husband Gerard, believes she was lucky because she had a doctor who recognised the symptoms. Some people spend years waiting for diagnosis. Early retirement – started in about 1995, while she was working for Carlisle City Council.

She originally had thyroid problems but a few months later she developed flu and never fully recovered. “I was so tired all the time. Everything was an effort. I was going home from work at lunchtime and sleeping,” she said. “One day I woke up and realised I just couldn’t move – I genuinely could not get out of bed. I didn’t know what to do or what to tell work.”

This went on for months, during which Elsa underwent tests to eliminate every possible illness before she could be finally diagnosed with effective treatment for the condition. She was forced to give up work as she simply couldn’t get up at a specific time.

“It was a tiredness like no other,” she said. “My body decided when I could and couldn’t do something. There was no way I could arrange to meet anyone or do anything in my own house. That made me very depressed.”

For years Elsa, who has two grandchildren and two great-grandchildren, put her life on hold. She gave up her hobbies and couldn’t plan any holidays, or even arrange to meet friends.

Then, just before her 60th birthday, her daughter Jacqueline arranged for her to see a nutritionist. Following a series of advanced food intolerance tests, she was put on a very strict diet – cutting out sugar, dairy, refined and fermented foods, yeast and fruit. Although difficult, Elsa stuck at it and saw her energy come flooding back.

By the time her birthday arrived she felt so good she held a party– something that would have been impossible just months earlier. Nowadays Elsa is a different person. She still gets tired but to a lesser extent and has even been able to go back to work part-time. She now has an afternoon post with Cumbrian Newspapers and finds if she takes things easy, she can live a relatively normal life.

"We go on holiday I have to take it easy but I’m fortunate because people understand. I feel so sorry for people who spend years trying to get diagnosed,” added Elsa. “I’m so grateful for these last four years because I felt so cheated between the ages of 52 and 60. I felt old before my time. Now I have my life back and I just hope this new support group will help others to do the same.”

The Carlisle ME/CFS Support Group was launched last month. It offers help to sufferers and their families, with the support of three top universities. As a result, it will be working closely with academics at the Central Lancashire (of which Cumbria Business School is a part), Northumbria and Manchester Metropolitan universities to carry out research into ME.

A workshop is scheduled for this month and will allow sufferers to drop in and out according to how well they feel on the day. For more information, contact Linda Danielis on 01772 895265 (work), 01228 562988 (home) or email her at lmdanielis@uclan.ac.uk

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.