ME/CFS AUSTRALIA (SA) INC
Registered Charity 698
PO Box 28,
South Australia 5007
266 Port Road,
South Australia 5007
Ph: 1300 128 339
ME/CFS Australia (SA) Inc supports the needs of sufferers of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome and related illnesses. We do this by providing services and information to members.
ME/CFS Australia (SA) Inc aims to keep members informed of the various research projects, diets, medications, therapies etc. All communication, both verbal and written, is merely to disseminate information and not to make recommendations or directives.
Unless otherwise stated, the views expressed on this Web site are not necessarily the official views of the Society or its Committee and are not simply an endorsement of products or services.
Shining a spotlight on mystery of ME
Sunday 27 May 2012
Shining a spotlight on mystery of M.E.
THIS week is ME Awareness Week [7-13 May 2012], and sufferers across the UK are hoping to raise its profile and fund research into the painful condition.
Myalgic Encephalomyelitis, also known as chronic fatigue syndrome (CFS) is a debilitating medical disorder which causes persistent fatigue and damages the immune system.
We spoke to two South Tyneside sufferers about the effects it has on their lives.
ME sufferer Nic Corr has spoken of how much the condition changed her life.
Miss Corr, of Abbey Drive, Jarrow, was living in Hexham – where she taught at a school for children with learning difficulties – when she was diagnosed with chronic fatigue syndrome in March last year.
She had to give up her independent life and move back in with her mum, Ann.
The 37-year-old said: “I began just feeling ill and, in September 2009, came down with a virus, and I’ve never really got over it.
“I carried on working, but struggled. Now I’ve been off since June, and it looks like I’m not going to be able to go back.”
Miss Corr, who uses crutches, added: “I don’t think people understand ME. They just think it’s an excuse, and that you’re just lazy. But I want people to realise that it is an illness.
“I’ve been lucky because I’ve had great GPs, both here and in Hexham, who have been very understanding. Other people take years to be diagnosed.
“There aren’t any tests for ME, so they have to eliminate everything else first.
“My life is completely different. I used to be an active person, but now just getting a shower and getting dressed exhausts me.
“It’s the unpredictably of it that I don’t like, not knowing if you’re going to be able to do anything that day. I just hope that people start to recognise ME for what it really is.”
SCHOOLGIRL Jessica Thompson used to lead a very active life ... and is now fighting hard to get it back.
As well as enjoying her studies, the 15-year-old attended the David Ducasse Performers Stage School, the John Christopher Theatre Company, and received stage, tap, modern and ballet dance lessons.
All that changed in November 2010 when she was diagnosed with ME – Myalgic Encephalomyelitis, also known as chronic fatigue syndrome.
She now struggles to get through her day-to-day life.
Jessica, who lives in Harton, South Shields, with her mother, Julie, 43, and father, Chris, 44, was so ill at one point that she hardly left the house for nine months.
She has recently returned to Harton Technology College for an hour or two each day, and is working towards her GCSE examinations.
In the past 18 months she has experienced everything the condition can throw at a victim, as well as the ‘social’ side-effects.
She said: “It was really hard at first. People just didn’t understand that there was something wrong with me.
“People were talking about me in school, saying I was just lazy or that I was off because I was pregnant.
“I just laugh it off now. It’s definitely made me realise who my real friends are, and that the ones who didn’t stick by me are people that I just don’t need.”
Jessica, who hopes to become a surgeon, says that having ME is about more than being tired all the time.
She also has a suppressed immune system, meaning that she catches every cold, flu and virus that is going around, and has a vitamin D deficiency, which has left her bones weakened.
She said: “I’ve really missed school, so it’s so nice to be back. I do feel as if I’m getting better, and that my life is getting back to normal.”
Mrs Thompson said: “She has good days and bad days, but you can never tell which is going to come next. Waking her up in the morning is really hard, and there are days she can’t get out of bed.
“She uses a wheelchair to get around most of the time because walking tires her out so much, but when people see her get up out of her wheelchair they scoff and say there’s nothing wrong with her.
“Doctors are paying more attention to it now though, and there is being more research done so, hopefully, more people are going to understand it.
“These are the years of her life when she should be gaining more independence and going out with her friends. Instead she’s got her mam with her. She just wants to be a normal teenager.”
Jessica has started having physiotherapy sessions and also sees a therapist, who specialises in children with illnesses.
She said: “My condition is very isolating, so being able to speak to someone who understand it really helps. I’ve just got to be aware that it’s going to get better.”
The above, with comments, originally appeared here.
The Shields Gazette had previously profiled Jessica and Julie Thompson in August 2011. We re-published the article here.
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