Published Date:
08 November 2006
It's misunderstood, often misdiagnosed and there's no known cure. Once derided as 'yuppie flu', doctors are now taking Chronic Fatigue Syndrome more seriously. Katie Baldwin met a young sufferer and heard about his bid to raise awareness
SEVEN years ago, Matthew Jesmontowicz-Hill was like any other young man.
He had a job he liked, good career prospects and in his spare time played in a band.
But all that changed with a bout of glandular fever.
Like thousands of other teenagers, he was struck down by the virus at the age of 19.
Matthew didn't bounce back though – for months afterwards he felt terrible. It was only after two years that he was finally diagnosed with Myalgic Encephalomyelitis or ME.
Also known as Chronic Fatigue Syndrome or Post-Viral Fatigue Syndrome, it is often triggered by a viral infection such as glandular fever although the exact cause is unknown.
Matthew was working as an aircraft engineer at Leeds Bradford Airport when he got glandular fever.
"I was told to rest," he said.
"As time went by I did not seem to be getting any better. I was struggling to eat because my glands were so swollen and I was struggling to get out of bed. I just had no energy and my body ached all over."
As the months went by Matthew did not improve and found his GP could not help.
"I was put on anti-depressants by my GP and told to cheer up and exercise," he said.
"This is about the worst advice I could be given."
Confused about what was causing his ill-health, Matthew, from Farsley, tried to go back to work for a few hours a week but this made him worse.
"This had been going on for a few years and I had been to see a few different doctors," he said.
"One straightaway said 'you might have this' and told me about Chronic Fatigue Syndrome or ME."
Matthew was relieved to have been given a diagnosis. However he said medics lacked knowledge about the condition - one simply showed him the definition of the condition in a medical book.
He has tried a raft of different medication to treat symptoms including extreme tiredness and aching limbs.
Now he does not take any, preferring to understand more about how he is feeling and using complementary therapies to help.
"After a while my body had just had too much," he said.
"Now I know when I am starting to feel really bad so I can pace myself."
The effect on Matthew's life has been dramatic.
He has had to give up playing in a band and cannot work.
"At 26 I have had to let go of all my dreams I had and also had to give up enjoyable and promising careers in aviation and nursing," he said.
"I've tried all kinds of jobs but my body will only cope with them for a few weeks or months before I start to move backwards in my recovery.
"I have managed to achieve one dream, which is to have my own beautiful family, and this alone stops me giving up."
He said wife Iwona and eight-month-old daughter Lilianna help him cope.
Doting dad Matthew stays at home with the baby while his wife works.
"I've got a reason to get up because I've got her to look after – but there are days when I don't want to get up at all," he said.
Despite his illness he is determined to raise the profile of ME and help others like him. He said there were many misconceptions about the condition.
"Even people close to me say 'you are feeling down' but I'm not – I'm annoyed that I feel bad all the time," Matthew said.
"It was years before I knew what was going on and I've spoken to other people and they have had similar experiences."
His aim is to organise charity concerts to raise awareness of the condition and local support organisation Leeds and District ME Group.
"My ultimate aim as well as the charity events is hopefully an album featuring local bands or musicians who suffer from or have experience of ME," he said.
"But I also want to raise awareness among the medical profession so we don't feel forgotten about."
l To give help or advice to Matthew, contact littlebear1918@hotmail.com.
More information is on the Action for ME website www.afme.org.uk, the ME Association site www.meassociation.org.uk or the Leeds group at www.ldmeg.org.uk.
katie.baldwin@ypn.co.uk
Chronic Fatigue Syndrome – the facts
l ME affects about 240,000 people in the UK or one in 250 people
l According to figures from 2004, 20,263 people are estimated to be living with ME in Yorkshire and the Humber
l It can affect people of any age including thousands of young people.
l Symptoms vary but can include: extreme fatigue which is much worse than normal tiredness, muscle and joint pain, headaches, swollen glands
concentration and short-term memory problems, sleep difficulties, stomach problems and sensitivity to light and sound
l The cause is unknown though viral infections like glandular fever and viral meningitis can trigger the condition - one in 10 people with glandular fever develops ME symptoms.
l Effects can be devastating - sufferers may not be able to continue in education or work, social and family life may be affected and up to 25 per cent of sufferers are housebound because of it.
l There is no specific treatment though drugs can be given for individual symptoms. Changing diet and complementary therapies may help.
l The Government formally recognised the illness in 2002 and put in cash to develop services in the NHS. Treatment includes rehabilitation and doing slowly increasing amounts of exercise.
l One of the largest treatment centres in the UK is at St Bart's Hospital in London, which has treated more than 600 patients over the last 12 months with its combined "mind and body" approach.
l Sufferers may never recover fully.
Mouth cancer –be aware and catch it early
With 4,400 new cases of mouth cancer in the UK each year and 1,700 deaths as a result, Mouth Cancer Awareness Week which runs from Sunday (12) until November 18 is aiming to raise awareness of this serious and potentially fatal condition.
Survival chances are much improved with early detection so the number of deaths could be greatly reduced if more people were aware of the symptoms.
Mouth cancer can affect the lips, tongue, cheeks or throat and is more common in people over 40 who drink or smoke. The disease is twice as likely to strike men but alarmingly, the number of young people and women developing the condition has been increasing recently.
However, there are ways to reduce the risk and a healthy lifestyle is key.
In its very early stages, mouth cancer can be almost invisible, making it hard to spot but self-awareness and self-examinations can help.
It's important to know what to look out for. Mouth cancer can sometimes appear as a red or white patch but most often as a painless ulcer that doesn't heal.
Examine your mouth on a regular basis and if you have an ulcer that doesn't heal after three weeks or you see any unusual changes, visit your dentist.
Your dentist will also check your mouth for signs of cancer during a routine check-up, so it's important to make regular visits, especially if you are in the high risk group of those who drink, smoke or are over 40.
To reduce your chances of getting the illness:
* Smoking is the most common cause of mouth cancer and research has found that switching to low-tar cigarettes won't help. Give up with help from a local support group.
* Drinking lots of alcohol poses almost as big a risk as smoking, so cut down to the recommended daily limit.
* Avoid excess sunlight and ensure that you eat plenty of green and yellow fruit and vegetables like peppers, broccoli and bananas.
Jane Fenwick, director of marketing at LHF, said: "Mouth cancer is becoming increasingly common making regular dental check-ups very important.
"If it's money issues that prevent you from going to see a dentist regularly, an LHF healthplan can help by giving you money back towards the cost of treatment."
An LHF healthplan offers money back towards the costs of visiting a dentist as well as other treatments like chiropody, optical, physiotherapy, health screening and complementary therapy treatments.
For further information on LHF visit www.lhfhealthplan.co.uk or call 0800 056 0366.
All advice from British Dental Health Foundation. This information is intended as general guidance only and you should always consult your GP or other healthcare professional for specific advice.
-
Last Updated:
-
Source:
n/a
-
Location:
Leeds