<rss version="2.0"><channel><title>M.E Sufferers Malta News List</title><item><title><![CDATA[You can do it says Mark]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=106f38f4-dcff-4571-baa2-0513b5915642#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Lydia Tipple<br />
<br />
<a href="http://www.thisishampshire.net">www.thisishampshire.net</a><br />
<br />
WHITCHURCH man who used to suffer from ME - known as chronic fatigue syndrome - is tackling a triathlon to give hope to other sufferers.
<p>Mark Lutring, from Micheldever Road, will be doing the Andover Triathlon at Farleigh School, Red Rice, on Sunday.</p>
<p>The 40-year-old suffered from the illness for about 10 years and has now been healthy for 18 months.</p>
<p>Mark decided to take part in the 440-metre swim, 18.6-mile (30km) bike ride and 4.6-mile (7.5km) run so other sufferers can look at him and see hope for a full recovery.</p>
<p>"It's the ultimate endurance event and if I can recover and do this then so can everyone else," he said.</p>
<p>Mark said the road to recovery is not an easy one as once people are well again it's hard not to relapse.</p>
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<p>Mark, who is now completely free of chronic fatigue syndrome, has taken part in two triathlons and is determined to get the message across.</p>
<p>"I want people to see me do this and realise that there's hope out there for them too.</p>
<p>"You don't have to live with ME for the rest of your life, there is a light at the end of the tunnel," he said.</p>]]></description></item><item><title><![CDATA[Awareness grows about chronic fatigue]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=11e0c86e-7cb3-4ada-8fff-e7db6ae50232#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Helen Henderson<br />
<a href="http://www.thestar.com" target="_blank">www.thestar.com</a><br />
<br />
Kayla Scott was 21, in her second year at university, when things started going wrong. She was a good student, a healthy athlete and embarking on a relationship with a guy who would turn out to be one of the mainstays of her life.<br />
<br />
But no matter how much rest she got, she couldn't shake a fatigue so profound she was unable to think straight. Her head felt full of cotton. Reading, writing, focusing, even thinking, exhausted her. She had severe sleep problems.<br />
<br />
"I had become a completely different person pretty much overnight," she says. <br />
<br />
Her family doctor suspected she had chronic fatigue syndrome (CFS). That was the good news. Getting an official diagnosis and finding a specialist to help her treat and manage the disease was something else again. <br />
<br />
Now, at 24, she wants others to hear her story. Her aim is to help bring the syndrome out of the shadows into a place where society no longer treats those who battle it as malingerers because they don't "look" disabled.<br />
Late last year, the Centers for Disease Control in the U.S. mounted a federally funded multi-million-dollar information campaign to acknowledge chronic fatigue syndrome as a "real disease." This country is still evaluating the situation, says a spokesperson for the Public Health Agency of Canada, whose mandate includes working with the provinces on "effective efforts to prevent chronic diseases."<br />
<br />
That means CFS, formally known as ME (Myalgic Encephalomyelitis), is being included in some public-sector brainstorming sessions and surveys. (On a self-reporting basis two years ago, 331,526 Canadians, or 1.2 per cent of the population, told Statistics Canada they had it.) And in Ontario, a ministry of health spokesperson says provincial health insurance would cover services for someone whose doctor requested them under a CFS diagnosis.<br />
<br />
But reaction is still very much hit-or-miss from employers, insurers and schools, not to mention friends and family. And the disease, thought to be triggered by a virus, still defies a cure.<br />
<br />
"We've come a long way in the 16 years since I diagnosed my first patient with chronic fatigue syndrome," says Dr. Alison Bested, who has been treating Scott. <br />
<br />
Together with naturopath Tracey Beaulne, with whom she shares a practice (thedoctors.ca), Bested specializes in patients coping with CFS, fibromyalgia and multiple chemical sensitivities. Bested and Beaulne offer an eight-week session based on the Harvard mind-body course for chronic fatigue syndrome<br />
The fact that the practice has an eight-month wait-list period for new patients is testament to the need out there.<br />
<br />
"We need to get the word out," says Bested. "We need to help doctors learn how to make a diagnosis."<br />
<br />
About 85 per cent of people who seek medical help for CFS are told: "It's all in your head," Bested says. But the disease is not only real, it can be treated, particularly if it's caught early, she adds. <br />
<br />
Today, Scott knows she is one of the lucky ones. She has to watch her diet and has learned to pace herself. But she most definitely has a life. <br />
<br />
She also draws strength from another young woman her age who shares her illness.<br />
<br />
"CFS is extremely isolating," she says. "People don't understand how much you're suffering because they cannot see it."<br />
<br />
Her new friend has been an enormous source of strength. "We exchange tips and console each other when we are really suffering." <br />
<br />
She also has had tremendous support from York University's faculty of women's studies and is about to start a new job.<br />
<br />
And she gained strength from a group of stalwart friends who stuck by her when others didn't understand. "Last year, when I slept 16 hours a day, they would come over and make dinner while I was sleeping." <br />
<br />
Now she feels it's important to speak out, to give others hope.<br />
<br />
"Not hiding has been important to me," Scott says. In March, she ran a half marathon – not something recommended for everyone with chronic fatigue but a measure of the hard work and patience she counts as success these days.<br />
<br />
For more information, see the Myalgic Encephalomyelitis Association of Ontario, <a href="http://www.meao-cfs.on.ca/about_me/index.shtml" target="_blank">meao-cfs.on.ca/about_me/index.shtml</a>; the International Association for Chronic Fatigue Syndrome aacfs.org; the Journal of Chronic Fatigue Syndrome at <a href="http://www.cfs-news.org/jcfs.htm" target="_blank">cfs-news.org/jcfs.htm</a>.<br />
<br />
You may email Kayla Scott at <a href="mailto:ironbelle5@yahoo.ca">ironbelle5@yahoo.ca</a>.<br />
<br />
The Health Council of Canada is also inviting Canadians with chronic health conditions to talk about their experiences online. If you'd like to contribute, check out <a href="http://www.healthcouncilcanada.ca" target="_blank">www.healthcouncilcanada.ca</a>.]]></description></item><item><title><![CDATA[Degree success for ME woman]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=28dcafa5-e4c7-4a1c-b637-620ef6ec8c5a#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Lindsay Holder<br />
<br />
<a href="http://www.malverngazette.co.uk">www.malverngazette.co.uk</a><br />
<br />
OR many students, their graduation day is one of the proudest of their lives, but for one Malvern woman, it was extra special.
<p>When Rev Jenny Furber accepted her treasured Open University degree, she realised she had overcome a huge list of obstacles many would find impossible.</p>
<p>Rev Furber, 56, of Christchurch Road, suffers with Myalgic Encephalopathy, commonly known as ME, which causes chronic fatigue, and makes everyday tasks a struggle for sufferers.</p>
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<p>She joined hundreds of fellow students for her graduation in Cheltenham, and was awarded a Bachelor of Arts open degree, a mixed qualification, unique to the Open University, of arts and science subjects.</p>
<p>"I was absolutely thrilled to get it, it feels like a huge achievement," she said.</p>
<p>"It was extremely hard work, because you don't have anybody to teach you, it's up to you to teach yourself."</p>
<p>Rev Furber's condition makes it extremely difficult to type essays, so she was given a voice activated computer system and tape recorded lessons by the Open University.</p>
<p>As making her way to exams was a huge strain, she was also allowed to sit them at home, accompanied by a University invigilator.</p>
<p>"The Open University was really supportive, and it was ideal for me, as there was no way I could have made it to evening classes or tutorials," she added.</p>
<p>"My family were also extremely supportive, which made a huge difference."</p>
<p>Rev Furber, who runs a busy vicarage with her husband, Rev Peter Furber, said she enjoyed her studies so much, she plans to embark on another course.</p>
<p>"It's something that I do for myself, that helps me feel good."</p>]]></description></item><item><title><![CDATA[Understand ME, says Jessica]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=2ad89607-0b61-4881-a6fe-1e9e6b34b41f#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Marie Levy<br />
<br />
<a href="http://www.gazettelive.co.uk">www.gazettelive.co.uk</a><br />
<br />
<p align="" class="headtypea">A TEENAGER is calling for better understanding of ME in schools across Teesside.</p>
<p align="" class="headtypea">The move comes just weeks after the Association of Young People with ME (AYME) accused many local education authorities (LEAs) of failing to provide sick children with a proper education.</p>
<p align="" class="headtypea">Jessica Madden, 17, of East Cleveland, became ill with the condition when she was just 13.</p>
<p align="" class="headtypea">ME, also known as Chronic Fatigue Syndrome (CFS), is a neurological disorder that causes severe fatigue and muscle pain.</p>
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<p align="" class="headtypea">Jessica was struggling climbing stairs and with morning lessons, but just carried on as normal.</p>
<p align="" class="headtypea">“When I was too ill to go to school I had home tuition but this was really designed for kids that didn’t go to school and was not at a high enough level,” she said. “The teachers were fine but a lot of kids with CFS are high achievers.”</p>
<p align="" class="headtypea">The straight-A student started teaching herself but the condition made it difficult for her to handle the pressure of exams.</p>
<p align="" class="headtypea">She is now at Redcar and Cleveland College sitting the exams she missed.</p>
<p align="" class="headtypea">Jessica said some areas have a lot better facilities - such as online learning. But she said the biggest difference local authorities could make is training teachers to be more aware of the condition which can often go unrecognised.</p>
<p align="" class="headtypea">“A better understanding would make a huge difference,” said Jessica, who is aiming to go on to university. “I think the big problem is people don’t want to give you any special treatment.”</p>
<p align="" class="headtypea">Jessica said she is coping well at college because there is a more relaxed atmosphere but she still struggles to get up for early morning lessons.</p>
<p align="" class="headtypea">AYME’s chief executive officer, Mary-Jane Willows, said there are some great examples of good schools supporting pupils but there are also some heartbreaking stories.</p>
<p align="" class="headtypea">“It is every LEA’s duty to provide suitable education for children with medical needs and it’s no defence to say they can’t afford it,” she said.</p>
<br />
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<br />
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</div>]]></description></item><item><title><![CDATA[Hanna watches as life just passes by]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=33223b71-474a-4ee8-ad0a-8bbb78bbc3a1#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[<strong />by Emma Harris<br />
<a href="http://www.blackpoolgazette.co.uk" target="_blank">http://www.blackpoolgazette.co.uk</a><br />
<br />
SOME days 14-year-old Hanna McKearnen doesn't even get out of bed. But she is not being a typical 'lazy' teenager.<br />
<br />
Hanna, from Lytham, has been unable to go to school since last September and, some weeks, can't even manage to come downstairs from her bedroom.<br />
<br />
Hanna has ME – or Myalgic Encephalopathy – a debilitating disease which causes muscle pain and neurological problems.<br />
<br />
She has suffered from the condition for the last 18 months after it started in October 2005.<br />
<br />
Hanna said: "It started when I had just been swimming and I felt really tired. It wasn't a normal tired, I was really exhausted. Before that I really enjoyed sports, I used to like swimming, basketball and rock climbing.<br />
<br />
"At first I thought it was just a cold or 'flu bug. And when I went into school the next day, I had to come home. I felt so bad and really couldn't stay. I was absolutely exhausted; all my muscles were aching and I was in pain."<br />
<br />
Hanna battled on, going to school part-time, visiting doctors and having various tests carried out, before being diagnosed in April last year by a paediatrician at Blackpool Victoria Hospital.<br />
<br />
The teenager, who is a pupil at Lytham St Annes High School, said: "I was still going to school, but I could only stay for half days because it was too much.<br />
<br />
"I was going backwards and forwards to the doctors. But it got worse and I had to stop going to school last September."<br />
<br />
Hanna has a few hours of home tuition every week in three subjects – English, Maths and Childcare, something she is interested in as a potential career.<br />
<br />
She says she misses seeing her friends at school, but some come to visit her and she keeps in touch with others via the internet.<br />
<br />
According to the Association of Young People with ME, a third of children and young people with ME/CFS said they received no education, 18 per cent were in school part-time, 19 per cent they were receiving home tuition, 17 per cent were in college and others were participating in correspondence courses.<br />
<br />
Although life is hard for Hanna, is it also exacting for her mum, Karen.<br />
<br />
She is a receptionist who works 9am until 3pm, so she can be there for her daughter, but Hanna still spends a lot of time alone at their Kielder Court home.<br />
<br />
Karen said: "It worries me that she can't go to school. I worry about her missing her education.<br />
<br />
"She has good days and bad days. Sometimes she feels too unwell to get out of bed. I feel guilty really when I go out, because she doesn't go out much.<br />
<br />
"Some days she feels better and then wants to do things, but can end up tiring herself out.<br />
<br />
"It's hard because it's not like a broken arm where you know it's will be fixed in six weeks. You don't know when you will get better from ME. There's no treatment and no cure."<br />
<br />
Hanna, who sees a consultant once every few months and has physio weekly when well enough, has found support from the Association of Young People with ME.<br />
<br />
Hanna said: "I do find it frustrating sometimes that I can't go out.]]></description></item><item><title><![CDATA[ME left me feeling so tired - like I'd been hit by a train]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=39a8658b-7736-4969-9b7f-e97d080fff65#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[<strong />by Jenny Green<br />
<a href="http://www.echo-news.co.uk" target="_blank">http://www.echo-news.co.uk</a><br />
<br />
CHRONIC Fatigue Syndrome or ME has been dismissed in the past simply as fatigue. Sufferers will tell you, however, there's a lot more to the illness than feeling tired.<br />
<br />
The extreme exhaustion is often accompanied by an array of symptoms, ranging from frightening cognitive dysfunction to chronic pain.<br />
<br />
ME affects more than 250,000 people in the UK and is officially recognised as a neurological illness by the World Health Organisation.<br />
<br />
However, not many people understand what the illness entails and even less know that, at worst, it can leave sufferers reliant on wheelchairs and unable to look after themselves.<br />
<br />
The incurable illness, which often takes years to diagnose, can affect anyone, at any age but is most common in women aged 25 to 50.<br />
<br />
Awareness Month, Action for ME, a charity dedicated to raising awareness about the condition recently surveyed more than 2,000 sufferers to find out how the illness had affected them.<br />
<br />
More than three-quarters of those who took part in the report said the illness had affected their personal relationships and working life. A considerable number reported suffering from terrible headaches, dizziness and muscle pain.<br />
<br />
Paul Fox, a financial advisor of Heath Road, Grays, was diagnosed with ME in 2003 after experiencing "utter exhaustion".<br />
<br />
At one point, Paul struggled to walk without help and was too weak to lift his arms above his head to wash his hair.<br />
"It was a truly awful experience," said the father-of- two. "Before I was diagnosed, I was one of the people who thought ME was nonsense, so its a sweet irony I was hit with it.<br />
<br />
"Trying to describe it is difficult. If you can imagine yourself at your most tired and multiply that tenfold, you still wouldn't be close to how it feels. It's devastating. Like being hit by a train."<br />
<br />
As well as the exhaustion, he suffered from physical pain and a "mental fog", which made reading, talking and even watching TV a challenge.<br />
<br />
In 2002, Paul suffered a breakdown, but after recovering in hospital he found he was getting more and more tired over a six to eight-week period.<br />
<br />
Because of the illness, he couldn't work for four years and he holds ME partly responsible for the breakdown of his marriage.<br />
<br />
"I just couldn't stop sleeping," Paul said. "I'd literally sleep all weekend to get ready for work on Monday and that still wasn't enough.<br />
<br />
"It was very difficult for my children. They went from having a very active dad who was a part-time officer for the RAF to having a dad who was literally in bed all the time, grey-faced, or shuffling around in his pyjamas.<br />
"No one ever said, I think you're putting this on', but I know plenty of people who went through an awful period getting diagnosed. Luckily, I had a very sympathetic GP."<br />
<br />
After spending "thousands, if not tens of thousands of pounds" on ME counselling and alternative therapies, Paul is in remission and believes reiki, a form of spiritual healing which originated in Japan, is to thank.<br />
<br />
He has also returned to work part-time and hopes that things are getting back on track.<br />
<br />
"I'm not cured, I know, but I feel I'm getting a second chance," he continued. "Before I tried reiki, I thought it was rubbish, but it has really helped me. And accepting what was wrong made a big difference, too.<br />
<br />
"Now I'm back at work and driving again, I feel so much better and I can start getting my life back together."<br />
Trish Taylor, chair of Action for ME, said: "Being a man with ME is not about soldiering on and pretending you are not ill.<br />
<br />
"It's about getting informed, getting diagnosed and getting help.<br />
<br />
"A significant number of men lose their home after falling ill, over half go through a divorce or relationship breakdown and many initially try to keep the illness secret from family or friends.<br />
<br />
"ME's financial cost to the UK has been estimated at £6.4billion a year, but the cost in terms of personal loss to those it affects is incalculable."]]></description></item><item><title><![CDATA[ME Sparks Awareness]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=43f492a7-a8e6-4c95-86c8-efe99d2f79c4#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Charlotte Newton<br />
Weekly News, Brentwood<br />
<br />
Charlotte Newton talks to ME sufferer, the Rev Philip Joy, about how his life has been altered by the mysterious syndrome that's now striking down children.<br />
<br />
Cynics dismiss it as "yuppie flu" - but for ME sufferers, their symptoms are all too real. Today, increasing numbers of children are being seen by paediatricians for ME - or chronic fatigue syndrome, as most medics prefer to call it - which has led many experts to argue the symptoms are genuine.<br />
<br />
The Rev Philp Joy, of Stock, has everything to be energetic for. But he has been bed-bound for five years. The 40-year-old's sallow complexion and muted speech suggest all is not well. Indeed, if he wants to go anywhere, he has to use his electric scooter, or go by car. For every 15 minutes of activity he completes, he has to rest for an hour.<br />
<br />
But this is not the way his life has always been. Formerly an Oxford scholar and professional cellist, he taught music in a prestigious public school, and then became a vicar. But in 2002, he was struck by debilitating fatigue, muscle pain and a mental fogginess, diagnosed by doctors as myalgic encephalomyelitis - ME.<br />
<br />
Nobody knows what causes ME, but microbiologists are examining whether it is related to a virus, stress, pollution, changes in the nervous system, or even a genetic disorder. Viral infections and stressful situations are the most common reasons given for the start of incurable, flu-like symptoms.<br />
<br />
In spite of his physical discomfort, the vicar is painfully aware of the effect his condition has had on his wife and children. He explains: "As with all long-term illnesses, this affects the whole family. It puts pressure on the wage-earner and means one person does all the housework. Meanwhile, I seem as if I'm slobbing around, which I'm not. But if I peel a carrot, it's an achievement.<br />
<br />
"I feel bad for my children, because I can't do what other parents do. I can't play football with my son or run around. But I do try and encourage them with their music because they're both gifted. So I've taught them how to play the violin."<br />
<br />
There is no known cure for ME, but the Rev has found he can alleviate his symptoms by striking a balance between rest and activity. He has learnt to manage energy-sapping activities. Avoiding alcohol, caffeine, and sugar can also help sufferers.<br />
<br />
ME is not contagious, and it is not a terminal disease. However, the length of time people suffer can vary greatly. Some patients recover after a year or so, while others suffer recurrent bouts.<br />
<br />
Three-quarters of sufferers are women, a figure in line with other immune system disorders. It is also more common in higher wage earners, which is where the term yuppie flu originates from. But some experts argue this could be because people in higher socio-economic groups are more likely to challenge doctors' findings and persevere until they get a proper diagnosis.<br />
<br />
Some doctors say there are similarities in their patients, who are often high-achievers and prone to anxiety. But the development of ME in children has increased public debate and forced sceptics to scratch their heads and wonder why healthy, happy children suddenly become bed-ridden.<br />
<br />
Dr Nigel Speight, 64, works at the University Hospital of Durham and is a leading paediatrician on ME. He has been interested in the condition for 20 years. After seeing more than 500 children suffer from it, Dr Speight is convinced ME is a "primarily physical illness", often triggered by an infection that lingers in the body. He has seen children of all social classes affected by it and firmly believes British doctors need to wake up to the reality of the syndrome.<br />
<br />
"For too long, the idea that this is somehow a psychiatric problem has dominated the British medical profession," he says. "But why would a happy eight-year-old choose to spend all their time in bed? The symptoms are real and impossible to ignore."<br />
<br />
Dr Speight reckons medical research needs to be done in the UK to find out what is causing ME, because there have been clear epidemics around the world over the past century - in California in 1934, Iceland in 1947 and north London in 1955.<br />
<br />
Jane Colby, of Stock, is executive director of The Young ME Sufferers Trust.<br />
A former headteacher, Mrs Colby was first struck by ME in 1985, after a polio-related virus. She said: "It was dreadful. I lost part of my vocabulary and couldn't walk up and down stairs. I had severe back ache and my body started to smell." [So be warned, folks! Actually I didn't quite say that...]<br />
<br />
Spurred on by her own experience, in 1997 she decided to investigate the number of children suffering from ME, with Dr Elizabeth Dowsett, a retired consultant microbiologist. The research showed that, among the 885 individual sickness records received in six LEAs in Essex [sic], ME was by far the most common cause for absence from school (42 per cent overall, 33 per cent in staff and 51 per cent in pupils), followed by cancer and leukemia (23 per cent), surgical conditions (13 per cent) and musculo-skeletal problems (12 per cent), with all other causes accounting for just five per cent.<br />
<br />
Mrs Colby believes that more needs to be done to help children in mainstream education who suffer from ME. She proposes virtual learning from home, so children can rest in between lessons. In the meantime, she is determined to try and raise awareness about ME in children. So she has joined forces with the Rev Joy and organised a concert at Brentwood Cathedral on Saturday, May 12, from 8pm. All proceeds will go towards The Young ME Sufferers Trust.<br />
<br />
NOTE: The Trust is aware that there are several debatable medical statements in this article but these were not supplied by ourselves, nor did we make treatment recommendations. <br />
<br />
Jane Colby<br />
Executive Director<br />
The Young ME Sufferers Trust<br />
PO Box 4347<br />
Stock Ingatestone<br />
Essex CM4 9TE<br />
Tel 01245 401080<br />
<a href="http://www.tymestrust.org" target="_blank"> www.tymestrust.org</a>]]></description></item><item><title><![CDATA[Me, myself and I]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=47baf92d-fb7e-4368-95e0-c71bc44d52d6#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Vikki Rimmer<br />
<a target="_blank" href="http://www.bbc.co.uk">www.bbc.co.uk</a><br />
<br />
ME, chronic fatigue syndrome, Auto Immune Deficiency, whichever moniker you choose to use, none comes even remotely close to making sense of an illness that literally devastates life as you know it.<br />
<br />
Over the past 15 years of illness ME (Myalgic Encephalopathy) has robbed me of myself and, with the loss of control over bodily functions, has come the loss of self.<br />
<br />
I was a prisoner in my home, a prisoner in my mind, too tired to read a book for four years, with a curfew on the phone. A call couldn’t last longer than 15 minutes before exhaustion would lay me to waste. <br />
<br />
The biggest challenge in my day was to crawl on all fours from my bedroom to the bathroom to prop myself up against the vanity unit  to run water through my hair.  Could I face two rinses?  Would the conditioner bring my scalp up in red welts?  Should I even bother?  Who’s going to see me other than my carer? But continue on with my beauty regime I did.<br />
<br />
After considerable cajoling I agreed to a short hospital stay in order to undergo some experimental treatment from Dr Young.<br />
<br />
We nicknamed it "the Elvis trip".  In the morning we’d take three red pills which would make us whiz and grind our teeth as if we’d been given the best speed in London.  Then come bedtime we’d pop a purple pill and an anti depressant to try and bring us down for the night.  We were lucky if we managed three hours of straight sleep, but on the up side we did feel euphoric.  Euphoric enough to cope with the enforced exercise regime, where we were man handled on to treadmills and forced to peddle the exercise bikes in the gym.<br />
<br />
And for a while it worked. The headaches were a pain, but Dr Young had warned us that there were side affects to taking the medication.  Three months after our admittance we were as mad as a box of frogs, but were definitely bouncing about more than we had for years.<br />
We were discharged with a full prescription and instructions to keep cycling. <br />
<br />
The headaches were starting to get worse and it was getting difficult to sleep. The writing was on the wall – written  in blood. The night I started to bang my head against it in an attempt to knock myself out was the night that my boyfriend realised my headaches were more than just a little bit painful. I had a cat scan and the neurologist cleared me of brain tumours but told me I had to come off of the Elvis trip.<br />
<br />
It turns out I stopped the drugs just in time.  In America at least two people had died from aneurisms , preceded by severe headaches, while on the same drug as me.<br />
Without the speed in my system my body ground slowly to a halt.  The exercising stopped and my body reverted to its pre-hospital state of  total inertia. <br />
<br />
ME is like a slow death.  My skin looked as grey as a cadavers, my breath so shallow and my blood pressure so low I’d often fall if I got up.  But still, the doctors could do nothing other than tut and say, "well, you know sometimes people just spontaneously get better". <br />
<br />
Fifteen years on I’m still battling the ME, but it's not as bad as it was.<br />
<br />
Sadly if the medical profession continue to go down the ‘psychological treatment route’ then their awareness of what ME REALLY is will remain painfully tired. <br />
<br />
<strong>ME</strong><br />
It is estimated that between 0.2% and 0.4% of the population have ME/CFS. The illness affects all social classes, ethnic groups, and is twice as common in women.<br />
<br />
ME/CFS can occur at any age, even in children as young as seven. The commonest age of onset is between the early twenties and mid forties.<br />
<br />
Common symptoms include:<br />
<ul>
    <li>muscle pain and/or twitching</li>
    <li>joint pain but without swelling or tenderness</li>
    <li>on-going flu-like feelings</li>
    <li>headaches which may be migrainous in character</li>
    <li>problems with balance</li>
    <li>unrefreshing sleep pattern</li>
    <li>sore throats</li>
    <li>enlarged glands</li>
    <li>intolerance of temperatures extremes</li>
    <li>alcohol intolerance</li>
    <li>postural hypotension (low blood pressure)</li>
    <li>sensitivity to bright light and loud noise </li>
</ul>
<br />
With orthodox medicine failing to provide the answer to ME/CFS, many people turn to alternative and complementary therapies.]]></description></item><item><title><![CDATA[M.E. Matters]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=4e56a2cd-86f9-44ca-89fc-4ec04235914a#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Suzanne Bain<br />
Health And Beauty - <a href="http://www.surinenglish.com" target="_blank">www.surinenglish.com</a><br />
<br />
IMAGINE waking up feeling worse than you did when you went to sleep. Imagine being so tired and dizzy that walking to the bathroom and brushing your teeth drains you of all your energy, leaving you so weak you can’t even get dressed.<br />
<br />
That’s the frightening reality faced every day by many of the UK’s 240,000 M.E sufferers. <br />
<br />
While healthy people inevitably feel tired after a long day at work or a night out, those with M.E suffer fatigue so extreme even the tiniest amount of effort - or none at all - totally floors them.<br />
<br />
Some sufferers are so badly affected they can’t even leave their bed, let alone the house. “I got a little bit worse every day until it got to the point where walking up the stairs or running for the bus was a huge struggle,” explained Claire from Yorkshire. “The M.E crept up on me slowly but surely. Sometimes things weren't too bad but other times life was a massive battle and I felt really isolated. Leading a normal life was impossible.”<br />
<br />
<strong>Facts</strong><br />
M.E disturbs many of the body’s systems and their functions, particularly the nervous and immune systems. Severity varies from person to person and impacts differently upon each individual. <br />
<br />
It’s also a fluctuating condition, meaning symptoms - and how badly they strike - can change from day to day, week to week and month to month, making it difficult to plan ahead for big occasions like birthday celebrations and holidays. <br />
<br />
Certain symptoms are relatively common, ranging from headaches, difficulty concentrating and memory problems, to sore throat, swollen glands and digestive disturbances. Sleep difficulties are another problem, as is increased sensitivity to light and sound and an inability to properly control body temperature. Some people also experience slurred speech and have trouble taking in and processing information they see, hear and read, because their cognitive abilities are affected, while many are victims of excruciating joint and muscle pains or twitching. <br />
<br />
Chronic and cruel though M.E is, its debilitating effects are often compounded by ignorance and negative stereotypes, stemming from misconceptions about it being all in the mind, which can be traced back to the 80s when it was insensitively - and incorrectly - dubbed yuppie flu.<br />
<br />
<strong>Research</strong><br />
Thankfully, medical research since then means M.E is at last being recognised as the genuinely debilitating condition it is. Doctors and society are gradually changing their attitudes and starting to accept that symptoms are not some flight of fancy dreamt up to get attention. <br />
<br />
As it stands, however, there is currently no cure and no diagnostic test, so sufferers are often left with no alternative but to adopt a trial and error approach to finding treatments and techniques that help.<br />
<br />
Most NHS-backed initiatives tend to focus on managing the illness and limiting the damage it causes. For example, programmes of ‘pacing’ and ‘graded activity’ teach patients to recognise what exasperates their symptoms, then looks at ways to reduce their impact and avoid further deterioration.<br />
<br />
Medical and anecdotal opinion about the merits of such methods is divided. They certainly aren’t successful for everyone, nor do they offer complete fail-safe solutions, but for those they do help life becomes more bearable and recovery time may be sped up, although relapses remain a very real possibility. <br />
<br />
The charity Action for M.E (<a href="http://www.afme.org.uk" target="_blank">www.afme.org.uk</a>) is a brilliant resource for information, help, advice and support on everything from claiming disability benefits, to enjoying some semblance of a social life that doesn’t leave you wiped out for days afterwards. <br />
<br />
This year’s awareness campaign, running from May 7th to 13th, is focusing on male sufferers and carers, many of whom are wives and mothers who have had to become the main breadwinners for the family.<br />
<br />
Angela Murphy of the charity said: “Recent research suggests a significant proportion of men might have more difficulty getting an official diagnosis of M.E than women.” <br />
<br />
“We are interested in finding out why this might be and how the illness might affect men’s sense of masculinity, identity and relationships.” She added: “To dismiss and destroy the myths about M.E they have to be brought to light so the real impact of the illness is clearly recognised and effectively dealt with.”<br />
<br />
At last M.E is coming out of the shadows and being seen as the complex, genuine, real condition it is. No longer should it be sidelined, ignored, forgotten about or dismissed as unimportant or a figment of sufferers’ imagination. <br />
<br />
M.E isn’t make-believe and isn’t solely about ‘feeling a bit tired’. It’s far, far more than this and the sooner we sit up and take notice, the better.]]></description></item><item><title><![CDATA[John's Active Life Haulted By Illness]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=6966e578-40b5-40f5-9026-4a7cbce6102d#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Joel Cooper<br />
<a href="http://www.thisisnorthdevon.co.uk"><br />
www.thisisnorthdevon.co.uk</a><br />
<br />
<span class="article"> A barnstaple man who has suffered from Chronic Fatigue Syndrome (CFS) for the last 19 years has been speaking out about what it's really like to live with the condition in North Devon.John Lehan, 38, of Lynhurst Avenue, Barnstaple, has lived in North Devon all his life.<br />
<br />
In his youth, John was a very active member of the community; a carpenter by trade, a weekend party animal and a keen member of Croyde Bay Surf Club, with whom he had competed in many surfing competitions.<br />
<br />
When John was 19, he found himself feeling weaker and weaker, until one day he collapsed at work.<br />
<br />
Remembering the incident, John recalls: "Being a typical bloke, at the time I just thought I had a virus or flu of some sort so I just kept working through it. But when I collapsed whilst out on a job, I knew something was wrong and went to see a doctor."<br />
<br />
John was subsequently diagnosed with CFS - also known as myalgic encephalopathy (ME) - a condition about which relatively little was known. Around 250,000 in Britain are believed to suffer from ME, which affects people in a variety of ways.<br />
<br />
Although it is still very hard to determine what exactly causes a person to develop ME, John believes he contracted it as a result of a virus he caught while surfing at the age of 19.<br />
<br />
The disease went on to take hold of John in a way he found very difficult to grasp.<br />
<br />
John said: "I really struggled to understand it at first. I went from being a healthy, strong young man to being bedridden for the next two years, unable to walk 200 yards without my muscles weakening and eventually collapsing.<br />
<br />
"I became heavily depressed to the extent that I was admitted to Brownlees psychiatric ward at Barnstaple hospital.<br />
<br />
"I found it very hard accepting my diagnosis, especially as a man because you are naturally expected to be a provider and go out to work and earn money and so on. All I could do was sit in the house all day and watch TV which I found very hard at times.<br />
<br />
"I've found the key to living with the condition is to pace myself and not try to do too much in one go. If I try to take on too much at a time, the consequences are pretty bad and I can be exhausted for the next week, unable to get out of bed."<br />
<br />
John said a typical day in his life was extremely limited, but he tried to live as normal a life as possible under the circumstances.<br />
<br />
"I try to wake up around 10.30am to have breakfast but sometimes I will have to go straight back to bed again as the exertion makes me very tired," he said.<br />
<br />
Because of the strain of walking, John has a secret weapon to help him get around without getting tired. John has an electric scooter which, although not designed to be a mobility aid, he finds has given him a life outside of the home.<br />
<br />
"In the afternoons I try to get out to town to do some shopping on my scooter," he said.<br />
<br />
"It's great because it gives me a lot more freedom than I used to have although I do occasionally get some odd looks from people who probably think I'm some sort of thug, tearing round the aisles at Tesco's."<br />
<br />
John has found support from an organisation called the South West Alliance for ME (SWAME) and especially one of the groups supporters, Jacqui Footman.<br />
<br />
Jacqui, who suffers from mild ME, said: "As a society, especially for men like John, we tend to push through illness and ignore it to an extent.<br />
<br />
"If you do this with ME it can cause relapses and will almost certainly make the condition worse.<br />
<br />
"The disease is largely misunderstood by the general public and many people confuse it for hypochondria, depression or even just laziness.<br />
<br />
"Sufferers need support from people who understand their condition and groups such as SWAME are hoping to go a long way towards a better understanding of this debilitating illness."</span>]]></description></item><item><title><![CDATA[ME sufferer's e-learning benefits]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=69fdeb6e-3e36-4875-86d5-c90ee34394ba#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[Story from BBC NEWS: <a href="http://news.bbc.co.uk" target="_blank">http://news.bbc.co.uk</a><br />
<br />
<strong />A sufferer of ME or chronic fatigue syndrome, who is barely able to make herself a cup of tea, is taking GCSE exams this month at the age of 22. <br />
<br />
Michelle Penny says an internet-based course has helped her learning. <br />
<br />
Ms Penny, from Dinas Powys in the Vale of Glamorgan already has two of the qualifications, despite only being able to study for 45 minutes at one stretch. <br />
<br />
Describing her progress as "more tortoise than hare", Michelle hopes one day to recover and become a teacher. <br />
<br />
"I can do my lessons in my pyjamas if I need to," she said of her e-learning. <br />
<br />
Ms Penny, who is in a wheelchair and reliant on her mother Sylvia for her practical care, has had ME, or myalgic encephalomyelitis, for 13 years. <br />
<br />
"I have remained cheerful even though this illness, has in effect, stolen my life”, says Michelle Penny.<br />
<br />
She spoke about her condition as part of ME Awareness Week, which runs until 13 May. <br />
<br />
She has been virtually housebound since 1999 because she is noise and light sensitive and left school at the age of 16 without any qualifications. <br />
<br />
Ms Penny began e-learning at home in 2003 via the Nisai Virtual Academy and has already gained B grades in GCSE Maths and English language. <br />
<br />
Now she is due to sit - at home - two papers for a GCSE in business and communications systems. The exams will be invigilated by her tutor online. The courses have been funded by the Welsh education body, formerly known as Elwa but now part of the assembly government's department of education, lifelong learning and skills. <br />
<br />
Ms Penny said: "ME has affected my life in so many ways because I was so young when I developed the condition. I was a very active young person before ME struck me and after a while I had to give all my social activities up like guides, swimming, horse riding and singing in my church choir. I have lost touch with all my friends locally. <br />
One of the biggest obstacles that besets me, and I suspect other people with ME, is lack of understanding both about the true nature of the illness and about the way in which it affects one". <br />
<strong><br />
What is ME</strong> <br />
ME first came to prominence in the 1980s when it was labelled "yuppie flu" <br />
<br />
Symptoms include fatigue, sore throats, headaches, muscle pain, dizziness and insomnia <br />
<br />
There is no known cure, the cause is unknown and progress is variable<br />
<br />
"It was a struggle for me to be able to get funding for e-learning. I have benefited enormously from learning in this way because I can do my lessons in my pyjamas if I need to and nobody else knows because they can't see me. My lessons last for about three-quarters of an hour and this is normally more than I can cope with. I am set homework every week but because of the way it is set out I can answer just one question, save it and then return to it another day when I am able. This is an ideal way for me to learn". <br />
<br />
'<strong>Determined' </strong><br />
"I don't feel isolated because I can talk to other members of my class via instant messaging. I hope to be able to study science in the next school year. I sometimes think that progress for me both educationally and healthwise is more tortoise than hare. I have remained cheerful even though this illness has in effect stolen my life, and I firmly believe that I will get better one day. I am determined I will achieve my goal of becoming a primary school teacher." <br />
<br />
Ms Penny is hosting a soft drinks morning on 9 May for young people with ME, to try to raise awareness of the condition.]]></description></item><item><title><![CDATA['Like running on empty,' victim of chronic fatigue says]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=6a3a57f0-1967-4673-9e08-1ee643eeb6ef#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Charlie Fidelman <br />
<br />
<a href="http://www.canada.com"> www.canada.com</a><br />
<br />
When Lauri Lidstone comes to the door - barefoot, hair swept up in a ponytail, her skin glowing pink - it's hard to imagine her other than exuberantly healthy.
<p>But the image is deceiving. The St. Lazare woman, 21, suffered from fatigue so debilitating that she spent years bedridden. Even today, just taking a shower might be the main activity of her day.</p>
<p>Six years ago, Lidstone was an honour roll student. She played clarinet in the school band, was involved in Girl Guides, belonged to soccer and basketball teams and was passionate about kayaking and horseback riding.</p>
<p>Then everything fell apart.</p>
<p>Because of chronic fatigue syndrome, Lidstone became a prisoner of her bed, 18 hours a day for two years.</p>
<p>Today, having regained a fraction of her energy, she has learned to pace herself for a few activities, but she won't risk a trip to a shopping mall without a wheelchair.</p>
<p>"It's like having no batteries ... like running on empty," explained the slender Lidstone, lounging on the deck overlooking the family garden.</p>
<p>It is a poorly understood and often misdiagnosed disorder whose calling card is severe and chronic exhaustion - at once physical and mental.</p>
<p>Lidstone is among an estimated 341,126 Canadians with the condition, according to a Statistics Canada community health survey conducted in 2003.</p>
<p>The Centres for Disease Control and Prevention in the United States suggests only 20 per cent of the 4 million Americans with the disorder have been properly diagnosed. There's a debate on symptoms, and even the name is controversial.</p>
<p>But it's more than just feeling tired, said Alison Bested, who treats hundreds of affected adult patients at her Toronto office.</p>
<p>"Some people describe the fatigue as so bad it's like having your feet wrapped in wet cement shoes trying to walk though a swamp," Bested said.</p>
<p>While recognized in adults, it was hardly on doctors' radar when Lidstone sought help at age 15. Children were thought not to have fatigue sickness.</p>
<p>In fact, it can strike children as young as 4, Bested said. But many are misdiagnosed as depressed and prescribed anti-depressants, or parents are told to consult a psychologist about school phobias. Lidstone was told to go home and sleep it off.</p>
<p>"One doctor told me to take up swimming," she recounted.</p>
<p>Lidstone's active life changed abruptly one morning when she awoke feeling dizzy. Instead of going to school, she went back to bed. Instead of getting better, she got worse.</p>
<p>Extra-curricular activities fell away. School attendance dropped from half-days to alternate days, from sporadic to not at all, Lidstone said. "I would push myself to do things and then I'd crash."</p>
<p>Apart from debilitating fatigue, the syndrome can leave patients with a cluster of fluctuating symptoms that range in severity, including impaired memory and concentration, chemical sensitivity to perfume and soaps, tender lymph nodes, muscle pain, headaches, dizziness and an irritable bowel.</p>
<p>Lidstone suffered from "brain fog." At her lowest point, she couldn't concentrate long enough to read a paragraph.</p>
<p>Looking after her daughter became a full-time job, Diana Lidstone recounted. But here's the hitch: Patients often don't look ill or have telltale signs of sickness.</p>
<p>"It's not like she broke a leg or had chemo and her hair has fallen out," Diana Lidstone said.</p>
<p>By the time doctors finally ruled out every other illness that causes fatigue - the syndrome is diagnosed by exclusion - Lidstone was spending full days in bed.</p>
<p>No treatment was available.</p>
<p>"At one point, I realized I was grieving for what I thought she was going to be doing all those years," her mother said.</p>
<p>She thought her honour student daughter would experience the usual adolescent things: high school parties and dances and boyfriends, then CEGEP and university.</p>
<p>"I thought, 'I'm going to have to give her a curfew' ... but that wasn't going to happen."</p>
<p>Lidstone's parents tried organic foods and alternative therapies, including daily tai chi.</p>
<p>"We've come to understand that what she does ... will be in a different way. That was a turning point in learning to cope with this," her mother said.</p>
<p>In an attempt to get her child outdoors, Diana Lidstone set aside part of the backyard for gardening. Two years ago, Lauri Lidstone circled the garden plot and promptly went back to bed. Last summer, she helped plant the vegetables herself.</p>
<p>She also kayaked - a few minutes at a time. In the fall, she enrolled in two courses at John Abbott College, but cut back to one.</p>
<p>She gave a talk explaining the syndrome to her classmates and was pleased that it generated questions. "They wanted to know what it is like," she said. So she told them about "the isolation, the loneliness." How, desperate to get her life back, she'd set benchmarks, buoyed by short bursts of energy, only to crash again.</p>
<p>"It's tough losing the hope that magically it will get better," she said.</p>
<p>In the meantime, Lidstone discovered the Slow Movement philosophy and its handbook, In Praise of Slow by Carl Honore, which promotes a stress-free lifestyle with a new approach to time and space.</p>
<p>Lidstone jokes she's almost grateful to her syndrome for leading to an appreciation of living at a different rhythm: "I'm not quite there yet."</p>
<p><br />
</p>
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<div class="paginationcontainer"><br />
</div>]]></description></item><item><title><![CDATA[Journey through the fog]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=7d5d375c-3cab-4775-acbc-ca4676667881#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Claire Elderkin <br />
<em><br />
InterAction </em>magazine - Issue 60 (May 2007)<br />
<em> Action for M.E</em>.<a href="http://www.afme.org.uk"> www.afme.org.uk</a><br />
<br />
<strong>Clare Elderkin shares the strategies she has found helpful on her way to recovery from severe M. E.</strong><br />
 <br />
I originally became ill following a virus which left me feeling very unwell and drained of energy. After six months and many visits to my GP, I was diagnosed with M.E. My health steadily declined over a period of about a year, to a point where I was completely bedbound, too weak to sit up, unable to talk or be spoken to. I couldn't feed myself or attend to even my most basic needs <br />
alone. I was extremely sensitive to noise, smell and different foods and began receiving daily care through the Direct Payments Scheme. I was in this sorry state for around 10 months.<br />
<br />
<strong> Arch nemesis</strong><br />
At my worst, my arch nemesis was worrying about what might happen. For example, would trying something new cause a relapse? This was a particular a problem when I spent all those months in bed with nothing to occupy my brain. Now I can see that all that worrying was using precious energy and probably was the cause of my perpetual state of ill-health. At that time, all day-to-day problems were taken out of my hands as I was far too ill to contemplate taking part in the running of my life. Since I have been able to do more, I have tried to think of strategies to prevent the worry. For example, writing things down that I need to do takes the weight off my mind, especially since a goldfish rivals my current memory capacity! Generally, there seems to be little point in using energy to worry, as it will not solve any problem you may have. Why not use that energy to devise a plan to deal with the problem instead?<br />
<br />
As my health declined, I found myself becoming afraid to do things that I struggled with or to try new things. I suppose that was completely understandable after having bad experiences with some activities;  however, I found myself in a position where I was unable to do things because of deconditioning, and not necessarily due to tiredness alone. The less I did, the less I felt able to do. I don't think for a moment that pushing myself was the solution as this can be equally dangerous. Looking back, I think the key would have been to find a balance whereby I did an activity only once a week or once a month if that was all I could manage. At least I would have been keeping my muscles in a condition that would allow me to do it! For example, I once collapsed while trying to walk to the bathroom. Instead of trying again the next day, I was too frightened and after a while, I found myself completely unable to walk. If only I had taken just a few steps I might not have had to learn how to walk again (a very strange experience!). Just because you have had a bad experience doing something once, does not mean that it will happen again. If you don't try, you'll never know.<br />
<br />
<strong> Rest means quality rest</strong><br />
I believe that pacing has played an important part in the improvement of my health. For me, the key to this is to find a baseline of activity that is achievable on both a good and a bad day; that way I know how much energy I have used. This strategy brings security in that I know that I should be able to sustain that level of activity. I also alternate between mental and physical activity (no-matter how small) with regular rest breaks. Rest means quality rest, not watching TV!<br />
<br />
I attempt to do roughly the same each day, using a routine if necessary. This helps me to avoid the harmful 'boom and bust cycle' since I have a better idea of how much energy I have used. Also, by not using all of my available energy, I believe that my body  will be able to use the extra energy to help heal itself. I regularly experiment with trying different things, but I only change one thing at once in case I do have an adverse reaction. I am then able to gauge the level at which I should try next time. Sometimes, however, I seem to have a bad day for no apparent reason; I am assured that this is completely normal!<br />
<br />
I used to keep a diary of what I did each day, but now my health is a little more stable, I make entries when something different to my daily routine happens. I find this useful because I am able to look back and see what progress I have made (sometimes more than I anticipated!). It is so easy to forget what I did in the not so distant past. On those times when I have done too much, I have used the diary to identify events that trigger my symptoms. However, a small increase in symptoms seems to be normal after doing a little bit more than I had previously. The discomfort usually subsides after a relatively short period of time while my body is adjusting. If it doesn't, I question whether I am doing a little too much.<br />
<br />
Energy-saving equipment has proven to be useful, if a little 'untrendy'. When I was bed-bound I had to use a commode as I found that even being 'wheeled' to the bathroom in a wheelchair was too exhausting. Since I was unable to get to the shower, my  carer washed my hair using a purposefully made blow-up 'sink' that is intended to enable someone to wash your hair for you while lying in bed. When I started to try to leave the house, my carer would push me in the wheelchair, which allowed me to go out for much longer than I would have without it. I also used the wheelchair around the house.<br />
<br />
<strong> Hardly 'cool' but helpful</strong><br />
While I was learning to walk, I used a walking frame (an item which no woman in her 20s should be seen without!). After that, I progressed onto crutches and now I am able to walk unaided.<br />
<br />
Other items that have helped me include a stool in the shower, a perching stool next to the kitchen worktops and an indoor trolley that I used to 'carry' things from room to room. There are many other wonderful gadgets also available from mobility shops and the NHS.<br />
<br />
When I was in bed, I was very sensitive to noise, so I used foam or wax earplugs and ear defenders (available from DIY shops) to help block-out loud noises. Also at that time, I had great difficulty chewing food, so I was prescribed an energy drink called Fortisip. At slightly better times, I ate soft foods (mashed potato, soup etc), or pureed food in a food processor.<br />
<br />
I made sure that I kept moving around in bed as much as possible to help to prevent my muscles from deteriorating too much. Also, I found that the pain was worse if I lay still for long periods of time.<br />
<br />
After several months in bed I began to develop painful pressure points (which if left untreated, may have developed into bedsores). I was seen by a specialist nurse who issued me with what I could only describe as a blow-up lilo (the sort of thing you might take to the beach). It did the trick; my pressure points did not get any worse. Also, to my great amusement, I pretended that I really was on the beach!<br />
<br />
Since I was unable to watch television or listen to music, I discovered several strategies to occupy my mind and act as a pleasant distraction. I immersed<br />
myself in a visualisation; for example, in my mind I created a beautiful garden. It began quite simple but ended up being  very detailed. I imagined which plants might be planted in what place and even pretended to smell the scents of the flowers. If you don't like gardening, why not design a house in your mind, or even pretend you are on a beach (back to the lilo again!). I often played the 'alphabet game'. This involves picking a subject area; food for example, and starting at the letter 'a', thinking of an item starting with each letter of the alphabet. Talking books are also a brilliant source of entertainment.<br />
<br />
The subtlest change to my surroundings gave me something different and positive to concentrate on. For example, putting some fresh flowers next to my bed or burning some essential oils to create a different atmosphere (perhaps to help in a visualisation). Personally, I loved listening to a CD of the waves crashing on a beach. There are many more available, including birdsong, dolphins and thunder.<br />
<br />
In order to maintain my sanity and motivation, I try to celebrate what I have managed to do, rather than what I cannot. It sounds silly I know, but I congratulate myself at the end of each day for all the tasks I have done, no matter how small. Keeping positive about my situation has really helped, no-matter how depressed I have been at times.<br />
<br />
<strong> Moving forward</strong><br />
At my worst, I felt that M.E. was taking over my life and that there was nothing beyond it. I found that friends no<br />
longer bothered to see me or took the time to understand. The only way I managed to cope with this was the realisation that they did not do this on purpose, but that they lead busy lives and do not understand the impact of serious illness.<br />
<br />
After about 10 months, things started began to turn around. I started to notice tiny improvements, which have now added-up to a level of wellbeing that allows me to study with the Open University for eight hours per week, volunteer with the Sheffield M.E. Group and even enjoy a very modest social life!<br />
<br />
Throughout my illness, a close friend of mine was the source of my strength and determination to once again lead a healthy and normal life. She was seriously ill with M.E. for five years and  has now completely recovered and is studying for a PhD. I believe that if she can return to good health, I can too.  Although I still have a considerable way to go, I am making slow but steady progress. My ultimate dream is to return to work one day and be able to enjoy the finer points of life like going on holiday and having some fun!<br />
<br />
I believe that the key to managing (and hopefully my eventual recovery from) M.E. is looking after myself in the best possible way. The accumulation of many small changes seem to have enabled my body to repair, even if an immediate effect is not seen. Also, I found that it was necessary to accept my situation and capabilities before I was able to move forward.<br />
<br />
I have tried not to lose sight of the fact that recovery is possible and that I will make new friends that do understand. I am forever grateful to my family as their love and support saw me through some of the toughest parts of this journey. I look forward to sharing experiences with them that during my darkest hours I thought would be forever beyond my abilities. During all of the time I was housebound, I didn't think I would ever get to meet other members of Action for M.E. or my local M.E. Group. Now that I have, I have discovered that they are all wonderfully friendly and welcoming people. Most of all, I take comfort in the fact that there are people who understand and are willing to listen. We are not alone!<br />
<br />
<strong> About the author</strong><br />
Clare lives with her unusual pets (a snake and a spider) in a flat in Sheffield. She is currently studying Computing through the Open University and hopes to become a committee member of her local M.E. group later this year.<br />
 ]]></description></item><item><title><![CDATA[Mum, nothing works. I can’t move]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=801904eb-ab55-4fbf-a669-7c294031800d#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Penny Wark<br />
<br />
<a href="http://www.timesonline.co.uk">www.timesonline.co.uk</a><br />
<br />
<p>ME is difficult to treat but Leo, 13, is learning to take control of his condition. Our correspondent reports</p>
At 13 Leo has become used to people asking how he is and recalls his recent response to a friend’s inquiry. “Ask me on a Tuesday . . .” he says affecting the Scottish brogue of David Walliams’s strange hotelier in Little Britain. This is the kind of joke that teenage boys like, but for Leo it is a clear sign of progress because a year or so ago his response was very different.
<p> “Do you know, what I hate more than anything else is when someone asks, ‘how are you feeling?’ It’s kind of a rhetorical question, but I don’t feel fine and I hate telling them that because you don’t know how many times I’ve had to say . . .” </p>
<p> This thought, unconcluded and delivered in a croaky and weary voice, forms part of an audio diary that Leo kept throughout much of the time he has suffered from ME (myalgic encephalitis, otherwise known as chronic fatigue syndrome). On Friday parts of the diary can be heard on Radio 4 in Leo, Rusty and ME, which tells the story of his illness through his voice and contributions from his parents (both broadcasters), his sister and the professionals who have helped him. At times it is unbearably poignant to hear the family struggle to endure his deteriorating condition, but it is instructive, too, because ME has long had a bad press. </p>
<p> Five years after the World Health Organisation (WHO) classified it as a neurological disorder, it is still little understood. There is no clinical test to diagnose it, no definitive treatment and no cure. The suspicion that those who claim to have it are malingerers who just need to get a grip persists, yet it is known that it commonly affects high achievers and it is now thought that one in 250 of us will have it at some point. As many as 25,000 children in the UK are thought to suffer from it every year. </p>
<!--#include file="m63-article-related-attachements.html"-->
<p> Leo became ill<strong> </strong>in November 2005, a day his mother, Jane Ray – who produces the programme – remembers vividly. He had had a chest infection but seemed to be getting better so the family took him to a Harry Potter movie. </p>
<p> “At the end he looked at me and said, ‘Mum, nothing works, I can’t move’. It was as if dementors had swooped over him and scooped him out.” </p>
<p> Ray does not exaggerate. Over the months that followed Leo’s body ached, he had fearsome headaches and described his tiredness as violent. He found swallowing difficult and lost weight rapidly. Much of the time, he slept. Tests for glandular fever and Lyme Disease at the Whittington Hospital in North London were negative and it was not until January 2006, when Dr Andrew Robins, Leo’s consultant paediatrician, diagnosed a postviral syndrome (this was classed as ME three months later) that the family felt they had reached a turning point. “We knew what we were fighting against and stuff like that,” says the admirably succinct Leo. </p>
<p> His mother is more expansive. “Treating ME is the medical equivalent of watching paint dry,” she says. “The usual NHS view is that there’s nothing they can do to treat it, they just manage the symptoms. But here we had an [NHS]consultant paediatrician who was prepared to say, ‘I will see you every week until he’s better. You won’t be passed from pillar to post, and I will get a team together that will support your care’. </p>
<p> “In a practical way that saved us from wasting thousands and thousands of pounds, as other people have done, on crank cures and snake oil and new therapies that seem to attract people who are bewildered and desperate.” </p>
<p> Robins’s collaborative approach to Leo’s care was designed to support his physical, psychological and emotional needs simultaneously. The team consisted of a nutritionist, a physiotherapist, and Robins’s colleague, Dr Sebastian Kraemer, a consultant psychiatrist. “It was quite clear to me when I first saw Leo that it wasn’t going to be possible to do all this on my own,” says Robins. </p>
<p> “ME isn’t well understood but there seem to be threads of good practice and it seems to make sense to coach the young person with their family and give them a programme where they can be given space to get better over a longer time course than most people would appreciate. There is a problem in certain models in medicine. Instead of working in parallel we think in series and the physician gets to the end of the line and says, I’m sorry, I can’t do any more for you, go and see a psychiatrist. That’s often traumatic for everyone involved because they don’t necessarily feel that there is a psychological issue and feel abandoned by the medical side. We are saying that there are psychological issues and there are physical issues and we’re going to look at them together. In a world of limited resources it’s expensive putting two consultants in the same room for an hour, but it is definitely worth it in certain situations. The work we do for Leo’s family isn’t just me or just Dr Kraemer, it’s the product of the two parts.” </p>
<p> Kraemer remembers meeting Leo and finding a child so tired that it was as though he had been woken in the middle of the night. Realising that Leo is highly imaginative, he suggested that he come up with a name for his symptom. Leo came up with “Rusty” and gave the name to his whole body “because it was like a rusty gate, doesn’t work properly”. </p>
<p> The idea behind the technique is to distance the patient from his symptoms so that he can look at them and think about them separately, Kraemer explains. “If you can look at what’s happening rather than suffer from it you’re more likely to be its master rather than it being your master. It helps people to use mental devices against an unseen enemy, if you like. We’re not claiming that any of this is curative – ME is tiger country – but a lot of children do get better and the objective is to make sure that happens as speedily as possible and not to let anything get in the way – such as wrong kinds of treatment or staying in bed all the time.” </p>
<p> Leo did spend a lot of time in bed and had many remissions and relapses. He lost so much weight that the hospital suggested that he should be fitted with a feeding tube. He didn’t like that idea, started to eat a little more and his weight stabilised. He recorded his wheelchair speeding down a hill and notes drily that when he crashed, his mother was more concerned about the well-being of the recording equipment than her son. Then his friend Curtis told him about a neurolinguistic programming technique called the Lightening Process. Leo was keen to try it, and Robins and Kraemer felt that his enthusiasm meant that the timing was right and that the technique could give him another way of taking control of his condition. As a result of the sessions Leo came up with the image of packing his ME into his wheelchair and abandoning both of them. </p>
<p> “Some of it is positive thinking,” he explains. “Saying I’ve got ME, so it sounds as though I’ve currently got ME, not I always will have. Things like that, really.” </p>
<p> He no longer has a home tutor and has returned to school part-time, and he has started to draw again. His mother finds some of his cartoons to show me. Leo cringes with embarrassment. </p>
<p> We eat the rock cakes he has made, he frets over his hair, but as he gets used to the agony of speaking to a stranger in front of his parents he starts to open up. </p>
<p> His body uncurls, his back straightens, his hands unwind and you begin to see a teenager who no longer looks ill. I admire his sweatshirt. </p>
<p> “The ultimate in cool – being dressed by your mother,” he quips. </p>
<p> “You can do your own shopping now, mate,” she says. </p>
<p> — Leo, Rusty and ME, BBC Radio 4, Friday 11am </p>
<p><br />
</p>
<p><strong>Extract from Leo’s audio diary</strong></p>
<p><strong>April 17 2006:</strong> “It’s the night before my birthday. I’d like to be excited but I’m not. I’m dreading my birthday to be honest. I thought I’d be feeling better.” </p>
<p><strong>April 18:</strong> “It’s my birthday. My stomach woke me up but I went downstairs and flung the door open and it was nice because there were balloons and everything. I opened my cards and then my presents. I got a few very funny cards, good presents. I thought we’d go go-karting but then Rusty had a bit of a bad turn just before, which was inconvenient. I was knackered. We sang Happy Birthday with my birthday cake and then I went to sleep and that was it. I mean, it was good but it was – well, I’m proud of what I did, but I’ve never felt more tired ever.” </p>]]></description></item><item><title><![CDATA[Disease makes dubious doctor a believer]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=97e39707-1b58-4057-8c32-865032536a61#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Yvonne Betowt<br />
<br />
The Huntsville Times - <a href="http://www.htimes.com/">http://www.htimes.com/</a><br />
Times Staff Writer yvonne.betowt@htimes.com<br />
<br />
<strong>Before suffering illness Bryan Evans was't sure CFS</strong> <strong>was real</strong><br />
<br />
Dr. Bryan Evans used to enjoy playing volleyball at the gym with friends a couple times a week.<br />
<br />
The Huntsville family practice physician often felt sluggish after seeing between 30 to 40 patients a day at his southeast Huntsville office. But when he stepped onto the volleyball court, the adrenaline rush restored his energy.<br />
<br />
"The only time I felt good was when I was playing volleyball, and I never wanted to quit," he said.<br />
<br />
But eventually that high began to wane as his body continued a downward spiral. He suffered from excruciating muscle aches and pains, profuse sweating and total exhaustion without exerting any energy, unexplained weight loss and gain, skin rashes, headaches and a number of other debilitating problems.<br />
<br />
After countless tests and trips to several local specialists - an oncologist, a cardiologist, rheumatologist, pulmonologist and an infectious disease internist - with no definite diagnosis, Evans began to suspect he had Chronic Fatigue Syndrome and/or fibromyalgia.<br />
<br />
He was right about both.<br />
<br />
Gradually, Evans was so tired and weak he could hardly get out of bed each morning. After a shower, he had to return to bed for about 30 minutes to muster enough energy to get dressed. He began cutting back his office hours, thus reducing his workload - and his income.<br />
<br />
He and his wife had divorced, leaving him in a state of turmoil, emotionally and physically. Despite his vast knowledge of medicine, he was perplexed at what seemed to be a phantom illness.<br />
<br />
Finally, Dr. Dan Prince, a rheumatologist in Gadsden whose wife has fibromyalgia, confirmed his suspicion.<br />
<br />
"Initially I thought it was just a bad viral illness," said Evans, the 46-year-old father of two daughters. "I was just glad it had a name."<br />
<br />
In 2002, he started having symptoms, but thought it was secondary stress. In 2004, it started affecting his work schedule. He was soon able to see only 10 patients a day.<br />
<br />
Earlier this year Evans sent a letter to his patients informing them of his "catastrophic" illnesses and situation, which he says, is in dire straights. He may be headed for bankruptcy because of his inability to function as a physician and is applying for disability.<br />
<br />
He said he feels like he has flu-like symptoms "24 hours a day, seven days a week. It never goes away."<br />
<br />
Many things can trigger an attack of fibromyalgia or Chronic Fatigue Syndrome, ranging from loud noises, to excessive light, smelling potent food such as onions, or even the weather.<br />
<br />
Before he began showing symptoms, like many doctors, Evans was a "doubting Thomas" when his patients claimed to have Chronic Fatigue Syndrome or it's closely related cousin, fibromyalgia. Two decades ago, some physicians called CFS the "yuppie flu."<br />
<br />
"I have never been a strong believer in Chronic Fatigue Syndrome in the past," Evans said in his letter, "but, after extensively researching the subject, I have every sign and symptom pointing to this as my diagnosis."<br />
<br />
Now he feels those same patients' pain - literally and figuratively.<br />
<br />
"Yes, I've seen eyes roll," said Evans of some of his colleagues when they learn about his diagnosis. "It's like you are talking about the tooth fairy. I was probably more sympathetic than most doctors to patients with Chronic Fatigue or fibromyalgia, but I have rolled my eyes when I've had patients with them. But mostly it was because there is very little you can do to help them."<br />
<br />
One of the newest drugs with promise to help people suffering from fibromyalgia is Lyrica, approved by the FDA last June. Time magazine called it one of the top 10 medical breakthroughs of 2007.<br />
<br />
But for Evans, neither Lyrica, nor any other drug, has helped the symptoms that leave him aching, weak and exhausted.<br />
<br />
"At various times, I tried several medications, none of which helped any of my symptoms," Evans said. "Most made me feel worse, if anything."<br />
<br />
CFS and fibromyalgia are so similar in their symptoms, some doctors believe they may be one in the same, with different symptoms affecting people in different ways.<br />
<br />
The book "Chronic Fatigue Syndrome, Fibromyalgia and Other Invisible Illnesses" (Hunter House, 2001) was written by Dr. Katrina Berne, who was diagnosed with CFS and fibromyalgia in 1985.<br />
<br />
She says research shows the two diseases "overlap by as much as 75 percent." She said the disorders "share common symptoms, demographics, sleep physiology, and abnormalities in neurological, immune system, and endocrine function."<br />
<br />
Evans said no one is quite sure what causes CFS or fibromyalgia and there is no known cure. No federal money is allocated for research either.<br />
<br />
"It's not a glamorous illness so there is no money for research," said Evans, a graduate of the University of North Carolina in 1983 and Wake Forest Medical School in 1987. "Some people say be glad I don't have Parkinson's, but I wish I did. At least they have money for research."<br />
<br />
© 2008 The Huntsville Times<br />
© 2008 al.com All Rights Reserved.]]></description></item><item><title><![CDATA[West Nile recovery can take years]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=988d4a84-dbcf-4ace-97ef-6cabf8a3f690#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Wes Smalling<br />
<br />
<a href="http://www.casperstartribune.net">www.casperstartribune.net</a><br />
<br />
<span class="storydetail">An avid outdoorsman, Mark Davis knew he would one day be bitten by a mosquito carrying the West Nile virus. He also knew he would probably come down sick from it to some degree.<br />
<br />
What the Saratoga resident didn't realize was how long the nagging flu-like symptoms would last.<br />
<br />
It's been almost three years since he and his wife, Janice, became sick from the mosquito-borne West Nile virus. They are both still battling the sickness, although Mark Davis has much worse symptoms than his wife.<br />
<br />
At first, doctors told him he probably would recover in three or four months, the usual recovery time for West Nile fever.</span>
<p><span class="storydetail">"When I did get it I thought, 'OK fine, good. Let's get it over with,'" he said.<br />
<br />
"Now they tell me I may never get over it."<br />
<br />
There is no vaccine or cure for the two illnesses that can stem from the West Nile virus: West Nile fever or the life-threatening West Nile neuroinvasive disease. At this point, Mark Davis says, doctors don't know which form he has.<br />
<br />
Those who come down with the milder, more common West Nile fever usually suffer from flu-like symptoms and fatigue for three to four months. West Nile neuroinvasive disease is an infection of the nervous system that some people develop from the virus. It is a much more serious illness than West Nile fever and can lead to paralysis and death.<br />
<br />
For most West Nile fever patients the only way to recover is to rest and wait it out. Almost three years later, the Davises are still waiting.<br />
<br />
Mark Davis is thin as a rail and can't put on weight. He worries he may die from the disease.<br />
<br />
Dr. Tracy Murphy, state epidemiologist for the Wyoming Department of Health, said the virus affects different people in different ways.<br />
<br />
"A significant number of people who had the severe (neruroinvasive) disease, a significant proportion of them can have long term or even permanent disabilities or effects. That number may be up to even 50 percent."<br />
<br />
Mark and Janice Davis, who each show varying symptoms of West Nile fever, are unusual in that their illnesses have lasted so long.<br />
<br />
"Usually that is seen in the more severe disease (the neuroinvasive form). But even with the less severe West Nile fever illness, people will report lingering fatigue and weakness for several months."<br />
<br />
Only one in 150 people infected with West Nile virus ever develop a severe illness. Only about 20 percent of the people infected ever develop mild symptoms.<br />
<br />
The rest never become sick at all. The virus cannot be passed from person to person but it is possible to contract it through a blood transfusion.<br />
<br />
Mark and Janice Davis contracted the virus while on a fishing trip in northern Colorado in August 2004.<br />
<br />
His wife's illness began with a terrible headache about a week after they returned home from the trip. A few days later he woke up in the middle of the night with chills and a fever, and felt so weak he couldn't walk.<br />
<br />
"I crawled in and out of the doctor's office," he says. "Literally I was on my hands and knees... We spent the next 10 months so tired you're just sitting there trying to get enough energy to walk 30 feet to go to the bathroom."<br />
<br />
The painful headaches still come and go for Janice Davis but for the most part she says she's feeling better. Mark Davis, however, still battles chronic fatigue, muscle weakness, head and body aches, stiffness, irritability and other nagging symptoms that come and go from day to day and week to week.<br />
<br />
It's like having the flu and never getting over it.<br />
<br />
Some days he feels well enough to go to work down the street at the local fly shop or to take a short fishing or hunting trip. But other days he feels so sick he can't get out of bed.<br />
<br />
Doctors seem powerless to help and can't explain why he isn't getting over the illness, he says.<br />
<br />
"I feel like it's aged me 10 years."</span></p>]]></description></item><item><title><![CDATA[I want to get better, more research is needed]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=a2ba3324-1756-420d-a90d-ad911e80031b#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[Bristol Evening Post - <a href="javascript:void(0);/*1243844541336*/">www.highbeam.com/Bristol+Evening+Post</a><br />
<br />
by Vicki Mathias<br />
<br />
<strong>A teenager who has suffered chronic fatigue for more than 10 years wants more to be done to find the cause of her illness.</strong><br />
<br />
Helen Wood, of Thornbury, Wes diagnosed with ME in June 2005, but had suffered symptoms since she was about eight years old.<br />
<br />
The 19-year-old said she feels exhausted all the time and suffers constant aches and pains.<br />
<br />
Because of the condition she was forced to leave school before completing her GCSEs and cannot work.<br />
<br />
ME is a term that describes several different illnesses where symptoms include severe fatigue, painful muscles and joints, poor memory and concentration. Experts are not sure what causes ME but it is usually triggered by viral infections and can also follow operations or accidents.<br />
<br />
Miss Wood had suffered glandular fever when she was eight and it is now thought that the virus triggered her ME.<br />
<br />
Her mother Liz, said the diagnosis in 2005 was a "relief" as it finally gave a reason for her daughter being unwell.<br />
<br />
The former Castle School pupil had a tutor at home for 18 months after she left school, but even three sessions a week were too much for her.<br />
<br />
She said: "I am very angry and I wish I didn't have ME. I can't do what everyone else does and wish I could but I can't.<br />
<br />
"I suffer fatigue and lots of aches and pains. Most days are bad and I have been feeling like this for 11 years. I would like to get better and would like more research to be done to find out why this happens."<br />
<br />
Mrs Wood, 50, also has a 21-year-old son, Christopher who has Asperger's syndrome, said:. "Helen is very restricted and has to pace herself. She cannot walk from our house into Thornbury. She is very isolated and does not see any of her friends from school."<br />
<br />
There is currently no treatment available for ME sufferers although there are therapies available, but Mrs Wood said they tend to be expensive and there is no guarantee they work.<br />
 <br />
Mrs Wood, a carer, said: "ME is a horrible illness. People don't really understand and it is very hard to explain to people what it is actually like. It is not something that is 'in the mind' "<br />
<br />
We'll find a way to diagnose ME<br />
<br />
The doctor charged with leading services for ME sufferers in the Bristol area believes that in the future there will be a test to prove that patients have ME.<br />
<br />
Currently the illness is diagnosed through tests to rule out other causes of fatigue but Hazel O'Dowd, who is based at Frenchay Hospital, believes it is only a matter of time before there will be a marker to identify it.<br />
<br />
Dr O'Dowd said: "It is not just about feeling tired, there are headaches, joint pain.<br />
<br />
"With syndromes like this there is something in the processing that has gone wrong but nothing will show up on a blood test.<br />
<br />
"It is like a one-armed bandit, you need genetics, a trigger in the here-and-now and then some psychological or social problems. You need to get all three cherries to get the jackpot, although with ME it is not a very nice jackpot."<br />
<br />
Research into ME is being carried out, including projects involving patients locally looking at ways of managing the illnesses by sufferers pacing themselves. Another project, due to start at Bristol University, will look at genes as a potential sign of ME.<br />
<br />
Copyright: Bristol Evening Post 2009]]></description></item><item><title><![CDATA[Could a detox massage really help cure ME?]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=dd8ddd59-afc3-4de5-88e2-c9e293259540#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[<span class="artByline">by Barbara Lantin<br />
<a href="http://www.dailymail.co.uk"><br />
www.dailymail.co.uk</a><br />
</span><br />
At school, Lizzie Jolley was envied by her classmates for her energy and sporting success. Picked for most sports teams every year, she swam, played netball, hockey and tennis and gained a Duke of Edinburgh gold award.
<p> At university, she added diving and sailing to her list of accomplishments. But within 18 months of graduating in 2001, she was so ill that there were days when she could barely struggle out of bed. Walking was difficult and serious exercise impossible. </p>
<p> "I would wake up feeling really groggy - as if somebody had hit me over the head with a baseball bat - and very depressed, which was really unlike me as I have always been a happy person,' says Lizzie, now 28. </p>
<p> "I knew something was seriously wrong but I had no idea what it was."  </p>
<p> Lizzie's GP arranged for her to have some blood tests. When these came back clear, he diagnosed ME by process of elimination, as there is no definitive test for the condition. The symptoms persisted and Lizzie remembers Christmas 2002, one month after her diagnosis, as a low point. </p>
<p> "I could not exercise, go out with my friends or even enjoy a drink without throwing up. I thought this illness would be with me for life." </p>
<p> But by March the following year, Lizzie was on the road to recovery, thanks - she believes - to a technique devised by Manchester osteopath Raymond Perrin. </p>
<p> Perrin - who is not a medical doctor but gained a PhD for his work on ME - believes that the condition is caused by the body's inability to rid itself of harmful organisms and chemicals, including bacteria, viruses and environmental pollutants. He claims that his massage techniques stimulate the lymphatic system - the network of vessels that carry infectionfighting cells round the body and remove foreign bodies - to drain these toxins away. </p>
<p> In one trial, published in the Journal of Medical Engineering And Technology in 1998, the symptoms of 33 patients treated by Perrin improved on average by 40 per cent, while the untreated group deteriorated by an average of 1 per cent. </p>
<p> In a second - unpublished - trial that specifically investigated muscle strength, ME patients who had a year's treatment regained far more strength than those left untreated. </p>
<p> Despite these trials, Perrin's approach remains controversial. It is not accepted by the medical profession and there has been no robust independent research showing that the lymphatic system is involved in ME. His book describing the technique was published last month. </p>
<p> ME - also known as chronic fatigue syndrome - is a debilitating illness that affects up to 250,000 people in the UK, around 55,000 of them so badly that they are housebound. Once labelled 'yuppie flu' and believed to have a psychological cause, it is now more widely recognised as a chronic physical illness, but what lies behind it is still unclear. </p>
<p> A number of possible causes are under investigation. Neil Abbott, director of operations at ME Research UK, says that ME may not even be one syndrome, but instead a collection of symptoms with different causes. </p>
<p> Conventional treatments, including cognitive behavioural therapy (CBT), exercise therapy, painkillers and antidepressants bring relief to some, but others find that they make little difference and turn instead to some of the huge range of complementary therapies apparently offering a promise of improvement. </p>
<p> For of these, including the Lightning Process described in Good Health earlier this year, there is very little scientific evidence. </p>
<p> Lizzie Jolley's doctor prescribed sleeping tablets to improve the quality of her sleep and CBT, both of which helped a little. In February 2003, Lizzie's mother was told about Raymond Perrin by a neighbour whose teenage daughter he had successfully treated for ME. After examining Lizzie, he confirmed the diagnosis. </p>
<p> According to Perrin, ME occurs when the body's nervous system is put under stress, causing the lymphatic system, which it controls, to work less efficiently. The stress may be caused by a physical problem, such as back strain or trauma; by environmental factors such as pollution or by an emotional upset such as a bereavement. In Lizzie's case, he thought that whiplash after a car accident while she was in New Zealand may have been a contributory factor. </p>
<p> Because the drainage pathways of the lymphatic system do not work properly, toxins - including bacteria, viruses, atmospheric pollutants such as cigarette smoke and petrol and waste products from food - build up. One final trigger, usually an infection, increases the toxic overload and tips the patient into the condition known as ME. </p>
<p> On Lizzie's first visit to his clinic in Manchester, Perrin gently massaged her back, neck, armpits and head.  </p>
<p> "I remember when he held my skull he was so still that my mum thought he'd gone to sleep. It was as if he was in a trance. I slept the entire way back to Nottingham in the car and then all that night and the following day - about 20 hours, the best sleep I'd had in ages." </p>
<p> After a few weeks, Lizzie began to feel significantly better. First her eyesight began to return to normal, then her concentration improved, the muscles in her legs ached less and her exhaustion subsided. </p>
<p> In May, Lizzie ran a half marathon and this month she is attempting the gruelling Three Peaks Challenge, climbing the three highest mountains on mainland Britain in 24 hours. </p>
<p> "Without a doubt, I have now made a full recovery and I know that I could not have done it without the Perrin Technique," she says. </p>
<p> The Perrin Technique does not work for everybody, cautions Dr Charles Shepherd, medical advisor to the ME Association, who is sceptical about the approach. </p>
<p> "This is just one person's hypothesis and I am not convinced that the theory behind it is scientifically sound," he says.  </p>
<p> "The trials that have been done are not of a sufficiently high standard to make people sit up and take notice. Patients may find this kind of treatment helpful when delivered by a sympathetic practitioner, but whether the underlying process actually has any effect on the disease is another matter." </p>
<p> Heather Walker, of the charity Action for ME, said: "As a matter of policy we do not recommend individual therapists." </p>]]></description></item><item><title><![CDATA[On a bad day, Sue aches all over and finds it hard to talk]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=f51ed43b-ce5e-479d-880c-a193aa8cf19e#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[Echo -<a href="javascript:void(0);/*1243581412063*/"> www.echo-news.co.uk<br />
</a><br />
by James Kershaw<br />
<br />
RESTRICTIVE, tedious, antisocial, unpredictable and frustrating. These are just some of the words used by ME sufferer Sue Joscelyne to describe what it’s like to live with the debilitating illness.<br />
<br />
Sue, 61, of Park Road, Leigh, was diagnosed with the condition in November 2001, after suffering flu-like symptoms for about 18 months.<br />
<br />
But over the past year, her illness has plateaued and she says there is hope for sufferers, especially if they get together and support each other.<br />
<br />
The South Essex ME/CFS Self Help group is one organisation that meets to offer advice and information to people living with ME in the area.<br />
<br />
“Support is key for ME sufferers because a lot of them are very isolated,” says Sue, who is the co-ordinator of the group. “Our group makes you realise you are not alone and that immediately makes you feel better.”<br />
<br />
Set up in 2004, when two smaller groups merged, the self-help group meets on the last Thursday of each month, in the Salvation Army Church, in London Road, Hadleigh.<br />
<br />
About 25 men and women, from teenagers right through to people in their sixties, regularly attend the group, with a further 80 members on the books.<br />
<br />
“We have special guests and members passing on information they have gathered. It’s a proactive group. We don’t sit around and moan about our illness. If anybody is experiencing problems they can come along and talk to us.”<br />
<br />
There is also another group called the Essex CFS/ME Service, run from Southend Hospital, but based at Tyrells Centre, in Benfleet.<br />
<br />
GPs can refer patients to the service, which provides information and advice on ME and treatments for it.<br />
<br />
Although Sue’s condition has reached a more manageable stage than when she was first diagnosed, she still cannot work and finds everyday life difficult.<br />
<br />
“Some symptoms have got better but my ability to do certain things is limited,” she says.<br />
<br />
“At best, if I’m very careful in limiting mental and physical activity my symptoms subside.<br />
<br />
“But on a bad day, I feel weak, have a lack of energy, ache all over and my brain doesn’t work properly. Even having conversations is hard.”<br />
<br />
Sue uses cognitive behaviour therapy and pacing, but found graded exercise therapy did not work for her, and caused her to relapse.<br />
<br />
“I’m now doing very strict pacing and I find that helps,” she says. “It’s all about spacing activities within your limitations and not doing too much or too little.<br />
<br />
“A combination of that and cognitive behaviour therapy have helped but only to a certain level. It’s a case of managing my symptoms.”<br />
<br />
For Sue, one of the most frustrating things about her condition is the way the public views the illness.<br />
<br />
“The biggest thing that gets to a lot of people with ME is others don’t realise how bad you can feel,” she says. “There is still a stigma around ME. Even friends and families don’t understand it and are not able to accept you may be ill year on year without improving.”]]></description></item><item><title><![CDATA[Accept ME as I am, says sufferer]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=fbf17d6f-f509-42f5-9f51-3524abda9bfb#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[by Ruth Davies<br />
<a href="http://www.westerntelegraph.co.uk" target="_blank">http://www.westerntelegraph.co.uk</a><br />
<br />
As ME awareness week rolls out a nationwide programme of events, a local mother-of-two with the illness is calling people to help British sufferers by signing an on-line petition.<br />
<br />
Ruth Roberts, aged 50, has been affected by ME, Myalgic Encephalopathy, for nearly 11 years. It's also known as Chronic Fatigue Syndrome, which gives an indication of how it affects its 250,000 British suffers.<br />
<br />
"It's like having a bad case of flu where your muscles ache and you feel exhausted almost all the time."<br />
<br />
"Sufferers frequently don't look ill, so people assume there's nothing wrong with us," said Ruth.<br />
<br />
Ruth, who gets around her home village of Llanteg on a mobility scooter, has learned that having ME means that every ounce of energy has to be budgeted.<br />
<br />
Ruth knows she is one of the lucky ones. An estimated 60,000 people are so severely affected they are either bed or house-bound, some are unable to tolerate noise or light.<br />
<br />
She is a keen local historian, and secretary of the Llanteg Historical Society, and finds she can carry out her research or writing while resting in bed.<br />
<br />
"I don't campaign for awareness into ME as much as I should, as I prefer to focus on other things, but as this is ME Awareness Month, it's a good time to make people aware of the illness," she said.<br />
<br />
"We sometimes have to explain about our illness to the health professionals, rather than the other way around, so it comes as no surprise that there is no fight for research and treatment.<br />
<br />
"There's no cure for ME, and no simple diagnostic test, and it is still viewed by doctors as a psycho-social syndrome and not an organic neurological disorder.<br />
The on-line petition was started by ME sufferer Konstanze Allsopp, and has already attracted over 5,000 signatures.<br />
<br />
The petition calls on Tony Blair to get the health service and medical profession to accept the WHO classification.<br />
<br />
"The more support we get, the more likely we are to get proper research into the causes, and hopefully, one day, the cure for ME," added Ruth.<br />
<br />
*To sign the petition, visit <a href="http://petitions.pm.gov.uk/ME-is-real" target="_blank">http:/petitions.pm.gov.uk/ME-is-real</a>.<br />
To contact the Mid and West Wales ME Group visit www.midwalesmegroup.org.uk or call the membership secretary, L. M. Jones, on 01970 627290.<br />]]></description></item><item><title><![CDATA[Woosnam overcoming illness worry]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=fe408c41-4f76-48a7-9058-3c0d64564729#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[<a href="http://news.bbc.co.uk/sport">news.bbc.co.uk/sport</a><br />
<br />
<font size="2">Ian Woosnam failed to win a place in the Open during qualifying at Sunningdale on Monday, but just to be playing again was a relief. </font>
<p> <font size="2">Last year's Ryder Cup captain returned to action for the first time since mid-May because of post-viral fatigue syndrome Myalgic Encephalomyelitis. </font></p>
<p> <font size="2">The 49-year-old Welshman had rounds of 69 and 71 for a level par total but was pleased just to be back competing. </font></p>
<p> <font size="2">"I got tired the last nine. I just collapsed, but I got round," he said. <!-- E SF --> </font></p>
<p> <font size="2">"My feet are aching, my legs are aching. I'm knackered. But at the Masters I could only walk about 150 yards because I was in spasm. </font></p>
<p> <font size="2">"I've mostly been playing in a buggy the last couple of months. I'm only 60-70%, but at least I know what it is in. I got a virus in Asia and it took me over the top. </font></p>
<p> <font size="2">"I've basically got to rest. I've bashed my body for 30 years and I've just got to eat properly, not drink too much - very difficult! </font></p>
<p> <font size="2">"People have taken 10 to 15 years to get over this, but hopefully I can play every week now." </font></p>
<p> <font size="2">Woosnam, who has also entered for the European Open and Scottish Open that follow in July, is down to 614th in the world having failed to earn a single penny so far this season. </font></p>
<p> <font size="2">Sixteen qualifying places for the Open were up for grabs at Sunningdale, but there was little joy for the Welsh contingent. </font></p>
<p> <font size="2">As well as Woosnam missing out, compatriots Sion Bebb, Jamie Donaldson, Garry Houston, Mark Pilkington, Philip Price, Kyron Sullivan and Gareth Wright all failed. </font></p>
<p> <font size="2">Pilkington in particular endured a miserable two rounds, ending on 13 over, while Sullivan missed out by a shot after hitting a decent three under par total. </font></p>]]></description></item><item><title><![CDATA[How ME devastated my life]]></title><link><![CDATA[http://www.mesufferersmalta.org:80//Default.aspx?pg=e49152b9-8a6b-40ed-80e4-df652c811f14&detail=fe5db129-ed64-456c-bb97-77d943199709#038f686d-6cc4-45e6-a8a1-c3414c3ef15e]]></link><description><![CDATA[<a href="http://www.cambridge-news.co.uk" target="_blank">http://www.cambridge-news.co.uk</a><br />
<strong><br />
</strong>Heart pounding, head swimming and his legs like jelly, Steve Baker slumped into a chair.<br />
<br />
On holiday in Florida, with his wife and young son, he had collapsed in the street. Helped into a hotel lobby, he sat there for five hours before summoning the strength to move.<br />
<br />
For a fit, active 27-year-old, it was terrifying. Now, more than 25 years later, Steve (not his real name) knows it was the start of Myalgic Encephalomyelitis - the chronic fatigue syndrome known as ME.<br />
<br />
"It felt a bit like a heart attack," recalls Steve, 53. "The next day I got up and felt fine, so I decided to go for a swim. But it made me feel like I'd been hit by a bus."<br />
<br />
Before going on holiday, Steve had endured a bad bout of gastroenteritis but, a self-confessed workaholic, he battled on regardless. "I was used to having minor illnesses, which I pushed myself through," he says.<br />
A computer programmer at the time, he planned the holiday in the States to coincide with a job interview there. So falling ill - and finding himself unable to push on as normal - was a real blow.<br />
<br />
"I had every hospital test known to man; I was like a pin cushion," he remembers. "But all the results came back within the normal range. I couldn't believe there was an illness that medically a) couldn't be diagnosed and b) couldn't be fixed with something."<br />
<br />
Determined to conquer the chronic fatigue he was feeling, he tried to live his life - both at work and at home - to the full. And the consequences were shattering.<br />
<br />
After a second collapse, Steve was hospitalised. And then he spent nine long months at home, too weak to get to work. "I felt like I was going to die," he says. "I wasn't in a great deal of actual pain, it was total exhaustion. It was the kind of fatigue where just lifting your head off the pillow is a major accomplishment."<br />
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Fifteen years later, in 1995, he was finally diagnosed with ME, which was a relief, not least because some people - even expert doctors - had suggested the illness was all in his head. But there is no known cure.<br />
<br />
Like an estimated 80,000 other men in Britain, Steve is still dealing with the syndrome which, he says, has shaped every aspect of his life. He is now an electronic design engineer and, although once very ambitious, has to steer clear of the stress of climbing the career ladder.<br />
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By controlling his diet and getting plenty of rest, including a lunchtime nap in the car, he manages to control his ME.<br />
<br />
But although both his wife and son are "incredibly supportive", Steve left the family home nine years ago, unable to maintain an active role as husband and father.<br />
<br />
"For me the weekend is for recovering enough to go to work on Monday," he says. "When you've got a family and a young lad growing up, that's just not a workable approach."<br />]]></description></item></channel></rss>