Member’s Media Items

Information Needed

We are trying to build up a database of media contacts for ME Awareness etc. We would particularly like contact names & email addresses. Please send them to the group office. Thanks!

CAS Condemns Benefits Rollercoaster

Some of Scotland’s most vulnerable people are being denied a basic living income by a welfare system that too often fails those with a disability or illness.

A damning new report by Citizens Advice Scotland into disability and sickness payments claims that “obstacles are being put in the way of legitimate claimants at every stage of the process”. ‘Riding the Benefits Rollercoaster’ reports that the problem lies in a complex and confused menu of sickness and disability benefits – each with its own qualifying criteria and process – which fails to join up into a coherent system of support.

CAS chief executive Kaliani Lyle said: “Disability and sickness benefits are intended to act as a safety net to support those who cannot work, and to provide help towards extra care, mobility needs and other costs associated with disability.

“But because these benefits are so complex to apply for, many CAB clients miss out simply because they do not realise they qualify. For those who do not apply, the application process often requires the support of a CAB adviser”.

Lyle added; “The welfare system should work smoothly to give people with sickness or disability an opportunity to live their lives with some dignity and security. Not condemn them to roller-coaster experience of labyrinthine regulations, endless reviews and poverty incomes.”

Painful Effects of Little Known Illness

Article in local Bourne publication

By John Taylor

If you think that ME sufferers are simply ‘very tired’, one Bourne woman would like you to think again during ME Awareness Week this week.

Lyn, has been ill with ME since 1990 and confined to bed since 1998.

She explained: “I had the symptoms for two years – I became more and more exhausted, feeling sick and having dizzy spells. I thought I was just unfit, so I tried to do more, which only made it worse.”

Lyn was working as a day nursery manager in Leeds at the time and had to give up her job and move back to Bourne to live with her parents where she lived for three years and slowly improved enough to be able to move into her own house. At that time she could get about with the aid of a mobility scooter and walking frame.

But in 1998, Lyn suffered an attack of bronchitis and relapsed. She has been bedridden ever since. Now her life revolves around her bedroom. “I have to have my curtains closed,” she said. “I can only tolerate low levels of light because of acute light sensitivity. I am constantly in severe pain in all my limbs, back, head and eyes.”

Lyn is concerned about prejudice and misunderstanding of the condition. “All sufferers experience it because people just don’t understand the fatigue, pain and disability they have to live with. Even other ME sufferers can sometimes be intolerant. Those who have improved slightly often say that severe sufferers have ‘given up’. It makes you angry sometimes. Housebound and confined-to-bed sufferers have particular problems. We are not seen, seldom visited by medical and social care professionals, unable to attend hospital or GP appointments and are cut off from the rest of the world” Lyn said. “Many people erroneously believe ME to be a psychological condition, but they are mistaken. It is a serious neurological condition which can lead to severe long-term disability.”

The World Health Organisation (WHO) agree with this and the Chief Medical Officer has reported that the long-term effects of ME on health could be considered alongside MS and Motor Neurone Disease.

The 25 per cent ME Group represents the most severely affected ME sufferers. All have extreme exhaustion beyond normal fatigue, abiding muscle pain in all limbs and cognitive difficulties of thinking, memory and concentration. Some cannot walk or talk at all, need to be tube-fed and intensively cared for, sometimes in hospital.

Lynn’s Lust for Life Fuels Fight for Recovery and Research

The Courier, 14^th May 04 (extract)

By James Pennink

At the age of 14 Lynn was a lively, fun-loving girl with a busy social life, lots of hobbies and a head full of dreams. Lynn now 26, suffers from a severe form of ME.

Her ordeal began when she caught a viral infection in November 1992 which is how problems begin for most sufferers.

Kay, Lynn’s mother, said only a few months later she was bedridden, continually exhausted and could not even sit up to watch TV. “It affected every system in her body and she was confined to her room in terrible pain. We desperately tried to find some answers but no-one could help.”

“She has totally missed out on her education and teenage years. Twelve years later, she can no longer recall her life before and the only time Lynn gets to leave the confines of her bedroom at home is to visit the hospital when she is even more poorly.”

“As if this was not bad enough, many within society and the medical profession do not believe in the ailment. However, Lynn continued to fight for recovery with great determination and an extraordinary lust for life.”

Lynn recently became the public face of the 25% ME Group during ME Awareness Week. The aim of this is to educate people about the reality of this condition and campaign for funding for much needed research into the biological causes, diagnosis and treatment.

Kay and Lynn highlighted from the recent 25% ME report about essential services for the severely affected, the need for greater access to NHS services and for greater acceptance of the condition and the fact that many of the treatments on offer at the moment, ie. CBT/GET actually cause more harm than good.

Lynn finished by saying, that she will keep fighting to get better and that she did not live through the last 12 years not to get well and live a proper life.

Health Conference Hears Advice of Expert Speakers

Local Lockerbie publication, 20^th May, 2004

This article appeared in the local paper following the Lockerbie CFS/ME/FMS Conference.

Scores of people attended a major health conference in Lockerbie yesterday.

Dumfries and Galloway ME Network organised the showcase event, in association with the health board, to look at the future direction for chronic fatigue illnesses, in particular ME, CFS and FMS.

Expert speakers addressed sufferers, carers and medical professionals on different aspects of care, treatment and research.

Dr Gregor Purdie focused on developing a strategy for the region; Simon Lawrence from the 25% ME Group talked about people severely affected with ME; Theresa Lawson looked at benefits; Dr Harden Carter gave the Scottish Executive perspective and chairman of the ME Research Group Dr Vance Spence looked at current research and developments.

A range of workshops were a chance for participants to share their experiences and ideas, and discussions also took place on educating children with ME and maximising benefits and support for sufferers. The aim of the conference, the first of its kind in Scotland, was to increase the profile of fatigue illnesses and strive towards a better co-ordinated care service.

Network Chairman, Denis Turner, said the day had been a great success and he has high hopes it will now pave the way for a national conference in Glasgow or Edinburgh.

ME Robbed Me of the Best Years of My Life

Carlisle News & Star, 2nd June 2004

By Roger Lytollis

In 1993 Jo-anne was a confident, bubbly 25 year old with a job, a boyfriend and an active social life. On a typical day Jo-Anne would get up at 6.30am and take her dog for a walk before driving to work at Cumbria County Council. Jo-anne also had two part-time jobs. After work she’d go to the gym or for a bike ride. At weekends she’d be out clubbing.

Everything changed 11 years ago when Jo-anne contracted ME. She has been unable to work since 1994. She has been single for nine years and has spent six years bedridden.

Jo-anne’s health has now improved but her life is still dominated by ME, which affects an estimated 240,000 people in the UK. Some have the condition for a short time and make a full recovery. For others, like Jo-Anne, the effects never go away.

Her life changed in September 1993 when a chest infection floored her for three weeks. During the next two years Jo-Anne caught countless viruses and suffered symptoms including blurred vision, insomnia, nausea and breathing problems.

In the summer of 1995 she was rushed to hospital during a holiday in Kenya and Jo-anne says she nearly died. She flew home and spent the next six years in bed, leaving the house only to visit her GP. She couldn’t speak for nearly a year. She was too ill to chew solid food and she lived on Slimfast milkshakes. Her weight plummeted to just six stone.

But there is no medical procedure to diagnose ME, and this undermined Jo-anne’s credibility and treatment. “I had every investigation under the sun and enough blood taken to sink a ship. I was the sickest ‘well person’ the medical profession had ever seen. I had a 14 month struggle to be awarded Disability Living Allowance.

“I tried every drug, herb, supplement, diet, therapy and management strategy known to man. An extensive psychiatric evaluation, at the request of my health insurance company, concluded that my mental health was remarkably good and I was severely physically disabled.”

But Jo-anne’s case, and that of other ME victims, was damaged in 1996 when an influential report concluded that the condition was psychological. Jo-Anne found previously supportive doctors were suddenly hostile. “One locum doctor visited me and said: ‘You don’t know what tired is. My wife’s away this week. I’m working shifts and I’ve got to cook my own dinner’”

In 2000 Jo-anne’s health began to improve when she embarked on a strict regime of moderate activity and rest. But she still cannot work and has to pace herself very carefully.

Jo-anne spends most of her time at home. Contact with the outside world is largely limited to fellow ME sufferers on the internet.

“Every day’s the same,” she says. “I don’t get Saturdays and Sundays off. Statistically, my chances of a complete recovery are about zero. The vast majority of severely affected people don’t improve.”

“I think being half-recovered is harder than being completely bedridden. You’ve been given a glimpse of a normal life but you can’t quite take it.”

Jo-anne’s last relationship ended nine years ago. “We were both very sporty, then I became ill and started going to bed at eight o’clock. I don’t feel angry. I can understand why he couldn’t cope with it.”

“I did lose friends, but as much on my part as theirs. When you’re ill you don’t want people coming round saying: ‘Guess what I did last night?’ Their lives have moved on. They’re married with kids. My life’s the same at 36 as it was at 25. I’ll never have children now and I probably would have done if I was healthy. These are the best days of my life and I’m stuck inside. But you can either become bitter or make the most of the situation you have. I’ve got a lovely home and supportive friends and family. I’ve gained friends with ME who are just fabulous. If you say: ‘I made spaghetti bolognese today’ they know what an achievement that is.”

The medical profession still doesn’t know what causes ME but recent research has contradicted the sceptical report of 1996. Jo-Anne is now trying to raise awareness of the condition. She has formed an internet support group and says: “The treatment of people in Cumbria is still virtually non-existent and no-one seems to care or offer to help.”

Jo-anne knows that some people who see her out and about find it hard to understand that she has a serious illness. “I said to my mum: I wish I could go around with my arm in a sling’. People see me on a good day when I’m in town shopping. They don’t see the four days after that when I’m vomiting, when I can’t walk or speak. Every nice thing has to be paid for. But that doesn’t stop you doing things. You have to have a life.”

Bedridden Woman Fights For Treatment

A Bedridden south Wiltshire woman is fighting to get vital ME treatments provided on the NHS.

Sufferer Sheila (53), is part of the 25% ME Group – a unique organisation run by people with chronic myalgic encephalomyelitis and which provides support to sufferers. Sheila has suffered from the debilitating illness for the past seven years and will be supporting campaigners demonstrating outside 10 Downing Street as part of ME Awareness Week, May 10-16th. The group has been working tirelessly to get government and health-care professionals to recognise that existing ME treatments are failing.

About 50,000 people in Britain are thought to have ME, and there is no specific treatment for it. Sufferers with severe ME experience a range of problems, including visual impairment, muscular limitations, chronic weakness of limbs, muscle pain and hypersensitivity, and can be wheelchair-, house- or bed-bound.

In January this year, the 25% ME Group published a report after surveying 437 of its members. It is now sending out more than 6,000 copies to health-care professionals, in an attempt to get the condition recognised and treated properly.

The report shows that:

· 61 per cent of ME sufferers who had received a community care assessment felt that their care package was inadequate;

· A further 58 per cent had waited more than six months for an occupational therapy assessment and half had not received an assessment at all;

· More than half the survey (53 per cent) had never received a home visit from their GP and 58 per cent were completely unable to attend a surgery as a result of their illness.

The report concludes that, although awareness of ME has increased, sufferers still experience problems in getting access to basic services, and more in-depth studies are needed.