Media Replies

We are trying to build up a database of media contacts for ME Awareness etc. We would particularly like contact names & email addresses.

After reading your news focus on the use of the Human Rights Act (DN, May, page 18) I thought readers should hear my story.

In 2000, my occupational therapy department decided I needed a profile bed with carer-lifting so my carers could give me bed-baths. My physio also thought this was a good idea as I am unable to leave my bed and have had back pain from being propped up with pillows and slipping. As I was sleeping in a double bed with my husband, I asked for a double bed. This was refused as the authority would only pay for a single bed. We offered to pay for the other half of the bed, but this was refused and stalemate ensued for 18 months, with letters passing back and forth.

I took advice from the Disability Law Centre, which advised mentioning Article 8 of the Act – the right to private and family life. My advisor also told me to mention we had offered to pay for the bed, so the authority would have no legal defence.

I sent these comments and said I would wait three weeks for a reply. If unfavourable, I would take them to court. Within three hours the authority had discovered enough money to buy the whole of my double profile bed, which was installed in December 2001. It has made a phenomenal difference to my life.

If something similar happened in future, I would have no hesitation in using the Act again.

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Disability campaigners have called on the government to plough greater resources into finding a treatment for ME, following claims of misdiagnosis and mistreatment by the NHS.

The 25% ME Group, which represents people with the most severe forms of the condition, accused the government of "wasting millions on inappropriate treatment" by using psychological therapies such as cognitive behavioural therapy to help treat patients with ME.

The group said: "The government has chosen to pour many millions of pounds worth of public money into funding psychologically-based treatments and management strategy therapies, which simply do not work for ME patients and indeed can cause more harm to ME sufferers."

The national support group claims 95 per cent of its members who had tried such therapies reported a worsening of their symptoms.

Instead, it is calling for the government to redirect resources into researching the physical causes of the illness, which they say is currently being funded through private donations.

Action for ME, another ME charity, said psychological therapies can help "as a coping strategy to manage the illness", but reinforced calls for "fully funded biomedical research."

A spokeswoman for the Department of Health said: "It is for clinicians to decide how best to treat their patients."

She said the government had invested £8.5 million in Chronic Fatigue Syndrome/ME services via the Medical Research Council (MRC).

The MRC said it would fund proposals which had an "alternative approach" but that nothing of sufficient quality had yet been proposed.

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I have spent 12 years caring for my wife, who has severe ME, and even though each day is a day of indescribable agony, I am greatly distressed by the news of a £503,000 lottery grant to UEA for ME/Chronic Fatigue Syndrome research, to be led by the charity Action for ME.

I believe Action for ME has "sold out" to the powerful British psychiatric lobby, which pursues a discredited policy of behavioural intervention and graded exercise therapy.There is not one published paper, as opposed to opinion, proving that ME/CFS is a psychiatric condition, while more than 2000 papers have been published internationally proving that ME/CFS is a neurological, physical illness and that graded exercise especially is dangerous to sufferers.

This research is bad news for sufferers, it looks like being a waste of scarce money that could be better spent on physical research and it will simply condemn sufferers like my wife to even more years of agony.

This research has nothing to offer the ME community. What is desperately needed is physical research to find a cure. Not one penny of government funding has yet been committed to this.

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A drug used to treat herpes infections has produced a dramatic improvement in patients severely affected by ME, or chronic fatigue syndrome.

Sufferers who for years had been unable to leave their homes now report being able to resume normal life.

This is a remarkable result for a treatment for this complex and controversial disorder that is thought to affect as many as 240,000 people in Britain and for which there is no cure.

The results, reported at a scientific conference earlier this month by Professor Jose Montoya of Stanford University in California, involved 12 patients who had been given the powerful drug, valganciclovir, which targets the human herpes virus (HHV-6). Nine of the patients experienced a great improvement.

One of Montoya's cases was onetime champion figure skater Donna Flowers, now aged 50 and working as a physiotherapist, who lives in California's Silicon Valley.

"Two years ago, I was spending 14 hours a day in bed and my brain was so fogged I couldn't write a letter," she says. "I wasn't functioning at all. I'd been diagnosed with chronic fatigue, but the doctors didn't have anything to offer. I had to employ a full-time nanny just to look after my three-year old twins.

However, she is now back at work, treating young Olympic hopefuls, the nanny has gone and she's just started ballet lessons.

"When Donna came to see us, her energy levels were around 10 per cent of what she considered normal," says Montoya. "Today, she is functioning at 90 per cent."

One patient who could barely walk around the block is now cycling three hours a day, while another who could not even get down the stairs to breakfast is now up every day at 7am.

The professor reported his findings at a conference on the HHV-6 virus, which was held in Barcelona earlier this month.

While it's well known that some patients with CFS have signs of various viral infections, this is the first time that treating one of the viruses has been shown to be so effective.

"I was amazed by the results," Says Montoya, who runs the infectious diseases clinic at Stanford. "Donna was sent to me because high levels of another virus (Epstein Barr) had been detected in her system.

"I found high levels of HHV-6 virus as well, so I treated her with valganciclovir to bring down her viral load.

"I'd hoped it might help a bit, but I didn't expect the results to be anything like as dramatic. It was pure serendipity."

Valganciclovir is licensed to treat HHV-6 infections of the eye, which can affect transplant or cancer patients with severely weakened immune systems.

HHV-6 is not the same as the herpes virus responsible for cold sores. Most commonly, it causes roseola infantum in children, who get a fever and a rash.

"I have treated hundreds of immune compromised patients with the drug, so I am very familiar with it," says Montoya. "It can have serious side-effects so you have to monitor patients very carefully. But so far none of the CFS/ME patients have reacted badly to it."

All the experts agree that a lot more research will have to be done before valganciclovir can be widely used as a treatment.

"There is a long history of linking CFS/ME with some sort of viral infection," says Charles Shepherd, a medical advisor to the charity Action for ME.

"About 75 per cent of cases begin with an infection which the patient never properly recovers from, so it is quite likely infectious agents lurk in the body. While the role of HHV-6 is certainly plausible, we will have to wait for a larger trial that is properly controlled."

Montoya agrees. "These were individual cases and it is always possible the results were due to a placebo effect," he says.

"However, that is unlikely because we saw a worsening of each patient's condition around week three to four of the treatment, probably when infected cells were dying off. After that came the improvement.

"That is not a pattern you get with placebos. But we don't know yet why the drug makes such a difference."

The possibility that valganciclovir could eventually provide an effective treatment for some cases of CFS is just part of a wider picture. Over the past year, genetic research has provided a new understanding of the disease that could eventually lead to new therapies.

For years, the conventional view has been that there is no known cause, no way to diagnose it and no effective treatment

Some doctors and health workers believe it is the result of social and psychological factors – and best treated with psychotherapy and exercise.

Now it is becoming clear these patients have "a disturbance in their body's natural way of dealing with infection," says Malcolm Hooper, Emeritus Professor of Medicinal Chemistry at the University of Sunderland.

Hooper was one of the speakers at a conference in London for ME Awareness Day on Friday. Another speaker was Dr Jonathan Kerr of St George's Medical School in London, who recently published groundbreaking work on the links between genes and CFS/ME.

"We've found that the genes in patients' white blood cells – a key part of the immune system – are switched on and off in an abnormal fashion," he says.

The hope is that a relatively old drug, called interferon beta, can help to restore the balance. A controlled trial is planned.

What researchers such as Kerr find disheartening is that there seems to be little official support for this biological-based research in Britain. The bulk of the funding has gone to the psychological approach.

But many hope a parliamentary inquiry looking at the progress of CFS/ME research will find that research involving genes, viruses and the immune system would benefit patients.

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As this is ME Awareness Week, I'd like to point out that some sufferers who are reasonably mobile are frustrated, when out and about, by folk saying "you always look fine when I see you".

A moment's thought will tell you that when you do not see them it is because they are not well enough to come out.

Many chronic, even terminal illnesses such as cancer have no outward signs yet do not provoke such disbelief.

Her 12-year struggle – and call for funding for research into ME – can be followed on www.25megroup.org.

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A Tooting-based doctor is giving hope to ME sufferers after discovering a potential cause and treatment for the mysterious illness.

Dr Jonathan Kerr, who leads a four-strong team based at St George's Hospital, believes ME sufferers have white blood cells that behave abnormally when triggered by an outside virus, such as Epstein-Barr.

This leads to symptoms such as fatigue – ME is often referred to as chronic fatigue syndrome – weakness, headaches and disrupted sleep.

Many doctors have dismissed ME as a psychological illness, to the despair of sufferers, but Dr Kerr's research could lead to a diagnostic test and treatment.

Dr Kerr said: "We first need to work out how ME is caused and that is what we are doing. We can then use that information for a treatment.

"We have our first experimental drug planned for this year. It is a known drug but we will be using it for a different purpose."

Dr Kerr will be giving talks in Ireland and London during ME Awareness Week which starts next Sunday, May 7.

Explaining his devotion to research, Dr Kerr said: "The reason we have taken it up is because ME is an unknown area and research is very badly needed.

Tony Golding, from Network Mesh, a support group for ME Sufferers in Wandsworth and across London, praised the work of Dr Kerr's team. Mr Golding said: "There is plenty of evidence that there are differences in both the brains and the blood of people with ME. But the question is what to do about it.

"Of course, any research and possible treatment is good. ME is an illness that affects at least 150,000 people in this country."

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Trapped in bed for 14 years with chronic fatigue
http://www.dailymail.co.uk/pages/live/articles/health/healthmain.html?in_article_id=393915&in_page_id=1774

By GILL SWAIN, Daily Mail 07:46am 4th July 2006

She can't swallow. She can't speak. She's in constant pain. Yet some doctors say Lynn's illness is all in the mind. Read her story and you'll never be flippant about 'yuppie flu' again:
For years many doctors dismissed ME, also known as Chronic Fatigue Syndrome, as 'yuppie flu'. But last month a coroner gave ME as the official cause of death for the first time in the UK - raising hope among campaigners that the condition is about to be taken seriously at last.

Here, Kay Gilderdale tells GILL SWAIN the heartrending story of her daughter, Lynn, 28, who was struck down by the illness 14 years ago...

The soft cotton curtains are permanently drawn to cut out the summer glare. On the bed in the gloom lies a beautiful young woman with skin so pale it is almost translucent. She is stretched out flat on a sheepskin to prevent bedsores, her head resting on a towel. There is a tube down her nose delivering liquid food, and an intravenous line pumping drugs straight into her chest.

Her name is Lynn Gilderdale, she is 28 years old and this has been her life for 14 years. Apart from stays in hospital when she develops an infection, Lynn never leaves her bed in the small bedroom at the back of her mother's bungalow in the village of Stonegate, East Sussex.

Her legs are paralysed and without feeling, she cannot sit up without passing out and her neck is too weak to support her head. She has lost more than half the bone density in her spine and went through the menopause at the age of 20. She is in constant pain. She cannot swallow. She cannot speak. Her mother Kay, who cares for her, has not heard her daughter's voice since she fell silent in August 1992.

Lynn is suffering from ME - Myalgic Encephalomyelitis - once sneeringly dubbed 'yuppie flu' and suspected of being a psychological affliction that struck mostly people who couldn't cope with the stresses of modern life. Anyone who ever thought that way would find a visit to Lynn a deeply shocking and humbling experience. 'It's like she's in limbo,' says Kay, 52. 'If someone dies, you mourn them, then you get to a stage where you know that person is gone and you move on. But Lynn is neither one nor the other.

'She is stuck in that room, not dead, but not alive properly. If I didn't believe, and she didn't believe, that one day she would get better then I don't think it would be right for her to go on suffering like this for a whole lifespan of 70 or 80 years.'

It is estimated that a quarter of the 240,000 ME victims in the UK suffer severe symptoms such as paralysis and the inability to speak or swallow for months or years, and there are probably several hundred as terribly ill as Lynn. Dr Anne MacIntyre, who wrote one of the first self-help books for ME sufferers and has known Lynn since 1993, says: 'At one time Lynn was so sick she recognised nobody, not even her parents. It is absolutely dreadful. These cases are mostly of people who fell ill in their teens, but they are hidden because no one ever sees them.

'They are too ill to get to a clinic and they are cared for at home by parents or other family. Their GPs have mostly given up on them because no one really knows what is going on with this illness.' Though only able to turn her head weakly from side to side and move her arms, Lynn's strength of character is unmistakeable. She expresses herself through a sign language that she has developed with Kay, and smiles and makes jokes whenever she can. Kay invites people into her daughter's small room, which is cluttered with soft toys, to meet her and take photographs to convince the world this is a real illness and to encourage more research to find a cure.

To describe the pain she is in, Lynn makes stabbing gestures and points to the left side of her chest, sweeps her hand across her forehead to indicate her persistent headache and twists her hands around each other to represent the churning agony in her stomach.

Asked if she is fed up with being like this, she looks both angry and exasperated and holds her thumb and forefinger emphatically an inch apart, meaning: 'Just a bit!' She is very sad, she indicates, but never depressed. I am not brave, I have no choice but to be hopeful, otherwise I would just give up,' her mother translates.

The family's ordeal has been made worse by the fact that, because there is no diagnostic test which can detect the cause of ME's symptoms, many people - including doctors and nurses - persist in believing it is self-induced. But Lynn was a lively, intelligent, popular teenager who enjoyed a happy life with her family. 'We didn't realise how happy until we lost it,' says Kay.

With her mother, older brother Steve and father Richard, a former police inspector who now works for the force as a civilian, Lynn would go sailing and on family cycle rides.

She played the piano and clarinet, won prizes for ballet, and loved swimming and going to the youth club with her friends. Then in November 1991, when she was 14, she had a TB vaccination and immediately felt unwell. Lynn struggled in to school the next day but was sent home and never returned.

Lynn developed flu, bronchitis, tonsillitis and glandular fever, one after the other. 'By February she was really very ill and we were beginning to realise it wasn't just normal bugs,' says Kay.

'Her legs would give way, her memory was getting very poor, she was having awful pains all over her body and a constant, dreadful sore throat and she would often faint.'

Because of her weak legs, she had to start using a wheelchair, then the top half of her body became floppy. By May 1992, ME had been diagnosed and Lynn was bedridden, had difficulty swallowing, couldn't recognise people and her voice had reduced to a whisper.

Frequently, she would fall unconscious while every muscle twisted in violent spasms. 'That first year was so terrible, when we knew she was extremely ill but the tests didn't show anything,' says Kay. 'The first paediatrician we saw said: "It's OK, you've got a fashionable illness. It will go away in time."

'With every other disease you get kindness and sympathy, but though Lynn was very frightened and we were desperate for help, all we got was accusations that she was pretending. It was hugely upsetting.'

Cruel, if well-meaning, experiments were conducted on her in hospital to 'force' her to admit she was making it up. Nurses left her unattended for hours in the theory that she would get up to use the bathroom. This had humiliating results.

'Making it up'

Doctors once administered a 'truth drug' and questioned her over whether she was being abused at home. There was a suggestion Lynn had school phobia and Kay once overheard a nurse speculating that it was Munchausen's Syndrome by Proxy - when a mother induces symptoms in a child to draw attention to herself.

'One consultant was convinced Lynn was orchestrating her spasms at certain times of day so they took away her clock, the radio and TV and the nurses lied to her about the time. She still had the attacks at the same times.

'They abused her verbally, calling her a "silly little girl", saying "Of course you can do it" and telling her to fetch things herself. Sometimes she was in such pain and felt so terribly ill she would ask us: "What is going to happen to me?" But we had no answers for her, and neither did the doctors.'

Medical opinion now mostly concurs that ME is caused by a virus, but there is still no treatment for it besides controlling the symptoms.

At first, however, Kay was advised to make Lynn stick to a timetable of study, rest, socialising and exercise. So she would make Lynn walk down the road even when she felt weak - then had to half-carry her back when her legs gave way.

Kay had trained as an auxiliary nurse and it made sense to her at the time to keep Lynn moving. Now she bitterly regrets it, as she is convinced it caused Lynn more harm.

Softly-spoken and mild-mannered, Irish-born Kay is determined to stay positive, but she had to struggle to come to terms what she saw as her own role in Lynn's suffering. 'I don't beat myself up about it any more because that would be a waste of energy and I need every atom to cope,' she says.

Nine months after she fell ill, Lynn could move no part of her body except her little finger, could not speak and had to be fed through a tube. But Kay and Richard made the courageous decision to take her home.

'They said if we did, there was a risk she would die, but we felt there was a greater risk if she stayed in hospital and didn't get the peace and care she needed.

'For two or three years afterwards she would wake up screaming from nightmares of things that happened to her in hospital. She is still scared of doctors and nurses and I won't have anything to do with anyone who doesn't believe in ME.'

Kay left her job in accounting to look after Lynn and has never left her side for more than two days. Her marriage broke up - she says not because of Lynn's illness but unrelated problems. However, Richard still helps care for his daughter.

Lynn's brother Steve did well at school despite his family life disintegrating and now works in IT and is due to become a father in August.

Kay was only 37 when Lynn fell ill. But for her, too, normal life came to an end then. She has a carer in twice a week so she can go shopping and see people.

'I don't resent what it has done to my life but I do resent whatever has made her so ill. It's been heartbreaking to watch my child lose her faculties one by one.

'It is still very hard for me to see mothers and daughters together or groups of teenagers dressed up and laughing or to hear a family in the garden having a barbecue with children running around.

'If I lived somewhere like a high-rise flat, I don't think I could have coped. And at least I can walk in my garden.'

Every birthday and Christmas has been sad as the years have passed with no improvement, though Kay tries to make them special. 'For her 18th, I wrapped 18 little presents and put them in a biscuit tin which I iced and put candles on. Lynn said it was a lovely cake but she couldn't eat it, then I showed her what it really was.'

In her late teens, Lynn's body stopped producing oestrogen and she was diagnosed with premature ovarian failure. She has been on HRT ever since, but the lack of hormones contributed to her severe osteoporosis. She is on 24-hour pain control, plus drugs to prevent sickness and spasms.

Light and noise

Lynn is hyper-sensitive to light and noise and for years could not bear to watch television or listen to music. Now she has forgotten how to read. She has a hamster with which she plays in the afternoons and she watches the darting movements of the tropical fish in a large tank beside her bed.

She loves make-up and jewellery and choosing presents from mail-order catalogues. At her strongest she can make cards for friends. But she suffered a knock back in October. Her lung was punctured while she was having her Hickman line - a semi-permanent catheter through which she receives medication - replaced and she is now sleeping nearly 15 hours a day.

Asked what she would like to do if she recovered, Lynn signals that she just wants to do normal things. And she folds her arms together in a rocking motion to indicate her yearning for a baby.

'She has always loved children and I've told her there are many ways to have a baby even if you can't give birth yourself,' says Kay. 'But I am really hoping that once the virus which caused her ME has finally burned itself out, everything else will start working again.

'People do get better, even those as ill as Lynn. Every time I read of such a case I am pleased for them, but I can't help wondering when it will be her turn.

'If she could come out of that room, it wouldn't matter where we went. It would be enough just to feel the air on our faces, see the sky, be part of the world. Lynn tells me she feels it is all out there, waiting for her to step back into.

'It is not that she doesn't want to. She wants to so much. Who would choose to lie in bed and be injected with drugs so many times your veins collapse over the life she had as an active teenager?

'We need to find the cause'

'Yet the Government is putting money into treatments such as graded exercise and cognitive behaviour therapy - which don't help those most severely affected by ME - rather than into research to find the cause.

'Until a cure is found, the thing which would make the biggest difference to our lives would be for everyone to realise it is a real and terrible illness.

'But a lot of people still say to me they thought ME was "just tiredness". And people like Lynn are still being told: "Pull yourself together." '

For information and advice for anyone severely affected by ME contact The 25 Per Cent Group on 01292 318611, www.25megroup.org, or Action for ME on 0845 123 2314, www.afme.org.uk

PERMISSION TO FORWARD, REPOST, OR USE IN NEWSLETTERS.

Good letter Sue. May we use it on mefreeforall.org even if they don't
have the good
sense to?

Here's my effort for the paper, so that's 2 on the desk we know about
apart from
the online responses.

_*Daily Mail Letters
**
*_Severe M.E. sufferer* Lynn Gilderdale* courageously and selflessly
invited /The Daily Mail/ into a world few would otherwise see and *Gill
Swain* didn't miss a drop of up-to-date information that will be news to
some M.E. sufferers, as well as an education for your readers who have
no experience with M.E. (/Trapped in her bed for 14 years, Daily Mail, 4
July 2006/).

If we do not yet know the cause of M.E., we can say what it is not and
where it is most likely to be found: There is no greater incidence of
psychiatric history amongst people with M.E. than in the general
population. The postmortem evidence from Sophia Mirza, the first death
due to M.E., reinforces the view that Myalgic Encepalomyelitis is a
neurological illness with an, as yet, unknown physical cause, as
categorised by the World Health Organisation.

Yet the Government, with the support of the major M.E. charities, has
already invested £11.5 million in illness management programmes using
cognitive behaviour therapy, developed for psychiatric illnesses and
graded exercise, which leaves many more feeling worse after it than it
helps, sometimes irrecoverably so in a wheelchair and seeks yet more to
run them. But it has given nothing to the more promising genetic
research programme of Dr Jonathan Kerr, which has to rely on charity.

Yours sincerely
drjohngreensmith@mefreeforall.org

Reply to article (online) about our member Lynn Gilderdale that had her
story in the Daily Mail

Regards
Simon Lawrence

"As the leading support charity for the severely affected ME sufferer, we
would like to offer our support and thanks to GILL SWAIN, who had this
article published in the Daily Mail.

Lynn has been a member of our support Group for many years and her story is
very similar to many of our members. Many have been neglected by the medical
profession and in some cases abused by them. It is ridiculous that in this
day and age that the people who we should trust to look after our medical
needs, are in some cases actually doing harm!
Charities like ours are always trying to compact the psychological attitude
that is prevalent in medical circles about this disease The World Health
Organisation and many other researchers have said for decades that this is a
serious neurological disease. Many call for urgent research to find out the
cause(s) of the disease, but this is being hampered by miss-information from
certain Government Medical Advisors (mainly psychiatrists). This should now
change!"

25% ME Group
21 Church Street
Troon
Ayrshire
KA10 6HT
enquiry@25megroup.org
www.25megroup.org
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Dear Editor,

I commend Kay Gilderdale for having the courage to speak out about the awful
reality of her daughter, Lynne's, life with ME.

ME affects not only the patient but the whole family. It becomes impossible
to eat together, visit family and friends together or to take holidays.
Sometimes it is even impossible to speak to one another.

Unfortunately Lynne's suffering is far from unique. There are around 60,000
severely affected sufferers lying hidden away in their bedrooms largely
ignored by the medical profession.

I attended the inquest last month into the death of Sophia Mirza at which ME
was recorded as the cause of death. Sophia had been taken from her home
against her will and sectioned under the Mental Health Act by psychiatrists
who believed that ME is a "non-illness" perpetuated by "faulty illness
beliefs."

The Inquest heard evidence from a Neurologist that inflammation was found in
the ganglia of Sophia's spinal chord. He said, "Dorsal root ganglionitis is
a pathological condition... It lies more in the realms of neurology than
psychiatry, in my opinion."

The scientific evidence for a bio-medical cause of ME is overwhelming yet a
significant minority of doctors persist in their assertion that it is
psychological. Many victims suffer multi-organ damage. I would like these
psychiatrists to explain how a "psychological" illness could cause
inflammation in a spinal chord and extreme neurological symptoms in
thousands of ME sufferers.

Since the inquest our charity, Invest In ME, has been contacted by many
people from all over the world to say that their loved ones also died from
ME. They also suffered disbelief from doctors.

As ME is five times more prevalent that HIV/AIDS I would urge the Department
of Health and the Medical Research Council to urgently look at funding
bio-medical research into this devastating illness before more lives are
lost.

My daughter has lost all her teenage years to ME. I (and thousands of other
parents like me) am in a similar position to Kay Gilderdale.

I never want to find myself in the same situation as Sophia's mother.

Regards,

Sue Waddle

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ME, Royal Free Disease and a psychiatric obsession

The debate about whether the outbreak at the Royal Free was ME is sadly relevant today as the psychiatric profession still attempt to convince doctors that ME is not a physical disease but a state of mind.

The 300 plus studies worldwide which have found serious immunological, neurological, endocrinological and cardiac abnormalities in ME patients have recently been added to by research finding genetic abnormalities. The psychiatrists never refer to this available medical literature but obsessively attempt to find the cause of ME in the personality of patients; initially we were 'yuppies' or type A high achievers, then when this picture did not fit the epidemiological research we became malingerers attempting to avoid work and the stress of everyday life. When this did not quite work either we became people who felt genuinely ill, but weren't!

The disgrace of taking a seriously ill group of people and constructing psychological theories about why they are ill was bad enough back when the Royal Free was closed, but it is still going on in the face of significant medical research proving it irrelevant.

The 25%MEGroup represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. To be so ill and to be faced with a medical profession that thinks ME is somehow psychological has been devastating for thousands of sufferers.

Maybe the latest genetic studies will finally silence the psychiatric lobby who have been so peculiarly intent on persuading doctors and the media that nothing much is wrong with such extremely ill patients.

Hayley Klinger

Media Relations
25%MEGroup
www.25megroup.org

enquiry@25megroup.org

Re: Capital clinic gives hope to ME sufferers - Ruth Armstrong, Health Reporter.

(Edinburgh Evening News, Wednesday, 17 March, 2004)

The Times (July 21, page 3) http://www.timesonline.co.uk/article/0,,2-1702267,00.html

Re: 'Yuppie flu' may not be all in the mind - it might be in the genes

Sir
Your article reports that genetic abnormalities have been found in the blood of ME patients which is yet another study to add to a huge body of research proving that ME is a physical and not psychological illness. Unfortunately the cartoon accompanying your article portrays ME sufferers as indistinguishable from those who would 'rather be watching the cricket' creating the impression that ME is a lifestyle choice for vaguely tired individuals.

The reality is somewhat different. The 25%MEGroup represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. None of us feel fatigued, we are all very ill and a vast amount of research demonstrates the immune/endocrine/neurological and cardiac abnormalities which cause such an extreme level of sickness.

To be so ill and to be faced with a medical profession that thinks ME is somehow psychological has been devastating for thousands of sufferers. Maybe the latest genetic studies will finally silence the psychiatric lobby who have been so peculiarly intent on ignoring the available medical literature and who seem to be on a mission to persuade doctors and the media that nothing much is wrong with such extremely ill patients.

Hayley Klinger
Media Relations 25%MEGroup

Another Reply

Re: Capital clinic gives hope to ME sufferers - Ruth Armstrong, Health Reporter.

(Edinburgh Evening News, Wednesday, 17 March, 2004)

The Times (July 21, page 3) http://www.timesonline.co.uk/article/0,,2-1702267,00.html

It has been expressed in another reply that a ”national specialist M.E. centres are desperately required is not in dispute. It is the kind of treatment they offer that is highly controversial, hotly contested and which causes great anxiety”

The study that is being proposed is not only a complete waste of public money, but it is also short sighted.

We have patient reporting to show that such ‘treatments’ as Cognitive Behaviour therapy and Graded Exercise Therapy, are unhelpful and even make patients suffering from ME worse.

On the ‘treatment’ GET, it was reported that of those who tried this ‘treatment’ (39%), 82% were made worse. CBT had a similar result.

I am particularly concerned that those who are controlling the purse strings are listening to the wrong ‘experts’, something that has already come unstuck in the recent past.

Treating this physiological disease with psychological methods is a medical mistake, we should be promoting biomedical research along the lines that is being done by MERGE – a Scottish Research group in Perth.

People with Myalgic Encephalomyelitis, already feel let down by the lack of services and proper research into this devastating disease that has wrecked so many lives, lets be serious about helping these people with real research studies into the causes and hopefully find treatments that will relieve the suffering that so many have to endure

Simon Lawrence

25% ME GROUP – support for severe ME sufferers

enquiry@25megroup.org

The Editor

Scotsman Publications Ltd

Regent Court

76 West Regent Street

Glasgow G2

9^th January 2004

Dear Sir

Response from the 25% ME Group (Support Group for severe ME Sufferers) to Simon Wessely’s letter to the Scotsman (“Research goes on”) 5^th January 2004

As a patient-led support organisation for severe sufferers of Myalgic Encephalomyelitis (ME), we wish to applaud Margaret Cook’s article which appeared in the Scotsman on 6th Oct 2003 for its forthright honesty in reporting what the patients, carers and families of those suffering with ME had to say about how the illness affects them and how they feel they have been treated (and mistreated) by some parts of the medical profession.

Although Wessely, in his response states that “The evidence shows that the average family doctor is now more understanding and sympathetic to sufferers than before”, from many patients’ experiences, this is actually often not the case, even following the publication of the Chief Medical Officer’s Report on CFS/ME and similar publications.

We feel, it is astonishing that in the 21^st Century the burden remains on the patient to fight to achieve true recognition for the illness that they are suffering from, whatever illness that may be! It seems apparent to us that the medical profession (although saying they are listening to patients) may actually be interpreting what is being said by the patient to their own ends and then dictating forms of “treatment” and “services” for them. At best, they are lumping ME together with other Chronic Fatigue Syndromes and wrongly applying those treatments that may indeed work with some CFS patients but which will not (in the majority of cases) actually be of any benefit to those suffering from ME.

Wessely, in his response in the Scotsman on 5^th January, states “I have been saying for 15 years that this is a real illness, based on my experiences listening to over one thousand patients…” However, based upon a transcript of a lecture given by Wessely on 12^th May 1994 at the 9^th Eliot Slater Memorial Lecture, which has also been highlighted in a separate response to the Scotsman, it is quite evident that he did not always hold such views when he stated at said lecture, “I’m going to talk not about an illness, but about an idea” and further stated that “I will argue that ME is simply a belief, the belief that one has an illness called ME.” This along with many other publications by Wessely et al over the past 15 years, clearly indicates that he does not hold ME to be a real and distinct neurological condition, as accepted by the World Health Organisation ICD10 G 93.3, but rather refers to ME as an “hysterical” condition which merits treatment on a “purely” psychological basis.

He also (along with some other of his fellow researchers) continues to confuse and distort the differences between CFS (Chronic Fatigue Syndrome) and ME. Therefore, rather than dealing with ME as a distinct neurological condition, instead continues to apply to it the umbrella term of CFS (which is a collective term for all types of fatigue conditions, many with a probable underlying psychological basis).

As pointed out by Wessely in his response, it certainly is “a scandal” that there are no, or very few services available for ME sufferers (especially for those who are severely affected by the disease). However, we found it extremely offensive that he chose to express the fact that he and his team in South London had set up a “service” in order to treat CFS and ME sufferers. Unfortunately, the “treatments” currently offered by such “services” to patients with ME, are ones that have clearly been shown by past and present patient reporting (such reports having been ignored by certain elements of the medical profession) to be the most harmful forms of treatment to ME sufferers, especially those who are moderately or severely affected by the illness.

Many such sufferers who have in the past undertaken these forms of “treatment” whilst they were moderately affected, have since joined our Support Group (for the Severely Affected) because, as a result of such treatments, they have now become wheelchair, house or even bed-bound! Feedback received from our membership, many of whom have used GET (Graded Exercise Therapy) in the past, indicates that 83% were made worse by this treatment and the figures for CBT (Cognitive Behaviour Therapy) were very similar.

Another patient organisation also reported large numbers of ME sufferers being made worse by such forms of treatment. It therefore seems incredulous that public funds (in the amount of 2.6 million) have been made available in order to test these “treatments” further, despite very disappointing outcomes with regard to previous research studies and patient reporting. Wessely also states “There are now evidence based treatments available, whilst they don’t cure, do make a difference”. This flies in the face of the above and many other research papers showing that this is simply not the case.

In terms of research, we don’t want just “any research” as stated by Wessely in his response. Indeed, we feel the research that is being conducted at present is not the most effective for ME sufferers. Previous research studies, some of which have been available since the middle of the last century, clearly outline the physical and biological abnormalities caused by this disease. We already have research units like MERGE in Perth, Scotland, and the CFS Research Foundation in England, that are carrying out significant scientific research studies but they are not receiving the public funding required to further such work, but rather we have millions being spent on psychological-based approaches which, in the end, will not unravel the underlying cause of the condition. (This is akin to a sticking plaster being applied to a broken leg!)

From Wessely’s final paragraph, it is quite apparent that he still wishes to denigrate those suffering from ME (even though he expressed in his response that he listens to patients) when he referred to the sufferers and carers who spoke to Dr Cook at the Scottish Cross Party Meeting as “activists” rather than patients who are forced to fight for true recognition of their condition and the suffering that they endure daily, not only caused by the disease itself, but also by the demonization of the condition by certain elements of the medical profession.

It has been expressed in some quarters (even by one of the leading ME support organisations) that such “activists” are actually hindering and demonising doctors such as Wessely and his colleagues, but it should always be remembered that it is the sufferer who has experience of living with this condition and the problems that entails, and it is not the clinician who must endure the stigmatisation which still accompanies this disease.

Yours faithfully

Simon Lawrence

25% ME Group

enquiry@25megroup.org

"Telegraph UK Student health special: beware of first-term burn-out

To compare a severely disabling neuro/immuno/endocrine illness to

student burn-out is absolutely unacceptable.

Mr Britton made a comment saying; "there's a thin line between student ennui and full-blown ME". And there seems to be a collation between fatigue and the neurological condition (ME) within this article.

ME patients have struggled to have the

severity of the illness recognised in the face of ignorance and

prejudice, much of which is based on the assumption that ME is

something to do with fatigue. As research has finally proved how ill

we actually are it is shocking to see the confusion caused by some points in this article

To be seriously ill and not taken seriously is not just frustrating,

degrading and humiliating, more prosaically it leads to lack of medical

care, lack of treatment, lack of funds for research and decades in bed

too ill to take part in the life we used to have.

Hayley Klinger

Media Relations

25%MEGroup

enquiry@25megroup.org

www.25megroup.org

21 Church Street

Troon

Ayrshire

KA10 6HT

http://www.telegraph.co.uk/health/main.jhtml?xml=/health/2005/08/22/hreverse22.xml&sSheet=/health/2005/08/24/ixhmain.html

Sir

Your article about the recovery of Christina Hopkinson from chronic fatigue syndrome with the help of reverse therapy highlights a problem that ME sufferers have faced in their fight to have the disease taken seriously.

You have confused chronic fatigue syndrom (CFS) and ME and assumed they are the same illness. The critical distinction is that ME is classified as a serious neurological illness alongside MS and Motor neurone disease by the world Health Organisation as ICD-10, 93.3, whilst chronic fatigue states are classified as mental health disorders. This would explain why talking therapies can help some patients with a diagnosis of chronic fatigue but cannot and do not cure ME.

The 25%MEGroup represents the interests of severely ill ME patients, many of whom are so ill that they are totally bedridden, some of whom are wholly dependent on carers for the basic functions of daily living and others who are lucky enough to be able to leave home in a wheelchair occasionally. None of us feel fatigued. We are all very ill and a vast amount of research demonstrates the immune/endocrine/neurological and cardiac abnormalities which cause such an extreme level of sickness.
To be so ill and to be faced with a media and medical profession that cannot shake the thought that ME is somehow psychological has been devastating for thousands of sufferers, and has resulted in us being denied treatment, research and benefits.

Your article about Christina has unfortunately contributed to the totally discredited view that ME is a trivial fatiguing illness which could be fixed if only sufferers would look into their personalities. The reality is that if you recover by changing the way you think, you did not have ME in the first place.

Hayley Klinger
Media Relations
25%MEGroup

enquiry@25megroup.org