This book makes instant connections with the heart of America but it’s not about someone living the great American dream.

Because the unnamed narrator has M.E., he has to make the best of the ‘small life’ that came calling when least expected – in the company of a heffalump of a dog called Arthur.

British writer Roger King, author of four previous novels who has worked extensively in Africa and Asia and held university posts in international development and creative writing, sends his character to an obscure North-West university where he has been invited – surprise, surprise – to teach creative writing.

Through an undoubted ability to ingratiate himself with women of a certain age who make up most of the faculty, he scams his way in. They like his quiet charm and good manners. He hates the fact that that M.E. is always in the background, sending him to the couch for hours on end when no one else is about.

Then he’s on his own, scrupulously turning up to teach his classes, taking the pay cheque, marvelling at the cute chicks with long, loose limbs, but rarely seeing any other member of staff. He can’t take part in college social life and he daren’t risk the possibility of collapsing in front of them. From the point of view of his colleagues, well they just don’t have a view. He’s become the invisible man.

The occasional friendly neighbour, the waitress in the local diner, his landlady become his only companions and sometimes more.

He moves in with Mary, a paleontologist with secrets of her own, and her daughter. Then there are other women, other sexual opportunities, as he embarks on a mind-numbing but reviving road trip when he’s had enough of the university, and they’ve had enough of him.

The author writes that the book – about someone with such a small life and so limited horizons – could never be about exploring the America of boundless opportunities. Instead, it explores whether the country shows enough compassion towards the teeming masses who can’t be part of the fabled dream.

It discovers that collectively it doesn’t. You’re on your own, buddy! Tough, deal with it.

The book is huge in scope and ambition, characters and locations are acutely observed and and the language is utterly unsentimental. It is a riveting read… really, it is.

Love and Fatigue in America by Roger King
Autobiographical fiction
Cloth, ISBN 978-0-299-28720-7, 254pp
e-book, ISBN 978-0-299-28723-8
Terrace Books: a trade imprint of the University of wisconsin Press

The ME Association is launching a major new survey today to ascertain people’s feelings about Cognitive Behaviour Therapy, Graded Exercise and Pacing. It is for people with ME/CFS or Post Viral Fatigue Syndrome who have actually tried any of these approaches whether by attending a course or self-managing their symptoms.

The survey will run through the rest of the Spring and during the Summer and can be completed online by clicking on the link that appears below. The questionnaire can be filled up in bits for people who are too ill to tackle the whole thing at once – saving what you’ve done for your next visit.

Plenty of advance notice will be given about when we intend to close the survey and the results will be published towards the end of the year.

If possible, please take part online. It will make the process of analysing the results so much easier.

Previous surveys have found that while – for some – these therapies improved their symptoms, significant proportions found they either had no effect on them whatsoever and in many cases actually made people feel worse.

WHY DO THE SURVEY NOW?

We expect the results will influence the next review of the NICE Guideline on ME/CFS treatments, which is due to be announced next year. We’ll include the results in our submission to the review which may lead NICE (the National Institute for Health and Clinical Excellence) to come up with new guidance to doctors.

And the evidence we gather from people who have tried out these therapies may be helpful to medical researchers when they apply for funding for new studies into these approaches. As yet there has been no substantive research carried out into Pacing.

WHO CAN TAKE PART?

Anyone who has – or has had – ME/CFS or PVFS AND and have taken part in a course of CBT, GET or Pacing, either attending in person or going online. If you only completed part of a course, we would still welcome your views.

OR you must have self-managed your symptoms using one or more of these therapies

OR have been refused a course.

HOW CAN I TAKE PART?

Either go online now by clicking on the link below, and saving the form when you’ve had enough. You can always return to the form by clicking on the link which is showing in our “Quick Links’ box. It will take you straight to where you left off and, at any point, you can look back at or alter your earlier answers if you wish.

Or you can request that the form be sent to you by email for downloading to your screen for printing off yourself. Email Gill in our office and she will send you a copy. Please make sure you post the form back to Gill by the middle of August.

If you don’t have an email address, for have difficulty reading on screen, ask for a paper copy to be posted to you by writing to Gill Briody, Ramsay Research Fund, ME Association, 7 Apollo Office Court, Radclive Road, Gawcott, Bucks MK18 4DF, or phoning 01280 818964. PLEASE ALLOW TWO OR THREE WEEKS FOR THE FORMS TO BE SENT TO YOU. Again, we ask for the forms to be returned by the middle of August. But please take part online if at all possible – it will save us expense and probably be easier for most of you.

To read more about the background to the survey, please click HERE.

The survey is also being announced in our ME Essential quarterly membership magazine, out today. If you would like to receive a copy of this magazine, priced at £6 to non-members, please phone Gill on 01280 818964 and have your credit or debit card to hand.

It is time to add May 12th to our list of dates worth commemorating — especially for 1 million in the United States who suffer from Chronic Fatigue Syndrome, also known as Myalgic Encephalomyelitis.

This year marks 192 years since Florence Nightingale’s birth in Florence, Italy to wealthy English parents. As a young woman, she felt herself called to take up nursing. Later, her heroic work caring for wounded British soldiers during dark nights of the Crimean War earned her worldwide fame as “The Lady of the Lamp.”

Nightingale is given credit for inventing secular and modern nursing because she recognized that troops were dying, not just from their untreated wounds, but also from malnutrition and dehydration.

She followed up her war work by writing a landmark text for nurses and founding a training school in London. Her natural talent for numbers helped her keep detailed data on patients, and she ultimately won extra renown as a statistician.

But from 1857 Nightingale found herself often disabled by poor health, which some suggest may well have been Chronic Fatigue Syndrome(CFS). As a result, Nightingale now has been adopted as a kind of patron saint by for this under-studied disease. CFS sufferers here and abroad (17 million) commemorate her birthday as a kind of rallying point; their own lamp in the dark.

And the world of CFS is dark indeed — an abysmal place of unmediated pain, disability, hopelessness, financial ruin and sometimes suicide. One doctor told me that if she were to have to choose for herself between CFS and cancer, she would choose cancer. “At least for cancer, there are treatments; if they fail, you die. With CFS you are the living dead,” she said.

Everything about CFS is controversial. It has been on the medical agenda since 1934, when there was an outbreak centered on a Los Angeles hospital. Currently 63 outbreaks have been documented, but still what is not known dwarfs what is known.

What is known is that it is a disease of the immune system, related to and in some cases overlapping fibromyalgia, a disease of the muscles. It also involves the neurologic and endocrine systems. The disease has broken out in startling clusters – locations in Nevada, Florida, New York and California among others just in the 1980s.

Its deadliness is slow and subtle. Studies suggest that it takes 20-25 years off the average sufferer’s life, but there are no dramatic sudden deaths or gory symptoms to attract attention.

Expert virologists such as Columbia University’s Dr. Ian Lipkin agree that the disease may yet turn out to be viral. But the once-exciting report from the Whittemore Peterson Institute in Reno, Nev., targeting the XMRV retrovirus had to be retracted for faulty science.

Doctors are slow to diagnose CFS because if that is not the area of their practice, there is no easy diagnosis.
At present there are no bodily fluid tests, no imaging, no temperature transients. Nothing. Just very sick people; very, very sick people. Immune system studies, spinal fluid aberrations, and other biomarkers show promise and may be used to identify the disease some day.

Probably 75 percent of CFS victims start with some flu-like disease. Maybe 4 percent of people who come down with mononucleosis will get CFS.

Most sufferers’ lives are turned upside down. Their first collapse comes without warning, usually following exercise.

Although memory and verbal-skills loss are often part of CFS, most victims remember exactly the day and time they were stricken. Laura Hillenbrand, who incredibly has written two best sellers, cannot leave her home and could not attend her own wedding.

Deborah Waroff, a New York writer has had CFS for 23 years. In September 2003 and all through 2004, she could do little more than lie on the living room couch. Waroff struggled back to the point of functioning a few hours a day. But two back surgeries in 2010 left her immune system at a record low level, and brought on another long-term collapse. She is back to two or three-hour spells of activity, but not on two consecutive days. “I’ve lost half of my adult life,” she says.

These stories are multiplied a million times. Being a victim can include abandonment by families, spouses and lovers, friends and colleagues, workplaces and insurance companies.

Florence Nightingale shone a light of hope from her lamp in the ghastly Crimean hospital wards. CFS sufferers hope that the spirit of Nightingale will shine a loving light into the darkness of their disease — lost as they are in plain sight of the world around them. – For the Hearst-New York Times Syndicate

Deborah Casson got the sunshine she was hoping for on ME Awareness Day yesterday (May 12) – when she took her grandchildren – 11-year-old Alicia and Dylan, aged seven – for a sponsored walk in the Lake District.

The trio were joined by other members of the family for a ramble at Loughrigg Fell near Ambleside to help raise funds for the ME Association.

But left at home, unfortunately, was Deborah’s daughter, Sonia McDermott, who has M.E. and was too ill to join the others.

“My daughter was 26 when she became ill – just a year after she got married”, said Deborah. “She used to be very active is all sorts of things but her condition deteriorated last July.”

If you would like to support the family’s fundraising effort, please visit their fundraising page at www.justgiving.com/Casson-McDermott

Meet Caroline Murphy and ‘Yoda’ – thousands did at the London Pet Show in Earls Court, London, yesterday where the year-old French bulldog received a top award for helping his owner cope with her M.E.

As a dog act famously won a half-million pound prize on ‘Britain’s Got Talent’, so other dogs captured the hearts of readers of Dogs Today magazine. They found out who had received this year’s Endal Awards – named after a labrador who helped restore the health of a serviceman who had been badly injured in a road accident while serving during the first Gulf war.

Yoda’s owner, Caroline, who has had M.E. for eight years, commented: “He gives me a reason to get out of bed, even when I have no energy.”

Caroline, from Shropshire, added: “He sits with me and keeps me company, and gives me the courage and opportunity to try new things – even if it’s just a short walk to the park where he makes human friends who then talk to me! Yoda is a little bundle of fun and joy who makes make smile even on my darkest days”.

Caroline turned up to collect the award in her pyjamas to draw attention to the illness.

The aim of CBT is to remove negative attitudes and improve the day-to-day functioning of people with both physical and psych-iatric illnesses. It involves addressing negative beliefs and actions that can affect physiological processes. In relation to ME, a course of CBT is often based on the idea that the illness is largely maintained by unhelpful psychological beliefs and behaviour.

GET is a form of planned exercise that aims for gradual, progressive increases in aerobic activities such as walking or swimming. It is based on the principle that a main factor maintaining the illness is inactivity, resulting in lack of fitness and stamina (ie de-conditioning). Gradual, ever increasing, exercise within the individual’s limits is thought also to help improve confidence in physical ability.

Pacing is an energy management strategy in which people with ME are encouraged to achieve an appropriate balance between activity and rest. The hypothesis is that, if people with ME use their energy wisely, then their limited energy willgradually increase. The aim is to prevent people entering a vicious circle of over-activity and setbacks (what is known as ‘boom and bust’).

But what does it all mean? I mean, in practical terms? That’s what we hope to find out.

Doing some background reading, I started with the sections about CBT, GET and Pacing in the January 2002 report to the Chief Medical Officer (‘the 2002 CMO report’) and the Department of Health’s (DOH) response to it. The report was not intended to be a comprehensive clinical guideline but it was a welcome start of a process of improving awareness and understanding that the DOH hoped would lead to improved diagnosis, management and treatment.

Two years ago, another MEA survey found that, while the vast majority of people found pacing to be helpful, or very helpful, significant numbers (see table below) reported that CBT was of no benefit and that GET made their condition worse.

The University of York’s list of trials relevant to ME/CFS (“The York trials”) dates back to 1994. It is dated 2006 and therefore notes the trials that the NICE Guidelines Committee would have looked at when making their guidelines. Out of the 16 that are described as ‘behavioural treatments’ trials listed, nine were on CBT and five were on GET. There were none on Pacing.
The NICE guidelines were issued in 2007.

That was followed up by AfME’s 2008 What Progress? survey of 2763 members which reported:

Then came our 2010 survey. That brought forth a sack full of heart-rending letters from people about the adverse or lack of effects of some therapy courses.

Janet Thomas was a trustee for a short time before her health forced her to retire and, with her husband David, had taken on the responsibility for that survey.

They still regret that they did not have time to reply to those letters individually – and writing that serves as a reminder to me to say to you – we have allowed a lot of space on the form itself for you to tell us what you think it would be helpful for us to know.

In early 2011 the results of the PACE trial came out. This was “a comparison of Adaptive Pacing Therapy (which, to my medically ignorant mind seems no different to Pacing), Cognitive Behavior Therapy, Graded Exercise Therapy, and Standardised Specialist Medical Care for chronic fatigue syndrome (the explanation of SSMC is easy to understand but, being irrelevant to this article, I won’t include it for lack of space).

We will be criticising that trial in our overall submission to the NICE guidelines review committee when we know the date of the review and so that is where our objections about it belong, not here.

Of interest here though are the PACE trails results for the three therapies:

As you can see, they are very different to the other survey results.

The 2002 CMO report, the AfME and MEA surveys and the PACE trial made it clear that someone should take things further and elicit some comprehensive and up-to-date evidence that could help to resolve uncertainty.

Meanwhile although, as a charity, we do not recommend any specific treatment for ME/CFS and will not until one has been researched through a trial and found to be beneficial, our best recommendation has been to go with Pacing – because surveys have indicated clearly that it has the most favourable results.

Pause for thought in Huddersfield

In October last year, The MEA was in Huddersfield with the Kirklees Independent ME Support Group at our annual medical conference. One of the panellists said that GET had aided her greatly.

Cross examination led to an assertion by another panel member that what she had actually been given was Pacing therapy under the guise of GET.

Maybe that was so – or maybe her GET therapist was a specialist ME GET practitioner who knew what was needed for her in terms of graded exercise and what else was needed to accompany it.

Whatever – it was agreed that the whole situation about the three therapies was a muddle which needed sorting. But for that meeting, the seeds of thought about this new survey may not have ripened.

On to December when a young relative, diagnosed last summer with ME, was sent on a CBT course.

To quote from her course notes: “Don’t use your body as a cue to guide your actions, instead stick to your structured plan of set activity no matter what symptoms you are feeling. Don’t see rest or avoiding activity as a safety net/cure; rest and avoidance does not reduce your symptoms and prevents the body building tolerance”

This doesn’t look like CBT to me – it looks like an inappropriate GET and very bad advice for a person with ME/CFS.

And so it became obvious that it is not just us who should be saying:‘But what does it all mean?’ It should be just about everybody.

How many different models are there for each of CBT, GET and Pacing for ME sufferers? What is it about all these models that is good, bad or indifferent – what do each of the therapies actually involve? Does CBT include an element of GET and Pacing? Does GET include an element of CBT and Pacing?

Does Pacing include an element of CBT and GET? And if not, should they? What specialist knowledge about ME do the practitioners have? Is it the failure of some of them to fully understand the nature of ME/CFS that leads to therapy failures?

What works well for people some people and possibly not others? How many courses are properly tailored in proper consultation with participants?

I could go on but you get the gist.

Hopefully this article will generate your enthusiasm to complete the survey form. And don’t forget to spread the word to people who no longer term themselves ‘sufferers of ME’ because the more people who can give us evidence, the more useful this survey will be.

I am going to email almost everyone I have in my contacts list as most of them will know at least one person with ME. Perhaps you would consider doing that?

More than a ‘chocolate teapot’ survey!

In July 2011 Dr Kristina Downing-Orr, Clinical Psychologist wrote in The Psychologist magazine: “CBT and GET are as useless as a chocolate teapot. In fact they cause more distress because clients are usually blamed and abandoned…. CBT cannot cure a broken leg and it won’t cure CFS”.

I quite fancied putting that somewhere in the announcement to the survey, partisan though it is, because the image is comic (though the subject matter is very serious) and I fancied this becoming known as The Chocolate Teapot Survey!

However, apart from the prejudicial view she takes, which is inappropriate to a survey questionnaire, I think we might find she is not correct
except that we do not expect a cure but an improvements of symptoms, albeit gradual (and she is right about the broken leg)!

I think we might find there is something in all three therapies – positive and negative – that could be made use of when it comes to making use of these approaches in everyone who comes under the ME/CFS umbrella.

Perhaps they already are if the right medical practitioners are involved? Perhaps some practitioners already borrow from the other therapies and make a better practice? Who knows yet – those are some of the many things we hope to find out.

What are our hopes and expectations for this survey? We hope that it will be well supported because the bigger it is, the more effective it will be. If all the ME charities and local support groups help to send it out, it should be.

We expect that it will bring forth some clear evidence and hope that in turn, that evidence will bring forth a good clear medical research project and funding for it. We expect that, even before that research, people will be given a clearer picture and hope that it will help them to cope better with their illness.

We hope any lack of expertise among practitioners is addressed. We hope shortage of practitioners is addressed. We hope that the NICE guidelines review committee find the report useful because it is clear that survey evidence is very important to NICE guideline committees.

Acknowledgements

Former MEA trustee Janet Thomas and her husband David have been a huge help – giving me the benefit of the knowledge and experience they gained from our 2010 Illness Management Survey and suggesting questions.

I have had help from the ever-patient and knowledgeable Dr Charles Shepherd.

Professor Derek Pheby (Project Co-ordinator of the National ME Observatory) appraised our draft.

Liz Lipscomb of Vantage Point Research (www.vantagepoint research.co.uk) set the survey up – designing the forms, making sure the questions all worked, and putting the survey up on the computer. Liz has huge research expertisein this area and has given us the benefit of it.

Gill Briody, in the office, helped with the logistics of getting out the paper survey forms.

I could not have done this without any of them.

Finally – I stress that this is a totally impartial survey. There is no point in having one that is anything else.

Fewer than one in three health trusts is providing adequate care for chronic fatigue syndrome sufferers, new figures suggest.

The study uncovered a postcode lottery in the way that people with ME, or Myalgic Encephalomyelitis, were treated, with large variances in treatment across the UK.

ME is a long-term chronic illness which attacks people’s nervous and immune systems and affects 250,000 people in Britain.

The National Institute for Clinical Excellence gives all 151 primary care trusts in England explicit guidance on how children and adults with ME should be treated.

However a Freedom of Information survey of trusts and health boards in the UK found that this was largely being ignored.

Only 15 of the trusts – fewer than a third of those in England which responded to the survey – offered a specific “pathway” to getting sufferers the right treatment.

A similar problem was in other parts of the UK, with half of Scotland’s health boards and no Welsh health boards offering health pathways for ME sufferers.

The survey – published today in a report “Ignorance, Injustice and Neglect” from the charity Action For ME – also found that 37 out of 151 trusts provided some sort of domiciliary care and only a third of those provided figures about how many were treated.

Only one Scottish, one Welsh and one Northern Irish health board offered home visits for ME sufferers.

The study also found that the provision of care for children with ME is far worse than for adults, despite the devastating impact this can have on their schooling.

Only 10 per cent of primary care trusts could provide information on children with ME being treated.

Action For ME, the charity for ME sufferers, said “clear requirements and standards” for sufferers “appear to be largely ignored”.

Sir Peter Spencer, the charity’s chief executive and former Second Sea Lord, told The Daily Telegraph: “These figures are a disgraceful indictment of institutionalised discrimination and neglect.

“Rhetoric and prevarication from ministers is simply not good enough. We need action now to put this right once and for all.

“Health Services in all of the four home nations are still not even beginning to address the needs of this vulnerable patient group.”

The charity said Health Secretary Andrew Lansley should take responsibility for ensuring that the care commissioning process is done properly.

It also said that special arrangements should be made by the new NHS Commissioning Board because local commissioning had “so evidently failed this patient group”.

Annette Brooke MP, chairman of the All Party Parliamentary Group on ME, said the report painted “a stark picture of neglect as evidenced by their failure to plan or provide for even the most basic services”.

This week is Myalgic Encephalomyelitis Awareness Week or, as it’s more accessibly referred to these days: M.E. That may not mean a great deal to you. Certainly, it didn’t to me.

Oh wait, yes it did.

Based on no personal knowledge whatsoever – fortunately neither I or my loved ones have M.E. – my judgement was gleaned from how the world has portrayed the illness.

Like millions of others, I have seen M.E. through the eyes of the medical establishment, the Government and the Media. The picture has not been good.

Here is what I have previously understood about M.E. and those who have it.

M.E. sufferers are workshy malingerers. They whine, constantly, about feeling tired. They are annoying sympathy seekers.

Damn it. We’re all tired. Especially those fools like me who work all hours God Sends (and even some he doesn’t) to support the type of people who say they are too tired to work.

Oh, and mostly, importantly, M.E. is ‘all in the head’ and can be overcome with a bit more determination and a little less of the ‘poor me’ attitude.

That, generally, is what I thought about M.E.

Until, that is, a reader sent me a DVD of a British-made film about the illness titled ‘Voices From The Shadows’.

I receive dozens of clips and films each month, and I try and see as many as I humanly can, but there was something about ‘Voices…’ that stopped me in my tracks.

One of the reasons the film had such an impact is because it challenged my deep-seated preconceptions about M.E.

Through ‘Voices…’ – and the subsequent research I have conducted – I have come to realise that what I thought I knew about the illness was a fallacy but, more importantly than that, was actually detrimental to those affected.

So, as a naturally curious individual (I’m not a journalist by mistake) I began to question why I had been furnished with one version of events – and inaccurate ones at that.

The more I began to delve into the subject the more curious it all became.

Like for example, why are records pertaining to ME locked away in our national archives in Kew for 75 years? The normal period would be 30 years.

75 years, the period generally used for documents of extreme public sensitivity and national security, is excessive.

The reason given, that of data protection, is a nonsense as it is perfectly acceptable, and easy, to omit names on official documents. The excuse, supplied in Parliamentary questions by the Department of Work and Pensions, didn’t wash with me.

Why, I thought, were they making such an exception?

It got me thinking about what information the files actually do contain. And, seeing as the topic of M.E. is still beset with misunderstanding, we could all benefit from some enlightenment on the subject.

So, to this end – and seeing as it M.E. Awareness Week – here is my personal guide to shattering the myths and blatantly-pedalled untruths about M.E.

Myth No. 1: ME is a mental illness

Not so. It is a neurological one. It is not a case of ‘mind over matter’ despite many GP’s and health professionals still thinking it is. Psychiatrists have bagged it as ‘their thing’ and the General Medical Council has been somewhat remiss in supporting it as a physical condition.

I spoke with one ME sufferer, who asked to remain anonymous for fear of upsetting the medical professionals who are currently treating her. She said a new GP at her practice had suggested she take up meditation to help her combat her decades-old condition.

Thankfully there are some doctors, few and far between admittedly, who really understand the physical nature of M.E.

Dr. Speight, a medical advisor for a number of M.E. charities does. Commenting on the wide-ranging debilitation of the illness, he has said:

‘The condition itself covers a wide spectrum of severity but even the mildest cases deserve diagnosis and recognition because if they are given the wrong advice or don’t handle themselves correctly they can become worse.

‘At the more severe end of the spectrum there’s a minority of patients who are truly in a pitiable state…some of them in hospitals, some of them at home…and this end of the spectrum is really one of the most powerful proofs to me of what a real condition this is and how it cannot be explained away by psychiatric reasons.’

Sadly, there are still many health professionals who buy into the notion that M.E. is a psychological disorder and should be treated as a form of insanity.

In Denmark, only last week, The Danish Board of Health sought to remove a 23-year old woman, Karina, from her family home on the grounds of mental illness despite the fact that what she really has is M.E.

Karina, bed-bound, light and sound sensitive and too weak to walk is considered to be insane, rather than physically sick, and her family has been repeatedly told by Danish doctors that the diagnosis of M.E. is not recognised.

Myth 2: ME is just extreme tiredness, right?

Wrong. Despite falling under the Chronic Fatigue Syndrome category – as does Fibromylgia which has its own Awareness Day next week – it is entirely wrong to assume that M.E. is merely about lack of energy.

This confusion arose over the past 20-odd years and is due to the condition being re-classified as a Fatigue Syndrome.

The result of this has been to trivialise the illness which has served as fodder for ill-informed public commentators who have used M.E. and Fibromylgia to talk about ‘scroungers’ in the benefits system who are ‘too lazy’ to get out of bed.

For those who know about the illness, this type of commentary is viewed as dangerous rhetoric that deserves to be classified as a form of hate crime.

Myth No. 3: M.E. is just like a bad flu

Oh, if only. M.E. is a complex, chronic, multi-system illness that affect the body in similar ways to Multiple Scelerosis. In addition, inflammation of the neurological system can lead to heart disease, extreme muscle pain and other debilitating and life-threatening conditions.

As one doctor put it, comparing M.E. to an illness like flu is like comparing Emphysema to a chest infection. It seriously undermines the truth extent of M.E.

Myth No. 4: M.E. sufferers should just ‘pull themselves together’

Many sufferers have found themselves abandoned by health professionals, struck off of registers and even rejected by their own families when they have failed to respond to ‘tough love’.

Too many people assume that M.E. can be overcome with the right mental attitude. This consequently leaves M.E. sufferers even more vulnerable to issues like depression as they are further isolated.

M.E. is not a case of the mind being able to heal itself with determination.

M.E. breaks the body down and that also includes the brain.

Myth No. 5: Only adults have M.E.

Children have M.E. and their childhoods are destroyed as a consequence.

Margaret Rumney of Allendale, Northumberland.watched as her 11-year-old daughter, Emma, was reduced to a shell of her former self when she was struck down with M.E. nine years ago.

“Since then it has been a continual rollercoaster of emotions and has been one fight after the other,” says Margaret. “It is very hard for my daughter being ill, she is virtually housebound, often reliant on a wheelchair, and to have to cope with disbelief and ridicule on top of this makes this illness even harder to bear.

“Our experience of my daughter’s school was an awful one. When my daughter was receiving home tuition organised officially by the Education Welfare Officer we were threatened by one professional that if my daughter didn’t return to school that it would be classed as a psychological issue and social services would get involved.”

Threats and intimidation of this nature at the hands of the authorities are a constant feature of those in the M.E. community, and particularly those caring for children with the illness.

Naturally, this pressure merely adds to the overall anxiety that sufferers are already experiencing. Education is key. Bullying is not.

Myth No. 6 – You can ‘catch’ M.E.

Absurd. It is no more infectious than a broken leg is. M.E. appears to follow various viral infections, including meningitis, although the true cause is still a hotly debated topic among professionals.

Myth No. 7: Real M.E. sufferers are few and far between

There are currently 250,000 recognised cases of ME in the UK. That’s 1 in 250 so that’s hardly an insignificant number, is it?

Myth No. 8: Only severe cases of M.E. are worth acknowledging

Terrible misconception. M.E. ruins people’s lives even if the patient is not entirely bedbound.

The media tend to concentrate on the worst case scenarios but this does not help the full situation as it leaves others, who are still able to move at times, with the stigmatisation of ‘not being ill enough’.

Claire Taylor-Jones, a mother of one from Rhyl in North Wales, has been unable to pursue her ambition of becoming a solicitor after she was diagnosed with M.E.

In common with other sufferers, Claire has good days and bad days but she is not consistently well enough to pursue her goals and she is left in a type of limbo land. Her plans are on hold.

Myth No. 9: Children with M.E. have neglectful parents

There’s the notion that children with M.E. are actually victims of mothers who have Munchausens by Proxy – the illness where parents act as if the child is sick to further their own need for attention.

This is a particularly dangerous belief system as it leaves the true M.E. sufferer without sufficient support and diagnosis and the carer is treated as the problem.

Myth No. 10: Physical exercise will benefit M.E. sufferers

Absolutely not true. Worse, still, enforced ‘graded exercise’ can escalate the condition to dangerous and irreparable levels for the patient.

During the research of this subject, I have watched footage of hospital physiotherapists literally bullying M.E. patients to stand and walk. It is pitiful to witness.

The physios say things like ‘Come on, you can do it. You just have to put your mind to it’ and, at worst, ‘You’re not trying hard enough.’

Julie-Anne Pickles, who has had M.E. for the past seven years has experienced a serious deterioration in her condition as a consequence of wrong diagnosis and ineffective medical response. She is now 90 per cent bedbound and has been diagnosed with depression, diabetes and Angina.

She told me:

“Cardiology phoned me with an appointment the other day and they told me to wear trainers because they want me running on a treadmill while on an ECG! I said: ‘You do know I have M.E.?’ They said they did but not to worry as I won’t be running for more than five minutes! Running? I crawled on my hands and knees to the loo this morning!”

This idea among some of the medical professional that enforced exercise will help the condition of a M.E. belongs to a darker time in our history. A period when we thought that autistic children were a result of being born to cold and detached women or ‘refrigerator mums’ as they were heinously and immorally labelled.

Myth No. 11 – M.E. is not life-threatening

It is, although the true mortality rate of M.E. is mired in great confusion.

Recently, Labour MP George Howarth asked Paul Burstow, Minister of State for Care Services, to supply details of deaths to arise from M.E. Mr. Burstow replied that ‘this information is not available and is not collected centrally’.

As with so many issues regarding our sick and disabled, the Coalition had this wrong, too.

According to figures obtained from the Office of National Statistics, there have been five deaths listed as the cause of M.E. in recent years.

For campaigners this is nothing less than a fudge of the true scale.

Figures are easy to massage with M.E. because it triggers so many other illnesses, such as heart disease. Given that many health professional still deny that M.E. is a physical condition, they are unable to list it as a cause of death even if it is.

Myth No. 12: M.E. is an excuse not to work

Despite recognition from the World Health Organisation in 1969 that M.E. is a neurological disorder, many Governments – including our present Coalition – have chosen to ignore this.

Consequently, M.E. sufferers are subject to a battery of controversial fit-to-work assessments. The anxiety and physical exertion this requires generally worsens the condition.

When the M.E. sufferer is unable to work, because of their illness, they are removed from disability benefit and are plunged into poverty.

So, for M.E. Awareness Week, let us be clear. M.E. is comparable to AIDS and cancer and all the other vicious and uncompromising diseases that savage the body and, in some extreme cases, kill it completely.

The fact that it is still so widely misunderstood is a modern day travesty that must be addressed without further delay. Or is it convenient that we still view M.E. as being ‘all in the mind’?

I believe that we, as a nation, deserve to know the truth. Not only for those still battling the disease, but for those poor souls who have already been lost to it.

* For further details on Voices from the Shadows:

http://voicesfromtheshadowsfilm.co.uk/shop-dvds/

Sufferers of the debilitating illness ME are “appalled” and “horrified” by the health authorities’ decision to consider offering treatment they believe will only make their condition worse.

They feel the Health Ministry’s course of action flies in the face of scientific biomedical evidence that ME – myalgic encephalomyelitis – is a physical, neurological illness as defined by the World Health Organisation in 1969.

Last week the ministry told The Sunday Times it was assessing the possibility of training local professionals to delivercognitive behavioural therapy (CBT) and graded exercise therapy (GET), which focus on treating the illness as a psychological/psychosocial condition.

This sparked outrage among patients who said such statements reflected the lack of proper awareness in the health sector and further accentuated the myth that ME was “all in the head”.

“The most shocking and worrying fact is the ministry has chosen to ignore the substantial body of evidence on this organic neurological disease,” Rebecca Sultana, ME Sufferers Malta founder, said, adding she was too ill to continue fighting her cause.

ME is characterised by a range of neurological symptoms, muscle pain and intense physical or mental exhaustion. Its cause is still unknown, there is no known cure, and as there is no exact definition of ME diagnosing, it makes it doubly hard.

As the world today marks the start of ME Awareness Week, Ms Sultana and two other sufferers – Nicola Reiss and actor Kevin Drake – have come forward to voicetheir concerns.

Their fears are supported by research psychologist John Greensmith who set up the ME Community Trust in the UK and hasbeen closely following the developments in Malta.

“The anecdotal hard-knock experience of patients and research evidence to date shows CBT is ineffective and GET makes the majority worse,” Dr Greensmith, who was diagnosed with ME 24 years ago, told The Sunday Times.

When faced with sufferers’ reservations about the proposed treatment, a ministry spokesman insisted its decisions were based on guidance issued by the UK’s National Institute for Health and Clinical Excellence.

“The ministry already provides services through medical specialists and is considering exploring further therapy,” the spokesman said. He insisted the ministry was willing to reconsider CBT and GET in place of other more effective treatments and assured it was prepared to discuss with ME sufferers about the way forward in terms of therapy.

Dr Greensmith acknowledged that all that was on offer on the UK’s NHS were CBT and GET so it was not surprising that GPs were inclined to refer patients for such therapy.

However, those who tried such therapies failed to improve and research by Twisk and Maes in 2009 established that cognitive behaviour therapy was “ineffective” while graded exercise therapy made the majority “worse”, with sufferers sometimes never recovering to where they started.

So, what is the best treatment?

“The truth is there isn’t an effective one. I hold the view that it is better to have no treatment at all – apart from primary care treatment from your GP for symptom relief, such as medication for sleep, or pain – than one which is ineffective, raises false hopes or makes you worse,” he said.

However, symptoms can be alleviated. Ms Reiss, who was diagnosed with ME in October 2008 when she was living in Malta, wrote in saying she was fortunate enough to find a specialist doctor when she moved to Melbourne who carried out extensive tests and treated underlying conditions.

“I have gone from being largely housebound and unable to work to working 25 hours a week… every ME patient in Malta should have the same access to a trained and knowledgeable doctor,” she said.

Mr Drake went a step further and issued a sincere plea to the authorities: “Please help us restore some of our dignity. That is all. That is everything.”

A commercial website for people suffering from symptoms of chronic fatigue syndrome and fibromyalgia is rife with numerous illegal and misleading treatment claims, according to a recent warning letter sent to Dr. Jacob Teitelbaum by the U.S. Food and Drug Administration.

Teitelbaum, the medical director of the national Fibromyalgia and Fatigue Centers and author of several books on the topic, including “From Fatigued to Fantastic!” also unlawfully used his Facebook account to promote his products for disease treatment and prevention, the FDA said in the three-page letter.

To read more, click HERE