Behind the very serious message in ME - The New Plague is another and very positive one - people with ME can and do affect the progress of their own recovery by the way they manage their lives.
The last production run of ME - The New Plague has now
sold out.
Public libraries will be able to lend you a copy.
While the chapters in the book tell a story, they can also stand alone. Here are the opening sentences from each of them.
Introduction
Who do you know with ME?
Some ten years ago, most people I met had not even heard of ME. These days, hardly anyone seems unaware of it, not just because it has received increased exposure in the media, but because so many lives have been traumatised by it. Perhaps you are one of those.
[...]
The New Collins Concise English Dictionary definition of plague reads as
follows:
"...a pestilence, affliction, or calamity on a large scale."
This disease has grown, not only in the public's consciousness, but in fact.
The introduction closes with a reader's guide for the book.
Yuppie Flu - what a laugh
Will the real inventor of "Yuppie Flu" please stand up
The ancient Egyptians believed that just by writing something down, you could make it so.
Does it really matter that ME was once considered a joke, a suitable target for a snappy headline? Surely everyone takes it seriously nowadays? The phrase "Yuppie Flu" is notorious, but now just a piece of history. Or is it?
This chapter examines the treatment of ME in the press and by doctors, and highlights the importance of the argument over what to call ME. It concludes with Recognising ME - a synopsis of symptoms and common misunderstandings.
Myalgic Encephalomyelitis (ME) - the polio connection
New patterns, old diseases
Suppose that, in the "bad old days" before polio vaccination, a parent whose child had died has been told: "She stopped breathing on purpose, you know." A public outcry would surely have insued.
And imagine if the next remark had been: "Tell me, did you encourage her in this belief that she couldn't breathe?"
The mere idea of such an attitude, quite properly, takes the breath away. Yet children with severe ME, unable to walk or even to eat, are often considered to be shamming and all sorts of bizarre strategies have been used to try and expose this.
Some have been left lying on hosiptal floors in an attempt to make them get up and put themselves to bed; some have been told that their parents do not want them at home until they behave and stop pretending to be ill; some have been refused liquid feeding and starved in an attempt to make them eat when they have lost the ability to swallow. And their parents have been suspected of colluding in, if not causing, a phantom illness.
[...]
To experts back in the polio days, ME was not inexplicable. Used as they were to dealing with polio, they recognised the symptoms of ME as resembling polio so closely that it was called atypical polio or non-paralytic polio, not ME at all.
This chapter is an exposition of the theory, with research evidence, that ME is a type of polio by another name. There are many polio-related viruses that were never called "polio" but which cause various types of polio syndrome such as that which has been named ME/CFS/CFIDS. A summary of essential points follows.
A cautionary tale - the polio experience
Does ME ever go away?
When you have a terrible illness - and we have seen that ME is often that - the one thing you want to know is: "Will I get better?"
Youngsters with ME are constantly being told: "Of course you will." But experience among polio survivours warns us to be far more cautious with such pronouncements.
If ME is caused by viruses of a similar genetic strain to polio, we are making the same mistake that was made in assuming that children with polio, if they survived, were now "over" the disease. They might be left with a slight limp or perhaps more pronounced problems, but they could, they were told, at least assume that they would henceforth be fine.
They were never cautioned - given the choice, in other words, whether to take life steadily or risk further trouble later if they pushed themselves hard.
This chapter includes an interview with Richard L Bruno PhD (Director, Post-Polio Rehabilitation and Research Service, Kessler Institute, New Jersey, US) discussing new understandings of the long-term effects of polio, and warns against treating ME sufferers the way polio patients were treated. A list of risk factors for ME follows.
Charging up - the energy solution
Living with a flat battery
In the early stages of a bad case of ME, there may - indeed there probably will - be little a person can do but lie in bed, in pain, with occasional sorties to the loo, interspersed with "big expeditions" to the far-flung reaches of the house, perhaps downstairs to lie on the couch or eat a meal which someone else has cooked.
Indeed, there are some who cannot even manage this. [...]
ME varies in severity between cases, but these early stages are the vital ones where management of the condition, help from friends and family etc greatly determines what happens next. Yet most people cannot conceptualise what it is to have ME and do not realise how vital their assistance is.
This chapter examines the concept of conserving energy to enable the body to heal itself. This needs a revolution in lifestyle. It includes an interview with Dr Darrel Ho-Yen (Consultant Microbiologist, Raigmore Hospital NHS Trust, Scotland). The Survivors' Lifestyle Checklist follows.
Working together - ME in children
Is there anybody out there?
Early in 1996 the phone rang at the home of Mary Ayre, one of the many volunteers throughout the country who have ME themselves and are willing to be a "listening ear" for others with the condition.
When Mary answered, there was a silence, broken only by the sound of a child crying. This was particularly distressing because, without knowing the problem which triggered off the call for help, Mary was powerless to do anything about it.
For some time she kept contact with the caller. At one point the girl tried to speak, but what followed were simply sobs which turned into a paroxysm of tears. Mary reassured her: "Don't put the phone down. I'll wait until you feel ready to speak." But in the end the receiver was replaced without any words being exchanged.
Dialling 1471 [In the UK, this can give the number which just called] Mary discovered that the source of the call was a nearby school. It was a sobering thought to realise that this child, surrounded by friends, teachers, welfare and class assistants, had no-one to whom she could turn but a stranger.
This chapter reveals the scale of ME in children. It shows how all the professions involved need to work together with the parents. It includes an interview with Dr Alan Franklin (Consultant Paediatrician, Springfield Medical Centre, Chelmsford, Essex, England). A Quick Guide for Parents follows.
The Changeling - and other stories
No right thing at all
In 1912 a book was published by Macmillan and Co called Folk Tales of Breffny. These ancient Irish tales tell of the Good People (leprechauns and suchlike) and of how magic, some of it mischevious and unhelpful, is forever woven into the everyday lives of ordinary folk.
One of the themes is the eternal tale of the changeling, where the true son or daughter is kidnapped and something else is left in exchange. In such instances, the changeling is held to be "no right thing at all".
In Jessica Higgins' first year in secondary school [age 11] a strange thing happened to her. She feels that so far as her teachers and several doctors were concerned, it seemed that she became "no right thing".
This chapter is a case history (in her own words) of a teenager with ME. In discussion Jessica shows how initially misguided and damaging treatment was followed by a totally new and positive approach developed with Educational Psychologist Jacqueline Siner. The author then draws on her educational background to form and propose a new approach to the education of children with ME. A short section contrasting ME with School Phobia follows.
Under the skin - working it out
Do people with ME need a shrink?
Apart from being a slang word for "psychiatrist", shrink means, according the New Collins Concise English Dictionary, "to contract or cause to contract".
The lives of those with ME contract so dramatically that they have, in effect, already been shrunk. However, it has been argued that the disease of ME affects mainly those who are already prone to psychiatric illness, and so they most definitely do need a psychiatrist.
Statistics from Hayes Grove Priory Hospital in Kent [England] tell a rather different story.
This chapter covers the psychological aspects of living through ME and shows that ME is not depression, nor is it psychiatric illness, though it may result in a "psychological overlay" caused by the illness and by the trauma suffered. It offers a philosophy for psychological survival. A short selection of poems for both children and adults follows, which show aspects of the emotions generated by ME both early in the disease and during recovery. These may be used by teachers for class discussion.
Myths and legends - negotiating a truce
Defence is the best means of attack
There is a popular image of the body's defence system which likens it to an army bent always on total victory over invading forces. It is a crude depiction that is really too simplistic.
A wise general knows when to negotiate a settlement. In just the same way, the body learns to co-exist with many organisms that invade it. A fight to the death is unproductive for both sides.
It has only been in this century, since we in the developed countries introduced big changes into our lifestyles, that epidemics of polio and ME have occurred. It is also only in this century that polio started to be widely paralysing and lethal.
This chapter winds up the argument for ME being a type of polio and shows how we have brought the present situation upon ourselves. It offers a look into the future.
Epilogue
"It is a virus!"
"No it isn't. Give me my ball back, I'm going to play on my own."
This might seem to be a simplistic view of the squabbles that appear to have infiltrated some areas of the medical profession over ME. Unfortunately, in researching this book I have, unbelievably you might think, come across instances of reputable research being refused publication in respected medical journals on the basis of just such casual pique.
Until this nonsense and prejudice is cleared out of the way, progress is bound to be impeded at a time when it was never more needed.
The epilogue is a plea for common sense and co-operation between parents, medics, educationists, social workers and politicians to deal with the ME crisis.