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by Jane Colby
Former headteacher
Consultant for the Education of Children with ME
Member, Chief Medical Officer's Working Group on CFS/ME (Children's Subgroup)
More rubbish has probably been written about ME than about any other disease. Yet long before the name "ME" was even invented, ME was called Atypical Polio. Was this name accurate?
Much of the most modern research points to the fact that both Polio and ME derive from genetically related enteroviruses (bowel viruses) and there is, in fact, no clinical difference between Post-Polio (new symptoms in Polio survivors) and ME.
The report Childhood ME (www.youngactiononline.com) details the special educational requirements of children with ME. ME causes brain damage as a part of the disease process. This can be seen on MRI scans. As a result, cognitive function is impaired. This can be seen on SPECT and PET scans. To book a lecture about this, please email me (jane@jafc.demon.co.uk) or write to me at: PO Box 4347, Stock, Ingatestone, CM4 9TE.
The incidence of ME in schools, as in the general population, is increasing. In some areas, two-thirds of the children on home tuition have ME.
Both staff and pupils may develop ME. Teachers run four times the risk of the general population. This is thought to be because the nature of their profession means continual exposure to infection.
One in five schools have teachers and/or pupils who are long-term sick and disabled with ME (Dowsett EG, Colby J: Long Term Sickness Absence due to ME/CFS in UK schools; An epidemiological study with medical and educational implications - Journal of Chronic Fatigue Syndrome 1997 vol 3 (2)). Their brains malfunction, their bodies may suffer terrible weakness and pain. Some become bedridden, can no longer speak or swallow and have to be tube-fed.
Yet people with ME are sadly often ridiculed and told to get up, to exercise, to pull themselves together, because it is thought that they are suffering from a psychological disorder and therefore there is no physical reason why they cannot perform normally.
Children with ME have been mistaken by teachers and doctors for school phobics, anorexics or even removed from home by social workers convinced that their parents are abusing them. Some have been left on hospital floors in the belief that they will eventually put themselves to bed. Their food has been placed out of reach in the belief that they can feed themselves if they get hungry enough; parents have visited to find their child still unfed with their meal lying cold on a table on the other side of the room. Such experiences may understandably lead parents to become very distressed on behalf of their child. In researching my book I have heard some heart-rending stories, many difficult to believe.
In the same vein, teachers with ME have in their turn been labelled as burn-out cases who cannot take the stress of teaching, or mistakenly thought to be suffering from depression.
ME sufferers are seriously ill and deserve respect and help. With the right approach over a period of years, most will be able to rehabilitate themselves to a greater or lesser extent. The more successfully they adapt to a condition which no drugs can cure, the better their chances of a productive future.
Many doctors, short of information, still discount ME as a real illness at all. Yet the incidence is around three times that of Multiple Sclerosis and rising.
In February 1997 the Chief Medical Officer of Health wrote to doctors to say that the government recognises ME as a potentially debilitating and distressing condition that may affect thousands of families. He also wrote that uncertainties over diagnosis should not deter doctors from giving skilful and sympathetic treatment.
Some of the latest research demonstrating the relationship between ME and Polio is in the Annals of the New York Academy of Sciences (1995) vol.273, 1-409. This is a record of the proceedings of the First International Scientific Conference on the Post-Polio Syndrome (1994).
These papers are extremely difficult for the layman to understand, and the whole package costs almost £100, but the British Library has a copy. If you do look it up, go for a paper by Dr Richard Bruno called "Pathophysiology of a Central Cause of Post-Polio Fatigue".
Byron Hyde and colleagues at the Nightingale Foundation in Ottawa have detailed further epidemiological evidence. Consultant microbiologist Dr Elizabeth Dowsett has written extensively on the subject and is also interviewed in my book.
Thanks to all schools who participated in my research project with Dr Dowsett. This research has been the largest ever undertaken into the epidemiology of ME and is due out in June 1997 in the Journal of Chronic Fatigue Syndrome (see section 1 - ME in Schools). We studied a school roll of over 333,000 pupils and over 27,000 staff.
The data shows further evidence for the infective origin of ME and flags up the seriousness of the problem in UK schools, both in staff and pupils.
I am reliably informed that you don't catch ME itself, just as you don't catch paralysis from someone who has had Polio, but the viruses that appear to be the underlying cause are easily caught, and will result in ME in some people. These viruses are in the general environment and are very common. So far, there is no immunisation against them. Hygiene is all-important.
Look out for cases in both staff and pupils. Our research shows clusters; therefore if you have one case of ME in the school, you may well have more.
Like the man said, "don't have nightmares"; people are catching enteroviruses all the time and many have no symptoms at all. But some do become seriously ill. We must be on the alert and swing into action early. The more we delay, the more ill these people become as they try to keep up their former lifestyle.
"Primarily a neurological illness with
variable
involvement of other body systems (eg muscles, liver,
heart, endocrine or lymphatic glands)."
Dr Elizabeth Dowsett
FATIGUE: exhaustion, not the same as "tired all the time"; great fluctuation possible, even within a few hours. May come on 24 hours or more after mental or physical effort. The teacher may therefore not witness the effect of an effort that a pupil has made in school since pupils are often at their worst at the weekends after struggling through the weekdays.
DISTURBANCE OF BRAIN FUNCTION: memory, concentration, sequencing of words and numbers, abnormalities of sensation (eg pins and needles) balance, vision, hearing, sleep rhythm, temperature, appetite, hormone production and response to stress.
PAIN: especially in muscles and joints - this is a prominent feature. Severe headache especially common in children.
PERSISTENT DIZZINESS OR CLUMSINESS: may be very disabling.
Panic attacks can mean illness is labelled psychological. Tachycardia (racing pulse) can occur. Moods can swing from elation to depression differing from clinical depression; patients do not lose motivation to do things, only the ability to do them.
Counselling can help with the trauma of being very ill for so long, as in any chronic condition.
In writing the book ME - The New Plague, from First and Best in Education Ltd, I have aimed to give a clear explanation of the ME/Polio link, and reputable specialist guidance for surviving ME so as to minimise future trouble.
The book was published in June 1996 and was chosen for the BBC ME Factsheet by Dr Anne Macintyre, medical adviser to the ME charities. It comprises the latest knowledge in lay terms along with practical guidance for schools, parents and sufferers. Self-contained papers intended for copying and dissemination are also included eg the latest edition of Guidelines for Schools as used by the National ME Task Force.
Guidelines for Schools is medically accredited by consultant microbiologist Dr Elizabeth Dowsett and consultant neurologist Dr Leslie Findley. They have the approval of Stewart Robertson, HMI, and are recommended by consultant paediatrician Dr Alan Franklin in his Guidelines for GPs.
NB Teachers will find class discussion material in the book; there was unfortunately no room for such material in the Guidelines although it is recognised that schools need this.
Interviewees donating their services for the book:
Dr Richard L. Bruno: Director, Post-Polio Rehabilitation and Research Service, Kessler Institute, New Jersey/Associate Professor, Dept. of Physical Medicine and Rehabilitation, New Jersey Medical School/Chairperson, International Post-Polio Task Force;
Dr Darrel Ho-Yen: Consultant Microbiologist, Raigmore Hospital NHS Trust/author of the classic volume on recovery from viral illness (for patients);
Dr Elizabeth Dowsett: Honorary Consultant Microbiologist, SE Essex NHS Trust/internationally known ME specialist.
Dr Alan Franklin: Consultant Paediatrician, Essex NHS Trust and ME specialist/author of Guidelines for School Doctors and GPs/member of the National ME Task Force and Chair of its Focus Group on Children.
Jessica Higgins: a young ME sufferer/co-author of Jessica: a young person gaining personal power, published in Educational & Child Psychology 1996 vol 13(2).
If you have access, all these are available at http://www.jafc.demon.co.uk/ along with details of the book ME - The New Plague and other useful material.
The Charter recommends a multi-disciplinary approach to ME management in schoolchildren. OFSTED (The Office for Standards in Education) has circulated the Charter to the members of Her Majecty's Inspectorate dealing with Special Educational Needs.
The Charter also recommends a new approach to the education of children with ME based on distance learning, much like that being successfully pioneered in Norfolk. The reasoning behind the principles of this approach are expanded in my book, there being no room in the Charter.
If other education authorities are using this approach also, rather than just making short-term use of home tuition, I would be very interested in hearing from them.
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