Learning is hard when you're too weak to eat

Personally Speaking: ME was called atypical polio, so similar are the symptoms
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The Independent Online
ME is now the biggest cause of long-term sickness absence in UK schools - a phenomenal 42 per cent. In pupils only, the figure rises to 51 per cent. No other condition comes close. When I began a five-year research project with consultant microbiologist Dr Elizebeth Dowsett, I had no idea we would uncover such figures. Far from being a disease of burnt-out high-fliers, this is a scourge of formerly happy, active, healthy children and their teachers.

Not only was ME present in 20 per cent of the 1,098 schools studied, but more than half of those with long-term sickness absence had cases, many in clusters of staff and pupils. The biggest cluster we found, spread over number of schools and amounting to a mini-epidemic, ran along a stretch of recreational water heavily polluted with sewage.

ME rendered me so weak that I could hardly chew a mouthful of food after acute infection by a virus that lives in sewage, so I found this indicative. These sewage-loving viruses (enteroviruses) are related to polio, but we do not immunise the population against them as we do against polio. They are free to run rampant. Water treatment does not kill them or filter them out. Not everyone who catches them develops ME, so some experts doubt that they are its cause.

This argument is epidemiological non-sense, as Dr John Richardson of the Newcastle Research Group explains. It happened with polio, too. Only a fraction of those who caught polio got paralysed. No one suggests that the polio virus was therefore not responsible. It is precisely because most people get these enteroviral infections and make an effective immune response - often without any symptoms - that society avoids widespread devastation. These clever bugs commonly mimic both flu and glandular fever, producing convenient red herrings in the search for the true ME triggers.

ME was once called atypical polio, so similar are the symptoms, disease pattern and nerve damage. This has profound implications for education. As in polio, the brain stem of an ME patient looks, according to US researcher Professor Richard Bruno, "like somebody took a little shotgun and blew holes in it".

The result is dramatic. Automatic functions like sleep patterns, blood pressure, temperature and heart rhythm self-destruct. Someone with ME feels so ill it is like being poisoned. Children may suffer extreme pain (unamenable to painkillers) and cannot tolerate light, sound or normal levels of information input, making school a place of torture. Memory vanishes, speech becomes halting or slurred, words are forgotten or cannot be combined into sentences, numbers cannot be processed. The physical struggles to get to school not only stops the illness stabilising, but produces educational disadvantage; the energy drain saps brain power and renders study ineffective. Ironically, pushing the brain too hard then saps the body's energy further, leading to a vicious downward spiral.

Dr Michael J Goldberg's recent brain scans of American children with ME clearly demonstrate this cognitive deficit. We should be bending over backwards to help, in line with all the latest Government education and health circulars. Distance learning, home tutors, exam arrange- ments - all should be automatic. Sadly, the reverse is happening.

Despite evidence of the long-term, relapsing nature of ME, local education authorities are reluctant to provide Statements of Special Educational Need. Surrey even operates a package "to minimise home tuition" (only provided "conditional upon attendance at a Child and Family Consultation Clinic") which aims merely to return the child to school. In another authority, parents are asked to accept treatment involving drugs not licensed for children and which have been shown by a randomised, double-blind placebo- controlled trial to be ineffective in ME.

Families challenging such policies become greatly distressed after facing hostility and non-co-operation. Refusal to collect completed work, or to teach the child until fully dressed and sitting at table and consequently too exhausted to learn, refusal to offer suitable exam arrangements, refusal to schedule lessons for a suitable time of day, pressure to get to the school or tuition centre regardless of the value to academic achievement and finally, open encouragement to leave state education altogether - these attitudes are widespread.

It does not have to be like this. There are some superb tutors out there, and Norfolk, just one example of good practice, sees its ME pupils achieving starred A grades at GCSE despite serious illness.

In 1949, David Bodian, the American post-mortem expert, warned that focusing on muscle paralysis distracted polio doctors from the brain damage in their patients. Focusing on the "fatigue" of ME does exactly the same - it is a distraction. Polio and ME may be two sides of the same coin. It is vital that we investigate school outbreaks of organisms that can trigger ME before they go to ground and our evidence is lost.

The writer is author of 'ME - The New Plague', published by First and Best in Education Ltd. From bookshops or direct on: 01832 275285. Her Website is: http://www.jafc.demon.co.uk/