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STRIPEYSOCKS BLOG (not part of the book!)



This is what Britain woke up to on May 22, 1997.

ME on the front page, blanket media coverage. The moment when the scale of ME in children finally became undeniable by the medical establishment. Remember?

Sarah Boseley of the Guardian wrote:
The largest study ever made of the controversial illness ME, the modern plague doctors call Chronic Fatigue Syndrome (CFS) shows it is responsible for 51% of long-term sickness absence among schoolchildren.
      Findings published yesterday are certain to heat further the debate between sufferers - who believe they have fallen victim to a viral infection - and the medical establishment, which largely thinks it is primarily a psychological condition.

She went on:
One of the authors of the report yesterday called it an “educational timebomb” and called for help for victims to study at home, in direct contravention of the advice of three Royal Colleges, who in October urged that children return to school.
      The study, by a former head teacher and a microbiologist, was conducted in more than 1,000 schools in six local education authorities over a five year period, from 1991 to 1995. It found that 42% of staff and children away for more than two months had ME. It was 51% among children alone.
      Jane Colby, a former head teacher recovering from ME who is one of the authors, said: “This disease shows a sinister pattern right across the school population. No one can deny how serious it is.”
      The 1,098 schools which agreed to participate in the study - nearly 3,000 were approached - were asked to report the number of children and staff on long-term sick leave, and to give the reason. Twenty per cent of schools responding said they had cases of ME. In 392 schools, long-term sickness absence was reported, out of which 224 blamed ME. Next came cancer and leukaemia, reported by 161 schools.

Going into further details:
The average prevalence of ME among schoolchildren on these figures was 70 per 100,000 children, the authors said, and 500 per 100,000 staff.
      Ms Colby said theirs was “only the baseline figure” for children with ME. Various schools gave the reason for absence as “prolonged undiagnosed viral illness”, which she believes is probably ME. There were also clusters of cases that lay in the areas of schools that chose not to participate.
      “What is worrying is that nobody is taking it seriously. Nobody is doing this officially. We're looking at a very big problem producing enormous educational deficit.”
Ms Colby and co-author Elizabeth Dowsett, honorary consultant microbiologist to the South Essex Health Trust, called for children with ME to be given special support to allow them to learn at home.
      “The purpose of education is to educate, not just to put children into schools. Social isolation can be addressed separately.”

Then we get to the reaction:
The Royal College of Physicians, which was part of a joint working party on ME with the Royal Colleges of Psychiatrists and General Practitioners, countered yesterday that home tuition was not the best thing.
      “The Colleges felt the best approach is one which encourages the child to lead as normal a life as possible, with regular school attendance - there is some evidence that this leads to a more rapid recovery.
      “Prolonged absence from school, as with other causes of ill health, affects not only academic performance, but also makes it increasingly difficult to maintain a school-based social life and eventually to return.”

Since then, of course, interactive virtual education schemes that incorporate social contact have shown that children with ME allowed to study at home attain higher levels of academic achievement, not lower. And their health is saved from what is now known to be relapse-producing physical and mental effort to attend school and study in lessons designed for people who are not ill.

The Guardian continued:
Charles Shepherd, medical director of the ME Association, said the report should help children with CFS who were often misdiagnosed or not treated properly, even when their illness was recognised.
      “Doctors don't always understand this illness. The respsonse seems to be one of two extremes,” he said. “Either you are told to go to bed, which is completely wrong, or you are told to exercise and pick yourself up. It actually needs a balance.”
      The Royal College of Physicians also disputed the assertion from Ms Colby and Dr Dowsett that “the clustering pattern suggests that ME results from an infection”. They claimed the biggest cluster extended over a number of schools “in an area containing recreational water heavily polluted with sewage”.
      They called for an investigation into microbiological agents which could trigger an epidemic of ME among children.

Since that time, work by John Chia MD in America is showing up the long-term persistence of enteroviral particles in the stomach, and work at Dundee university has shown a high rate of white blood cell death, and inflammation, consistent with a persistent viral infection.

The government Department for Education accepted all my recommendations in its 2013 statutory guidance to local authorities about the education of children too unwell to attend school in the normal way.

These have been excellent successes and they show the importance of long term commitment to this work. But it is always necessary to be vigilant. The ever-growing “chronic fatigue” empire could well undermine what has been achieved, with its attempts to tell parents they must adhere to strict regimes; regimes that many report are making matters worse. To sideline humanitarian - and legal - recommendations for education while the child recovers would be reprehensible.

Jane Colby