Journal of IiME Volume 1 Issue 1 Jane Colby Invest in ME are happy to work with other groups and charities for the benefit of people with ME and to make progress regarding the urgent issues which need to be tackled. Our recent campaign to have ME recognised as a notifiable illness in schools was initiated from the work performed by Jane Colby. Jane is a former head teacher who has ME and who formed Tymes Trust. It is now ten years since Jane and Betty Dowsett published their work. Here Jane recalls a historic day for children with ME and describes the day that the term ME Plague was coined. Invest in ME book 2007 - “Schools swept by ME Plague” On 12th May, ME Awareness Day 2006, I was honoured to speak on ‘Children with ME’ at the Invest in ME Conference. I called for ME to be made notifiable due to its encephalitic symptoms and I am delighted that Invest in ME have since been campaigning for this. I was then invited to write a Review for the Journal of Clinical Pathology; called Special Problems of children with ME/CFS and the enteroviral link, it can be read online at www.cfids-cab.org/rc/Colby.pdf and in the printed Journal. On ME Awareness Day 2007 I am in a very different venue - Brentwood Cathedral - for our Remember the Children concert. But 10 years ago it was the 22nd May that caused a storm, when the headline above was splashed across The Guardian front page. I had no idea how big my joint research with Dr Betty Dowsett, a legend in her own lifetime, would become. I’d pre-recorded interviews for the morning television news and was booked for radio news shows, but as the phone rang constantly while I tried to get ready, and I had to use my fax to make outgoing calls, I began to get the message. Dr Dowsett went to ground like Badger in Wind in the Willows! Arriving at the studios at 7.45am I was asked: “Have you seen The Guardian?” I hadn’t. Then I was asked to fit The Today Programme in between the others. Guest Simon Wessely was saying: “I’m sure Jane would agree…” I didn’t, and I’m afraid I ignored his question. There was too much else to discuss. Mainly the fact that ME had just been revealed as the key reason for children and young people missing school long-term due to illness. ME was causing over half of all long-term sickness absence, almost twice that of cancer and leukaemia combined (51% against 23%). Getting the figures had taken five years. We studied a school roll of a third of a million children and over 27,000 staff. Not easy to ignore, although the British Medical Journal discouraged the profession from giving it credence. Six months later, however, published a 450 word letter from Dr Dowsett and myself, choosing the headline: ‘Journal was wrong to criticise study in schoolchildren’. At this distance in time it is easy to forget that it was a school epidemic that sparked off our study. What was the pattern in other schools, we wondered? Almost 40% of cases we uncovered were in clusters of 39 and 21% were in pairs. The clusters involved staff and pupils. We found a prevalence of 70:100,000 in pupils and 500:100,000 in staff. Associated with the clusters were other long term absences caused by viral illness, not yet diagnosed but often described as gastro-intestinal or flu-like. (Enteroviruses, the suspected culprits in many cases of ME, produce both these symptom profiles.) We concluded that the early investigation of infective agents associated with such a serious illness in schools should be instigated, and we recommended this. To our knowledge, nothing has been done. I feel another campaign coming on… You can read all the results of the survey as described by Dr Dowsett at www.tymestrust.org/pdfs/dowsettcolby.pdf 27 it Invest in ME Charity Nr 1114035 www.investinme.org
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