Tymes Trust Alert 2012-06 Message from Jane 29 June 2012 ====== Follow Jane on Twitter @JaneCColby or read her tweets at www.tymestrust.org ====== DR ELIZABETH DOWSETT REMEMBERED An interview ====== On 21st June, I shared the news on Twitter about the sad death of Betty Dowsett. In no time at all, my tweet was retweeted till it reached at least 3475 followers, and goodness knows where it's gone since. Betty's work was known worldwide. She wasn't just a consultant microbiologist and ME specialist, she was one of the very few experts who really understood ME, winning the prize for best review article in the Journal of Hospital Medicine (1989). Betty diagnosed my own severe case, she entered me into a research study that found the virus I was suffering from - and then she recruited me into working with her! In my tweet I included a link to Betty's commentary on our 5-year project. If you haven't yet read it, you can find it here: http://www.tymestrust.org/pdfs/dowsettcolby.pdf. In the late 1990s I interviewed her. Here's part of that interview. --- Jane: Is ME a worldwide problem? Betty: Yes. With the exception of those third world countries which have poor sanitation and warm climates. It circulates in all temperate countries and those with good sanitation, by which I mean proper housing with running water. Jane: Is it increasing or are we just more aware of it now? Betty: It's increasing. Several surveys have shown that between 1980 and 1990 the incidence went up about seven times. Although it's come down a bit since, it hasn't gone down to the baseline, and it isn't likely to. Jane: So that was a peak? Betty: It was more than a peak, because most peaks just go up and come down. This was a six-year peak - at least six years. Now it's down to about where it was in the late 1970s, but that's nowhere near the baseline. Probably every ten years, the incidence will increase again. It's following the pattern of polio. We watched polio epidemics which used to just come up and go down, sometimes with a two or three year interval. Then eventually in the late 1940s the incidence increased over a six year period - it made a great mountain and it never came down. It was only vaccination that brought it down. Jane: And ME is repeating that same pattern? Betty: Yes. It has replaced the polio epidemics. Jane: What made you realise that the problems of youngsters with ME needed to be given special attention? Betty: I realised from the patients I saw and from the accounts they gave me of their difficulties in being treated as ordinary patients, getting schooling and getting a diagnosis. This was inescapable information from patients even though in the literature of that time, including the literature of the charities, people were doubting that there was even such thing as ME in young people. Certainly their problems were being minimised. Jane: You're saying their problems were being played down? Betty: Yes; a) they weren't recognised and b) if they were, people just couldn't believe it. There was a big debate as to whether young people suffered from ME. ... And that, as they say, is history. The medical establishment was clearly shaken when our study was published. No-one could again deny that ME existed in children. Great stuff Betty. A landmark moment. An indomitable colleague remembered. Jane Colby FRSA Former Head Teacher Executive Director The Young ME Sufferers Trust PO Box 4347, Stock, Essex, CM4 9TE www.tymestrust.org Tel: 0845 003 9002 Holder of The Queen's Award for Voluntary Service: The MBE for Volunteer Groups ====== READ ALL PREVIOUS ALERTS AND SUBSCRIBE TO MY LIST AT www.tymestrust.org To unsubscribe, send an email via the website Contact Us form. ====== You are welcome to redistribute or reprint this email without seeking our permission provided: 1) you do not abbreviate, add to, or change the text in any way; 2) the authorship information is retained; and 3) www.tymestrust.org is credited as the source. Jane Colby is Executive Director of The Young ME Sufferers Trust. She was a Headteacher for nine years, a member of the government Chief Medical Officer's Working Group on CFS/ME and co-authored ME/CFS In UK Schools, the largest epidemiological study of ME to date. She is a life member of the National Association of Head Teachers and a Fellow of the Royal Society of Arts. Copyright (c) 2012 The Young ME Sufferers Trust