James LeFanu starts an article in the Telegraph May 12th. by saying “While it may require considerable determination and persistence from those with chronic illnesses to receive appropriate help, those lucky enough to be fit and healthy are at constant risk of being checked and screened into patienthood or treated for conditions they do not have.”
He gives a mention to ‘Voices’ and how to buy the dvd, and particularly mentions children with CFS/ME “The difficulties many parents may encounter in obtaining satisfactory treatment for their children is explored in the film ‘Voices from the Shadows’, which can be obtained as a DVD from the website voicesfromtheshadowsfilm.co.uk “
It is interesting to read that even though Esther Crawley now diagnoses a staggering 1% of secondary school children with CFS/ME ( apparently those who missed an unexplained 6 days of school in a 6 week term were included ) James Lefanu points out that “Treatment remains regrettably unsatisfactory, as Dr Esther Crawley, a Reader in child health at Bristol University who organised the study acknowledges, noting the standard regime of graded exercises and cognitive behavioural therapy is only “moderately” effective.”
It would seem that Crawley is diagnosing way more children than anyone would have dreamed of as having CFS/ME but she also admits that standard treatment is only ‘moderately effective‘. The treatments she is referring to – CBT and GET for those well enough to attend clinics – were assessed in the PACE Trail to have a ‘success’ rate of around only 15% above standard medical care. (In case you were wondering what standard medical care is, I recently heard Simon Wessely describe it to a large room full of doctors, as ‘being nice to patients’!!!!)
Chris Snell speaking at the FDA workshop (2nd day panel 3 ) pointed out that using the only objective criteria in the trial (the 6 min walk test, which was completed by only 61% of participants) after 52 weeks of treatment patients improved their speed on average from around 1.9 miles per hour to 2.3 mph over a six min. period. This is a level of unfitness still so severe that if they were being considered for a heart transplant they wouldn’t be considered likely to survive the surgery!
Yes, this really would sound ‘regrettably unsatisfactory’ to most teenagers, and adults too! These desperate results for the only recommended treatments in the UK is in extraordinary contrast to Esther Crawley’s glowing enthusiasm for her work helping young people. At a meeting of doctors in Bristol last March, she enthused about what a wonderful, enjoyable and easy job she has – working with these wonderful children and teenagers who are so grateful to her for her what she has to offer!
What an extraordinary discrepancy there is between different accounts of what constitutes having these different illnesses, illness prevalence, recovery and the success or failure of treatments! If you put on rose tinted specs you see CFS/ME and recovery everywhere! but if you take them off you might see the tragedies like those shown in Voices – the hidden and dismissed suffering that continues while such confusions hinder research and understanding.