I inadvertently joined Esther Crawley's Patient Advisory Group last year, not knowing anything about her or PACE, after my teenage daughter collapsed with ME. I had ME myself twenty years ago, and her father has Ankylosing Spondylitis, a rheumatic auto-immune disease. It has always struck me how very similar many of the symptoms are, including the fatigue, which has kept him off work for several years at a time during his working life, and the up-and-down nature of the illness. Although I'm not a medic, I am an academic, and I was interested to meet Esther; when she claimed that most children and young people got better within 6 months, I asked her if she checked how well they were in the months and years after that. She swept away my question by saying that she clearly didn't have the funding to contact people after the end of the study. I thought this odd. My daughter felt better after 6 months, but much, much worse after 8. She has now been housebound for 18 months, and too ill to continue her education. I also asked Esther about the rituximab trial in Norway which I had read about in the New Scientist with real excitement - as my husband is on a similar immune-suppressant which has made a huge difference to his health, I could completely understand that this might be a breakthrough. In response Esther was completely dismissive of the trial itself, making very strong statements about the dodgy nature of the methodology of the investigators involved, and suggesting that this was the general view of the scientific community. How interesting to discover later, then, that very similar aspersions had been made about her own work. As an academic under increasing pressures to get funding and grow my international reputation and evidence of 'impact', I can understand Esther's hard work to convince society of the effectiveness of her research through the media. I don't, however, forgive her for her ability to suspend her morals by dismissing all evidence which suggests that she is wrong. As Karl Popper pointed out, we should all be trying as hard as we can to disprove our hypotheses, as only then can we hope to prove them.
Source -
http://www.virology.ws/2016/11/21/t...new-fitnet-trial-for-kids/#comment-3015192110
