At his blog Quick Thoughts, James Coyne today called on Australian patients to refuse to register for a study using dance and sports video games as treatment for ME/CFS. In a long post he details what is wrong with the study (let's start with the study's premise that exercise is just what ME/CFS patients need!) and ends by urging Australians to boycott not only to protect themselves but to inspire patients in the UK faced with the decision on whether to participate in Esther Crawley's new online CBT study.
Australian patients face a clear challenge and a clear choice whether to participate in this clinical trial. Maybe they can act in a way that inspires the parents of CFS/ME children in the UK to similarly demand involvement before consenting to their children to participate in a clinical trial. Principal Investigator Esther Crawley has given no indication that she will share her data from a new trial of an Internet-based CBT program for adolescents with CFS.
Esther Crawley has a bad history with the patient community. Through the NHS, she inflicted a quack Lightning Process treatment on children and adolescents with CFS/ME in the SMILE trial. Yet, three years after completing the trial, she still has not published the results. But her friend Phil Parker has profited handsomely. Although the UK’s Advertising Standards Authority (ASA) has forbidden him from advertising the Lightning Process as a medical treatment, Parker has received payment for training and providing treatment in a clinical trial. Parker even implied on his promotional website that his treatment was being used in the Northern Ireland NHS – that is, until I alerted a member of the Northern Irish National Assembly Health Committee and the NHS insignia was removed.