This blog concerns what is widely believed to be an unethical pilot study (SMILE) of a non-medical training programme (The Lightning Process) on children with the neuro-immune disease myalgic encephalomyelitis, also referred to as chronic fatigue syndrome or ME/CFS.
The lead researcher for SMILE is Dr. Esther Crawley, who leads the “CFS/ME” service at the Royal National Hospital for Rheumatic Diseases in Bath, UK. Dr. Crawley has influence over research and treatment of children and young people with ME/CFS at national level.
Dr. Crawley is also medical adviser to The Association of Young People with ME (AYME). AYME supports the SMILE study. It is very unlikely that SMILE would have been granted ethics approval without AYME’s support – the National Research Ethics Committee stated they were reassured by the fact that AYME had been consulted during the planning of the SMILE study.
Click here to read the Petition calling for AYME to withdraw its support of SMILE.
Action for ME (AfME) may be described as a sister charity to AYME and is also involved with the study. They both have links with the hospital in Bath, where Dr. Crawley’s clinic is based, at which the children are being recruited for SMILE at the point of diagnosis.
There are a number of concerns about SMILE, but the main concern is for the safety of children and vulnerable young people with ME/CFS. This concern arises from the number of patients with ME/CFS, including children, who have been harmed by doing The Lightning Process, including the need for hospitalisation, relapse in their illness after completion of the programme and other adverse effects from doing The Lightning Process.
This blog may be of interest to people who care about the safety and human rights of children in general, and for children and young people with disabling illness in particular. It may also be of interest to people who care about qualities such honesty, integrity, competency and ethical behaviour of those in public service, such as doctors and those in positions of responsibility in the NHS and in national charities for people with illness and disability.
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