In my experience, it's what abusive people feel compelled to do when their normal tactic of manipulating everything from the shadows starts falling apart. They end up having no choice but to expose themselves more and more for what they really are, to more and more people who never realised what sort of people they are. They hide in the shadows to avoid risk (and letting others take their risks for them), but increasingly having to take on their own risks, as fewer and fewer others are duped into doing it for them.
A lot of people don't think she's in the field of ME research right now just claims she is
Yep. They could just call it "stuff we don't understand and can't help with" instead of giving it a fancy label and blaming the patient.
Unethical: Why Bristol University SMILE trial should not have been conducted with chronically ill children
September 28, 2017James C Coyneactivism, chronic fatigue syndrome, citizen scientist, clinical trials, ethics, evidence-based practice, human subjects, Informed consent, Lightning Process, ME/CFS, Uncategorized Tags: SMILE trial, Esther Crawley, Phil Parker, Lightning Process, University of Bristol, MAGENTA trial
If it should have been conducted at all, the first clinical trial of Lightning Process should not have been conducted with chronically ill children. Safety and efficacy had neither been established with adults, nor healthy children.
Phil Parker, developer of the trademarked, commercial Lightning Process package claims that is not a psychological treatment, but a physical one. He further claims its scientific basis is an amalgamation of neurolinguistic programming, osteopathy, and life coaching.
There is no plausible scientific mechanism by which Lightning Process would work. A small minority of vulnerable adult and child patients with chronic fatigue syndrome are drawn to the false claims of the health benefits lightning process, which the UK Advertising Standards Authority now forbids posting on the web. This is a truth-in-advertising-problem, not justification for launching a clinical trial.
Researching the Lightning Process is no more ethically and scientifically justified than researching Prince Charles’s claims that (organic) coffee enemas can slow progression of cancer. Yet, the logic is the same that has been used to justify the SMILE trial.
Pediatrician Esther Crawley should undergo remedial ethics training and I recommend an excellent source below.
No parents should consent to their children participating in clinical trials of Bristol University, until a transparent independent inquiry reports how and why the SMILE trial was approved.
A belated praise to the parents who stood up against Professor Esther Crawley and all her nastiness. She should apologize to you.
Required reading for Professor Crawley and relevant administrative staff of Bristol University
Ethical Conduct of Clinical Research Involving Children. Edited by Marilyn J. Field and Richard E. Behrman. 448 pp., illustrated. Washington, D.C., National Academies Press, 2004. $57. ISBN 0-309-09207-8
Although the price is listed as US$57. A free downloadable PDF is available here
No excuse, Professor Crawley, overcoming your being ethically challenged can start with some free reading.
as well as on my death.
Who cares if she's good at measuring cytokines. She is untrustworthy and slippery as an eel over her research. I'm sure there are plenty of other people good at measuring cytokines without her dodgy history in ME research. I would never support any charity who supported her. Currently my (small) monetary support goes to MEA and ME Research UK. Need to update my Will soon, so will be adding a couple of not huge donations to that. Just wish I was a multi-millionaire so could donate more NOW
Regret to say I'm not holding my breath. At 69, with 25 years of having ME, I kinda despair of any decent treatment arriving in my lifetime. At least I'll be able to die happy knowing I've done a tiny bit to help future patients.
