https://www.coyneoftherealm.com/blo...l-of-quack-chronic-fatigue-syndrome-treatment
"...It’s not just patients and patient family members activists who object to the trial. As professionals have gotten more informed, there’s been increasing international concern about the ethics and safety of this trial.
"The Science Media Centre has consistently portrayed critics of Esther Crawley’s work as being a disturbed minority of patients and patients’ family members. Smearing and vilification of patients and parents who object to the trial is unprecedented.
"Particularly with the international controversy over the PACE trial of cognitive behavior therapy and graded exercise therapy for chronic fatigue syndrome, the patients have been joined by non-patient scientists and clinicians in their concerns."
Let us not forget the work that has been done by selected of the UK patient organisations and parliamentarians on Lightning Process in general, and NRES and ASA complaints in particular:
Posts archiving background to the SMILE Trial are archived on my old site,
ME agenda, under Category "Lightning Process, SMILE study" (2011 and earlier):
https://meagenda.wordpress.com/category/lightning-process-smile-study/
Posts:
Complaints to NRES and NRES responses (2011),
ME Association Board of Trustees discussions (2010),
Forward-ME discussions (2010),
Bath/Bristol Lightning Process pilot study: Minutes of meeting of External Advisory Group (02.11.10), Transcript: BBC Radio Berkshire, Anne Diamond, ME/CFS: Shepherd, Findley, Parker (2010),
Response from Joan Kirkbride, NRES (SMILE pilot study in children) (2010),
Lightning Process pilot study in children (SMILE): request for the funding application documents (2010),
AYME welcomes ethical approval of Bath/Bristol Lightning Process pilot study in children (SMILE) (2010),
Countess of Mar Written Question on ethical approval of Lightning Process study: Response from Earl Howe (2010),
Which patient organisations were involved in the development of the SMILE pilot study? (2010)
Response from NRES following complaints about Lightning Process trial (2010),
Countess of Mar: Questions for Written Answer: Lightning Process pilot study ethical approval (2010),
Children should not be used as guinea pigs: Prof Robin Gill, Church Times (LP pilot study) (2010),
House of Commons: Written answers and statements: Phil Parker Lightning Process (2010),
Chutzpah – he’s got it in spades! (Lightning Process and scientific research), (2010).
SMILE – Specialist Medical Intervention and Lightning Evaluation Key published documents (2010),
“Unethical” Lightning Process pilot study in children receives ethics approval (2010),
An open AGM and some questions for Action for M.E. (Lightning Process) (2010),
Landmark agreement extends ASA’s digital remit (Lightning Process pilot study in children) (2010),
Lightning Process: further statement from ME Association and Young ME Sufferers Trust (2010),
Update on ethics approval: Dr Esther Crawley Bath/Bristol Lightning Process pilot study for children 8 to 18 (2010),
Questions for Action for M.E. (Lightning Process pilot study in children) 2010,
Action for M.E. and Lightning Process research on children – An opinion: Peter Kemp (2010),
Action for M.E. issues second position statement on Lightning Process pilot in children 8 to 18 (2010),
25% ME Group position statement on Lightning Process pilot study in children 8 to 18 (2010),
Response to request for Internal Review FOI: Lightning Process pilot study in children (2010),
Lightning Process pilot: Update and response from Research Governance Manager, DoH (2010),
House of Commons Debate: Health: Lightning Process (2010),
FOI requests: South West SHA and National Research Ethics Service (2010),
Teen ‘trained’ to overcome illness: This is Cornwall (2010),
Scientific trial involving children and the Lightning Process is unethical, says joint statement issued by two national ME charities (2010),
BRAME Statement about the Lightning Process (2010),
Request for internal review: FOI responses Lightning Process pilot using ME and CFS children (2010),
Lightning Process pilot for ME and CFS children: Funding letters (2010),
A question of ethics; Juvenile Treatment – Testing and LP – CBT/GET ethics (2010),
Unethical Bristol/Bath Lightning Process ME/CFS children pilot study (2010),
ME Association: Advertising Standards Authority upholds a complaint against a Lightning Process practitioner (2010),
Advertising Standards Authority upholds complaint against Withinspiration (Lightning Process) (2010),
GOSH gives platform to Lightning Process (2009),
Letter to AYME: Your articles on CBT and the lightning process, Lawrence Alexander, (2008),
Radio 4: Leo, Rusty and ME: You and Yours follow-up, (July 2007)