Tag Archives: myalgic encephalomyelitis

SMILE trial: Summary of Concerns

A trial of The Phil Parker Lightning Process on children newly diagnosed with ‘CFS/ME’ (Chronic Fatigue Syndrome/Myalgic Encephalopathy or Myalgic Encephalomyelitis)  A small online focus group formed in October 2010 to share various concerns after the SMILE trial passed approval by … Continue reading

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Correspondence with CMO March 2011

Letter from CMO 11th March 2011 Dear Jo I refer to your related emails of the 16th February at 16:26, 16:28 and 16:38 respectively. Thank you for copying to me your correspondence with Joan Kirkbride, head of operations for the … Continue reading

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SMILE – Bristol University Centre for Child and Adolescent Health

From the Bristol University website: updated 8th March 2011 SMILE – Specialist Medical Intervention and Lightning Evaluation What is SMILE? SMILE is a feasibility study to see whether it is possible to recruit young people into a study to compare … Continue reading

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Petition for AYME to Denounce PACE and SMILE

CALL FOR ACTION   This petition calls for the Association of Young People with ME (AYME) to take the necessary action to address the serious concerns outlined below, or cease operating as a charity for children and young people with … Continue reading

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Full Wording of Petition for AYME to denounce PACE and SMILE

CALL FOR ACTION This petition calls for the Association of Young People with ME (AYME) to take the necessary action to address the serious concerns outlined below, or cease operating as a charity for children and young people with ME.  … Continue reading

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TYMES on PACE “ME – the truth about exercise and therapy”

GUARDIAN LETTER ABOUT THE PACE TRIAL from Jane Colby, Executive Director of The Young ME Sufferers Trust.      “ME – the truth about exercise and therapy” “Reporting on the PACE trial of treatments for ME/CFS by Professor White and colleagues, Sarah Boseley … Continue reading

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Letter re: Daily Mail article by AYME President on 12th Feb. 2011

Letter to Ethics Service 14th February 2011 I would like to draw your attention to an article written by the President of AYME, Esther Rantzen, that was published in the Daily Mail on-line on 12th February. She has discussed her … Continue reading

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Our Response to December 2010 Ethics Service Review of SMILE 16th January 2011

Letter To:  Mrs Joan Kirkbride, Head of Operations, National Research Ethics Service 16.01.2011 Dear Mrs. Kirkbride, Re: Pilot Study of Lightning Process in Children with ME/CFS (SMILE) Thank you for your email of 6th January. Please accept permission to re-post … Continue reading

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Ethics Approval Upheld: Letter from NRES 6th Jan. 2011

Letter from Joan Kirkbride, Head of Operations, England, National Research Ethics Service 6th January 2011 Assessing the feasibility and acceptability of comparing the Lightning Process with specialist medical care for Chronic Fatigue Syndrome (CFS/ME) – pilot Randomised Controlled Trial This … Continue reading

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CFS/ME Paediatric Service RNHRD Bath

On the Royal National Hospital for Rheumatic Diseases website December 2010: Chronic Fatigue Syndrome / ME Service for Children & Young People About Chronic Fatigue Syndrome/ME (CFS/ME) CFS/ME in children and young people is surprisingly common. Around 1 in 100 … Continue reading

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