Tag Archives: ME/CFS

NRES reply to our response to December 2010 ethics review of SMILE – 6th April 2011

Posted on April 6, 2011 by

Letter from National Research Ethics Service 6th April 2011 –  Re: Pilot Study of Lightning Process in Children with ME/CFS (SMILE) Thank you for your letter of 16 January 2011 about this study. NRES is aware that a number of … Continue reading →

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COMMENTS ON THE MINUTES OF SW2 REC REVIEW

Posted on March 26, 2011 by

COMMENTS ON THE MINUTES OF SW2 REC 7. Mr Parker has used the study to increase sales No evidence has been provided that Mr Parker has specifically used this study to increase sales. [snip] The protocol and application clearly state … Continue reading →

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SMILE – Bristol University Centre for Child and Adolescent Health

Posted on March 8, 2011 by

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

Posted on March 6, 2011 by

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

Posted on March 6, 2011 by

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”

Posted on February 24, 2011 by

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

Posted on February 12, 2011 by

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

Posted on January 16, 2011 by

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

Posted on January 6, 2011 by

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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Lifetime Ban on Blood Donation for ME/CFS 1st November

Posted on November 1, 2010 by

ME/CFS sufferers permanently deferred from giving blood Announced 7th October 2010 – http://bit.ly/1WlDcGb From 1 November 2010, people with Myalgic Encephalitis/Chronic Fatigue Syndrome (ME) were permanently deferred from giving blood in the UK. The change to donor selection guidelines, which applied … Continue reading →

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