Tag Archives: Association of Young People with ME

Complaint to National Patient Safety Agency – May 2011

To: Chief Executive of NPSA Date: 3rd May 2011 Re: Complaint Ref. 10/H0206/32 submission date 24.05.2010 Assessing the feasibility and acceptability of comparing the Lightning Process with specialist medical care for Chronic Fatigue Syndrome or Myalgic Encephalopathy (CFS/ME) pilot Randomized … Continue reading

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NRES publishes lies about SMILE study – 1st April

1st April 2011 To: Joan Kirkbride <joan.kirkbride@nres.npsa.nhs.uk> Cc: janet.wisely@nres.npsa.nhs.uk, “sally.davies” <sally.davies@dh.gsi.gov.uk>, “Bill.Davidson” Bill.Davidson@dh.gsi.gov.uk Dear Joan, Thank you for your mail of 16th March. I believe you may have again been misled by the SMILE research team. You said: “1. It … Continue reading

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COMMENTS ON THE MINUTES OF SW2 REC REVIEW

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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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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