To: ESTHER CRAWLEY - Bristol Uni - GMC- MRC-NICE-NHS England , NHS ethical approval department for MAGENTA , Department of Health , MPs

STOP MAGENTA - STUDY ON ME CHILDREN USING AEROBIC EXERCISE AND INCREASING INTENSITY

STOP MAGENTA - STUDY ON ME CHILDREN USING AEROBIC EXERCISE AND INCREASING INTENSITY

Stop the Magenta trail currently testing CBT and GET on children with ME.

Why is this important?

Children participating did not seem to provide informed consent from the documentation on Bristol UNI website page for the study Magenta .

Considering the recent landmark change to UK law on consent on 11 March 2015 , requires all harms according to all research available , no matter how small , to be informed to a patient when recommending a treatment , and that relying solely on a reasonable body of opinion , such as NICE Guidelines , is no longer allowed . The patient is also to be legally informed of alternative treatments according to all the research available , and that it is then for the patient to decide the significance of the harms and benefits of each treatment , not the doctor - researcher . So that a patient - research participant , can provide informed consent to a treatment application . Please search for each Facebook hashtag for more information.

This "PACE Trail for kids" - which is currently in operation - uses aerobic exercise and increases the heart rate , which is specifically advised against , by #workwellfoundation who identified a damaged aerobic system in ME Patients . As well as recent downgrade of these treatments by #ahrqreview , and recent publication of metabolomics studies by #openmedicinefoundation who discovered ME patients are in hibernation . Aerobic activity , with increasing intensity causes long term damage to skeletal muscle in ME patients , and a systematic review of harms , of this as well as other supporting infomation , biological harm , of these treatment recommendations , due to the biochemisry of these patients , can be found by searching the Facebook hashtags mentioned above .

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Reasons for signing

  • Professor Coyne describes the problems with the MAGENTS trial in detail in Plos Blogs here. There is good evidence that real and unreversible harm could be done to children. This is nothing short of abuse. Please read: http://blogs.plos.org/mindthebrain/2016/09/23/before-you-enroll-your-child-in-the-magenta-chronic-fatigue-syndrome-study-issues-to-be-considered/
  • To do this to ill and vulnerable children is an outrage especially since the original PACE study results gave now been shown to be cooked
  • We should be spending research money on biomedical research. We have seen enough evidence thatgraded exercise causes more problems than it solves.

Updates

2016-09-01 16:20:23 +0100

100 signatures reached

2016-09-01 12:03:27 +0100

50 signatures reached

2016-09-01 11:15:18 +0100

25 signatures reached

2016-09-01 10:30:12 +0100

10 signatures reached