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To: University of New South Wales and the Mason Foundation

Stop graded exercise therapy trial at University of NSW

We are deeply concerned that your trial, UN1111-1180-1073, "investigating the efficacy of online continuing education for health professionals to improve the management of Chronic Fatigue Syndrome (CFS)" is based on poor science and is likely to cause harm to patients.

We ask the University of NSW to cease this study immediately and the Mason Foundation to withdraw funding and to cease funding trials using graded exercise therapy.

Why is this important?

This proposed study is based on the PACE trial's evidence. The summary the University of NSW provided says "... GET and CBT being widely acknowledged as best-practice interventions for CFS" but this is wrong and there is no evidence to support proceeding with this trial "improving clinician knowledge of CFS and their confidence and skills in implementing evidence-based CFS interventions".

The PACE trial's evidence recently revealed that the authors published vastly inflated improvement results. The information also showed graded exercise therapy and cognitive behavioural therapy did not demonstrate a statistically significant advantage over specialist medical care alone.

Stat News reported the PACE trial's "revised definition of “recovery” was so loose that patients could get worse over the course of the trial on both fatigue and physical function and still be considered “recovered.” The threshold for physical function was so low that an average 80-year-old would exceed it.

"In addition, the only evidence the researchers had that patients felt better was that patients said so. They found no significant improvement on any of their objective measures, such as how many patients got back to work, how many got off welfare, or their level of fitness."

The University of NSW should not rely on evidence or build further research from the PACE trial as independent scientists now view the PACE trial as worthless because of basic design flaws.

The Mason Foundation should not fund studies based on bad science and proven harm to patients.

The ME Association says "GET should be withdrawn with immediate effect as a primary intervention for everyone with ME/CFS. One of the main factors that led to patients reporting that GET was inappropriate was the very nature of GET itself, especially when it was used on the basis that there is no underlying physical cause for their symptoms, and that patients are basically ill because of inactivity and deconditioning.

"A significant number of patients had been given advice on exercise and activity management that was judged harmful with symptoms becoming worse or much worse and leading to relapse." (from http://www.meassociation.org.uk/wp-content/uploads/2015-ME-Association-Illness-Management-Report-No-decisions-about-me-without-me-30.05.15.pdf)


Reasons for signing

  • My daughter has CFS, we have tried this on doctor's advice and it only made her worse. New scientific & better validated research shows it is clearly evident promoting GET & CBT is damaging to ME/CFS sufferers...we want real solutions NOW!
  • I have cfs
  • The growing trend to label ME as 'functional' makes patients vulnerable to the popular but unfounded 'train your brain' notion. I would be in favour of a well built trial, but we're talking about real people who, unless they DO NOT HAVE ME, will suffer permanent loss of function! Think up a good questionnaire and track down those who've been subjected to it then go back to the drawing board and come up with a trial that will actually help not hinder. Please! We really need good research!

Updates

2016-12-06 22:11:29 -0500

500 signatures reached

2016-10-14 14:44:26 -0400

100 signatures reached

2016-10-13 06:18:55 -0400

50 signatures reached

2016-10-13 01:53:29 -0400

25 signatures reached

2016-10-13 00:05:27 -0400

10 signatures reached