Ask UNSW To Cancel CBT/GET Training Study

Share on facebook
Share on twitter
Share on email

Write to the University of NSW and ask them not to allow this trial to proceed: contact the ethics department via email: 

and the study’s contact 

You may wish to also contact the administrator of the Mason Foundation, who are funding the work

There is a proposed study/trial starting in 2016 which I am deeply concerned about:

“There is Level One evidence indicating that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) is currently the most effective means to manage CFS (for review see Larun et al, 2015; Prince et al, 2008). Despite GET and CBT being widely acknowledged as best-practice interventions for CFS, the great majority of patients in Australia are not receiving these appropriate evidence-based interventions. Recent studies have demonstrated that the reason for this documented gap between research and practice is largely due to practicing health professionals lacking the knowledge and skills to provide appropriate care.
In order to address this lack of knowledge, our group has developed a CFS Treatment Manual and accompanying DVD aimed at providing clinicians with the knowledge and skills required to effectively manage CFS.”
https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=370222&isReview=true

Firstly “being widely acknowledged as best-practice interventions for CFS” is absolutely not true. They have been shown to cause harm in many people.
The PACE trial, which recommended use of graded exercise therapy and cognitive behavioural therapy, has breached the UK’s Information Commissioner’s Office’s orders to release their data and has been criticised earlier this month in the Wall Street Journal.
Here is the ‘widely-read scientific blog’ that the Wall Street Journal mentioned, it explains the flaws well: ‘Trial by Error’ from David Tuller.
More than 40 scientists, including Nobel laureates and world-leading CFS and ME scientists signed a letter to ask for an independent review of the PACE trial.
Eleven thousand patients (including me) signed a petition for the Lancet to withdraw it’s misleading PACE trial paper.
Emerge Australia (Australia’s leading patient advocacy organisation) say “There is no good evidence to support the use of graded exercise therapy or cognitive behaviour therapy and there is important emerging evidence on genetic and immune markers for the condition, so we ask the Department of Health not to waste precious research dollars on those studies”.
In an interview, Senator Ludlam said  “Australia shouldn’t be funding research into totally inappropriate exercise regimes or therapy, “these remedies are actually counter-productive and dangerous”.
The UK’s ME Association surveyed 1428 respondents and say “73% of respondents reported that CBT had no effect on their symptoms and 74% that their symptoms were made worse by GET”.
The (Australian) National Centre for Neuroimmunology’s Dr Don Staines says “anyone who suggests that this might be fixed by exercise therapy should probably be de-registered I think”.
The latest International Consensus Primer for ME (published in 2012, after the PACE trial) details (or references studies showing) many of the muscle acid differences, orthostatic problems and immune/inflammatory markers. It does not recommend cognitive behavioural therapy or graded exercise therapy.
It also has a narrower set of criteria than older CFS definitions, such as the Oxford criteria used in the PACE trial. The US National Institute of Health’s report says “continuing to use the Oxford definition may impair progress and cause harm. Thus, for needed progress to occur we recommend that the Oxford definition be retired.”
Please reassure me that this trial will not go ahead.
 

Share on facebook
Facebook
Share on twitter
Twitter
Share on whatsapp
WhatsApp
Share on google
Google+
Share on email
Email

3 thoughts on “Ask UNSW To Cancel CBT/GET Training Study”

  1. Hello,
    Can you please bullet point the email addresses.
    Further the last email address is incorrect.
    Thabk you kust trying to help but it tough working off a phone

    1. Hi Justin,
      I’ve bullet-pointed the addresses and double-checked the last address (I received a response so it is working!). Thanks for the feedback and I hope it helps.
      I hope our letters make a difference,
      Sasha

  2. In this “study” , doctors are trained in CBT and GET for CFS. There are no patients in the study. The outcome measures are how much the doctors learned from their training manuals. This really does need to be stopped. We do not need more doctors trained on this bogus treatment that harms CFS patients and has nothing but the fatally flawed PACE trials as “evidence” for its efficacy. This is completely out of line with current science on CFS!

Leave a Comment

Your email address will not be published. Required fields are marked *

Latest News

Important News from Jennifer Brea

Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a new Executive Director first!

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.

Donate

Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Subscribe
Scroll to Top