Australia: Petition: Call for Change for ME patients Australia

[Noir]

"We are looking to submit this Australian version of the Call-For-Change petition to the current Australian Disability Royal Commission and Australian Parliament to investigate the violence, neglect, abuse and exploitation currently occurring in the ME and CFS community due to outdated guidelines, policies and research."

"We would like Australia to follow suit with the US and UK to remove harmful abusive therapies like GET & CBT being marketed as “curative treatments” and fund more biomedical research. This outdated research has also now been formally discredited by the Cochrane Institute, as shown in this paper: "Cognitive behaviour therapy for chronic fatigue syndrome" There is now no reason these treatments should remain in practice. We also hope to have more broader funding for patient led advocacy bodies and biomedical led clinics to appropriately treat patients.

The most urgent outcome, which must be achieved without any further delay, has to be to stop harming patients."

Anyone can sign.

Link.

 

[Sean]

Not sure Cochrane is the best source to cite.

 

[Hutan]

Not sure Cochrane is the best source to cite.

I'm quite sure it isn't the best to cite. Yes, there is an editorial note on it that says

This 2008 review predates the mandatory use of GRADE methodology to assess the strength of evidence, and the review is no longer current. It should not be used for clinical decision‐making. The author team is no longer available to maintain the review.

But it doesn't say the research has been formally discredited by Cochrane.

And then the review is still there, in the 'Common Mental Disorders Group', and it is written to make CBT look helpful for ME/CFS, so long as people bother to complete the course.

Chronic fatigue syndrome (CFS) is a very common and disabling condition, in which people suffer from persistent symptoms of fatigue that are unexplained. Cognitive behaviour therapy is a psychological therapy model that is commonly used to treat a range of psychological and chronic pain conditions. This review aimed to find out whether CBT is effective for CBT, both as a standalone treatment and in combination with other treatments, and whether it is more effective than other treatments used for CFS. The review included 15 studies, with a total of 1043 CFS participants. The review showed that people attending for CBT were more likely to have reduced fatigue symptoms at the end of treatment than people who received usual care or were on a waiting list for therapy, with 40% of people in the CBT group showing clinical improvement, in contrast with 26% in usual care. At follow-up, 1-7 months after treatment ended, people who had completed their course of CBT continued to have lower fatigue levels, but when including people who had dropped out of treatment, there was no difference between CBT and usual care.

So, anyone who doesn't know the politics, who clicks through will be thinking, 'but you said that it has been formally discredited, but it actually looks like CBT is helpful, it just needs more research.

And, if Cochrane ever get around to finishing the Exercise for ME/CFS review and the finding is that exercise is a useful treatment, what then? Does that mean we should believe that too, because Cochrane said it?

I commend the people who developed the petition for their intent. But I hope that they will reconsider the wording, even if it means starting again. The NICE ME/CFS Guideline, and the CDC web pages on ME/CFS are, in my opinion, the best high credibility sources to direct people to. Any reference to Cochrane is a can of worms.

 

[Ariel]

Can this text be changed? It misses the point with references to Cochrane, which should be removed.