Australia: Active Health Clinic, Melbourne, Nathan Butler

[Hutan]

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I've always wondered what the silent majority of the entire PACE team are thinking, and why none of them have spoken out in the interest of patients.

My doctor once suggested I go to the exercise physiology clinic of Nathan Butler. Nathan Butler was involved in the PACE trial, presumably as a GET therapist, and had subsequently set up the Melbourne, Australia clinic, specialising in CFS and fibromyalgia. Back in 2015 or so he proudly proclaimed his involvement in PACE on the clinic's website which promoted recovery through exercise. At the time, I was interested to find somewhere where I could do a 2-day CPET and, while I didn't like the look of the clinic, I rang them to see if they knew. The staff there had no idea what I was talking about. (Yes, this was an exercise physiology clinic specialising in the rehabilitation of people with CFS.)

Anyway, now I can't find any mention of PACE on the clinic's website, not even in the section about Nathan Butler's experience. The claims it makes about recovery from CFS are much more toned down and it talks about 'sustainable exercise'. It has a section about orthostatic intolerance which I'm pretty sure wasn't there before - the clinic now claims to treat this condition. And it has a section on 'Cancer and Fatigue', 'coming soon'.

So, in answer to the question @Sasha, I think for some of them whose career, whose business had been built around the findings and reputation of PACE, it's been a pragmatic matter of adapting their offering and edging quietly away. I don't know what Nathan Butler believes now, but it would not be in his interest to loudly denounce the PACE trial. Best to pretend it never happened.

I guess this is a success for us.

 

[Hutan]

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Nathan Butler, who runs a substantial exercise therapy business in Melbourne, was involved in the PACE trial, delivering GET. When I first became ill in 2013, the clinic's website proudly noted the link. When I looked some years later, there was no mention of the trial at all.




(I see he's now on the Long Covid gravy train...)

 

[Hutan]

There is some discussion about Nathan Butler here:
Episode of Australian current affairs program, “Insight”, on ME/CFS on October 16, 2018

 

[Art Vandelay]

As I noted in another thread, Long Covid patients in Australia are being largely dismissed and referred to this clinic.

Interestingly, there's no longer any mention of CBT and GET on their website any more. I seem to recall Butler had a long defence of PACE on his site at one stage when people had started to question it.

Through pacing and gradual return to activity, we are able to slowly and confidently build your capacity, without increasing your symptoms.

So it's "gradual return to activity" rather than GET now.

 

[Sean]

"...we are able to slowly and confidently build your capacity, without increasing your symptoms."

Still a bold claim, unsupported by the evidence.

 

[Art Vandelay]

Still a bold claim, unsupported by the evidence.

Also a very bold claim:

In 2001, Active Health Clinic founder Nathan Butler met paediatrician Dr Lionel Lubitz when working at the Austin Hospital. Dr Lubitz was working with a group of adolescents who were very unwell and not being taken seriously by the greater medical profession. They had been diagnosed with chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME).

Through the program they participated in at the hospital, these teenagers were able to return to school, socialise with friends and no longer be limited by their health. Seeing these changes inspired Nathan to continue to develop a program to manage complex fatigue, with cutting edge research and links with the world’s best practitioners in CFS/ME.

I can't recall seeing any reputable studies out of the Austin showing any great success with their barbaric 'fatigue program' for adolescents.