Australia and New Zealand clinics: Specialised Health

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I'm not familiar with Specialised Health in Sydney but that page is a mess. No mention of pem. I don't even recognise the diagnostic criteria they reference.

Interestingly, they cite one of Keith Geraghty's papers - I don't think they've fully understood it. And next reference down is to Nathan Butler (Active Health Clinic)

 

This is their website: https://specialisedhealth.com.au/nice-fatigue-management/

The Autonomic Nervous System diagram is based on the stress tolerance model and is from a site by sport scientist, Adam Virgile who got his BSc at Auckland Uni in Kinesiology and Exercise Science in 2012 and has worked in high performance sports in USA (currently the LA Clippers) and been an Associate Prof in allied professions at the Uni of Vermont. He has a lot of social media on sports exercise plans.

The Heart Rate Variability study is here, saying low sympathetic nervous system function is what they believe they can change for ME/CFS and can reduce PEM, no clear evidence of either claim but they offered this paper. https://www.researchgate.net/publication/6687018_Heart_rate_variability_A_review

Their approach is a stress model and by using tech to monitor changes in the HRV. I am not totally convinced as our autonomic nervous system is not functioning like “healthy” people (it is likely many of us have autoantibodies for our adrenergic receptors) and if you have POTS/OI, the Dysautomnia is due to altered brain pathways so I am not sure they can make these claims.

But they are not saying cure. I found their site quite patronising especially about changing their trademarked Bounce method now NICE has come out and how they refer to pwME. I think they are a bit simplistic and don’t really understand the physiology of ME as currently known and could be stigmatising but who knows may be helpful during the initial phase of ME/CFS.

A quote from their blurb

 

It is interesting to look round the site. The post on NICE that was originally flagged up looks quite enlightened.

On the other hand there is a poss about 'your claimant'.
The paying customer for this outfit is clearly an insurance company, not a patient.
This is a quote

Carmyn challenged Marise straight away by basing the program in a local gym, where she was around other people, with Carmyn there for support. Carmyn guided her through a range of strength and aerobic exercises, starting with 2 sessions together per week and eventually tapering down to once weekly, with Marise continuing her independent sessions at the gym and pool once she had built up her confidence. The emphasis was on boosting those feel-good endorphins that come from exercise – helping to reduce anxiety, improve energy and motivation.

They also worked on setting small goals with self-efficacy in mind – such as cleaning the house fortnightly, visiting the mall, buying a coffee, and engaging in conversation with someone at the gym. As her confidence grew and Marise noticed her energy levels improve, she started to show an interest in using her free time more wisely. They worked together to find volunteer work that Marise could do.

There is a strong impression that the product these people are selling is
'getting your claimant back to work'.

And being cynical the NICE post is just a way, as they more or less admit, of persuading insurance company clients to go on sending cases.

 

And what about this quote:

So when we are faced with a client who is apprehensive about exercise physiology, we know that it is just another barrier that we need to knock down before we can get the ball rolling and start to reap some of those benefits!

 

ugh

 

Yea, reminds me of the focus some people, I met early on, had re the role of insurance companies in promoting GET/CBT ---- bit of untraceable soft lobbying of the politicians via the old boys/girls network---.
Thanks to all who challenged the use of unevidenced treatments in the NICE review (I wasn't one of them).

 

One of the first things I noticed about ME was that I no longer got any feel-good endorphins from exercise. In fact I started getting some feel-really-shit endorphins. So I should be taken to a gym and those feel-good endorphins will magically come back as if it was all just a dream?

I have actually managed to get those feel-good endorphins to come back. By doing zero exercise and sport for a number of years. Now after a short, slow walk I sometimes feel as endorphiny as I used to after cycling all day. It's a pleasant surprise. Maybe I should set up my own "Flounce" program, basing the program on a local sofa, where the patient is around nobody, and is free to choose their own comfortable position.

I just corrected a typo above, I originally wrote "fee-good endorphins". Seems appropriate.