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Australia and New Zealand clinics: Specialised Health
- Thread starter Sly Saint
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- australia clinic me/cfs new zealand
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)
Actually, I think their website content is very much in line with the NICE ME/CFS Guideline, as they claim.
There is a relentless positivity, but just possibly a person newly diagnosed with ME/CFS and wanting support could do worse than to do their program (delivered online) at the beginning of their illness. They do seem to talk about pacing and avoiding PEM. I guess it depends on how much pressure there is on clients to report improvements. Although there's an inference of improvement, I didn't actually see anything that straight out said that they will fix anyone.
There's a big emphasis on monitoring HRV, and meditation and mindfulness get mentioned. Lots of mention of boom and bust.
The website says data is being collected from clients for a study - so I expect we will see a publication at some point that will be used in promotional material.
There is a relentless positivity, but just possibly a person newly diagnosed with ME/CFS and wanting support could do worse than to do their program (delivered online) at the beginning of their illness. They do seem to talk about pacing and avoiding PEM. I guess it depends on how much pressure there is on clients to report improvements. Although there's an inference of improvement, I didn't actually see anything that straight out said that they will fix anyone.
There's a big emphasis on monitoring HRV, and meditation and mindfulness get mentioned. Lots of mention of boom and bust.
The website says data is being collected from clients for a study - so I expect we will see a publication at some point that will be used in promotional material.
hibiscuswahine
Senior Member (Voting Rights)
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
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
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Jonathan Edwards
Senior Member (Voting Rights)
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.
Jonathan Edwards
Senior Member (Voting Rights)
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!
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!
Yeah, I had been thinking, if you are compelled to go through this programme in order to get your income protection insurance payout, perhaps it's not so bad. At least they seem to be understanding PEM and not having people push to the point of causing it.
But I hadn't seen all of those bits quoted. While these exercise physiologists may not necessarily cause physical harm, their unevidenced beliefs could cause psychological harm.
But I hadn't seen all of those bits quoted. While these exercise physiologists may not necessarily cause physical harm, their unevidenced beliefs could cause psychological harm.
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).
TiredSam
Committee Member
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.