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I’ve just received an email from the CFS Discovery Clinic in Melbourne advising that Dr Lewis is retiring and the clinic is closing.
All of his upcoming appointments are cancelled.
Announcement
The CFS Discovery Clinic is seeking to form collaborative relationships with medical practitioners who wish to increase their understanding of this complex illness and contribute to the work that is being done to identify and refine effective treatment protocols. New information is emerging from overseas research and rapidly-evolving treatment methods are improving the lives of thousands of patients worldwide. The clinic welcomes expressions of interest for participation in patient care, administration and research. There is a possibility that involvement could lead to a full professional role in this specialist area. Please make initial contact by emailing or calling the clinic if you are interested.
Nooooooo. I've heard quite a few Australian researchers mention how essential he was with providing access to patient data and samples.
Looking at the clinic website it looked like they were hoping to find someone to train and maybe assist/take over.
http://www.cfsdiscovery.com.au/
I’ve just received an email from the CFS Discovery Clinic in Melbourne advising that Dr Lewis is retiring and the clinic is closing.
It looks like that was in January. Now they are closing.This is exciting! I will ask my local town GPs if they are interested.
Just realising that I don't have copies of all my test results. I've been using that clinic as a sort of external hard drive. I need to find a way to get my results before they all disappear forever.
Not only is this true for lots of patients but Lewis' archives (suitably de-identified) are also probably a valuable research resource. There's a risk the community could lose a lot more here than just a doctor.
Dang, there really isn't any alternative to CFS Discovery around here, is there? If there was he'd be pointing patients in that direction, not handing out instructions for their GPs to continue treatment with no specialist help.
No, sadly not.
Before I knew of CFS Discovery, I tried the CFS whatever-it-calls-itself at the Royal Talbot, and that was beyond useless. If I hadn't already been reading up here at PR about GET and CBT, the GET treatments they were lining me up for (without my consent, as well!) would've definitely worsened me.
Dr Cabena (who used to practice at CFS Discovery) has moved to NIIM in Hawthorn, but from what I gather from other patients' anecdotes here and via Twitter, Dr Cabena doesn't seem to keep up with ME/CFS research and focusses on more natural treatments (eg. recommends juices, doesn't like to prescribe antibiotics for SIBO).
And I, personally, would not want to keep with the GP that I was seeing at CFS Discovery either. He behaved inappropriately with me at one point, and just seemed to be kinda... lazy? extremely laid back? in his side of the work in assessing and reviewing me/my symptoms.
Thanks for the suggestion, @Mel9 !
Has anyone had any luck getting through to CFS Discovery about obtaining their own medical records? I haven’t been able to get through via phone or email. Concerned that all my testing etc will disappear.
And I, personally, would not want to keep with the GP that I was seeing at CFS Discovery either. He behaved inappropriately with me at one point, and just seemed to be kinda... lazy? extremely laid back? in his side of the work in assessing and reviewing me/my symptoms.