CFS Discovery Clinic

Messages
1,383
Likes
6,900
I just got that too. I hope Dr Lewis is okay. He is very dedicated and he must be quite unwell to cancel all his appointments.

I was planning to go out there and see if I could get a referral to a blood pressure doc. Now my plans are in disarray. This is terrible news for the community. I know he has worked hard to recruit and train offsiders and I always thought they'd carry the baton when he inevitably retired.
 
Messages
501
Likes
1,270
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/
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.
 

Mel9

Senior Member
Messages
995
Likes
2,855
Location
NSW Australia
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/

This is exciting! I will ask my local town GPs if they are interested.
 
Messages
1,383
Likes
6,900
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.
 

lafarfelue

Senior Member
Messages
433
Likes
1,211
Location
Australia
Wow, I couldn’t get to my emails til just now and ... WOW. My heart sank. I’m so sad that no one’s been the right fit or keen to collaborate or take over. I also really hope Dr Lewis is ok.

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.
Me too. I hope they’ll be able to fulfill all the requests that will no doubt be flooding in.

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.
Wouldn’t an Australian biobank just be ideal right now :(

Geez. We need Australia to roll out updated practitioner training like what’s happening in some places overseas. I wish I could do more. I wouldn’t even really know where to start though! This is so rough. :cry:
 
Messages
10
Likes
28
It was such a punch in the gut when I got the email : ( I was seeing a different doctor to Dr. Lewis, so I asked today if they were going to continue in some capacity such as at another clinic, but no luck apparently. Looks like I'm just going to have to start again somewhere else.

I understand the suddenness of the news. If Dr. Lewis was trying to sell the clinic, then any hint of him retiring soon could have driven patients away from the clinic and made it less attractive to potential buyers. Doesn't soften the blow any though.
 

lafarfelue

Senior Member
Messages
433
Likes
1,211
Location
Australia
I just received an email from the clinic that Dr Lewis wrote for his patients to pass on to GPs to help with continuing treatment.

It’s so thoughtful. I was starting to worry about how to explain all my meds and supplements to my GP (who first suggested that I might have ME/CFS, so I trust them already). I hope it does the trick.

I started to tear up while reading it though. :( I really do hope Dr Lewis will be ok. And that the clinic’s wonderful nurse will find or has found somewhere that deserves her!
 
Messages
10
Likes
28
@lafarfelue Thank you so much for posting this - it had gone to my junk mail folder for some reason and I'd missed it. 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.
 

lafarfelue

Senior Member
Messages
433
Likes
1,211
Location
Australia
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.
 

Mel9

Senior Member
Messages
995
Likes
2,855
Location
NSW Australia
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.

The Grove Health Pymble centre in Sydney is excellent. Once you have visited a few times they do Skype consultations.

But nothing at all in Victoria now? Unbelievable.
 

lafarfelue

Senior Member
Messages
433
Likes
1,211
Location
Australia
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.
 
Messages
1,383
Likes
6,900
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.
Edwina (the nurse there) said that if I go in with a USB stick they should be able to give me my records. She said just to let them know in advance. Planning to do so next week.

However what is promised and what is achievable might be very different in the chaos of the place closing! She sent that email on April 12 and then apparenty went on several months leave on April 25. It's not even clear if anyone will be behind the counter.
 
Messages
1,383
Likes
6,900
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.
Is that AMcD? He certainly didn't seem like the sharpest unit I ever met, either. Lewis obviously had great difficulty recruiting good staff. Probably due to the limited opening hours, the marginalised nature of the disease, and the curious status of the clinic as neither quite GP nor quite specialist.

Someone made a point the other day that a whole generation of doctors was lost to ME/CFS. Lewis's generation is retiring, there's a 40 year gap ,and we now probably need a young doctor to blaze onto the scene.

Certainly, if the amount of money I paid at Donvale is anything to go by, there's a market opportunity there!!