The power and pitfalls of omics part 2: epigenomics, transcriptomics and ME/CFS
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith's smart ideas for understanding diseases, which may soon be applied to ME/CFS.
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Aussie cfs doctor interview

Discussion in 'General ME/CFS News' started by heapsreal, May 21, 2012.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Post this link to an interview with Dr Gary Deed who treats many cfs/me patients here in Brisbane, Australia. Plus he's my doctor too, thank god. He is one of the good guys and is very compassionate with us cfs patients and the way he talks in the interview is how he is in real life. He is very different to most of the other doctors i had seen previously. Plus he is what i call sneaky smart, he doesnt come out as being a smart arse and knows more then everyone, but you ask him an obscure question that most gp's wouldnt have a clue about and he will give you a good answer and he is also not afraid to say he doesnt know something like a few docs i have run into.
    http://blogs.abc.net.au/queensland/...e-syndrome-whats-it-like-to-live-with-it.html

    cheers!! Dr D
     
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  2. Gary1001

    Gary1001

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    nice one
     
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  3. jeffrez

    jeffrez Senior Member

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    Very excellent, TY. I tweeted the link, cheers.
     
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  4. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Looking forward to my first appt with him in 2 wks time.:thumbsup:
     
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  5. taniaaust1

    taniaaust1

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    my boyfriend finally downloaded it so I could listen to it :) . Excellent interview. :)
     
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  6. alex3619

    alex3619 Senior Member

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    Hi RustyJ, there is a small chance I might see you there then, depending on the day and time. :) I hope he can help you. Bye, Alex
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Ditto.
    Wouldnt it be funny if we all rocked up the same time like in a big bus like in the MASH series. We triage the patients for Gary, 'ok we have 2 cfs patients with severe insomnia, need stilnox stat'! 4 patient here with orthostatic intolernce- beta blockers iv fluids stat, struth we have another 4 patient with reactivated ebv- iv valtrex stat! give all patients antioxidants, immunovir and ampligen STAT!! he he he

    Alex it would be funnier if more then just you and me one after the other asked him if there was a cure like we normally do, lol.

    cheers!!!
     
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  8. jeffrez

    jeffrez Senior Member

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    Seems like the Aussie docs are in general more open to ME/CFS than the US docs. Or is that a mistaken impression?
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Our doc is a rare find, but he also has his hands tied as in how he can treat people eg antivirals are not covered by the health system here so full price is paid and if on a disability pension then its not affordable, the list go's on.It seems to us that if u find the right cfs doc in the US then u have all the 'sexy' treatments available like ampligen, valcyte etc.

    Dr Deed is very compassionate doc which is rare and he can help many cfs patients manage their symptoms etc and if u have the extra $$ he is open to some of the 'sexy' cfs treatments, he keeps quite up to date of the ongoings in the cfs world.
     
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  10. jeffrez

    jeffrez Senior Member

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    I see, that sounds like a good find, indeed. What part of the country is he in?
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    brisbane. For those who live a long distance, after an initial face to face contact he then does phone consults too, which is great for some cfsers.
     
  12. CJB

    CJB Senior Member

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    It's the same here, heaps. If you're fortunate to have good insurance and the resources to travel, you can get some of the 'sexy" treatments, but otherwise, not. If you're disabled and on the government health insurance plans, many doctors just refuse to see you because their reimbursement is so low. And I think some of the doctors who are prescribing some of the cutting edge treatments are so booked you have to wait quite awhile to get in. If you are uninsured, you're just screwed.

    That's why it is so valuable to hear everyone's stories here. We get the advantage of hearing which treatments are having some effect and where to go if we win the lottery.
     
  13. Navid

    Navid Senior Member

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    dr. deeds is AWESOME......thanks for sharing the story. this dr. needs to get global recognition and be heard by more of the world. he has hit the nail right on the head. you aussies who get to see him are certainly very lucky.

    is he working with the BOND team at all; combine his clinical knowledge with their research and we might just get some real answers/treatments!!!!!!

    tell dr. deeds we appreciate him!!!
     
  14. floydguy

    floydguy Senior Member

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    Yes, I agree. Unless you have a very good insurance plan you won't get the "sexy" treatments. If I tried to take Valcyte, Ampligen, etc. my insurance company would just laugh at me.
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Dr Deed is in contact with Bond, i dont really know anymore then that. I know they were interested in him as he is one of the main cfs docs in australia with dr lewis in Melbourne. He has been invited to a few 'things' of theirs, I suppose alot of the patients in the bond study were probably his patients. Dr Deed did cfs researchin the 1990's i think, it could have had to do with Newcastle uni which i think did alot of stuff on muscle metabolism etc etc. So he has been in the field quite awhile.
     
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  16. taniaaust1

    taniaaust1

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    Very mistaken... that doctor is probably the best or one of the best in Australia ... most doctors here are terrible for ME/CFS and it isnt uncommon for those with ME/CFS to go undiagnosed even those who are bad enough to end up on a disablity pension (which can happen even without a diagnoses)
    ....
    Im in a different state to Dr Deed so havent seen him but to see a CFS doctor here (not a ME doctor) .. I had to wait for 3 years to get in and was lucky to do so even then, as there wasnt a waiting list I could get on.
     
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  17. alex3619

    alex3619 Senior Member

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    Dr Deed received a lot of his experience from an old ME doctor, Dr. John Whiting, who was using B vitamin therapy in the 1990s! For a time Dr Whiting shared a practice with Dr Deed. Add decades of clinical experience, plus an interest in autism (not just CFS or ME) and its a recipe that is a good one for us. His hands are indeed tied by the regulations - there is a long history of CFS docs being prosecuted for non-standard treatment, regardless of success. It happened to another of my former docs, Dr. Andriya Martinovic. Bye, Alex
     
  18. mrmichaelfreedmen

    mrmichaelfreedmen

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    Is this the same Dr Garry Deed who has been known to malinger his patients to other doctors in the local area? Keep hearing this name associated with negatively the last couple of years - I know for a fact that the Australian Government keeps a close eye on this practitioner.

    Edit: It is indeed (no pun intended) him. Have never seen him but would avoid.
     
    Last edited: Apr 9, 2017

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