1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
Discuss the article on the Forums.

To the Aussies

Discussion in 'General ME/CFS News' started by taniaaust1, Aug 13, 2010.

  1. taniaaust1

    taniaaust1

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    sorry if anyone tried to message me but couldnt.. my message box got full, ive been getting quite a big flow of messages coming and going (up to 20 per day) .. so keep getting caught up with full message box. anyway.. there is room there now.
    ................

    Also XMRV Global Action posted about our Advocacy page http://www.facebook.com/notes/xmrv-global-action/australian-advocacy-contact-list/430924761796 , so maybe we could get lucky and get some others joining in to help us get the "Aussie wiki book" done.
     
  2. susan

    susan Senior Member

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    I cant say much as I am too sick. Found a Dr here on the Gold Coast David Patterson.....now a naturopath after 35 yrs of doing drug type medicine. He has been doing the Methylation protocol....no Medicare but only $50 a visit......dont have to see him, as he does Ph consults and writes you a very big report with results of Metametrix US tests, emails them to you.......not out for money in any way. I was going great guns with him till I took a drug and stuffed my liver. My friend is just fantastic. Another is just out of bed after yrs. Does the b12 thing plus its co factors. When I went he said why did it take me so long to find him. He has cancer but still treating while doing his own therapy.....chemo. Paradise Pt 07 55 775690 He makes his own compounds up....my friend was deficient in 33 nutrietnts, but me about 7. The urine test alone telld him most of what he wants to know, but I did all 3 and am glad. Everyone who goes is impressed with him ...... has been treating Autism/ CFS for 15 yrs....knows all about the gut too.
     
  3. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Not happy with the election result. Labor promised to raised the amount of money pensioners could earn before it cut into the pension. That's gone. Libs said they will re-review every disability pensioner, obviously with the intent of tightening up. I don't know if I could go through another review again.
     
  4. Victoria

    Victoria Senior Member

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    RustyJ, I've only been through the application/interview process for the disability pension once (in Feb this year & I have to say it was really exhausting & nerve wracking).

    Who ever gets into power, I hope they get some sort of order in Centrelink. I got fed up filling out the same forms for the same information over & over again. I felt like swearing at them in the end.

    If you weren't having serious cognitive probs. before applying for the disability pension, the Centrelink process is enough to make some people have a breakdown (and develop cognitive problems).

    Looks like the election will be one of the closest in our history, going by the tv commentary tonight.
     
  5. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Victoria, I can commiserate. I've been through it a couple of times. Really stressful. Truthfully, I can't see how Labor can get in. Abbott said he would really tighten up disability - typical, going after the weakest.

    Sorry about hijacking the thread.
     
  6. alex3619

    alex3619 Senior Member

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    Hi, I had regular reviews of my pension under Howard, every few years. It didn't happen under Rudd. We can expect more of the same, more money wasted for reviews that can't ever achieve anything useful, only harm us and Australia, if the Abbot Family wins. This time, should it be necessary, this should become one of our political targets. If they want proper reviews they can shove money ($$$$$) into research that will give them decent technology so they can do proper blood tests and assess us that way - and sent the phiebotomist around to us to be tested - anything else it torturing the disabled, similar to what the Nazis did in pre-War Germany.

    Bye
    Alex

    PS I think we should consider starting to use something like "cruel and unusal punishment of the severely sick" every time we talk about these issues.
     
  7. Makes me glad I'm a "grandfathered" client under the old 30hr PW rules, they haven't touched me since my initial assessment in April 2005. I'd actually asked about assistance with training & was advised by the lady at Centrelink's disability & carers line to do it myself & not involve them as they'd use it as an opportunity to reassess me under the 15hr rules & kick me off.

    I have a little hope the regional independants will like the ALP's NBN & GP Super Clinics ideas, Katter particually had a big anti-Liberal rant on election night about how they were neglected for 11 years & he had farmers committing suicide in his electorate.

    If Abbott gets control it makes me want to move to another country but honestly being poor there isn't a good option for a ME/CFS patient is there? USA would be ok if you were independantly wealthy, UK mistreats people, NZ neglects them, makes us being ignored seem pretty damn good.
     
  8. alex3619

    alex3619 Senior Member

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    Hi Ash,

    There is one hope for us in this scenario - the Greens. They will have control of the senate. I know someone in disability rehabilitation and someone else who is an advocate on these issues, and so I have heard many stories. Once you get reassessed (as part of rehab/training, not routine reassessment), the grandfather clause is gone, and the new rules are harsher. You will however be reassessed regularly (every two to five years) under a coalition government, just not under exactly the same rules. Expect it. Discuss it with your GP. It worries me a lot that I can no longer see a knowledgeable GP - how can I get reassessed when most doctors don't know any of the hard research published after 1988? Many local doctors don't even believe in CFS.

    Bye
    Alex
     
  9. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    This probably isn't what most of you would like to hear. My treatment specialist is a psychiatrist. It was easier to bypass the CFS diagnosis and cop a psychiatric label. At this stage of the game I don't care what they write on their forms as long as I am accepted for disability.
     
  10. gregf

    gregf Senior Member

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    My prediction at midnight on election night, is Abbott will form a minority government with support of the independents who are former Nationals. There is no way some one like Bob Catta is going to put Labour into government.

    However there may be another election in less than a year perhaps in as little as nine months.

    The Green senators elected yesterday do not sit in parliament until July 2011. So the conservatives will have workable control of the senate until then. In July 2011, the Greens control the senate and will demand an ETS or carbon tax. The Liberals will totally oppose that and do anything to stop it.

    The second reason is Labour is unpopular in NSW so the federal Liberal party will want to benefit from that before the state election in NSW mid next year.

    So, I think another Federal election May or June next year is possible and Labour could win that if they become more disciplined.
     
  11. alex3619

    alex3619 Senior Member

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    Hi RustyJ, I have been twice looked at by psychiatrists, and one psychologist. Its part of what you have to go through to get disability. Even if you get a disability pension, eventually one of the reviews will be by a psychiatrist or psychologist. I'm not happy about this, but it is a pragmatic necessity. Bye, Alex

     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Hi Alex. What I meant to say is that I see my psychiatrist for ongoing treatment, not just for review. I rarely see a doctor. If I do I try not to mention CFS related symptoms. Let me add, my psychiatrist is adamant that my condition is biological in origin, but, as you know, there are certain psychiatric elements that develop over time.
     
  13. alex3619

    alex3619 Senior Member

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    Hi RustyJ, the second worst thing about the psychobabblers is that they give psychiatry and psychology a bad name and discourage patients from seeking help. If more of the psychological research on CFS were aimed at helping us to cope using workable methods, and not about unproven theoretical cures by changing attitudes, we would have a readily available additional arm of medicine for treatment. I am not against psychiatrists or psychologists, only the bad unproven theories that some practice.

    A better study on cognitive problems in brain fog for example, could lead to teachable stategies that improve function under severe brain fog, and there are many more possibilities worthy of research.

    Bye, Alex



     
  14. Victoria

    Victoria Senior Member

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    That's interesting, Alex.

    I saw a psychiatrist when I had a work breakdown in 1998 (mandatory by Workcare) & twice around 2006 (because my Dr thought I was getting depressed at the constant pain & ill health).

    2nd Psych. a few years ago, thought I was not depressed, just very, very angry.
    (mind you, that was in the days when no one believed me - except my GP - I was very angry for at least 15 years LOL).

    I certainly never saw a psych. when I was assessed for the Disability Pension in Feb. this year.

    My Dr put FM as my primary reason for quitting work & applying for Disability, but in actual fact I had several other conditions which made work impossible. I had about 16 years worth of chiro, physio, acupuncture, xrays, U/S, MRI's, stress echos, heart tests & so on......(apart from having chiropractic for back, hip, shoulder, neck & headache pain since 1980). I am on BP, heart & pain meds to this day.

    Although stopping work has reduced the pain meds dramatically. Lumbar spine, pelvic, gallbladder & several other surgeries also contributed to the medical background. And my severe myopia & decreasing hearing in my left ear doesn't help do alot of phone, accounts & computer work any more.

    After 6 months, since finishing work, I still get severe headaches & eye pain starts if I overdo the computer time at home (one of the reasons I rarely post/blog on PR now).

    No one could claim I didn't have a very, very good case (aside from FM & now, possibly CFS as well).

    I had to have a job capacity assessment by an outside company also (not Centrelink).

    Perhaps there was no doubt as to the validity of my claim, hence no psych. at that time (of my applic.).

    If they had contacted my employer (illegal I think), that would have again beeen presented with all my sick days & part sick days over the last 10-12 years (as well as several episodes necessitating a colleague taking me to the emergency during the work day).

    Not sure when/if another assessment would be made in the future. Didn't ask at the time of application 'cause I was too exhausted & in too much pain to do much.

    I am much improved (due to rest & pacing), but am going through a bad phase of MCS at the moment.

    Do you know what the usual procedure is for psych or centrelink re-assessment is? Is it every couple of years (or what)? Or is it based on the individual circumstances?

    I know this pension is only, if you can't do more that 16 hours work in the next 2 years (otherwise one would be on sickness benefits, or the "dole").
     
  15. alex3619

    alex3619 Senior Member

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    Hi Victoria. In thirteen years I have only had one psych as part of a centrelink reassessment. It happens, but not every time. I have had two regular GP reassessments as well. All these were under the Howard government. I had two psych assessments as part of my original diagnosis. This was 1989, and very very few doctors had even heard of CFS (or ME for that matter) and one of the few doctors who knew anything about it in Brisbane was a psychiatrist. If you haven't had a psych assessment, and you are on a pension, then at some point (at least under a coalition govt) I think you will have one. Mind you, my psych review several years ago was the easiest review I had, the doctors who don't believe in CFS are much harder to convince even if you are almost totally out of it at the time of the interview. Bye, Alex
     
  16. Victoria

    Victoria Senior Member

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    Thanks for the info, Alex.

    (I probably shouldn't say this. But I think Psychiatrists are a big joke. I even used to work for one very briefly - about 4 months). And Psychologists, well, two of my good friends are psychologists - one exceptionally good with great compassion & "bedside manner", and the other one reads too much into a simple sentence, or a yes/no answer).

    I studied a unit of psychology at Tertiary level & some of it was very funny (& interesting at the same time).

    I have a wonderful, kind & caring, compassionate GP who I see regularly. When you find a good GP, hang on to him/her & never let them go :Retro smile:. The really good ones are a rare breed.

    PS When the 1st psychiatrist saw me (for several sessions), I had this insane desire to laugh - she was very, very amusing (to me). Thank goodness I resisted that desire, otherwise she might have written me off as a nut case.
     
  17. alex3619

    alex3619 Senior Member

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    Hi Victoria, no sorry I don't, I am only guessing as to reasons. It does seem to be linked to political moves to get rid of pension "cheats". Bye, Alex

     
  18. taniaaust1

    taniaaust1

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    Any Aussies about?? Alex.. i saw you recently posted. I suggest to phone to news stations about the American Government telebriefing on the XMRV and CFS http://www.nih.gov/news/health/aug2010/cc-23.htm

    i've so far phoned the channel 10 reporter and he was interested.. and got me to email him info. to contact channel ten http://www.whitepages.com.au/wp/busSearch.do?subscriberName=channel 10&location=
    This deserves to be BiG news.. so please think about ringing the tv reporters or emailing them.
     
  19. alex3619

    alex3619 Senior Member

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    media contacted

    Hi

    I have just sent a flurry of emails to early morning news shows, TV news and newspapers regarding the pending news release from the NIH, the Alter paper:

    http://www.nih.gov/news/health/aug2010/cc-23.htm

    Please continue to spread the word, I am starting to burnout.

    bye
    Alex
     
  20. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Alex and Tania, did you both pull all-nighters?
     

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