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!
Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
Discuss the article on the Forums.

For Aussies

Discussion in 'Action Alerts and Advocacy' started by Sean, Mar 31, 2011.

  1. Sean

    Sean Senior Member

    Messages:
    1,177
    Likes:
    1,829
    [Not sure if this is the right place on the forum. Mods feel free to move it if needed.]


    This post gives me no joy at all. But it is the reality we Australians have to deal with.


    We may be about to get a UK style approach to our medical and financial problems.

    http://www.theage.com.au/national/abbott-to-get-tough-on-welfare-20110330-1cgf9.html

    I wish I could say this is just the usual hot air from nasty conservative bullies shooting their self-righteous, ideological mouths off from the safety of opposition, free from having to take responsibility for the actual consequences of their policies. But 1) Abbott has serious form, he really is this nasty and would do it in a heartbeat if he got the votes, and 2) the current Labor government seems to be moving in that direction as well, though not as far or fast.

    (It is actually unlikely that Abbott will ever be our dear leader. But not impossible, and his ideas will live on in some minds.)

    I suspect that there has been some serious work going on behind the scenes to get these kind of changes introduced, lot of talk between various people in Oz and the UK, at various levels of power. Us Aussie members better start sharpening our arguments for the local political debate, coz I think it is coming and is not currently moving in our favour. And I have no doubt that ME/CFS patients are exactly the kind of disability support recipients who will be targeted, using the full range of bogus justifications, dirty smears, and straight bullying.

    :worried: :worried: :worried:
  2. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Thanks for posting this, I think you are right. Even more reason in my mind why people should be pushing for recognition of ME -recognized in the literature as condition that people do not recover from.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,147
    Likes:
    4,400
    australia (brisbane)
    I think we need to as a group of aussie cfsers start to pressure the govt for better testing, more research and more meds covered by PBS prescription medical scheme for thinks like antivirals and meds like lyrica which are extremely expensive for those who cant work and hard for people who can work to afford. Hopefully the bond uni study on cfs will be out by the end of the year, the study finishes in june/july and they are finding alot of immune abnormalities, this study has been funded by alot of money, the biggest in the southern hemisphere, hopefully it encourages more research. Gee we have some of the best scientists in the world, i cant remember which one but alter or lo is an aussie, all our best scientist get exported over seas, we need to keep them here for cfs research projects. all this may start to change the way doctors treat us. At the moment the only cfs gurus gp's are numbered at 2 from popularity of cfs patients ie dr lewis in melbourne and dr deed in brisbane but there hands are tied by political red tape. Im sure there are other good docs out there but these 2 seem to be at it the longest.

    cheers!!!
  4. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    He says...

    "Mr Abbott says that with only just over 1 per cent of disability pensioners moving back into the workforce each year and nearly 60 per cent of recipients having potentially treatable mental health or muscular-skeletal conditions, it is time for reform."

    I think he is talking about anxiety, depression, personality disorders, knee problems and back problems. There are truckloads of people on the dsp with back problems that still allow them to work, just not in heavy lifting jobs. But they don't. The same with depression/anxiety it can usually be treated with meds.

    The government would be opening themselves up to a massive lawsuit if they forced people with me/cfs into work. People would die.

    There are members of parliament who are aware that this is a real serious illness, through experiencing loved ones having the illness.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,147
    Likes:
    4,400
    australia (brisbane)
    could be an opening for us to get retro drugs approved if he wants cfsers to keep working, mmm

    I just sent an email of to WPI saying theres a study of cfsers australia where there are about 170 people in it and there would be a good opportunity while we are all together to test us all for retroviruses and most of us are showing immune abnormalities. Lets see if i hear back from them.

    cheers!!!
  6. ixchelkali

    ixchelkali Senior Member

    Messages:
    1,105
    Likes:
    264
    Long Beach, CA
    Okay, I know this thread is for Aussies and I'm not an Aussie (except by marriage). But I do think that what happens to patients in Australia affects all of us. We're all in this together, otherwise they'll just pick us off, one country at a time...starting with the UK.
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,147
    Likes:
    4,400
    australia (brisbane)
    i agree!!!
  8. WillowJ

    WillowJ Senior Member

    Messages:
    2,935
    Likes:
    2,366
    WA, USA
    I agree also!

    I think it works the other way, as well. If we can get formal recognition as a real disease in another country (USA, Australia, Canada), we can push the dominoes the other direction.

    We're all in this together either way. All of us in all countries.
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,147
    Likes:
    4,400
    australia (brisbane)
    i think the USA with WPI is our best chance, then maybe montoya doing his infections studies and hopefully dr lerner pumps something out to back them up. KDM is also a chance.
    Im sending small amounts of money WPI's way, hopefully more aussies start doing the same as well as other countries and it gives them and cfs a big push. Imagine $10 from every cfs sufferer, thats alot of dough.

    cheers!!!
  10. Sean

    Sean Senior Member

    Messages:
    1,177
    Likes:
    1,829
    Tuliip, mental health and/or muscular-skeletal conditions are exactly where we ME/CFS patients will be categorised.

    You also have a far too generous a view of Abbott. He is playing classic, gutter level, divide and conquer tactics with some of the most vulnerable people in our society. What he is saying to disability pensioners is offer up some sacrificial lambs, some easy targets, and I will leave the rest of you alone. But I do not believe for a second it is a genuine offer and that he will stop there. He has always been a notorious welfare basher, claiming that many recipients are basically bludgers and malingerers, and has generally stigmatised it as much and often as he can. He has a burning ideological desire to eliminate public welfare completely. This is just the first step for him, thinly disguised as trying to help the genuinely needy. He has admitted that he sometimes tells straight lies during political debate, when it suits him. Don't trust the slippery **** as far as you can throw him on your sickest days.

    I also seriously doubt that mental disorders and back problems are anywhere near as treatable as some would like us to think.

    Extremely dangerous and nasty stuff, that patients everywhere should be very concerned about.
  11. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Agree that we are all in this together. Australia is essentially still tied to the apron strings of the mother land - its pathetic. The association between some of the CFS ''experts'' here in Australia with the Wesley school is very thinly veiled. I once remember reading a press release put out by the Wesley School and it was reiterated verbatum within the same 24 hr period by those here in Australia.

    We seem to simply ''adopt'' what the UK imposes and of course, we look also to that center of excellence - the CDC.

    I agree with your last post Sean. He is targeting the most vulnerable. The soft and easy targets. Why? Because he is not a visionary. He is not inclusive. He lacks good leadership qualities. I wouldnt get too worried though, he seems to change his mind more often than the weather. Which suggests to me - that with some opposition from the ME and CFS community in Australia, as well as other vested interest groups, he might back away from making these dangerous and generalised distinctions as to who is worthy and who is not, for disability support.

    ISO
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,147
    Likes:
    4,400
    australia (brisbane)
    hi,
    I just emailed an australian lab that says they test alot of viral/hiv type work. I asked if they tested for xmrv/mlv's or did l-RNase testing or maybe in the future or recommend a lab in australia that may do this. The reply was expected and they definately sitting on the fence. I did mention to them that i had chronic lymphocytosis and neutropenia as well as in a cfs study where they have shown that I and others have poor nk function which arent really diagnosis as such but blood chemistry abnormalities.

    As you probably know, the association between XMRV and chronic fatigue syndrome is currently very controversial. Many researchers publishing in reputable journals do not believe there is an association, while others are of the opinion that XMRV may be present as a result of chronic fatigue syndrome rather than the cause. Consequently, there are no laboratories in Australia offering this service (and certainly not MLV or L-RNase testing). There are however, some clinicians who are prepared to refer samples overseas for testing. You can get more information from:-

    So i think its going to be awhile before anything outside research happens in retroviral testing in aus. WPI did reply to me as well recommending Red Labs and sent forward info to their research team on the cfs study i and approx 170 cfsers are in, as i thought while bond uni have this many cfsers it would be a good chance to test us all. SO they now have details of the people running the study. Lets see what happens.

    cheers!!!
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,147
    Likes:
    4,400
    australia (brisbane)
    As for redlabs testing, wow its expensive and although i wouldnt live anywhere else but the land down under, it makes it difficult and expensive to send blood to belgium, more then the testing itself. In the end if i tested positive, i probably wouldnt be able to afford retro drugs and they definately wouldnt be covered by the PBS scheme. Although if we can get a group of people to test at the same time we can share courier costs making it abit more affordable.

    cheers!!!
  14. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Hi heapsreal

    Interesting stuff on XMRV - thanks for sharing that.

    I think I read on a thread here somewhere, that testing on X is improving all the time and they expect better and more affordable tests soon. I personally think that things will look a lot different in the next 6 months.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,147
    Likes:
    4,400
    australia (brisbane)
    this is my reply to the Lab i was in touch with, hopefully its short and to the point.

    Thanks for the speedy reply.



    For the sake of interest, there is a book called Olsers web which outlines the history of cfs from the 1980s and how the health system have put their heads in the sand over this illness and spent next to nothing on researching it other then psychological causes, as this is where they are trying to push it to save insurance cost and disability payments etc. Many private organisation have funded research showing many immune abnormalities which have been ignored by the government for years. EBV has been implicated in cfs but was found not to be the cause, but the original researchers/doctors never said it was but did say that if ebv reactivated in some cfs people then there must be some underlying condition as healthy immune system hold back these infections and only reactivate in patients with HIV, cancer etc. Cancer rates are also shown to be much higher in cfs then the general population as well, but as they have now classified cfs as a disease of exclusion, when they get cancer they are then out of the cfs diagnoses. This seems wrong as they are now not searching for possible causes of cancer which is probably cfs. Also immune testing is held back from anyone with a label of cfs as they say its a waste of money, so they are really putting cfs patients in a hole where it will never get investigated other then private research. Medical journals because of the cfs stigma are reluctant to show any cfs research that implicates infectious causes unless its negative or belongs to the psychobabblers group. Then they wonder why cfs people are depressed, they are treated like crap, plus anyone with a chronic illness shows signs of depression.



    I would just like to point out that this isnt a personal attack on you guys, but an explanation of what cfs is and what we go through and hopefully continue to respect cfs people they way you have replied to my email. I know this email wont change much but if i can make some people have an open mind to cfs then theres a chance that this illness can be treated properly and we are not looked at like a bunch of malingerers. Diseases like MS and a few other neuro-immune diseases were once treated like cfs until technology caught up. I think this technology is getting close, but open minds are needed by the medical profession. I have no hesitation of you sending this onto your other workers, all i ask is to keep my name private as its common practise to be discriminated against for having cfs and something i dont tell many people because of this.



    Thanks for reading my winge,

    A man with cfs for 9 years struggling to support his family,

    cheers!!!
  16. merylg

    merylg Senior Member

    Messages:
    764
    Likes:
    492
    Sydney, NSW, Australia
    Subsidy for test denied

    Today I was denied a subsidy for my bone densitometry screen b/c I didn't fit their narrow criteria for a repeat test within 2 years. If I waited til June I would have probably got the subsidy.
    I am sick now! I have active flare of autoimmune/inflammatory axial Psoriatic Arthritis attacking my scoliotic Thoracic Spine, rapidly giving me a deforming Kyphosis (hump), CFS/FM and MCS, major depression.....me in this condition and people with Rheumatoid Arthritis are excuded from any subsidy if a test was done less tahn 2 years prior :headache:
  17. currer

    currer Senior Member

    Messages:
    1,324
    Likes:
    773
    Hi,
    I'm not an aussie but the most enlightening thing I have learnt since joining this forum is how uniform the approach of all the developed coutries is to social, medical and financial problems. Thare is no "alternative" to vote for. All the policies are the same and the governmental leaders follow each other, then present these policies to the electorate as their own, They are not.
    Governments now listen only to each other and focus on hoodwinking the electorate into thinking that there is some independant political thought going on at a national level. How can you have a democracy when there is no political alternative to vote for?
  18. Tulip

    Tulip Guest

    Messages:
    437
    Likes:
    7
    Sean

    I don't trust the man nor do I think he is a good leader. He is a joke to the media and the general public!. Did anyone see him on the news/7pm project trying to show people (at a factory) that anyone can do an unskilled job? - after being shown how to pack a box and close it, he then tried it by himself and stuffed up LMAO. He always shoots himself in the foot with these "ideas" and the media always goes to town on it.

    I wouldn't get too worried yet..
  19. insearchof

    insearchof Senior Member

    Messages:
    598
    Likes:
    3
    Agree with that Tulilp

    I think you have made an interesting point there Curer.
  20. Sean

    Sean Senior Member

    Messages:
    1,177
    Likes:
    1,829
    I do hope you are right.

    He makes me very nervous. :(

See more popular forum discussions.

Share This Page