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Aussie Advocacy

Discussion in 'Action Alerts and Advocacy' started by heapsreal, Apr 7, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    After talking to another aussie friend, we think its time we make abit of noise. After some suggestions, addresses to annoy politicians etc. We need more government money into cfs research and for the general public to know what cfs is about and what its not. We wont mention fatigue but mention infections, immune dysfunction with the recent australian research showing natural killer cell dysfunction in cfs patients. The cost to the community etc

    Cort, theres plenty of us aussies here, could we have our own forum?? To start local things moving.

    cheers!!!
  2. TinyT

    TinyT Senior Member

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    Great idea heapsreal.

    Do you mean like a sub-section of the forum? Would a thread/topic not work as well? Just wondering.

    I was thinking that something like a letter/email campaign (like the ones that were done in the US) may be good. Easier for those who are less able to write a letter of their own- just cut/paste and address it to the relevant politicians, health ministers etc. I'm not able to do it by myself, but would be happy to help out in some way. We could also compile a list of politicians, local MPs, Health politicians etc.

    Especially seeing as the govt is going to cut medical research funding.

    I know there is a petition out there to send to parliament for XMRV funding/testing in Australia, but its a paper one (have to print out, get signatures etc). I'll try to find the link. I think just the printing out & getting signatures may be beyond a lot of ME/CFS people.

    Here it is: http://findacureclub.weebly.com/download-your-petition-pages.html

    Here is a link to some politicians to contact re- cutting medical research funding http://www.discoveriesneeddollars.org/get_involved
    There are quite a few email addresses too if you click on the links.
  3. TinyT

    TinyT Senior Member

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  4. Tulip

    Tulip Guest

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    Yes I agree, the time has come. Absolutely agree with not saying anything about fatigue to, and we should focus more on the ME part I think.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    TinyT http://www.translational-medicine.com/content/pdf/1479-5876-8-1.pdf thats the initail study that got them more money do do a much larger study, i think there is 170 cfsers plus healthy controls. The study is sponsored by the Queensland smart state grant, if my memory serves me correctly and the larger study is showing similar nk abnormalities.

    I think maybe a copy of this study showing some good work aussie scientists can do, as well as some xmrv/mlv studies showing the seriesness of cfs. Hopefully others have some good contact details to the right politicians and then we hammer them with a letter from each of us everyday for a week. just an idea. I think i prefer a letter campaign then an email campaign as seeing all the mail would be worth its weight in gold and other co-workers will be asking them questions about their mail , where emails are easily deleted and hidden.

    more ideas?? we're getting there.

    cheers!!!
  6. TinyT

    TinyT Senior Member

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    I think letters is good but think of the costs involved, emails are free.

    Also I personally don't have a printer at home, don't have the stamina to handwrite letters and don't get to a post office very often.

    Perhaps we should offer both options
  7. alex3619

    alex3619 Senior Member

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  8. Sean

    Sean Senior Member

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    I do not support funding for (non-research) testing. XMRV has not been proved yet, and we do not have an accepted reliable test.

    I do support funding for more research into XMRV.
  9. insearchof

    insearchof Senior Member

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    Hi Heaps

    Thanks for starting this thread.

    We have about a month - so its not a lot of time to get things underway.

    Are people on board in terms of using XMRV as a focus for raising awareness?

    If yes - is that the main objective - to inform Australia about XMRV and then in the process CFS and destroy the notion that CFS is ME and that it can overcome with GET?

    Should that be the focus of our energies at this stage?

    If so - then lets brain storm on how we can get the message out.

    Should we focus on one or two little things ie: adds like those run in the US by MCWPA ? in newspapers and channel energy on how to raise funds for such?

    and or marry it up with another small easy to do strategy ie: send a post hundreds of post cards with a slogan on them- to targeted persons in parliament and in the media? With a letter/email campaign.

    Thoughts?

    ISO
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think we need to tell people its an immune dysfunction probably caused by an immune dysfunction from an infection viral/retroviral and fatigue is but one symptom but there are many like PEM and many neurological symptoms not psycological sypmtoms, but they can be present also. we have to explain to long term prognosis of cancer, the cost to society, the discrimination, the poor treatment and quote the good aussie studies that have been done and the need for more funding to improve diagnostic and treatments of cfs, even a legit name change that isnt demining.

    What else can we saY ABOUT THIS ILLNESS AND THEN WHO CAN WE TELL, the major and local paper, politicians etc etc, even immunological departments public and private. we need to delagete a symtpomology of cfs and then a list of contact details of all these organisationastion and start contacting them by mail, emailing i think is to easy delete.

    can people Pm me of those who are interested to help and i will try to delegate jobs, not to big. personally i would like to draft about the illness and immunological aspects of cfs and if anyone has some good cfs studies related to immunological stuff related to cfs that would be great, especially aussie stuff as i think that can help aussie funding and i thin we have the brightest scientists in the world and we need to attract them into the cfs field, australia is the leading country in cancer research and we need to pouch these people, just look at the brain power judy mikovits has brought to cfs. If i can come up with some good info with studies to back it up and then we can send it out to public and private research and pathology clinics maybe we can get the ball rolling or find places already doing cfs research and treating and on offer clients for research.

    cheers!!!
  11. ukxmrv

    ukxmrv Senior Member

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    There's a Yahoo group OZME that may wish to get involved

    p.s. whatever happened to the chap who was a QC and head of one of the state groups?
  12. insearchof

    insearchof Senior Member

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    Hes still around and is president of Vic org.
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Hi Alex,

    did u do a final draft for your letter? and do u have any addresses etc for health ministers etc state and federal?

    cheers!!!
  14. taniaaust1

    taniaaust1 Senior Member

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    I second what Sean said... no good at asking funding for testing or that testing is put into place till there is approved test which right now their isnt. We could do with funding thou for research into XMRV to hopefully hurry things along.
  15. taniaaust1

    taniaaust1 Senior Member

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    I personally think more along the lines of what heapsreal is saying is better.... focusing on education people in important positions which could help us and putting focus on things like immune dysfuctions etc rather then focusing on XMRV which could backfire.
  16. Tulip

    Tulip Guest

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    People in power also need to know that this illness can be fatal, that people are dieing. It might get more attention that way to....

    I personally think XMRV should be left out of it as it is to knew and may be found not to be any sort of a cause for ME/CFS.
  17. taniaaust1

    taniaaust1 Senior Member

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    There is currently two urgent areas I can see (may be others I dont know about) in which we are needing to be targeting.

    1/ One area being the cut back to scientific research that our government is about to so, that will send CFS in an even worst position as far as research goes.
    2/ Juila Gillard and Tony abbot both want more people on disability to be working and will try to put things in place which could end up forcing us to work due to lack of understanding on CFS/ME

    (there are news threads on both those things at the PR site). We need to make sure neither of those things occur.. research cut back as we need more or us being hasseled on disabilitied as we are disabled and cant work. Education, Education, Education on CFS/ME is needed.

    heaps .. im happy to help out thou currently arent up to doing too much.

    (I'll check in a moment on what is at the PR wikipedia which could help us here and now and put links here.. there should be an Australia Advocacy page with contacts there).

    I cant remember if a page on Australian CFS studies ever got put together in the PR wikipedia (I was going to do one)... if it didnt, I could work on that which would help us get info easier for when putting together emails where we want to mention Aust. studies. (Esp good to mention Australia CFS studies if asking for more money not to be removed from research here in Australia. We have done some great CFS studies in Australia).
  18. taniaaust1

    taniaaust1 Senior Member

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    http://forums.phoenixrising.me/show...ject:Australian ME CFS Advocacy Contacts List (I dont know how many of the contacts there are now incorrect.. everything needs to be checked. Please correct something if you find something there wrong or let me know and I'll try to change it).

    http://forums.phoenixrising.me/show... Project:Australian CFS ME History and Events Has some Aussie studies listed on it which Ive put together in the past. (feel welcome to add to it if you know of others... or if you want to update that page.. please go ahead, its not been updated since sept. Its useful to everyone to have all the info together and easy to find).

    If someone does a sample letter we could use.. you could link it to the Australian Avocacy wiki page or add it there for others to use.
  19. taniaaust1

    taniaaust1 Senior Member

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    I just got very excited.. TinyT put a link up and it turned out to be a study I'd been in which I never knew the results which has been published. Its been a long time coming as they collected my blood for it back in 2007 and got published in Journal, January this year, so wow.. glad something has come out of it.

    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2010.02341.x/abstract
  20. insearchof

    insearchof Senior Member

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    Hello fellow Australian ME and CFS people :)

    I respectfully disagree on not making mention of XMRV and making it the MAIN focal point to emphasise the fact that a significant number of persons with a psychobabble associated illness, have been found to be infected with a retrovirus that has the same biological foot print (according to Prof KDM and WPI) as HIV/AIDS.

    Frankly, the awareness raising efforts you speak of - ie what CFS really is - have fallen on deaf ears. The Australian and Victorian Societies have tried this - without success. Simon Molesworth is not a political feather weight when it comes to government. He is a QC and well regarded and connected. I know that he has tried very hard for the cause - but the government et al have not been interested in the message - that you are now proposing to deliver.

    What your suggesting will not work IMO.

    The public do not care about a bunch of people who have already been vilified in their minds as lazy yuppies etc.

    The damage has already been done.

    It is time to turn the public on to another possible reality - to have them reconsider the lies they have been told. Causation with respect to XMRV may not be relevant, but infection is!

    We need to wake the public up to the recent ugly findings in this illness that have seriously crippled us and destroyed our lives. Anything less will be dismissed....again. How many years have you all been ill? Have you not been around the scene long enough to understand this? One definition of insanity, is doing the same thing and expecting different results.

    I have to be honest and say that I do not wish to waste the very little energy I have - on what has already failed.

    The MCWPA state that their XMRV add, opened up a new dialogue and a new consciousness - it generated interest from the medical and medical research community. This is what needs to be done here.

    In my opinion you need to ram home that science has found a very serious retrovirus in 85% of persons with CFS and that the Australian government is doing little about the matter and that this poses a serious threat to public health. Consequently, research funding should not be cut, but injected into this area immediately and without further delay. Further, that persons with CFS, who are living like AIDS patients do in the last few weeks of their life -but most days, year in - year out - are disabled and require support in the form of DSP and other services from the government and Australian community.

    If your talking about a need for an ACT style of campaign -an attention grabbing one that will get the government addressing biomedical research in this area - then you need to make the most of the current opportunity - because an ACT up style campaign associated with XMRV would be appropriate. It would not be a good fit with the informational campaign that you are suggesting and has failed myserably in the past, IMO.

    ISO

    Ps: If my fellow Aussies do not agree with me or support me in this (which is fine) - then I would really like to hear from some of the Americans, who might be interested in assisting me to raise awareness here on XMRV

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