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Supporting the WPI from Australia

Discussion in 'Action Alerts and Advocacy' started by jonc, Aug 7, 2010.

  1. jonc

    jonc

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    I would love to donate to help the WPI.

    I live in Australia and my accountant has told me that only locally registered charities are tax deductible. It may seem like a small thing, but in the long run tax deductible status can make a big difference to charitable giving.

    I'm wondering if patients in Australia can lobby our ME/CFS advocacy organisations to channel funds through to the WPI. I don't know if that is even legal or possible.

    Does anyone here have any connections with registered charities in Australia that are associated with ME/CFS? Or know anything about this issue?
     
  2. boomer

    boomer Senior Member

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    The same thing applies to Canada. Only locally registered charities are tax deductible.
     
  3. jonc

    jonc

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    Can a locally registered charity fund research efforts in another country?
     
  4. taniaaust1

    taniaaust1 Senior Member

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    Hi jonc.. We had?? (or maybe still have??.. i just looked about their site and can see things were updated in 2008) an excellent CFS/ME charity in Australia who really worked hard to help things over here in Australia (doctor education on CFS/ME and also of of general public) .. started back in 1998.

    I once went to one of the big CFS/ME educational lectures, conferences they funded here (several states in Australia they held them).. by funding several famous world CFS/ME experts to come in from overseas eg Dr Daniel Peterson (who worked with Dr Cheney in that 1980s outbreak), Dr Kenny De Meirleir, Dr M Hooper and another specialist were brought over to do lectures for the medical professionals over here and separate ones for the general public. The lecture they gave in Sth Australia to the general public in Adelaide, I think would of had 400? people who attended and got latest info on CFS/ME back at that time. (and then they also held these education sessions on CFS in Eastern Australia state(s).

    I was just looking at a Forum (medical conferance) they held back in 2007.. all the big names where there discussing research together including Judy Mikovit from the WPI. http://fresh-guild.com/ahmfsite/07access/2007conference.html (ummm that must of been the one for the medical doctors of the one i went to for the public.. i think that was about 2007)

    Throu this organisations hard work.. if you have a good CFS doctor, it may of been them who got him/her where he is today on this.

    I think they've funded CFS/ME studies here in Australia. (actually quite a bit of CFS/ME research has come out of Australia). You may want to see if this charity is still about http://fresh-guild.com/ahmfsite/index.html (the one who started it, her daughter died of CFS/ME). I just noticed they have got the link to the WPI site on their site.


    Alison Hunter Memorial Foundation
    Alison Hunter Memorial Foundation Research Trust

    The may of just moved sites?? As I have been doing the wiki page on the CFS orgs and checked all the links and this organisation had a different web address.. but noticed today the old link wasnt going and then found the web links i just put up here. (this organisation in the past has gone quiet for a while..and then done big things so whether they are still active and gearing up for something.. i dont have a clue).
     
  5. Sunshine

    Sunshine Senior Member

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    Jonc.

    The photo of Alison Hunter always makes me emotional. Poor girl only lived to be 19 before dying of ME. When I saw that website it makes you think. There are still people who believe ME can be cured by psychology (such as the Lightning Process/CBT). It's so insulting for patients with the genuine illness and of course to those who have died of the neurological disease.

    Australia is fully entrenched in the CBT school of 'think yourself well', just like the US and UK, but possibly worse. It was an Australian doctor who wrote a terrible piece on Anti XMRV when the news broke back in October that British Psychs copied and pasted into our health care system over here, a guy called Andrew Lloyd. http://www.bartscfsme.org/Documents...leukemia virus-related virus XMRV and CFS.pdf

    Australians look utterly isolated not just by politics but geography, I really feel for them. I so hope they can get an XMRV test soon and yourself too. Good luck.
     
  6. Sean

    Sean Senior Member

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    That is not true.
     
  7. alex3619

    alex3619 Senior Member

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    Hi Sunshine

    Lloyd has worked with the CDC, I think. He is really the Australian branch of the CDC if you want to think like that. He has done some good work as well as the atrocious (wasn't he part of the Dubbo study?). He is firmly entrenched in the psychobabble from what I hear, but mostly this is anecdotal. I am stretching my memory on this, and I could be wrong, but wasn't he a believer in EBV causing CFS and then became disenchanted? I think he fell into the trap of thinking that if the only obvious choice of pathogen (back then) was wrong, CFS must be psychological.

    Apologies for all the caveats, my memory is fubar today.

    Bye
    Alex

     
  8. Melodie

    Melodie Guest

    I don't have enough experience to say whether it is entrenched or not. I have heard that MECFS Victoria does some great work. But without even looking I have come across a few disturbing articles on sites.

    Here http://sacfs.asn.au/medical/what_causes_cfs.htm
    an article which Peter White authors "What causes chronic fatigue syndrome?
    Infections, physical inactivity, and enhanced interoception may all play a part".

    Here http://www.mecfscanberra.org.au/actmecfs/act_science%20week.htm
    This has information about a talk that Andrew Lloyd has already given. There is a slideshow that you can view or copy. I has a bit of information relating to the Dubbo study.

    These two are both on mecfs support group websites.

    Edit: The Andrew Lloyd talk is not on Sunday the 20th August (I could have looked at the calendar as the 20th is not a Sunday). The above link is from a previous year. My apologies. I changed the sentence about this.
     
  9. Melodie

    Melodie Guest

    So if there is any support group talking with WPI please let us know.
     
  10. Sean

    Sean Senior Member

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    You seemed pretty certain a couple of comments back.

    We got plenty of problems here in Australia, just try to find a general practitioner who wants to deal you. But the way we get treated is nothing like what patients in the UK seem to have to deal with. For a start, we don't have to go through CBT/GET programmes just to get disability pensions, and there is no distinction between psychiatric and organic disorders for the pension, it is the same rate for both, and the pension has been seriously upgraded under the current Labor government.

    Can't speak about the situation in the USA, don't know.

    Doubt you will be able to find any country in the world who treats ME/CFS patients particularly well. But I can tell you I am very grateful to be here in Australia rather than the UK, despite the serious hassles I have had over the years.
     
  11. Melodie

    Melodie Guest

    Sean, Please tell me what you were referring to when you said
    I too am "grateful to be here in Australia" compared to other places.
     
  12. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    Mackay, Aust
    I was officially diagnosed with somatoform disorder, despite SPECT scans showing deteriorating brain abnormalities. My doctor had to refer me to a psychiatrist who was not allowed to mention fatigue and to focus on psychiatric terms only. That was entrenched in the Queensland Government's Health Department. I am not sure if that attitude has softened. Officially I don't have CFS, irrespective of whatever treatment is advised for CFS.
     
  13. Tony

    Tony Still working on it all..

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    Hi Jonc,

    Further to what Tania was saying you could contact http://www.mecfs.org.au/ and ask them about it.

    "The Alison Hunter Memorial Foundation (AHMF) works independently, in a spirit of support and cooperation, with all researchers, institutions and ME/CFS societies to advance scientific knowledge and medical care." The AHMF is still very much in operation.
     
  14. Sean

    Sean Senior Member

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    Melodie, looks I got you mixed up with Sunshine's post. I do apologise. :Retro redface:
     
  15. Melodie

    Melodie Guest

    Thanks Sean. :)
     
  16. jonc

    jonc

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    This is kind of getting a bit off topic, but I notice from Andrew Lloyd's slides, in the link Melodie posted earlier, the following statements:

    CFS is not:
    a muscle disorder
    a psychiatric disorder
    a retroviral infection
    an auto-immune disorder
    a sleep disorder
    a metabolic disorder


    There's nothing in his slides that backs up such an categorical statement. I wonder how he squares it with recent research results. He's certainly had plenty of time to revise his thoughts since last year's Science article.
     
  17. jonc

    jonc

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    Reading further, I'm pretty sure that talk was from a previous year. Oddly, I can't see the year mentioned anywhere but someone has written a summary of it, so I assume it has already been given...

    Maybe he would be less categorical were he to give the talk now?
     
  18. taniaaust1

    taniaaust1 Senior Member

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    Australia is no worst off then America in the views on CFS/ME and in fact may be actually better off in views as there has been a strong push in the past for doctors to go by the canadian consensus defination. This push was done i believe by Alison Hunter group and some of the other state CFS organisations over here (each states organisations used to work completely independantly). As in other places its up to the patients to educate the doctors as they dont really learn about this illness in medical school so will just form opinions from whatever info they come across. Alisons Hunters death i think did impact some on how things are over here.. but that was quite a while ago now.

    Testing things in CFS/ME is not discouraged over here.. like goes on in England and some so in America. Thou finding a good doctor still is very hard esp when some of our doctors get their info from the CDC site. In the Canadian defination CFS/ME guidelines testing common findings found in CFS/ME is encouraged. Bascially here in Australia the doctors are either the CC CFS views or the CDC views.. or sitting in between, its up to them how they choose to think about the illness..

    There was differences on what is going on depending on what state you are in and how active that CFS association has been in their doctor education etc. Such as the big conference done for doctors here in the past in Sth Australia (sponsored by Alison hunter memorial). In Sth Australia.. their own CFS guideline book was made (sponsored by our states government) and presented to doctors at one point to help educate.

    The SACFS support group i can say arent biased at all towards psychological causes. That study at the site may of been there just cause them posting the latest studies in a non biased way, the site is like a one stop shop.. in which you can find out all kinds of things to do with CFS, what is going on with it in the other states etc etc. Just like here.. you see the wessely view kind of studies published, so we all know what is being said and studied, it dont mean thou that this site is biased towards Wessely views.

    Up until last year they used to publish their own CFS mag to which i was subscribing to (till they merged the mag with another aust. CFS support group), in that for the time i was getting it for, i didnt see any articles done by ones of Wessely views. They were really taking this illness as a true physical one.

    Since the mag thou has merged last year with the other group interstate, now it has articles i dont like from Wessely school thought people eg Lloyd. The only big name over here i see a Wessely or CDC issue with is Lloyd.

    The most bad treatment most of us get over here is that no doctor will help treat us.. due to the treatments being unproven and they will just turn around and say "sorry we cant help" or "i dont deal with that, i have no time to be researching" "Your case is too complicated for me" (this is what ive got from lots and lots of different doctors over here).

    Ive NEVER even had a doctor ever tell me since the 13 years ive got this illness that i should have GET or CBT for it (that gets as much support as B12 injections and other CFS/ME therapies). (so i think the GET and CBT must be more likely to occur to those in England and America). Its extremely hard to get any help like that over here, even if you want it. I wanted some therapy in just trying to deal with this illness and its been so hard to get what ive managed to get with a ton of pushing for it.

    England has it the far worst between England, America, New Zealand and Australia. (and of cause other different countries have it even worst still where there isnt even an illness called CFS or one along those lines at all).

    Being a country island.. we are more isolated then other parts of the world so harder to get specialised tests. Hence no way to have a XMRV test here yet. (the only one testing here i think for a study was Lloyd). So that poison is probably affecting some Australian states.
     
  19. taniaaust1

    taniaaust1 Senior Member

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    mistake post..this needs deleting.
     
  20. taniaaust1

    taniaaust1 Senior Member

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    What gets me is how people can even say those things when it isnt known what CFS is. The statements should say "CFS is not A KNOWN: muscular disorder, a psychiatric disorder etc
     

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