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ME/CFS Demonstration in Australia

Discussion in 'Action Alerts and Advocacy' started by taniaaust1, Jul 28, 2012.

  1. taniaaust1

    taniaaust1

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    Im calling upon anyone who wants to help bring change to ME/CFS to join me in a demostration Im going to do 25th-28th Nov (on one of those days, Im not well enough to protest at them all myself). Ive decided Im going to do this even if it means Im going to have to pay $100s for a taxi to get me there and back. As far as I can see .. I cant see a better place to do a demo for us. Please help me to correct the lack of attention ME/CFS is getting from medical professions etc.

    On the 25th-28th Nov at the Adelaide Convention Centre (right in the city) is the 6th Australian Health and Medical Congress. http://www.ahmrcongress.org.au/ Note all the societies on their program who will be talking at this event about research .. sadly of cause there isnt one for ME/CFS to get any ME/CFS research out there in the eye of the medical profession. I want this changed. I want ME/CFS research to be represented at this conference, the medical profession isnt doing it for us.. so let us do it ourselves. Let us show others in the medical fields, that there is some fascinating ME/CFS research happening in the ME/CFS fields.

    Im proposing this demo to be done by having signs with some of the latest facts from ME/CFS studies or quotes from studies. Lets get ME/CFS research heard!! Dont allow us to keep being not represented. Help the "Invisible Illness" to be seen. More ME/CFS presences then just I at this demo would be welcome so please think of joining me in this.

    Thanks.

    ps this is the first time Ive posted about this so hopefully there will be some response from others who will do it too. (Unless Im in hospital at the time, I will be going ahead with this demonstation). Bring your blankets, pillow to lay down on if need be, as I will be needing to do so too.

    I wish they had ones like the newcastle ME/CFS researchers talking at this medical conference. We need a ME/CFS medical society who can give talks at such conferences.

    *could a mod please correct my spelling of demonstation in the posts heading (mind fog) thanks.
     
  2. GcMAF Australia

    GcMAF Australia Senior Member

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    Bloody Brilliant tania.
    words fail me to descibe how good this move is.
    GcMAF
     
  3. Fred1234567

    Fred1234567

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    Great Idea- I was reading Cort's stakeholders info and wondering how those of us in Australia propose to get our voices heard. I think it is a great idea...I am thinking we should start writing and requesting that ME/CFS research is included....!!! Maybe this is something we need to take up with the victorian ME/CFS group (they seem the most organised Australian Group) as well as the SA etc...it is time to be heard...we could demonstrate with blue wigs and the ME/CFS Australian Blue T Shirts and advertise the need for a flow spectrometer for research - to identify blood cells cell by cell at Griffith University...donations vita the Alison Hunter Memorial Fund (it is specifically for research).
     
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  4. GcMAF Australia

    GcMAF Australia Senior Member

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    Thanks Fred1234567
    I would think that people could email the medico organisations, the more emails they get the better.
    For starters try these-
    ASMR= Australian Society for Medical Research
    Rosemary is the congress organiser.

    They are actually a great bunch. I know her a bit she works next to my friend.
    I think they have their hearts in the right places. I think they would be pleased actually that the public cares about these issues.
    They are always petitioning Govt re funding.
    There is also the Govt McKeon review ; http://mckeonreview.org.au/
    I have two submissions there. http://mckeonreview.org.au/sub/302_Dr_Ivan_Hooper.pdf
    Also if we can each email everybody on the panel then we should get results.
    I would emphasise not only the uniqueness of ME/CFS but also-

    • Maybe CFS research is leading the world in that in someways more advanced than a lot of cancer stuff.
    • Many if not all diseases are now considered inflammatory so maybe to divide into many diseases is a bit counterproductive.
    • Now cancer treatments are being used for other diseases, diabetes treatments are being used for other diseases. The list goes on and on.
    also NHMRC are asking for more innovative ideas, so can email them.
    Also the smaller societies want to consolidate funding because the big ones like Breast Cancer get most of the funding. disproportionate funding.

    Other people to email are the Royal Societies, and local MPS, Health Ministers.
    Also Rotary and Lions and other service clubs.

    I know the Dean of Science at Melbourne Uni.

    etc, etc
     
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  5. Fred1234567

    Fred1234567

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    You are inspirational.
    I think that the health care workers care but are ill informed ... That to me is the avenue of least stress and most productivity. It may not be correct and certainly is not what I always think but it is always my official line!!!!
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Just an idea, you could hand out papers from the bond uni cfs study on nk cell dysfunction. This could help back up your protest with scientific study done in australia.
     
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  7. GcMAF Australia

    GcMAF Australia Senior Member

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    Good idea heaps
    Are you in contact with them?
    GcMAF
     
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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  9. GcMAF Australia

    GcMAF Australia Senior Member

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    I have emailed this group, but have received no reply to my query.
    GcMAF
     
  10. taniaaust1

    taniaaust1

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    ahh.. that's a cool idea and one I will try to take up. It would be great if papers on that study could be handed out to the medical professionals going to the medical conference who are interested in research.....

    Would it be legal to copy a study and hand out some copies of a study if I could get any medical professions interested?? or do i need permission to do that?

    I'll also contact the SA CFS society (not today thou as Im resting after being so ill yesterday).. and see what they say about it all.. see if they are willing to help to try to get ME/CFS in the program of that conference. (they usually cant do much as its all run by sick volunteers but if the society will some how support us with trying to get ME/CFS research onto the agenda of medical research conferences.. it would be great.
    They are our org and we do need orgs trying to push for things like this.. other illnesses have their orgs supporting them in this. (if the SA ME/CFS org are all too unwell to take this up.. maybe one of the other state ones can seeing its like an International conference for Aust?)

    Maybe some nice emails to the conference organisers would help..
     
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    Handing out papers is a cool idea Tan. It is not illegal. You could email the author or the research group as this would be more collaborative.
    They are alwasy happy for exposure.
    Me
     
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  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thank you Tania. I believe demonstrations are very important. My offer to partially fund demonstrations (up to $250) applies here if you really organize it for maximum effect- see for example, Rivka's blueprint for doing a demonstration and my thread on funding them. This would include contacting the media and also the local support group and offering small stipends to people to come to defray the cost of transportation and their time and PEM.

    Can anyone pick up Tania so she doesn't have to spend $100?
     
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  13. GcMAF Australia

    GcMAF Australia Senior Member

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    we are working on helping Tania


    XXXXXXXXXXXXXXXXXXXXXX
    Here is Rivkas to do list
    TO DO LIST FOR ME/CFS DEMOS
    Written on Sept 12 2011, by Rivka
    Email: Rivka (at) ThatTakesOvaries (dot) org

    Reach out to local ME/CFS groups
    a. Ask: will they join the demo?
    b. Ask: if not, will they help us get the word out for the demo?

    Reach out to have young people with ME/CFS to come to demo
    a. To do this, contact SpeakUpAboutME@gmail.com, kickHeal, what other groups?
    b. Contact local families with kids who have ME/CFS
    c. Ask local ME/CFS groups if they know young people with ME/CFS

    Find out what is needed for permits
    a.Contact city police: ask what permits are needed for us to hold a demonstration with 5-25 people (or whatever you think it will be), in these locations:
    - on the sidewalk in front of the target location (example: a federal site, like the Capitol Hill HHS headquarters)
    - on the sidewalk across the street of the target location (across the street is likely not federal property)
    - in front of the local federal building (example: Boston's federal building, the JFK building)

    If demo is held at a regional gov't office
    a. find out who runs that local HHS or CDC regional office, AND who is in charge of public relations there
    - ask for a meeting with one or both
    - have talking points and a letter ready to give them if you meet and even if you don't get to meet face to face
    b. when you ask for a meeting, and/or once you secure a meeting, you need to decide in advance if you want to tell them about yr demo or not. There are pros and cons to telling them and pros and cons to not telling them until you are actually there.

    Media outreach
    a. Send press release via email, and also call all local newspapers and radio (ask rivka for sample press release). Pitch to health reporters, living reporters, city desks. Call the newspaper's main number and ask who covers those beats/sections, and who is the editor of each section. Pitch to both the reporter and her editor, separately.
    b. Try to pitch to reporters live, or leave your live pitch on their voicemail. In other words, don't just rely on emailing yr pitch, but do email it, too.
    c. Make sure you have a compelling story (example: "I've been bedridden and homebound 20 years with an illness that 1 million Americans have but that gets almost no funding for research." Or "We are a mother and daughter team protesting together in hopes to secure funding for the sick daughter who has been bedridden 10 years, along with almost 1 million other Americans."
    d. Contact the reporters you want to reach 3 times. They are busy and I have sometimes gotten a yes on the 3rd try.
    e. Consider a teleconference (this is when you have a press conference via phone; the press calls in to ask questions of a panel of patients, family members, expert doctors or whomever you decide to have present

    Reach out to other groups to invite them to join us (this is a big task. Plus, be ready for rejection.)
    a. ADA groups
    b. HIV/AIDS
    c. Autism groups

    Prepare one pager
    a. To give gov't official you meet with (or dont get to meet with, but you leave the letter/one pager at the front desk for them)
    b. Same or similar one pager can be given to passers-by (for the public), the press, and for mailing to the HHS officials later.

    Make homemade banners or signs with compelling messages
    a. Rivka can send her 25 foot banner to the demo organizer, too

    Accomodating disabled people
    a. Consider doing what the London protesters did in 2010: organize vans to pick up folks from their homes and bring them to yr demo
    b. Consider having folding chairs, wheelchairs, stretchers there for folks to sit and rest. Decide if this is a good or bad thing in terms of PR.

    Consider media drawing tactics
    a. Using the 25 foot banner
    b. Die-in or lie-in (with pillows? Pajamas?) (be ready for risking arrest)
    c. blocking doors (be ready for risking arrest)

    Videotape and get on YouTube
    a. Have at least two video cameras (flip cameras are great) and two camera people, in case one fails. Rivka has a flip camera that can be sent to the demo organizer to use and then return to Rivka.
    b. Videotape the images and audio you want (like your prepared or spontaneous speech) twice, since audio or lighting or something will likely fail in one of them
    c. Edit it to less than 5 minuts and put on youtube
    d. Send a link to the video to gov't officials
     
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  14. taniaaust1

    taniaaust1

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    GcMAF is being a great help in helping get out this info out there and has been in contact with some professions and one has said she'll support us with this.

    Ive finally felt up to working a bit more on all this and contacted http://www.changeforme.net/page4.php so hopefully they wil put something about all this on their site or let people who would be interested in demonstrating at this event too know about it.
    Ive also posted about this on the "not crazy" ME/CFS forums where quite a few aussies hang out.

    Thanks to for your post and offer justinreilly. If Im go ahead with the idea of handing out info to ones going to the conference.. I may need a little funding to cover some costs of ink (my printer seems to really go throu that). It would be great thou if I could find someone in Adelaide willing to pick me up and host me a night and go to the conference next day to demo together. (or even just picking me up would be great.. I could sleep on streets the night if i had too). Its all difficult cause the MCS making it so I cant catch buses due to enclosed space with people wearing chemical deoderants and perfume so just makes them inassessable to me..

    If anyone wants to contact anywhere about what we are trying to do or cut and paste my post at a ME/CFS site elsewhere.. please just go ahead and post here who you've contacted (my mummy used to say..."many hands make light work") .. if as a community we work together, we can help bring in change.
     
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  15. lnester7

    lnester7 Seven

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    Tania How can I help from USA?
     
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  16. taniaaust1

    taniaaust1

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    Im certainly no expert in arranging demonstations so my first thought to your question was "I currently dont know". :confused:

    One thing which thou which anyone no matter where they are in the world could do to help.. is making sure other ME/CFS sites who have Australians in them (and hopefully others from my own state) .. try to get the word out there so they know about this and could be involved. So please spread my original post around please if you know of other sites.

    Closer to the date there may be more things which others from other countries may be able to help with with this... I'll post here then. If you do think of anyway you could help from where you are.. please just do.
    thanks.

    Maybe someone else could use my idea and find a large medical conference in thier own area to start similar protest at about the lack of ME/CFS research being presented worldwide at such things.

    Let it be known that there is more research then just "fatigue" or "CBT and GET" research going on with our illness and that serious research needs to be more followed up and that there is other interesting ME/CFS research out there.
     
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  17. lnester7

    lnester7 Seven

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    Do you want me to post it on the POTs Aus Face Book group? By the way we keep leaving OI/POTs behind :(
     
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  18. taniaaust1

    taniaaust1

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    yeah its sad that we cant split focus on more..but i think we have to be quite focused and clear in what goal we are currently focused on... that just being getting more ME/CFS research done and seen. But yes.. maybe there are some there who would like to support us in our aim so please go ahead and post there.

    If there was any suitable good ME and POTS research??... maybe that could be brought to attention there.. maybe we could make up a board highlighting some interesting different areas of ME research. (I got to find out more about this conference... if its just sharing of Australian research or world wide research too).
     
  19. taniaaust1

    taniaaust1

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    My progress on this protest is being quite slow due to making sure I dont end up making myself ill over it. But I now have an email in reply of mine from the 6th August from the group "Change for ME". They are offering support. Letter (leaving out personal email address) reads as follows

    "
    G'day Tanya,

    This is Lee from 'Change for ME'. Thanks for your email regarding the demonstration you are organizing in November. Dr Hooper has also been in contact about his side of the event. We'd be happy to help if we can. We'd certainly be able to promote the even on our facebook page - https://www.facebook.com/changeformeaustralia and also on our website. We had a banner made up a few months ago that has faces of patients and their stories. If we don't have it scheduled to be used elsewhere at that time then we may be able to loan it to you. It's a great promotional item and gets a lot of attention. I have attached a photo of it for you.

    Can you please tell me more about what you have actually got planned and what you'd like to achieve. Also what resources do you have available to you? Are you working with any other organizations or is it just you at this stage?

    I look forward to hearing from you. "
    ..............................................

    Ok that's cool..so we may be able to have a banner. The banner looks great. (im not sure how we'd put the banner up but this is something to think over and how it would be done).

    GcMAF.. do you know anything about the Dr Hooper stuff that Change for ME mentioned in their email? I didnt know about his involvement or how he's involved so right now Im confused.
     
  20. GcMAF Australia

    GcMAF Australia Senior Member

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    Yes i know dr hooper quite well
     

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