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ME/CFS Demonstration in Australia

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

  1. taniaaust1

    taniaaust1 Senior Member

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    GcMAF.. it just got delivered by the parcel guy. I'll check it out soon as I have to get ready for a CFS specialist appointment to leave to go to very soon. Just wanted to u to know ASAP that I just got it. (havent read new posts on this thread.. I'll read when I get back from appointment)
  2. taniaaust1

    taniaaust1 Senior Member

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    Does people think that one of the signs saying "ME/CFS The Invisible Illnesses" would be a good sign? to represent lack of our illness being seen in research?

    I thought about "ME/CFS Make the Invisible Illness Visable" but it just seems like too many words on the size of the pieces of cardboard Im putting a few signs onto....

    any other sign ideas?

    Im thinking about having another sign saying "More research for ME and CFS" and maybe a third "New International ME concensus criteria" ..
    also want to highlight that drug (cant think what its called, the one which kills B cells) study on ME/CFS..I definately want to do a sign on that. (I have enough cardboard for 7 signs)

    ps.. went to paint first sign (the protest signs were my task I'd set for myself today) but my stensil letters arent as big as I thought they were. Im going to buy bigger ones tomorrow (or end up just doing the letters by hand)
  3. GcMAF Australia

    GcMAF Australia Senior Member

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    Tan I think "ME/CFS The Invisible Illnesses" is excellent
    Because it is very to the point.
    Maybe an outline of person representing the people who are not there.
    justinreilly, GracieJ and taniaaust1 like this.
  4. taniaaust1

    taniaaust1 Senior Member

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    I brought a stencil and also started working on the posters this morning... I wanted them to stand out so didnt want to just do letters on white board so have so far painted the background for 3 of the posters (before I ran out of one of my paints and had to get my support worker to take me down the road to get some). Its so hot today had a near collapse when down the street with her, started staggering and had to grab hold of something to stop myself from going down. Ended up getting throu the little shopping trip ok (I was half sitting in the shops fridge to recover) with no embarrassing on the shop floor episode.

    Im happy Ive finally got started on this project, by tonight hopefully I'l have one of them completely finished.
    GcMAF Australia likes this.
  5. Kati

    Kati Patient in training

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    Go Australia! That's fantastic!
  6. GcMAF Australia

    GcMAF Australia Senior Member

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    Thanks Kati
  7. GcMAF Australia

    GcMAF Australia Senior Member

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    Thanks Tania
    Please take it easy, you health is alos important
  8. GcMAF Australia

    GcMAF Australia Senior Member

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    Kati can we vote for this??
    taniaaust1 likes this.
  9. Kati

    Kati Patient in training

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    G
    Voting for semi finals will be from December 3rd to 12th. I will send reminders here but you can also join the FB page
    Www.facebook.com/AvivaCCDC to get the news.
  10. taniaaust1

    taniaaust1 Senior Member

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    Been working on the second poster.. Ive made it to say "Myalgic Encephalmyelitis" at the top and "Ritumixab 4 ME? under that. Its taking soo long to do posters.

    Ive realised today that that conference started today i think it was (I'd confused my days of the week and had been thinking it was end of next week, it was just luck I realised this confusion today)...

    Ive been fortunately able to arrange to be picked up tomorrow night so I can then go and protest at the conference on Tuesday (hopefully, ............the person I rang was so drunk that I hope he remembers me ringing and asking.. hopefully he wont be drunk when he picks me up in the car, Im a bit concerned, II soo hate tha. Ive already been in a car accident once due to someone driving me somewhere when they were drunk and he ended up hitting the bridge post when we were just about to go over a bridge... but I really really dont want to pay for a taxi as it would be well over $100 dollars to just get there). I'll just pray it will be all fine. Im more worried about possibly being on a trip with a drunk driver then I are about worrying if I'll collapse and end up in hospital from trying to protest when I have bad OI. (if I wasnt so desperate to be protesting about our situation.. there is no way I'd be doing this).

    Tomorrow I'll spend making up some kind of info sheets on ME/CFS and some interesting research.

    :( Im way way over stimulated due to workin on the poster and now have not much chance of getting to sleep any time soon (its almost 2.30am) and walking into walls when I get up to get a drink (just nearly cracked my head open on the doorway).
    justinreilly likes this.
  11. taniaaust1

    taniaaust1 Senior Member

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    After a shocking sleep (I had adrenaline like rushes wanting me up when I finally did get to sleep after 4am.. I havent had those rushes for a while), Im up and now working on the page I want to hand out to those who are interested going to the medical conference. Anyway this is what Ive done so far (got to add the studies to this page and it may change) but Im just wanting to know what people think of it so far.

    "
    Myalgic Encephalmyelitis (sometimes called Chronic Fatigue Syndrome CFS)

    CFS is an umbrella term in which includes patients who have possibly milder ME or other conditions lumped into one.

    ME patients are not mostly about fatigue, they also have many other major symptoms such as dysautonomia (autonomic system dysfunction), irritable bowel syndrome and may show signs of neurological disorder eg myoclonus, tremors, hyper-reflexia along with many other symptoms. Far more symptoms are needed for a ME diagnoses then for CFS with the symptoms needing to be found in certain areas. Please check out the "Myalgic Encephalomyelitiis International Consensus Primer for Medical Practioners" which has been published in 2012 to help distingish between the two conditions (the link is on the SA ME/CFS Society [1] homepage).

    ME is an illness in which is known also for causing outbreaks around the world at times and the World Health Organisation classifies it as a neurological condition. Prevalance of ME is 0.4-1% [2] whereas for CFS diagnoses its up to 4%-6%..

    Both these conditions are in need of far more research and and as studies use different CFS definations in their research with some CFS research has been done on just tired patients who only have one other symptom and who dont even have post exertional fatigue, the outcomes of CFS studies are quite variable. Due to this scientific consensus cant be reached.. this will continue to be an issue till subgroups start being used in CFS studies including the separation of the ME group. There are many abnormalities even thou, still found in this CFS heterogenous group on studies. This research is getting little attention and most doctors are not aware at all of the abnormalities which have been found for ME/CFS.

    This sheet has been done to highlight you both to that there is a new International Consensus Primer out for ME and to some of the ME/CFS research which is going unknown to most of the scientific and medical profession and needs more studies done in these areas."

    comments on the above please (Im trying to be good to both the ME and the CFS groups and trying not to have the info confusing but have it point out the current issues with research etc).
  12. taniaaust1

    taniaaust1 Senior Member

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    Ive decided that my blabble dont sound scientific enough for doctors/researchers so are going to use the start of princillas letter (on page two of this thread) and start the letter off "Dear Doctor/Researcher," for a bit of personal touch.

    "The October 2011 Journal of Internal Medicine published a document, Myalgic Encephalomyelitis: International Consensus Criteria (ME: Criteria), can be accessed at :
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

    In the Introduction it states "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.

    Some recent research which caught the attention of ME(cfs) clinicians and researchers worldwide:

    "
  13. Ember

    Ember Senior Member

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    I couldn't find the link to the ICP on the SA ME/CFS Society homepage, Tania. (Did I go to the wrong site?) It can be found here: http://hetalternatief.org/ICC primer 2012.pdf.
  14. taniaaust1

    taniaaust1 Senior Member

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    Finally finished using priscellas letter which I made a lot shorter.. ..halved it (so its just one page to hand out at medical conference). This is what its going to be. (no more will fit and I wanted to leave most of the info that the Aussie researcher found as I thought other Australians may be interested more seeing it was Aussie research). A big thanks to priscialla.

    "
    Dear Doctor/Researcher,
     
    The October 2011 Journal of Internal Medicine published a document, Myalgic Encephalomyelitis: International Consensus Criteria (ME: Criteria), can be accessed at :
    http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/full

    In the Introduction it states "Myalgic encephalomyelitis (ME), also referred to in the literature as chronic fatigue syndrome (CFS), is a complex disease involving profound dysregulation of the central nervous system (CNS) and immune system, dysfunction of cellular energy metabolism and ion transport and cardiovascular abnormalities. The underlying pathophysiology produces measurable abnormalities in physical and cognitive function and provides a basis for understanding the symptomatology. Thus, the development of International Consensus Criteria that incorporate current knowledge should advance the understanding of ME by health practitioners and benefit both the physician and patient in the clinical setting as well as clinical researchers.

    Some recent research which caught the attention of ME/CFS clinicians and researchers worldwide:

    The October 2011 Journal PlosONE published 'Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatrigue Syndrome. A Double-Blind and Placebo-Controlled Study ' at : http://www.plosone.org/article/info:doi/10.1371/journal.pone.0026358


    Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
    http://www.ijcem.com/files/IJCEM1204005.pdf

    Longitudinal investigation of natural killer cells and cytokines in chronic fatigue syndrome/myalgic encephalomyelitis
    http://www.translational-medicine.com/content/10/1/88/abstract

    Report of the Invest in ME 2012 International ME/CFS Conference held in London
    http://www.investinme.org/Documents/MECFS Conference 2012/Ros Vallings IIMEC7 Report.pdf

    Twenty prominent international researchers and clinicians were invited to speak including two Australian researchers.
    The keynote speaker was Professor Don Staines (Gold Coast, Australia). He presented auto-immunity as a plausible hypothesis in the aetiology of ME/CFS. He discussed the research programme being undertaken at Bond University over the past 8 years.

    Dr Sonya Marshall-Gradisnik (Gold Coast, Australia) presented her work on immunological dysfunction as possible biomarkers for ME/CFS. She pointed out initially that the pathomechanism is unknown, there is no diagnostic test but there is evidence of immunological dysfunction. NK cell function is down, Treg function is implicated in ME/CFS, and research into B cells suggests an auto-immune disorder. There is significantly reduced NK cell function in ME/CFS, which is consistent over time. There are 2 types of NK phenotypes: dim and bright. The dim seem unaffected in CFS, the bright very much decreased. This is consistent over time in this illness. NK cells are regulated by Tregs. One KIR receptor is associated with NK cell lysis reduction. mRNA gene expression relates to GZMA lytic protein which is significantly decreased in ME/CFS – this is a potential biomarker

    Many research articles over the years have identified underlying biological abnormalities found in ME/CFS such as those listed under References at the end of the ME:Criteria, and the ME: Primer referred to below. The Primer for Clinical Practitioners (ME: Primer) is available providing advice on how to diagnose ME, which clinicians may find useful at: http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf "

    Now I need to decide how many of these pages to print.. as I have no idea how many doctors/researchers would be interested. 50? 100?
  15. Ember

    Ember Senior Member

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    You've provided the link to the ME/CFS Primer, Tania. Here's the link to the ME-ICP: http://hetalternatief.org/ICC primer 2012.pdf.

    (By the way, I did recently pass your message on to Dr. Carruthers. :))

    Edit: "The October 2011 Journal of Internal Medicine published a document..:" "Article first published online: 22 AUG 2011." (Small point.)
  16. MishMash

    MishMash *****

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    Way to go, Tania! This is a noble effort. Kudos. This is no small deal, putting yourself out there. Anything that starts there will spread across the Pacific. Hope you have a great turn out. I would advise: don't be polite-- be obnoxious, because that will get you publicity. And that's the only thing that works. Polite people are ignored. Just ask the gays who protested back in the early 80s. They knew how to get things done!
    justinreilly likes this.
  17. taniaaust1

    taniaaust1 Senior Member

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    Unfortunately its after 4.15am and Im still wide awake cause Im still so wired from overdoing things.. its going to be another night of a few hours sleep... fortunately strangely my brain is right now crystal clear.. (this is like my most awake time).

    oh Ember, I wish I'd known that earlier.. Ive now printed them (till i rang out of ink) so it looks like they will have to stay with those couple of errors. thanks anyway.

    MishMash.. a research conference is the wrong place to be obnoxious.. as we need those researchers there to want to look closer at ME/CFS and they certainly wont get much interest if one was obnoxious and really in everyones face. im just about hopefully educating and Id like ME/CFS to be one of the research topics being spoken about next your.

    The place for louder behaviour would be like to do a protest outside of parliment or the heath dept or something like that... where gov people who make gov decisions may be.
    justinreilly likes this.
  18. GcMAF Australia

    GcMAF Australia Senior Member

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    Tania
    fantastic person & effort
    justinreilly, allyb and Ember like this.

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