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ME/CFS Demonstration in Australia

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

  1. priscilla

    priscilla

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    I have recently written a lobbying letter to doctors which was sent to 5 medical organisations. The letter contained links to recent ME(cfs) research, which you are welcome to edit in any fashion you like, to use as a leaflet to give out.

    25 July 2012

    Professor Claire Jackson
    President
    Royal Australian College of General Practitioners
    1 Palmerston Crescent
    South Melbourne 3205


    Re: Royal Australian College of General Practitioners position on recent research findings in Myalgic Encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS).


    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. However the function is similarly decreased in the moderately affected group, so severity is not necessarily significant. 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.

    Practice Guidelines for doctors are being developed:

    The ME: International Consensus Criteria (ME: Criteria) provides a framework for the diagnosis of ME that is consistent with the patterns of pathophysiological dysfunction emerging from published research findings and clinical experience. Members of the ICC panel are developing Physician' Guidelines, which will include diagnostic protocol based on the International Consensus Criteria and treatment guidelines that reflect current knowledge.

    In the meantime, A Primer for Clinical Practitioners (ME: Primer) is also available providing advice on how to diagnose ME(cfs), which clinicians may find useful at:
    http://www.iacfsme.org/Portals/0/PDF/PrimerFinal3.pdf


    Problems facing ME(cfs) patients:

    Patients find it very difficult to locate a doctor aware of developments in the diagnosis and management of ME(cfs), of the ME:Criteria and ME:primer, and how overseas ME(cfs) doctors work. In the rare event a doctor knowledgeable in ME(cfs) is found, there is a very long waiting list. Patients suffer from being forced to travel long distances to find a ME(cfs) doctor, even worse in rural areas.
    Many patients have not been diagnosed, and live with impairments which greatly restrict daily functional performance, independence, and quality of life.
    Bedbound and homebound patients are the most disabled, many on a long term basis, are often not seen by doctors as they are too ill to attend at a clinic, and do not receive the extra special medical considerations as outlined in the Primer for Clinical Practitioners on page 26 under the heading Related Clinical Concerns.
    Patients attending emergency departments often receive inappropriate attention, incorrect diagnosis, ill informed advice, and even ridicule.


    I am writing to ask what steps the RACGP is taking to ensure its members are being updated on the recent research findings and both of the documents developed by an international panel of clinicians/researchers experienced in the diagnosis and management of ME(cfs).

    Specifically, could you please inform me of how the following issues are to be addressed:

    -to rectify a critical shortage of ME(cfs) doctors in Australia, as many patients have to wait for months or years before a diagnosis is obtained.

    - to educate doctors in the appropriate diagnosis and symptom management using the current ME:Criteria and ME:primer as they better target the key symptoms of ME(cfs).

    - to encourage and provide incentives for doctors to become specialists in the challenging area of Complex Chronic Disease including ME(cfs).

    - to set up clinics to conduct research and treat Complex Chronic Disease in public teaching hospitals. An example of such a clinic being set up in Canada can be accessed at:
    http://www.bcwomens.ca/Services/HealthServices/complex-chronic-disease-clinic/default.htm
    Media release of the appointment of Dr. Alison Bested as the new Medical Director for the clinic can be accessed at:
    http://www.vancouversun.com/health/...complex chronic conditions/6919354/story.html

    - to work collaboratively in exchanging information with internationally recognized clinicians and researchers. Contact details for the authors can be found at the front or towards the back for both the ME:Criteria and ME:primer.

    - to teach medical students using both the ME:Criteria and ME:primer as part of the medical curriculum.

    - to encourage and support doctors who are able to collect information and data in their practice to carry out empirical research and add to the ME(cfs) knowledge base.

    - to provide professional continuing education to improve doctor skills and knowledge, especially to doctors in regional areas utilizing up to date communication media such as webinars and podcasts etc.


    The patient community is looking forward to RACGP leadership in providing a positive response and implementation to address these issues, so that current knowledge, understanding and management of ME(cfs) is delivered in daily medical practice in clinic and hospital settings.

    Thank you for your attention.
     
  2. taniaaust1

    taniaaust1

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    Thanks priscilla. That was a great letter, thanks for doing that for all of us and some of that I can certainly use in something I can put together to pass out. Thank you for saying I can use this and alter it.. some of those links and part of what was said I may use :)

    ps would you mind letting us know if you recieve responses back to those questions.
     
  3. Shell

    Shell Senior Member

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    :thumbsup: Good one Tania.
    I'll put it on my blog when the time comes - you could have an online signiture petition for around the world to add to the people who would be there but can't because of illness or because we live on the opposite hemisphere.
     
    GcMAF Australia and justinreilly like this.
  4. taniaaust1

    taniaaust1

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    thanks that would be good if you can do that when the time comes.

    A research conference I dont think is really the place to be handing out petitions as such (gov depts are better things to send petitions to I think).

    The focus on lack of ME/CFS research in Australia and lack of what research there is, not being put out there and being given the same opportunities as other illness research. ME/CFS research needs opportunities to be placed in the minds of Aussie doctors and researchers (which of cause then also does help others world wide too) hence why demonstration at medical conference.
     
  5. Shell

    Shell Senior Member

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    The lack of genuine research is a good thing to protest. I read recently that in the UK they spend more money every year researching hay fever than they do in ME/Cfs. Says it all really.
     
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  6. taniaaust1

    taniaaust1

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    bumping this post to hope that others see it
     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Yes, I'm curious too, is Prof. Hooper organizing a protest in the UK? Is that what you're saying, GcMAF?
     
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  8. GcMAF Australia

    GcMAF Australia Senior Member

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    Ha strangely there is a (Prof) Hoooper in the UK, I do not know him. But i think the Uk group were or are looking at some action. CFS Spring as in Arab Spring??
    I am trying to ramp up here regarding this.
    The lyme people and sarcoidis people in Australia also suffer similarly.
    Certainly there may be some overlapping of symptoms and causes in CFS & Lyme & Sarcoidis. (not too mention other diseases.
     
  9. GcMAF Australia

    GcMAF Australia Senior Member

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    Justin
    I am helping a bit with Tania for her transport,
    I think we need to help tania a bit with the format and organisation
     
  10. GhostGum

    GhostGum Senior Member

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    Chopping up priscilla's letter, with some really attention grabbing facts in a first paragraph followed by the research findings with links and put into a condensed leaflet to hand out to everyone could work well.

    I recall an older advocacy letter than stated ME/CFS costs Australia a billion dollars a year and the government spends 100k, one example of how to get peoples attention, then you could lead into what other things the government spends more on.

    If anyone wants help on something like this let me know, or anything else for that matter.
     
    justinreilly and taniaaust1 like this.
  11. GcMAF Australia

    GcMAF Australia Senior Member

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    could you follow this up with tania please
    thanks
    i am thinking that it may be an idea if we could have representations of people with CFS/Lyme/ Sarcoidosis.
    Like a shadow or outline with names.
    to represent the invisibilty of this problem
     
  12. taniaaust1

    taniaaust1

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    format and organisation.. are actually I are bad in. Right now I havent even been able to get my head around all this due to all the other stuff going on in my life right now and trying to keep up with the day to day things (I get only 1-2 days per week for short time of that, which Im up to trying to do other things on top of what I usually do). I got to some time go throu the letter Priscella kindly shared and cut parts of that down to come up with a one page easy to read thing which anyone interested in ME and CFS could quickly read.

    Today someone kindly offered to donate to me (to go towards petrol I think it was..sorry I forgot.. Im struggling remember pms I just read). Im currently kind of in fear of taking any donations towards any of my costs, just in case things went really wrong or I couldnt end up doing it. (maybe I'll accept them after a successful event to cover any costs I incurred).

    The hotter weather coming on is scaring me as I was soo sick yesterday and ended up quite ill in bed.. I almost was crying as I was that sick, (not sure if it as due to the heat or yesterdays blood tests) but its made me worry what the weather could be like when the conference is going on. Im finding temperature of just 24 degree celicus is making me get sicker. (Im soo hoping someone can sort out my POTS more before that conference). I still plan to do it but are scared at just how hellish it may be going to be for me.
    ..............
    GhostGum :) .. that is exactly the kind of thing I need to get together if you are happy to try to chop up Priscellas letter and post whatever you then come up with here.

    (remember the main point Im trying to get across to those at the conference is the ME/CFS invisible nature and how the research in this field is going invisible.. and should be being presented at such conferences and being heard). We dont want ME/CFS research to be going unseen just like this illness goes unseen.
    We want to see ME/CFS being presented at medical conferences
     
  13. taniaaust1

    taniaaust1

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    Im going to make a sign (I'll make up a few signs) to prop up along side of whereever I sit or lay. I think I may just put on the first sign in big letters. "Making ME/CFS the Invisible Illness Seen". Prop that up and hand out some leaflets which will probably come from a chopped up version of priscellas letter on our disorder (whatever myself or someone else comes up with.. hoping someone helps with that).

    The other signs I'll try to highlight some research.

    I currently have enough thick, white cupboard to make up several signs.. (the cupboard from a failed attempt to block out all light coming into my room, Ive got wood board nailed over the windows now). I already have acrylic paints which I dont react to at home.. so the sign part of things, I wont find hard to sort out.

    umm I just thinking.. I should contact the ME/CFS society and see if they have any of the booklets they used to have eg they used to have the ME/CFS canadian overveiw doc, which I could also give out to anyone who wanted them .. get myself maybe 20 of those (if 20 doctors or researchers were interested in those wanting them and walked away with them, that would be great as it would mean 20 more better educated health professionals). I could staple a page of various research findings which have come out since that document was produced inside the cover (along with a link to the new ICC ME definition).. I may try to ring them tomorrow to ask. I(maybe the society would donate them for that cause?)

    Im starting to formulate more of a plan in my head about it all.
     
  14. GcMAF Australia

    GcMAF Australia Senior Member

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    Tania
    I am going to donate $50 and I am going to do a bit of fund raising for you. I will see if i can get people in Adelaide to help.
    Dont worry, the money is non conditional!!
     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I would throw $50 bucks in to if it helps. ;)
     
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Prof. Hooper in the UK is the ultimate stud in my book. surprised you hadn't heard of him. he has done so much to help us by exposing the Wessely school.
     
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I like that idea since its a general med conference. maybe Fibro too? But enough of my backseat driving!
     
  18. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Don't worry, I won't donate until after we agreed on what for and after any demonstration. : )

    If you're that sick, maybe consider not doing it. There will be other opportunities in the future, too be sure. I don't want this to throw you into a crash where you can't help us for a long time! : ) Ours is a situation where we definitely have to choose our battles. just thoughts. your call obviously.

    Obviously, a well coordinated media event is ideal but that's prob not going to be possible here. Rivka did a one person demonstration for a few minutes and put it on YouTube. Pretty cool (even though not quite as effective).
     
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  19. GcMAF Australia

    GcMAF Australia Senior Member

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    I have forwarded $40 to Tania. My reasoning is Tania has done a lot. even if she cant make it she has earned it & MORE.
    The information she has given me has been worth a lot more than $40.

    The idea of a U tube presentation is brilliant!!.
    i am doing as much as i can to support her & others.
    Justinreilly here CFS is more widely known, but i take your point.
     
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  20. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Thank you for supporting this and Tania!
    J
     
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