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ICC Advocacy

Discussion in 'Action Alerts and Advocacy' started by Ember, Jul 31, 2011.

  1. Ember

    Ember Senior Member

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    We have two other threads on the International Consensus Criteria:

    Celebrating the ICC!!! for those who want to take a moment to revel in this historic event, and

    Discussion of the NEW International Consensus Criteria for those seeking to (respectfully) hash out the details of the ICC.

    Both threads have posts on what we should do next. On the Discussion thread Caroline Anderson's ideas for making the new definition stick have been copied more than once. On the Celebrating thread, Nielk's post yesterday suggests asking forum members for ideas on how to disseminate information in an effective way. Maybe we can join in an effort to promote this to doctors and the public.

    I have my own ideas, but where to post...? I hope this thread gives a third important option.
  2. Nielk

    Nielk

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    Here are some suggestions for making this new definition stick:
    
    Print out the definition and send it to every doctor you can think ofparticularly those that have treated you the worst.     Explain that this definition was developed by the worlds experts in ME/CFS and that it reflects your personal understanding of your illness.
    Send this definition to every reporter and editor you can think of at every blog or newspaper you can think of. Use your imagination. Write a letter to the editor for your community or city newspaper or blog. Write something you are happy with and send it to dozens of people via email or Facebook. Tweet about it.  
    Contact the CDC. Urge them to abandon their useless definitions, which have slowed progress into the understanding of this illness and demand they acknowledge the truth. Point out to them that the 1994  definition they use now is tainted by the involvement of Michael Sharpe and Simon Wessley both with known ties to disability insurance companies. Point out that much has changed since 1994 and the Reeves definition was useless from the start.
    Contact your Congressional representatives. Include the definition. Ask for a Congressional investigation into this widespread epidemic.
    Never refer to yourself has having Chronic Fatigue Syndrome ever again. You might say you have Myalgic Encephalomyelitis, the illness formerly known as Chronic Fatigue Syndrome.
    Myalgic Encephalomyelitis a name with some respectability. Now if we could only learn to pronounce it .
    I just reposted Carolyn Anderson's suggestions here as a starting point with great ideas.
    Please post here on this thread any ideas you might have or comments about Anderson's suggestions.

    I'll start with the first.
    1- print out this definition and send it out to all doctor's you have seen, especially the one's who misunderstood the illness.
    I think that this is a great start and easy to do. Don't assume that your doctor has seen this, because most of them are not reading the newest on illnesses especially illnesses that don't make sense to them. I remember asking my GP a few months ago if he heard about XMRV being linked to ME/CFS and he looked at me like I'm from Mars. He said no - like no I have never heard of XMRV all-together. What amazed me even further that he just left it at that. Didn't ask me any questions about it. I would like to send this new definition to him with an introductory note saying: Since you have a long time patient who has been suffering from ME/CFS, I am sure that you would like to read this NEW Myalgic Encephalomyelitis International Consensus Criteria which was published in The Journal of Internal Medicine -July 20, 2011. It sheds new light on this illness due to studies recently done on patients and gives a more accurate and precise way for doctors to diagnose this illness and to call it by it's new name. It was mainly conceived to assist front line doctors who might encounter patients who fit this profile.
    Thank you for reading this paper as I feel it is very critical for all doctors who have patients who are suffering from this illness to be up to date with the current news.

    I think if we would all do this, which is not so hard to do, it will bring awareness and with it a feeling of somewhat of a vindication.
  3. Ember

    Ember Senior Member

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    Making the difference

    My biggest concern is with our advocacy groups and the positions they will take. I keep hearing that we the patients basically like this definition. But will it be accepted? Will it make a difference?

    I wonder, could we be the deciding factor here? Could we make our voices heard?

    As a Canadian, I've contacted the National ME/FM Action Network over their initial response to the International ME Definition. They provide this statement: We have not as yet had a chance to go over the definition in detail and are therefore unable to comment on it. We are in the final phase for the September 2011 conference for which the National ME/FM Action Network is host and much of our time is spent on this most important event.

    So far, so good. If they don't have time to comment thoughtfully, just say so and don't comment. No half-baked personal takes on this other most important event, please!

    I've begun to wonder too about the Coalition 4 ME/CFS. As a member organization, Phoenix Rising is part of a coalition that will advocate for the adoption of the Canadian Consensus Document. Will the coalition update its vision statement to advocate for the International Consensus Criteria? How do I go about asking for this?
  4. Tulip

    Tulip Guest

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    It is truely the merry go round disease. The illness formerly known as ME, now formerly known as CFS and known again as ME.

    I think sending it to all doctors you have seen that didn't believe in it is a good idea as is contacting the CDC. How did the CDC get word out to doctors worldwide in 1988 that ME was now CFS? Does anyone know?.

    For anyone wondering it is pronounced myalgic ensephalomyelitis, not enkeph.
  5. Ember

    Ember Senior Member

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    2-Send this definition to every reporter and editor you can think of at every blog or newspaper you can think of. Use your imagination.

    David Tuller of the New York Times, the obvious choice... (Done.) He wrote Defining an Illness Is Fodder for Debate last March.

    Is Simon Wessely simply baiting and distracting would-be advocates in the UK? (Wessely vs. misguided patients) His reputation really is under threat. (What new ME definition? Too complicated for you, my pretties.)
  6. Ember

    Ember Senior Member

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    The response to Wessely seems so reactive--like dancing to his tune. From where I sit, the International Consensus Criteria (and world-wide research) would seem to pose the real threat to him. Yet his smoke and mirrors act prevails. He puts the emphasis on deluded patients and...poof...all the real issues disappear, never to see the light of day!
  7. Bob

    Bob

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  8. Ember

    Ember Senior Member

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  9. Ember

    Ember Senior Member

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    I'm updating Bob's links to send to journalists. Any suggestions? Does anyone know where to find an estimate of costs associated with ME or ME/CFS?

    PANDORA statement:
    http://www.facebook.com/note.php?note_id=245364462150092

    ICC document:
    http://phoenixrising.me/forums/attac...8&d=1311328233

    ICC abstract and table:
    www.research1st.com/wp-content/uploads/.../Carruthers-JIM-Table-1.pdf

    CDC overview of CFS and ME:
    http://www.cdc.gov/cfs/education/wb1032/chapter1-1.html

    NIH spending:
    http://report.nih.gov/rcdc/categories/

    ME/CFS Alert:
    www.youtube.com/watch?v=vIWGFFkp_lw

    Burden of disease study:
    http://www.ncbi.nlm.nih.gov/pubmed/21383981
  10. WillowJ

    WillowJ Senior Member

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  11. Ember

    Ember Senior Member

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  12. WillowJ

    WillowJ Senior Member

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