please SIGN THE PETITION FOR CFS NAME CHANGE

Discussion in 'Fibromyalgia Main Forum' started by karinaxx, Jun 28, 2006.

  1. karinaxx

    karinaxx New Member

    A CALL FOR ACTION: THE RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING DISEASE




    View Current Signatures - Sign the Petition


    --------------------------------------------------------------------------------


    To: United States Department of Health and Human Services, National Institutes of Health, and Centers for Disease Control
    We, the undersigned, respectfully demand that Myalgic Encephalomyelitis (ME), an internationally recognized neurological disease, be also formally recognized as a distinct clinical entity in the United States by the National Institutes of Health and the Centers for Disease Control. It is time to make the case definition/diagnostic criteria explicit in the name.

    Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a poorly defined, misunderstood, controversial syndrome which remains underfunded and underresearched. The name Chronic Fatigue Syndrome itself has trivialized the illness and further subjected these patients to incredulity and ridicule. The CFS rubric has not only neglected and failed to help those with ME, it has harmed them. ME patients will not improve with cognitive behavioral therapy (CBT) or graded exercise (in fact, exercise will make them worse) - yet these are considered treatments for CFS. Simply "renaming" CFS will not solve this problem.

    ME should not be considered a subset of CFS, for the hallmarks of ME will not be present in the population of CFS patients once the Ramsay criteria are established in the US. Patients with Myalgic Encephalomyelitis under the CFS criteria must wait for six (6) months before acquiring a diagnosis, a critical period in which possible recovery is diminished by lack of proper treatment. The ME definition does not require a six month wait. (See Ramsay Definition at: http://www.egroups.co.uk/message/ME-itis_NOW/2.)

    We, the undersigned, are "tired of being sick, not sick of being tired."



    To read a complete discussion of the points outlined here, we suggest you
    visit http://www.egroups.co.uk/message/ME-itis_NOW/

    You can see the full petition (and sign it if you wish) at:

    http://www.petitiononline.com/MEitis/petition.html





    [This Message was Edited on 06/30/2006]
  2. Shannonsparkles

    Shannonsparkles New Member

    I'm having trouble reading tonight. Does the article say that they want to make ME criteria different from CFS criteria?

    Thanks. (( )) Shannon
  3. karinaxx

    karinaxx New Member

    ME was the name for cfids/cfs before they changed it, thanks to a psychiater from england (-wesley) who was part of a insurance group.cfs does not qualify for health insurance and so on. this doctors was lobbying for this insurances and has now a big legal case going on against him. finally !
    cfs has allways been actually ME and has therefore no other criteria. in england they are working hard, to get this desease recognised and several organisation are using the name ME/cfs now, as a accepted compromise.
    But the name cfs just makes our problems worse, read the other article i posted under a must read.
    love karina
  4. karinaxx

    karinaxx New Member

    i agree.
    lets bumb it.
    hope more are signing!!!!!!!
  5. karinaxx

    karinaxx New Member

  6. karinaxx

    karinaxx New Member

  7. mrstyedawg

    mrstyedawg Member

    Will definitely sign. This IS very important!

    Andrea
  8. LADYBUG2

    LADYBUG2 New Member

    Plese consider signing
    Thanks
  9. apl

    apl New Member

    My husband and I just signed this petition. Thank you so much for bringing this to our attention.
  10. KMD90603

    KMD90603 New Member

    I signed the petition. It's funny because I had recently been wondering why the US doesn't catch up with the times and call it ME. CFS, I find, to be degrading. It does absolutely no justice to the physical suffering many of us endure due to our disease. It seems like a lot of people have already signed the petition, which is great to see. I hope that some good will come out of this, and maybe this illness will get the respect it deserves.

    Gentle hugs,
    Kim
  11. karinaxx

    karinaxx New Member



    i was wondering why this has so little response here.
    i will keep on bumbing it.
    as long as this illness has such a ridiculus name,we will not be taken serious by doctors and the society!
    if we dont speak up and try to change things, who will?
    love
    karina
  12. optimistic1

    optimistic1 New Member

    I haven't been on line til this evening and I am so delighted to see this petition. Thank you so much for calling our attention to this very important matter.

    It was my Husband's and my pleasure to sign this. Changing the name of our disease is so important. The current name is demeaning and insulting to what we go through.

    I hope you will keep us posted somehow as to how this comes out. Lets hope for the best and I certainly hope more of our Board will add their signatures to this very worthy petition. It can only help us.

    Again, many thanks,
    Arlene
  13. karinaxx

    karinaxx New Member

    i just want to add, that this petition was started by http://www.ncf-net.org/about.htm.
    there is a lot of good information on their website,like more on the recent findings about Parainfluenza Virus.
    I just past this petition on, thinking that all of us on this board, can really make a diference.
    lets show them our support!!!!
    love karina
  14. karinaxx

    karinaxx New Member

  15. phoenixrising2

    phoenixrising2 New Member

    I signed this a long time ago, but consider it worthy of being bumped.
  16. yuckie

    yuckie New Member

  17. HuggyBear1

    HuggyBear1 New Member

    Why were my comments deleted from this post? They did not violate any rules and were of my own opinion. I thought that's what these boards were about.
  18. phoenixrising2

    phoenixrising2 New Member

    I don't know anything about your comment being deleted, hon. You do have the right to your own opinion.

    There is another thread that's titled "Just signed petition, only 7600 have signed, need more". I noticed you had responded to that. Could that have been the one you're talking about and not this one? Just wondering.

    Hugs,

    Phoenix
  19. kholmes

    kholmes New Member

    "Chronic Fatigue Syndrome" is absolutely meaningless when it comes to the severity of this illness.

    What other disabling illness uses only one of its myriad symptoms for its name?

    "CFIDS" is not much better.

    Kholmes
  20. suzetal

    suzetal New Member

    So heres a bump.

    It is important that it be changed.
    Sue