Just signed petition, only 7,600 have signed need more

Discussion in 'Fibromyalgia Main Forum' started by mrstyedawg, Jul 1, 2006.

  1. mrstyedawg

    mrstyedawg Member

    I just signed a petition for the name change. I also left a comment. There were only 7,600 signatures. There are hundreds of thousands of us. The more signatures we get the more chance we have of changing the name of CFS to it's original name Myalgic Encephalitis. Please think about signing.

    Highlight the following address:http://www.petitiononline.com/MEitis/petition.html Click on "edit" on top of page, then click "copy", then click on the address bar, the click "edit" again and click on "paste" then click go.

  2. Aeronsmom

    Aeronsmom New Member

    and I got a few of my family members sign too.

  3. Aeronsmom

    Aeronsmom New Member

  4. mrstyedawg

    mrstyedawg Member

  5. sorekitty

    sorekitty New Member

    I'm new here. My husband and I both signed it.

  6. wordbyrd

    wordbyrd New Member

    ...and sent the link to the petition to many, many people, with the hope that they will sign it and forward the link to others.
  7. Diagoras

    Diagoras New Member

    Calling it a disease implies that it has a known cause which is similar for all people with the disease. A syndrome means it's a collection of symptoms that may have different causes for different people. I agree that it should be taken more seriously, but if it's a collection of diseases with different causes rather than one single disease, aren't we doing a disservice to those who fall outside the definition of ME but who have chronic fatigue? I think syndrome is an appropriate term and the name by itself does not mean it's to be taken less seriously. I think it would be better to promote the idea that just because a disease is difficult to diagnose, doesn't mean it isn't real!
  8. HuggyBear1

    HuggyBear1 New Member

    CFS has been known as many different names, not just Myalgic Encephalitis. Several years ago in The CFIDS Chronicle, they had put several names up for a vote: Peterson/Cheney disease, RED (RNaseL Enzyme Deficiency) disease, and I can't remember the others. So I'm not sure I want to sign this petition unless they figure out a proper name for it. Dr. Kenny DeMeirlier of Belgium in his book "Chronic Fatigue Syndrome: A Biological Approach", actually went thru the details at a seminar I attended by him and his findings conclude that it is another Acquired Immune Deficiency Syndrome and wants to call it AIDS II. That's something very serious to think about since he is one of the main scientists and researchers for CFS.
    Dr. Daniel Peterson is also doing research as to how HHV-6A is involved with CFS. I also just read where they've come up with something called parinfluenza-5 that may have influence on CFS.
    So I can't just sign a petition that immediately calles it ME.
    [This Message was Edited on 07/03/2006]
  9. mrstyedawg

    mrstyedawg Member

    I recently read an article from a doctor who has been researching this disease for twenty years. The article stated that the name was originally ME and that it was changed to CFS to trivialize this horribe illness.

    I have had this for 22 years and I know from experience that when I tell people I have CFS it seems that the only word they hear is fatigue. They will then tell me to rest more (as if 18 hours a day of rest isn't enough). They don't seem to understand that fatigue for a healthy person and fatigue for us is a completely different type of fatigue.

    I think that the name Myalgic Encephalitis sounds way more serious than Chronic Fatigue Syndrome and it would help to make this disease to be taken more seriously.

    But if you do not want to sign the petition, I completely understand.

  10. HuggyBear1

    HuggyBear1 New Member

    Hi Andrea,
    I understand as I've had this since at least 1990. As for the name CFS, that's why the name was actually changed to Chronic Fatigue and Immune Dysfunction Syndrome. When I tell people that name, they understand it better. The CFIDS Association have been there from the start and if not for them and these other dedicated doctors and scientists, we would still be at square one. It is not just a neurological problem as some people might suggest. It is not definitely a neurological disease but has a definite viral aspect to it, that's why they call it Chronic Fatigue and Immune Dysfunction Syndrome. Dr. Suhadolnik at Temple Univ. in Philadelpia PA in all his research has found a particular enzyme deficiency that is unique to CFS patients. It has to do with the 25-A Syntethase anti-viral pathway and the RNaseL proteins. You can search the internet for more info on him and his research or even go to www.temple.edu and try to find it there. I'm just not ready to declare it simply as ME. I have a friend who was in the Ampligen study with me who has CFIDS AND ME. They both have different symptoms to them.

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