Your vote CAN count! Take the POLL and get our voices heard!

Discussion in 'Fibromyalgia Main Forum' started by Alyssa-Admin, Feb 26, 2015.

  1. Alyssa-Admin

    Alyssa-Admin Active Member

    "The IOM's report on ME/CFS has generated a tremendous amount of media coverage, as well as considerable discussion in the ME/CFS community. While many have welcomed the report's emphasis on the serious nature of the disease, there have been some lingering doubts about the appropriateness of the new name. Because the recommendations of the IOM are not public policy and no federal agency or department is obliged to follow them, we now have the opportunity to work together to devise a name that is appropriate.

    Here is a quick link to the poll:

    Whether it is your disease, or someone you know suffers from it, or this is simply a matter of concern to you, ProHealth would like your input on this important matter.

    Please take our short poll (only three questions!) on the name change.

    For the full version of this article and YOUR opportunity to create a name that works! (The Poll is at the bottom! :) )
    Last edited by a moderator: Feb 27, 2015
  2. oikukio

    oikukio Member

    I work for one of the members of the IOM committee. In discussions about the new name, he pointed out that it was a less than catchy title, but the goal of the name was to alert physicians to not promote exercise as a therapy (which may be suitable in cases of depression, but not CFS.)
    TigerLilea likes this.
  3. Alyssa-Admin

    Alyssa-Admin Active Member

    Very interesting... Thanks for sharing this.

  4. grannycfs

    grannycfs Member

    I can understand that reasoning up to a point. But more importantly we must make physicians sit up and take notice that it is a disease. Right now there are too many who dismiss it as unreal. The media rarely gets it and passes along their ignorance to the hundreds of thousands who listen to erroneous reports from the news and except for what I read in the New York Times, the newspapers often leave out important information about the disease. ME is perfect until enough research is done so that more is known about the disease. ME can be the heading acronym for "itis" or "opathy." I've had this 30 years and after many years of suffering I finally read Ramsay's description and I yelled out loud YES, THIS IS WHAT I'VE BEEN SUFFERING WITH FOR YEARS.
    Alyssa-Admin likes this.
  5. Alyssa-Admin

    Alyssa-Admin Active Member

    I was watching a funny movie a couple of months ago with Melissa McCarthy and Jason Bateman (yep, I can remember the actors - not the name...oh, was it called Identity Thief?)...anyhoo....she was in a wee rear bump in her out and started saying, 'oh my fibromyalgia, my fibromyalgia'. It was at that point where I realised what a joke FM/CFS/ME have been made into.
  6. TigerLilea

    TigerLilea Active Member

    Hi Granny - I'm going to have to Google Ramsay's description as I don't think that I have heard anything about it. As much as I hate the name CFS, I personally think that until we know what it is that it is pointless renaming it.
  7. Alyssa-Admin

    Alyssa-Admin Active Member

    @TigerLilea I just read your tag line about menopause and CFS/ME ....I am 44 and up until last year I was having horrible night sweats (like up at least 3x a night, shower, change of night clothes, sleeping on towels). Not to mention watching what was left of my sanity go out the window at times! Anyways, the one thing that has made a huge difference for me is bio identical hormones - progesterone. Made from wild yam. I finally feel as 'back to normal' as can be - at least in that way. I thought I would share that with you.... :)
  8. TigerLilea

    TigerLilea Active Member

    Thanks, Alyssa. I did use prescription progesterone cream and it did help for the first three months but then after that it actually made me feel worse. I've heard that from several other women, also.
  9. Alyssa-Admin

    Alyssa-Admin Active Member

    We're all so different. I'm not even using an Rx, must from Amazon. Thankfully, it has worked for me. It was the straw on the camel's back in regards to dealing with stuff through the night too!