start a list with names of cfs people

Discussion in 'Fibromyalgia Main Forum' started by babyk902, Dec 14, 2008.

  1. babyk902

    babyk902 New Member

    we need to do something to get this disease recognized and force people to become more aware that it is actually real and that there are SO many people in the world living with it... can't we start a list with all of our names on it and send it in somewhere?? there are so many of us, and it makes me so sad to see that most of us don't have the choice or the ability to live our lives like we should be able to.
  2. Empower

    Empower New Member

  3. aftermath

    aftermath New Member

    That list should be the membership list of the CFIDS Association. This group was instrumental in catching the CDC when it stole $12 million earmarked for CFS research and funneled it to another project.

    Because the way we have been treated (ignored by the medical establishment), one would think that all of us would have banded together long ago. Instead, membership in the national organizations is like 2% of the patient population.

    I know money is tight for us. Still, I tell everyone, if I have to choose between another bottle of vitamins or the $35/yr for membership in a group that is going to lobby Congress and the CDC for funding on my behalf, I choose the latter every time.
  4. stschn

    stschn New Member

    I agree with aftermath. In 2009 I am not sending money to anyone other than the cfids association. It's the end of the year and as I add up all that I have sent-just a little at a time to other organizations I realize that it has added up to quite some bucks. Yes I worry about people without food or a roof over their head I worry about the planet and what is happening to it. I know how much good some organizations could do if only I would send them some money as I'm reminded all the time. But it's time to take care of my family as I do have this concern that I will pass this on to my kids and grandkids. How do I do that? By sending money to an organization that has already done so much good for us.
  5. aftermath

    aftermath New Member

    I'm glad to finally see that we are beginning to build a nucleus behind the CFIDS Organization here on this forum.

    Especially considering the way we have been treated by the medical establishment by the government, it's amazing that it has taken this long.

    Right now, like 2% of diagnosed patients contribute to the CFIDS Association or another similar group.

    Instead, this patient community should operate like a mafia--you take on one of us, you take on us all.

    If the national group leaders decide we need to influence person "x" in Congress, EACH AND EVERY ONE OF US, NO MATTER HOW TIRED WE ARE THAT DAY, needs to draft a paper letter (even if it's only a few lines) echoing that sentiment.

    It is only when we begin to SPEAK AS ONE that we will get real research funding, not the paltry cashflow that currently couldn't buy the toilet paper in the AIDS/Cancer/MS labs.

    Cort Johnson's new site is going to have a lot of info explaining just how bad the situation is with regard to our research.

    I know that money is tight for us, considering our impaired working capacity (I work f/t, but barely). Still, every single one of us needs to join ($35/yr) and make a cash contribution as well if possible.

    I have literally spent tens of thousands of dollars on treatment, with no results. Instead of spending money on more unproven treatments, any cash I have left over is going to head toward supporting a group that can find out what is causing this disease and develop effective treatments from there.
  6. SpecialK82

    SpecialK82 New Member

    I couldn't agree more - let's kick some CFS butt!