Is the CDC studying your illness?

Discussion in 'Fibromyalgia Main Forum' started by mezombie, Apr 24, 2009.

  1. mezombie

    mezombie Member

    You doubt that very much, huh?

    Well, you're right.

    And the CDC's Dr. Reeves has made things even worse by broadening the definition of "CFS" to include anyone who feels "unwell".

    Using this definition renders any research into 'CFS' meaningless, as it is simply overbroad and covers a heterogenous group.

    There is an online petition circulating regarding this issue that is easy to sign on to.

    So why not take a moment to read the text and add your name?

    You may sign and not have your name shown on the signature page if you wish.

    Be sure to delete the checkmark that says you want further communication with ipetitions, and ignore the page you get after signing, which asks for a contribution for the ipetitions website. Just close the window. You're done!

    If you think online petitions don't make a difference, check out what Avaaz has accomplished![This Message was Edited on 04/24/2009]
  2. TigerLilea

    TigerLilea Active Member

    I don't trust a petition that won't let you sign unless you make a financial donation. That doesn't seem ethical some how.
  3. outofstep

    outofstep Member

    This petition is sponsored by a CFS activist. You don't have to donate any $-you sign the petition and that's it. The $ screen is for ipetitions-just close the window after you submit your signature and you're done.

    There was actually a big thing recently re: inaccuracies in snopes. Aside from that-grassroots activism and petitions do work. We should be patterning ourselves after grassroots AIDS activists in the 80s-and they used petitions among other things. They have what is now a preventable disease-yet look at all of the funding they get! It's more difficult for us to organize b/c we don't share a common culture, and by the time we get diagnosed we've already been really sick for 6 months-however, unless we do the CDC will continue to screw around with us and we won't get the funding that we need and deserve.

    I encourage everyone who wants a treatment for this disease to get involved. If you are only up to signing the petition then please do that-if you can do more, ie. get involved in the CDC's public meeting by sending an email from the website, calling into the meeting, or even attending the meeting (inconveniently located for most people in Atlanta), then please do. We can make a difference.
  4. xchocoholic

    xchocoholic New Member

    thanks for the info. It looks like we're going to have to handle getting the proper research on our illness as well as our illness. I can't see most of us being up to it between the cognitive problems and fatigue.

    I've never looked at this before so I had no idea what the empirical / Reeves definition was. Here's a link for others. I got this from the original site listed in the first post. It's going to take me a few times reading this before I get it ... anyone have any quick summaries of this ?

  5. outofstep

    outofstep Member

    I did read what snopes had to say and was not impressed-I don't consider them to be authorities on this (basically it's an opinion piece) and they could also use some data to back up their claims. I also think that there is a big difference between an email petition and something like this one.

    The CDC will be accepting comments re: their research plan and this petition could be a very powerful contribution. If you don't want to sign it, that's fine, and of course you are entitled to your opinion, but you should keep in mind that you may be discouraging people who want to participate but are so physically limited that a petition is all that they can manage. My opinion, having witnessed the grassroots AIDS advocacy movement, is that we can, and need to, collectively insist that our disease is accurately defined and adequately funded.
  6. mezombie

    mezombie Member

    You don't have to make a financial donation. Once you've signed, the site does take you to a confirmation page. That page includes information on how to donate, but you can just ignore it and close the window. Your signature is recorded.

    I know it's confusing. Please don't be put off!
  7. mezombie

    mezombie Member

    So much is done via the internet these days that online petitions and emails have much more clout than they used to.

    If you want an example of an organization that is having an impact via online petitions, google Avaaz.
  8. mezombie

    mezombie Member

    Some of the links Tom Kindlon lists on the right of the petition page, while not summaries per se, provide explanations of the Reeves definition that might be easier to digest.
  9. outofstep

    outofstep Member

    google "gopetition success stories", click on the top one. They have pages of success stories where petitions have made a difference around the world.

    google "petitiononline success stories", click on the top one. They list their success stories and if you scroll to the bottom of that page there are responses to petitions from Google, CNN, and Microsoft.

  10. TigerLilea

    TigerLilea Active Member

    I received a confirmation email this morning letting me know that my name had been added to the petition. Unfortunately, for some reason there is a gray box instead of my comments.
  11. TigerLilea

    TigerLilea Active Member

    I do sign online petitions in the hope of them getting to the intended party/ies and having some affect. However, I have heard that a petition without an address is worthless. The problem with signing online petitions is that one person can be signing anyone and everyone's name to the list without their consent. (Or making up fictitious names.)
  12. Rafiki

    Rafiki New Member

    People do pay attention to how much attention something gets online - number of hits, for instance - so, while an online petition may not be considered the same beast as a paper petition - which people could just as easily sign multiple times - it is still an indication of interest in the cause.

    There are many organizations using online petitions as part of a broader strategy. I think we ignore this initiative at our peril.

    I've signed.

    Peace out,
  13. QuayMan

    QuayMan Member

    Kamina, what are these more "efficient ways" with regard to this issue? I'm sure people would be interested in ideas of what they can do.
    ipetitions let people comment (although sometimes comments don't go up for some reason) so the petition also includes a selection of comments on the issue - where else are there a collection of comments on this issue.

    With the relative small number of signatures, it is probably not going to force the CDC to do anything. But having the petition with a number of signatures shows that there are some people who are unhappy.

    Anyway I've read down and you toned down your points a bit. I suppose I have noticed that some people might sign a petition and do nothing else - which could be frustrating in situations when they could do a lot more. In this case, there are probably a few things people can do but not a huge amount as it is a relatively technical area. But if people have ideas, feel free to throw them out.
    [This Message was Edited on 04/25/2009]
  14. mezombie

    mezombie Member

    Tom Kindlon will make sure the CDC is aware of the petition and the signatures as it considers its next five years of CFS research (see the threads on the meeting on April 27th for more info).

    It's late, I'm tired, and I'm tired of trying to get people on this site involved in advocacy.

    I'm not Kamina, but I've been a member of this board since 2006 and have suggested a number of ways people can get involved. I am sick of repeating myself. Anyone can look under my username and read my posts to see what I've suggested.

    The problem I've come across here is that people have very limited energy and often have cognitive problems. So my general suggestion to meet with their local congressional delegation while they are in their home districts and forge relationships with key staff members is not taken up by many.

    Petitions are an easy way for people to educate themselves on the issues, take action, and maybe inspire more involvement.

    THis petition is part of a broader campaign. I have found over the years that it is best to give people choices in how to participate in advocacy. And on this board, people have complained that some options are too complicated.

    That's why I posted this thread.
  15. QuayMan

    QuayMan Member

    Thanks mezombie.

    Just to be clear, I wasn't giving out, just encouraging brain-storming, if people did have other suggestions.

    Petition is up to 189. Would be good to make it over 200 in the next few days.
  16. Spinetti

    Spinetti New Member

    It was a snap even with my befuddled brain. It's about all I can manage now, but it feels good to be able to help a bit.

    Thanks mezombie!!
  17. xchocoholic

    xchocoholic New Member

    I really appreciate your info on this. It's taken a lot of time and effort for me to understand the little bit I do at this point, but I can't see that we have any choice in whether or not we write the CDC or sign this petition. I just signed it myself ... and I wrote the CDC yesterday or was that Friday ? lol ...

    To be frank, they're screwing with us ... As I see it the Reeves definition applies to anyone with fatigue that lasts for more than 6 months. So this definition is ridiculous for everyone not just those with the Real CFS/ME. The only people I can see benefitting from this would be the doctors who are too lazy to look for the cause of someone's fatigue.

    Thanks again ... Marcia

  18. TeaBisqit

    TeaBisqit Member

    I don't sign petitions anymore because it never seemed to do any good. I used to sign every single name change petition for this disease and a whole bunch of others, but nothing ever came of it. I've signed petitions for tons of different things, nothing ever happened. I don't know if they help at all. I'm starting to think the only thing that will ever help is picketing government in large groups and getting the media to cover it. And since most of us are too sick to picket, I guess it won't get done.
  19. outofstep

    outofstep Member

    Here's your chance to stick it to Reeves-and won't that feel good :) He won't like 189 signatures-he'll like 190 even less...
  20. QuayMan

    QuayMan Member

    Until now, Reeves and the CDC CFS team seem untouchable. The petition is one way to complain. 213 now.

    If people can organise protests, so much the better - but it would be hard for most people to attend I would imagine and I don't think it has to be either one or the other.