Bios- lack of credibility?

Discussion in 'Fibromyalgia Main Forum' started by teranan, May 7, 2003.

  1. teranan

    teranan New Member

    I was just thinking and decided to post my thoughts for what its worth. First I want to say this is not to take away from all the wonderful work Jelly, Joannie,others are doing.God knows we need to get out the word that this DD is real,we want validation. We want someone in power to help us. More studies,more money for research,a drug to make life more tolerable until a cure is found. Having said all that, the undeniable truth is were not credible. Lets face it were not credible with a lot of our families and friends. Its not our fault and I guess we would have to blame a lot of the medical community.They have refused to acknowledge that our pain and other symptoms are real. We have been labeled lazy,fakers,depressed,with lost spirits. Since there is no definitive test to prove FM-CfS we lack credibilty Do we really think these talk show host with their big egos care about cronic illness. There worried about ratings and their bank accounts. John Walsh seems to do a lot of important shows. The rest seem to be junk TV. The Bios were a wonderful idea. I was thinking since we do lack credibility,why not use people that do. I'm talking about the known DRs that believe that this DD is real.A lot have written books on their particular treatment of FM and CFS. Can we e-mail them,organize them to contact Talk Shows too. We have Madwolf and AC. as our own pesonal reps. Why not have DRs that care lead this Charge with our bios in hand as their proof. What do you think? I would love to be wrong and see someone do a show on us. Just my thoughts----- Terry
  2. teranan

    teranan New Member

    I said Drs that beleive that this DD is real. I personally don't know any either.I speaking of DRs that sponsor treatments,push certain supp.,wrote books.Maybe someone has a caring Dr that would stick his or neck out.I believe one e-mail from someone with M D at the end is probably more apt to be taken seriously.
    REEDER I almost did'nt post this as I was afraid some would think I was being negative. Its not meant that way. I was just thinking of more we could do. I certainly believe that all the bios are credible. I guess I was looking at it from point of view of the person that will read them. And make the decision of there value to them. [This Message was Edited on 05/07/2003]
  3. Plantscaper

    Plantscaper New Member

    To have some "expert physicians in CFS/FM" lead the cause, as people are not educated and seem to be so dismissive of these DDs..if they had more education from more objective sources, it might turn the tide, and then, the bios would be there to demonstrate the significant and traumatic effects of these DDs..And I do not understand why we have not had more public support from these "expert physicians"...
  4. jamedw1

    jamedw1 New Member

    but it sure beat sitting around doing nothing...
    ya just never know...
    ed
    p.s. i did get an answer back from dr phil's staff, thanking me, and reminding me that because of the tremendous influx of emails, i probably wouldn't be getting a "personal" reply...
    yeah... like i was holding my breath...
    still and all... ya just never know... :)
  5. kar1953

    kar1953 New Member

    and if he hasn't kicked me out by the time he answers the list of questions I have (just kidding) I'll ask him what he could do. You see, I KNOW he believes our illnesses are for real. He has FMS & has written 3 books on the subject. He is one of the two docs from Ohio listed in the good doc referral on this web site. I could ask him if he could write up a little something as an opening statement to our bios.

    Anyone think this would work? At least it would be 1 doc giving us support.

    Take care......Kathi
  6. teranan

    teranan New Member

    I was starting to regret writing this post. I don't want to be the voice of doom and gloom. I would like nothing better than this to work.
  7. Annette2

    Annette2 New Member

    I am so sorry that there are so many of you who have physicians who don't believe you and disregard your symptoms. But there ARE good doctors out there - I know they're hard to find. I have not met one doctor who has not believed me, supported me, and felt compassion for me. They are all ready to give me meds to alleviate my pain, send me for physical therapy and try to make me feel better. I know I am lucky. I just want to say this so new people coming on the board will not automatically feel despair. Thanks!

    Annette2
  8. sydneysider

    sydneysider Member

    There are some good thoughts here. I guess things could backfire. But does that mean we should keep quiet, or should we take the risk. How are we going to get more research if we don't have recognition. This year I heard of an FM sufferer living in my area who committted suicide, and another who attempted. Iwander how much the attitude of the medical profession had to do with this. We all know how hard it is to deal with the lack of credibility receive. In my life experience attitudes DO change over time.
  9. sydneysider

    sydneysider Member

    There are some good thoughts here. I guess things could backfire. But does that mean we should keep quiet, or should we take the risk. How are we going to get more research if we don't have recognition. This year I heard of an FM sufferer living in my area who committted suicide, and another who attempted. Iwander how much the attitude of the medical profession had to do with this. We all know how hard it is to deal with the lack of credibility receive. In my life experience attitudes DO change over time.
  10. goingslowlycrazy

    goingslowlycrazy New Member

    I also found the bios incredibly moving and such a poignant display of people whose lives have shrunk.

    I am about to do a mailing of the Healthworkers Poll, to a big list of recipients that I have been compiling over the weeks.

    I know where you are coming from with this though Terry - moving though the bios and the healthworkers posts are, my big fear is that it will be viewed as 'anecdotal' evidence.

    I am becoming a little cynical over how 'the powers that be' view our illness and I fear that they will first look for any excuse to disregard our information. Which is why it IS a great idea to push the established specialists to draw more attention to the DD. They couldn't disregard them quite so easily.

    But...as others have said, what have we got to lose? If we get no feedback at all, at least we can feel that we tried and we will keep trying...they can't ignore us for ever!!!
    I think that it's important for us to try and keep buoyant about this and try to keep believing that we can have some power and a say in this. It is our lives after all!
    hugs
    Mary x
  11. teranan

    teranan New Member

    You all gave me a lot to think about to. We must win and it does'nt matter how as long as we stay united.