Advocacy PAYS off

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, Mar 1, 2007.

  1. monkeykat

    monkeykat Member

    Two years ago I had NO family support and NO friends.

    I always say, "Keep Hope Alive" and my hopes are becoming reality.

    Miracles are truly taking place as I have finally gotten 4 family members and 1 friend to advocate for me and all of us by writing a comment to the News Herald in Ohio. (see my other post News Herald MOCKS CFS).

    The News Herald editorial is APPALLING, PLEASE READ...

    BRICKBATS: To the U.S. Centers for Disease Control and Prevention, which recently paid $4.5 million of taxpayers' money on a public awareness campaign involving chronic fatigue syndrome.

    Chronic fatigue syndrome is not contagious or life-threatening, and many experts question its merits as a focus for public health. Most researchers believe it's a real condition, but some feel the CDC has gone too far, at times putting such ailments ahead of the public good because advocates and politicians push for it.

    The CDC was created to address serious, potentially fatal conditions such as cancer and heart disease. With due respect to anyone who suffers from it, chronic fatigue syndrome is just not that important....

    ------------------------------------------------------------Another MOCKING response!!!
    This is how a reader of the News Herald responded to my comments (see them on my other post "News Herald MOCKS CFS")....

    I love reading the N-H editorials online, and was shocked to see so many comments on this one. I read all the posts with interest.

    Despite the fact this this condition seems to make people mean as H-E-double-hockey-sticks. (Wishing the disease on the writer/writers? I wouldn't wish a common cold on my worst enemy. Does this condition make your hearts cold?)

    To say that CFS is worse than cancer shocked me. One writer even went as far as saying her spouse had testicle cancer and a brain tumor and that was a drop in the bucket compared to what she deals with. Real sympathetic to your spouse. Another has had it for 50 years? Has it been around that long as an actual condition?

    And I have to ask how you all have the energy and cognative ability to post such long, well-thoughtout, albeit mean posts? You can't walk, read or "bathe more than once a week" but can sit and type so long?

    These questions may sound sacastic, but I have to ask.
    Michelle, Cleveland

    Do NOT give up! Never, never, never, NEVER give up!

    Keep Hope Alive, Monkeykat

    Please add your comments to the growing list by clicking on "POST A COMMENT" at the top of this web page:
  2. monkeykat

    monkeykat Member

    To Michelle – Cleveland

    As the husband off the writer you were responding to I have to comment. Yes I’ve had Testicular Cancer and a brain tumor, but in no way would I compare it to the devastation my wife has endured with CFS. I went through a difficult time of treatment at two separate times for both tumors, but I did not lose my ability to function. Yes, I have endured some long-term losses from my illnesses. But I did not have to give up my career, other than a short sick leave during my surgery and radiation, I did not have to drop out of life and be forgotten by many people in my life—not to mention being ignored by the media, government and medical community.

    My wife’s heart is anything but cold. The fact that she even tries to explain her experiences to help others in her situation attests to her longsuffering in dealing with ignorant attitudes toward this growing epidemic. As far as having the cognitive ability to write the response—it took $50,000 dollars in alternative treatments to get back enough cognitive ability to write such a response (and that’s only when she’s having good days). She still suffers for anything she does. Writing such a commentary saps her energy for the entire day or more. She has to sacrifice the rest of her day to tackle such a feat.

    After seeking traditional medicine for several years, which only destroyed her health more, we had to look for other ways to battle this illness. Hence, the frustration with those who seem to think the CDC’s funding is such a wasted allocation of taxpayer’s money. When my wife was at her worst two years ago she was a shell of the woman I married—bedbound most of the day, in severe pain, and many other debilitating symptoms, with nothing to look forward to and no real hope of getting better. At that point, I would have been willing to do anything to give her some semblance of a life back. Fortunately for her, we were able to find alternative treatments that made her life at least somewhat more bearable.

    Unfortunately, there are many others who either cannot afford such treatments (or are unwilling to go into debt for them) or do not know how to access them and thus suffer in silence; therefore, they are unable to write such responses. I think this is why they are so angry. Who has listened to them? And the one time there is a ray of hope with the CDC, “journalists” such as those at the News Herald mock their suffering and consider any expenditure of public resources a waste. So, yes, I think these people are showing great restraint in their comments.

    I hope this addresses some of your questions regarding this illness and the judgments you make regarding the character of the people addressing this editorial.

  3. monkeykat

    monkeykat Member

    We know who the dummy is; who's the ventriloquist?

    Your flippant five-sentence condemnation of the CDC for publicizing what it perceives as a widespread and growing threat to public health has as its whole foundation an unnamed "some" who feel that the CDC's priorities are misplaced. I would like to know what apparent minority possesses such credibility that the News-Herald can unqualifiedly lean its full weight on opinions that fly in the face of our highest authority for disease surveillance. Don't these august personages deserve to be named?

    With all due respect to the N-H, what you are practicing is not journalism. It's just not that serious.
    Peter, Westlake, OH
  4. monkeykat

    monkeykat Member

    CFIDS - Take the Time to Understand
    After reading the Brickbats relative to CDCs funding for CFIDS education, I thought that the writer must either be the most insensitive person in the entire world or purposely wrote such an insensitive statement to get a "rise" out of people who have lost their entire life to this terrible, painful, misunderstood disease. Even though neither is a good reason, I hope it was the latter because it is hard for me to imagine someone so insensitive to others' suffering.

    Regardless, I would encourage everyone to get the facts about this debilitating disease that can leave its sufferers as an empty shell living close to death without actually dying.

    The first website is developed and managed by the CFIDS Association of America. The second is the website for the Center for Disease Control - - specific to CFS.

    Michelle - You are welcome to contact me at any time if you'd like to learn more or receive answers to your questions. I have not suffered from the disease but have watched my sister struggle for the past 5 years with it. I watched her go from a healthy, intelligent, hard working, very involved, extremely active person with hopes of having children - - to a person who lost her health, her job, her dream of having children, her friends, her self-esteem and is about to lose her home. On a good day, she is able to function at low levels inside of her home and a bad day - - cannot get out of bed experiencing such extreme pain that it would break your heart. I would only ask that you "walk a mile in someone's foot steps" before passing judgement. These individuals may appear mean - - yet I would suggest that they are actually frustrated, tired, physically sick, emotionally fed up and, unfortunately, driven to anger, when - - once again - - attacked and belittled and told that their illness "is just not that important".

    Everyone deserves respect. Those fighting illnesses and disease not only deserve respect but NEED healthy individuals who will take the time to understand then advocate for them! I choose to advocate - - I hope other healthy individuals will make a similar choice.
    Patty, Greensboro, NC

  5. monkeykat

    monkeykat Member

    Do you really know?
    Have you ever met anyone with CFS? Obviously not. This is a terrible illness for people to have. They lose their quality of life as they know it...just like someone with cancer, heart trouble etc. They not only have to fight physicial but all of the emotional that goes with it...the feeling worthless, the what is wrong with me, the lack of ability to function on a normal level. Perhaps you need to "research" by visiting with people that have CFS and then maybe your heart would be human!
    Connie, Parma, Ohio
  6. monkeykat

    monkeykat Member

    Who should we kick next?

    Brickbat: The earliest sense of brickbat, first recorded in 1563, was "a piece of brick" thrown at others in the hope of injuring them. For those suffering from chronic fatigue syndrome, you have done a job worthy of any bully. You should be proud. "Let's all beat the hell out of the people with CFS... (wink, wink) they're too tired to fight back."

    We need those advocates and politicians to do the job when our health system falls grievously short. Similar to debates about Lyme's Disease, I suspect that the "many experts" to which you allude are either seriously misguided or tied up with insurance companies. If your goal was to identify government waste, then take better aim next time. Somebody got hurt.

    Dennis, Manlius, NY

    Like I always say,

  7. monkeykat

    monkeykat Member

    There are over 1 million of us who have CFS in the USA and millions more world-wide.

    If each of us got only one person to advocate for us, then that would be 2 million in the USA and many more millions world-wide.

    Could you imagine if news papers and other sources of misinformation that mock us got 2 million or more responses from us!

    Just imagine!

    Keep hope alive, Monkeykat
  8. Shalala

    Shalala New Member

    I think these conditions have been around a long time but were never given a "name" or paid much attention to. Let's face it ... 30-50 years ago you rarely went to the DR unless you had a really bad sore throat, were pregnant, or something like that and there were very few "specialists".
  9. monkeykat

    monkeykat Member

    Hi Shalala,

    yes, I agree. I bought the DVD "I remember me". It's really great and shows people back in the 1950's who had the illness. There were various outbreaks of it that were given little to no regard by the CDC.

    I agree that people didn't go to the doctors much 50 or more years ago; however, the people with CFS were trying to get recognized and they got swept under the rug.

    I can't look back and see signs of this illness from early on in life and my health steadily fell apart over the years. I thought maybe it was how everyone else felt or it was normal b/c doctors were ignoring what I'd tell them.

    Thanks for your response:)
    Keep hope alive, Monkeykat

[ advertisement ]