WE ARE AN ARMY...BY #'S..... WE.... DESERVE BETTER...

Discussion in 'Fibromyalgia Main Forum' started by BILLCAMO, Aug 1, 2003.

  1. BILLCAMO

    BILLCAMO New Member

    HOW MANY OF US HAVE COMPUTERS ?????? THERE ARE AT LEAST 500,000 OF US FIGHTING CFS/CFIDS & FM/FMS..... MORE LIKELY MORE THAN 6,000,000...... IN NORTH AMERICA .....TRYING TO DEAL WITH THESE & RELATED DD'S..... IF WE WERE FIGHTING PROBLEMS WITH ALCOHOL OR DRUGS , THERE ARE LOTS OF PROGRAMS THAT WOULD HELP US.... JUST GETTING THROUGH EACH DAY IS A CHALLENGE....... WE NEED RECOGNITION & UNDERSTANDING. WE DON'T NEED TO BE TOLD AGAIN..." IT'S ALL IN YOUR HEAD "... JUST BECAUSE THERE IS NO DEFINITE TEST..... BEFORE I ACQUIRED??????? THESE DD'S , I FELT I WAS AT LEAST SEMI-INTELLIGENT. MAYBE THIS IS A GOOD IDEA OR MAYBE NOT...YOU ALL TELL ME..... IF MOST OR ALL OF US EMAILED OPRAH , MONTELL & RELATED SHOWS , I DON'T SEE HOW WE ALL COULD BE IGNORED. I ONLY HAVE THE ENERGY TO PRESENT THIS IDEA. MAYBE SOMEONELSE HAS THE ENERGY TO ORGANIZE.....PERSONALLY , I HAVE PRESENTED THIS IDEA TO DR. PHIL & MONTELL WILLIAMS....VIA EMAIL.... SUGGESTIONS HAVE BEEN ACCEPTED , BUT NO SHOW SO FAR... MAYBE , WE CAN ALL HELP OURSELVES. BILLCAMO. PS/EDIT... I HAVE NO DESIRE TO APPEAR ON ANY SHOW..... MY ONLY HOPE IS TO HELP OTHERS & THEREBY POSSIBLY MYSELF..... SUPREME BEING/GOD BLESS ALL !!!!!!
    [This Message was Edited on 08/01/2003]
  2. BILLCAMO

    BILLCAMO New Member

    YOU ARE RIGHT..... THIS HAS BEEN " DONE TO DEATH"..... I THINK I SAW YOUR POST... I DON'T THINK I RESPONDED.... YES , I AM A NEWBIE..... THAT MIGHT BE PART OF THE REASON I REFUSE TO QUIT..... ON MY "NON-POSITIVE DAYS " I TEND TO "LURK"..... BUT I BELIEVE THAT YOU & I STILL HAVE A GOOD IDEA....AS I SAID IN MY POST.... I ONLY HAVE THE ENERGY TO POST THE IDEA....NOT ENOUGH TO ORGANIZE...... I HAVE TRIED THIS BEFORE , BUT NOT ON THIS SITE..... I DON'T KNOW IF YOU HAVE HAD TO FIGHT THE #1 KILLER W/CFIDS OR FMS...... I HAVE.....OBVIOUSLY , I HAVE'NT GIVEN IN.... I'M STILL HERE. IF THIS DOES MANAGE TO GET OFF THE GROUND.... I DON'T CARE IF I GET CREDIT OR NOT...YOU CAN TAKE IT ALL !!!!! WE ARE ALL "FIGHTERS" OR WE WOULD'NT STILL BE HERE..... FRUSTRATION IS ONE OF THE BIGGEST CHALLENGES FOR ME W/THESE DD'S. BUT IF WE GIVE UP , WE ALL LOSE. YOU & I KNOW THE #'S ARE THERE FOR POSITIVE RESULTS. JUST TAKES THE CORRECT APPROACH.... I FEEL & HAVE FELT YOUR FRUSTRATION..... IF I OFFEND , PLEASE EXCUSE MY POSITIVE ATTITUDE. TO BE HONEST , IT IS NOT ALWAYS THERE. BILLCAMO.(YOU CAN'T SEE ME.. CAMO.)
    [This Message was Edited on 08/02/2003]
  3. MJJBunny

    MJJBunny New Member

    I have always believed that we need a famous named person to step forward and state that they have our illnesses. And I don't mean Cher.

    Look at what Michael J. Fox has done for Parkinsons and Montel has done for MS. It has brought knowledge and understand of their medical problems out in the open.

    The Golden Girls program did an episode on CFS because I believe one of their writers had it.

    I have spent the last several years pretending that I'm just like everyone else because I can hide behind my computer. Why bother trying to explain when no one really takes the time to understand.

    I think recognition will come when attention is brought by a big named person. However, if an email campaign is decided, count me in.
  4. COOKIEMONSTER

    COOKIEMONSTER New Member

    I am actually rolling on the floor right now. Thanks for your sense of humor.

    Love,
    Cookiemonster
  5. BILLCAMO

    BILLCAMO New Member

    WE ARE ALL FAMOUS......... EVERY TIME WE PULL OUT A CREDIT CARD...... SOMEONE WANTS OUR AUTOGRAPH..... THE ONLY ONES THAT CAN & DO UNDERSTAND THESE DD'S , ARE THE PEOPLE WHO HAVE THEM. I DON'T KNOW IF THE "ARMY" IDEA WILL WORK OR NOT..... , BUT AT LEAST I'M TRYING..... THANKS FOR BOTH NEG. & POS. COMMENTS...... BLESSINGS , BILLCAMO.
  6. BILLCAMO

    BILLCAMO New Member

    THANKS FOR THE WELCOME & SUPPORT..... I KNOW WHAT YOU MEAN...... I'M HAVING A GOOD DAY TODAY...... MY BELLY BUTTON DOES'NT HURT...... HOPE YOU HAVE BETTER DRS. WHERE YOU ARE IN WASH.( WHOOPS,EDIT, BESIDES YOU) !!!!!! NOT MANY IN YAKIMA. GLANCED @ YOUR BIO. I DON'T KNOW IF THE ORIGINAL MADWOLF IS STILL WITH US OR IF YOU STILL HAVE CONTACT WITH HIM....... IF HE IS & YOU DO...... TELL HIM HOWDY FROM ANGRY ELK !!!!!! TAKE CARE & KEEP YOUR ARROWS STRAIGHT...... BILLCAMO.
    [This Message was Edited on 08/03/2003]
  7. BILLCAMO

    BILLCAMO New Member

    IT'S NOT UP TO ME OR YOU IF THIS EMAIL DEAL WORKS OR NOT. IT WILL TAKE SOMEONE TO ORGANIZE THE EFFORT & MOST ....IF NOT ALL.. OF US ON THIS SITE TO SEND TO THE SELECTED CELEBRITIES OR CELEBRITY EMAILS. I AGREE WITH YOU THAT THIS WOULD BE THE PERFECT TIME BECAUSE OF SEABISCUIT..... I STILL HAVE A COPY OF THE EMAIL I SENT TO MONTEL. IT NEEDS POLISH & INPUT FROM OTHERS...... MAYBE IF WE HAD A COMMUNITY LETTER TO SEND OUT , WE ALL COULD EMAIL TO WHOMEVER.... FOG COMING BACK..... TAKE CARE !!!!! BILLCAMO.
  8. littlesquawl

    littlesquawl New Member

    I do agree with you'We got to start some where it's about time that all that's on this message board start get,Started to write to the congressman now,Someone get the e-mail address and put it on a message and everyone start writing now,We our surly going to get somewhere,After everyone writes to the congressman,and nothing happen's than we can go to other resourses.So let's get started.
    Let's all join hands across the world.Let;s fight for our right's.And we al;l can rejoice together.We will finally get help for our disease.And get the proper medicnes we need to help and doctor's who will need to learn about our diseases,Come and join us now.littlesquawl
    [This Message was Edited on 08/05/2003]
  9. MissRachel

    MissRachel New Member

    Hi Billcamo,

    Jellybelly did something simular back in June. If you do a search on Bio's you'll she about 100 posts about everyones life with FM/CFS. I'm not sure what the out come for her campain was, but none the less it's a good start.

    Hats off to you,

    Rachel
  10. 99

    99 New Member

    I'm new here. And willing. Have been fighting this alone for sooooo long, it would be good to finally be able to DO something! There IS strength in numbers...

    This Laura gal seems to be willing to discuss her FM. If anyone has any ideas how to email her, I'd be happy to.

    Writing our congressmen is a good idea, too. And talk shows. Just because something has been done before is no reason to give up trying...

    The greasy wheel gets oiled first, yes?

    Gail:)
  11. BILLCAMO

    BILLCAMO New Member

    A LOT OF "SQUEEKY WHEELS" ON THIS SITE. IF WE DIRECT OUR SQUEEKS TO THE CORRECT EARS , WE WILL GET GREASE !!!!! IF WE ALL RESPOND , I DON'T SEE HOW WE COULD BE IGNORED. THERE ARE A LOT OF US. I STILL HAVE A LETTER THAT NEEDS POLISH & INPUT FROM OTHER PWCS , BUT I DON'T THINK THIS IS THE CORRECT PLACE TO POST THE LETTER. INPUT WOULD BE APPRECIATED. THANKS ! BILLCAMO. PS. ONE OF THE REASONS I HAVE SENT EMAILS TO MONTEL WILLIAMS IS THAT SOME OF US HAVE ALSO BEEN DIAGNOSED W/MS...... & OTHERS OF US I FIGHTING MS/SYMPTOMS W/O DIAGNOSES...... I THOUGHT THAT MIGHT GET HIS ATTENTION........
    [This Message was Edited on 08/05/2003]
  12. kmelodyg

    kmelodyg New Member

    Good for you!!!!!!! I love your positive attitude! Please take some time and read my latest posts. I have been working very hard lately at becoming an advocate for FMS/CFS. I was on the local news yesterday in fact. If you would like, we could combine forces. E-mail me sometime if you would like to work together on this. God Bless YOU!!!

    Lots of Love,
    Kathryn
  13. BILLCAMO

    BILLCAMO New Member

    I HAVE TO MAKE THIS QUICK , SINCE I'M STILL IN THE MIDDLE OF A STORM..... IF YOU HAVE'NT ALREADY , CONTACT JELLYBELLY... POST ABOVE YOURS..... SHE MAY HAVE INFO. & INPUT I DON'T HAVE...... I HAVE NO PROBLEM WITH COMBINING FORCES , BASICALLY BECAUSE IT WILL TAKE MOST OF THE FORCES ON THIS SITE TO MAKE A GO OF AN EMAIL THRUST. I GLANCED THROUGH YOUR BIO , & NOTICED THAT YOU HAVE ALSO USED THE TERM "BRAINDEAD" . RIGHT NOW I AM APPROACHING B/D..... I DID WRITE DOWN YOUR EMAIL ADDRESS..... YOU MAY WANT TO CONSIDER TAKING IT OFF YOUR BIO. UNTIL I GET A REPLY FROM MIKIE & SHIRL..... THERE COULD BE DISADVANTAGES TO HAVING EMAIL ADDRESS THERE..... I MAY "LURK" AWHILE ON THE SITE ,BUT THE FOG IS DEFINITELY ROLLING IN...... BLESSINGS & TAKE CARE !!!!!!!!!! BILLCAMO. BRAINFOG CAUSED DELAYED REACTION..... PS. IT MAY BE A GOOD IDEA TO CONTACT ALL OF THE PEOPLE WHO HAVE RESPONDED TO THIS. I SENSE THAT CRAFTYJODY IS FRUSTRATED (HAVE'NT WE ALL BEEN....) ,BUT I FEEL SHE WOULD HAVE SOME VALUABLE INPUT ALSO... I'M SURE EVERYONELSE WOULD ALSO.... CAN'T REMEMBER ALL WHO HAD COMMENTS , BUT I DO THINK THAT MADWOLF WOULD ALSO BE A POSITIVE ASSET.... SORRY ABOUT THE RAMBLING.....I HIT THE WALL.......BYE....
    [This Message was Edited on 08/05/2003]
  14. Momskelleygirl

    Momskelleygirl New Member

    But it seems that no one seems to think my ideas are valid.
    I tooo have posted about an e-mail to educate campaign, but mine includes national and local news networks. I also agree that Montell is a good idea, I hae been trying to write him but gan't get through (something about my computer), so tomorrow I am going to library to send e-mail to him.
    I also agree with freshair, and sending letters to your congressmen.
    I just Feel that if a person writes one masteer letter, then you just change the adress, and greeting, and send the same letter to local and nationl news, montel or oprah,and government officials.
    This way you send out letters to as many people as yu can with as little work as possible.
    So hopefully, BILLCAMO and others will include me when you get started seriously doing this.
    fFor now, I am already writing my fingers off.
    Kelley
  15. Caralissa

    Caralissa New Member

    I am willing to do anything I possibly can. Let me know whats up. We are a strong force when we stand together.
    Christina
  16. BILLCAMO

    BILLCAMO New Member

    THE BRAIN FOG HAS GOTTEN SO BAD TONITE THAT I PROBABLY SHOULD'NT RESPOND........ BUT I'M STUBBORN....I KEEP TRYING TO MOVE FORWARD....... OF COURSE YOU ARE INCLUDED IN ANY ACTION...... AS IS ANYONE ELSE ON THIS BOARD..... PLEASE SAVE YOUR FINGERS ...... OTHERS & I HAVE TRIED THE 1 PERSON APPROACH...... IT DOES'NT SEEM TO WORK UNLESS YOU'RE FAMOUS..... & THE ONLY TIME SOMEONE WANTS MY AUTOGRAPH IS WHEN I PULL OUT MY CREDIT CARD...... MY OPINION IS THAT THE ALL OF US / ARMY IDEA IS SLOWLY MOVING FORWARD..... I KNOW HOW DIFFICULT IT IS TO BE PATIENT..... BUT WE MUST BE.... EFFORTS OF QUALITY TAKE TIME...... MY FEELING IS THAT IF THIS EFFORT IS GOING TO BE SUCCESSFUL...... IT WILL TAKE BOTH QUALITY & QUANTITY....... BOTH OF WHICH WILL TAKE TIME..... MAY THE SUPREME BEING (MY CHOICE OF NAMES...GOD) BLESS US ALL !!!! AND EVEN THIS STATEMENT MAY OFFEND ATHEISTS & AGNOSTICS. NO WAY TO KEEP EVERYONE HAPPY..... TAKE CARE !!!!! BILLCAMO.
  17. Lexied

    Lexied New Member

    I was reading your posts and feeling grateful that you are so fired up about making more people aware of FM/CFS! It would be great if someone famous or well known to be a "Spokesperson" for this invisible monster we live with. I would love to be a part of any kind of movement toward that end! Thank you also for your kind words & your prayers!

    Welcome to the Board!!! I'm new too!

    God Bless You - Lex
  18. 99

    99 New Member

    Laura Hillenbrand made it to Whitehouse 08/04/03 02:44 PM

    This is good!

    History Programs Leadership Annual Reports What's New Testimonials Support Us
    Laura Hillenbrand Honored
    The fight against chronic fatigue syndrome (CFS) hit the silver screen on July 28, when hundreds of celebrities, politicians, scientists, Association benefactors and people with the illness attended a special Washington, DC showing of Seabiscuit, a major motion picture starring Tobey McGuire, Jeff Bridges and Chris Cooper.
    The event, organized by The CFIDS Association of America, featured a rare public appearance by Laura Hillenbrand, award-winning author of Seabiscuit: An American Legend, the book on which the movie is based. Ms. Hillenbrand wrote her highly-acclaimed book while suffering from CFS.
    Her success, and her willingness to speak out about her 16-year battle with the illness, has helped the cause immensely.
    "It's an inspiring story," CFS lobbyist Tom Sheridan told the crowd. "The jockey is inspiring. The horse is inspiring. But really the most inspiring story is the author."
    Chaired by Tony Kornheiser, star of ESPN's "Pardon the Interruption" show and ESPN Radio's "The Tony Kornheiser Show," the screening -- as well as a special tea held in Ms. Hillenbrand's honor the day before -- raised more than $38,000 for the Association.
    Other special guests attending the benefit were Bob Costas, Diane Rehm, Andrew Beyer, Arch Campbell, Michael Wilbon, Dr. Julie Gerberding, Dr. William Reeves, U.S. Senator Harry Reid and Kim Kenney, Association President & CEO.
    But the star of the night was Laura Hillenbrand.
    A grateful crowd erupted with applause when Ms. Hillenbrand entered the room. Laura Hillenbrand said she was deeply moved by the gathering. "Thank you so much. To Kim Kenney, to The CFIDS Association, and to everyone who is working to find a cure for CFS."
    800,000 U.S. adults and countless children suffer from CFS, a serious and complex illness characterized by incapacitating fatigue, memory and concentration problems, severe pain and body weakness and persistent flu-like symptoms. Despite over a decade of research, the cause of the illness is not yet known, there is no definitive diagnostic test and treatment is aimed primarily at symptom relief.
    The CFIDS Association of America is the nation's leading non-profit organization committed to conquering CFS. Since 1987, the Association has invested $14 million in education, public policy and research in its efforts to bring an end to the suffering caused by CFS.
    CFS is also known as chronic fatigue and immune dysfunction syndrome (CFIDS).
  19. 99

    99 New Member

    I think your ideas are wonderful... probably because you said so much better, what I was trying to say, LOL. We need to be as efficient as possible, and why duplicate work?

    I have read that politicians don't pay specific attention to what is said, anyway... they sorta just keep a tally of comments received... so that a simple postcard will suffice.
    Like, "I am a Fibromyalgia sufferer and urge you to support funding for research."

    I think that increasing public awareness is up to us, spearheaded by celebrities who will speak out on FM.

    Gail
  20. BILLCAMO

    BILLCAMO New Member

    THAT'S THE BEST I CAN DO TONIGHT....... I HIT THE "WALL" TODAY & IT FELL ON ME , BUT I CRAWLED OUT OF THE RUBBLE GOING FORWARD.... IF WE DON'T WORK FOR OURSELVES..... WHO WILL ?????? AGAIN..... THANKS FOR THE POSITIVE & NEG. INPUT ..... BLESSINGS & TAKE CARE !!!!!!! BILLCAMO.