MAY 12 IMPORTANT! AWARENESS DAY

Discussion in 'Fibromyalgia Main Forum' started by cerise, May 11, 2009.

  1. cerise

    cerise New Member

    It has been a LONG time since I have been on this site. Tomorrow is May 12th, International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). Since it's inception in 1993 by Tom Hennessy, it has always been an extremely important day to me personally, as it represents the history and the future of ME (CFIDS) and FM.

    It's almost 8pm and I just got out of bed. Today is a good day, and therefore, with whatever energy and clear head I can muster, I MUST carry on Tom's work by getting some kind of message and reminder out to those who care!

    So many people have come and gone in the years since I first signed onto this board. The names have changed, but the stories and the pleas are all the same! Doesn't that say something in and of itself? Where have we all gone? Does anyone wonder? Does anyone care? If I ignore you, will you just go away? I wish I could say that we all got better and we are just shallow people who forgot those we left behind when we got better. Nothing could be further from the truth!

    Since first being diagnosed in 1987, I didn't get better, I didn't go into "remission", instead, I got worse. By 1993, I was housebound and fully disabled. Since joining my first support group in Sacramento in 1988, the only changes I have witnessed is the realization that although this is not considered a "progressive disease" more and more people are NOT getting better and are in fact, like myself, getting worse. None of the issues and problems we addressed in 1988 has changed from those in 2009.

    The same problems, issues and concerns I became aware of starting with my diagnosis in 1987, pertaining to: the name of this disease, the cause of this disease, the problems with CDC (who invented the name CFS in 1988), the problems with Social Security disability, issues with primary care physicians, lack of support and treatment, are EXACTLY the same in 2009!!!!!!!!!!!! That's 22 YEARS people!!! In 4 more years, that will be HALF my life!
    That is why MAY 12 - INTERNATIONAL AWARENESS DAY - MUST be remembered, recognized and supported by our own community.

    16 years ago, Tom Hennessy started a movement that is recognized around the world! Tom didn't get better, he got worse. Tom's family refused to support him unconditionally as he had become a burden on his family. Maybe, if I ignore you, you'll go away? Well, like so many of others, they did and he did.

    Out of sight, out of mind? Sorry, we are still here. But now, more than ever, we need others, like you, to be our voice, to carry on our passions, to see that neither we, nor this disease are swept under the rug. If we could only get one-tenth of the attention and concern that the media and this country have given to Swine Flu!

    TUESDAY, MAY 12TH is the day to let the world, and Awareness Day founder, Tom Hennessy, know that neither he, nor ME (CFIDS) and FM will be ignored and swept under the rug. Do what you can in your community, with your health care professionals, media, friends and relatives to educate them about this disease, injustices bestowed among those afflicted and the need more than ever for creditability, research and treatment. This disease is not a joke (except on TV shows)!

    May 12th is just one day. But now that you know about it, it's history and its importance, what better time than now to get started to carry on Tom Hennessey's work, by making May 12th, 2010 a day to be remembered and recognized world-wide. There are so many things that ANYONE could be doing from just their computer at home to be advancing recognition of May 12th International Awareness Day, locally, regionally and nationally.

    You can start today, to make sure that this time next year, May 12, 2010, when America watches the evening news, reads their daily paper or internet news page, opens a nationally recognized magazine, turns on their radio or looks at their calendar, they too will know that May 12th is Awareness Day for Chronic Immunological and Neurological Diseases (CIND)!! After all, it's not called "Awareness Day" for nothing!

    I know this is probably too long for most, but take from it what you can. Read it again later and think about what you can do. Do what you can today, so that you too, won't become like Tom Hennessy, housebound, broke, and alone and disowned by family! Way too many of us are existing, not living our lives!

    May 12th is the day to let the world know that PWCFS are real and so is this disease!!! We may be sick, we may be disabled, we may be broke; but we are not going to take it anymore!!!!!!!!!!!!!!!!!!!!!!!!!!

    I have enclosed my last posting on this site regarding Awareness Day from 2007.
    Thank you for your time and your support!

    Linda - Eugene, OR

    P.S. The perfect May 12th Awareness Day present? A copy of the book "Osler's Web" by Hillary Johnson. Get educated, get mad, get active!

    5/11/07 12:08 AM IMPORTANT INFO RE MAY 12TH - AWARENESS DAY
    Saturday, May 12th will be the 14th annual International Awareness Day.
    In 1993, Tom Hennessy, designated May 12 as International Awareness Day for Chronic Immunological and Neurological Diseases (CIND). Tom chose the date of May 12th to memorialize the birth date of Florence Nightingale, the English army nurse who inspired the founding of the International Red Cross. Nightingale contracted a paralyzing, CIND-like illness in her mid-thirties and spent the last 50 years of her life virtually bedridden. Despite her illness, she managed to found the first ever School of Nursing.

    The purpose and intent of Awareness Day is a day for activities in a worldwide effort to increase awareness of CIND. Awareness Day seeks to help patients and organizations educate the general public, healthcare professionals, government officials, and legislative bodies.
    I was first diagnosed in Northern California (outside Lake Tahoe) in August 1987. I was 30 years old and although I didn't know it at the time, my life would and could never be the same again. I tried to learn as much as I could, and as a result have followed this DD from the day it was created as "Chronic Fatigue Syndrome" by the CDC.

    The questions I have and the answers I received have not changed after all these years. I see the same exact questions and problems regarding Social Security Disability and primary care physicians year after year after year. I have watched the birth and death of many advocacy and support groups. Of those associations and organizations still in existence, I hear the same promises, the same ideas, the same problems, the same vicious circle and the same players.

    The first time I really felt hope that there were advocates that were really going to accomplish something positive, was when I learned about May 12th - International Awareness Day. I wrote and received blue ribbons and petitions. I still have those ribbons. Since then, I have come to know the founder of May 12th International Awareness Day. Many of you may recognize his name, TOM HENNESSY, & the organization he founded: RESCIND (Repeal Existing Stereotypes about Chronic Immunological & Neurological Diseases).

    Despite all the dog and pony shows and false hopes surrounding Awareness Day, I have watched the participation, statewide & nationally, drop drastically each year to almost nothing. What started out with a push to have state and local governments declare May 12 Awareness Day by proclamation has not grown or spread but almost dead. This is by any means NOT the fault of PWCFS, as that is the nature of this DD. PWCFS need and rely on advocacy groups more than anybody because we can't (although we try) to do it ourselves, which is the worst thing we can do!

    Getting back to Tom Hennessy. Besides an occasional reference to his name in relation to being the founder of May 12th Awareness Day, I see no mention of his name by any of these advocacy and support groups as we approach May 12th. He's not a stranger to these people. Many knew him and worked side-by-side with him supposedly advocating on our behalf. This disease did Tom in and rendered him totally disabled and unable to continue his work. You would think those that are not stricken down would follow up on how the founder of Awareness Day is doing, but they haven't. Not for years. Shame on you!

    Just because someone has this DD doesn't mean they should be discarded and ignored. You don't abandon someone in their hour of need. People shouldn't have to ask for help, it should be offered. How can anybody or any organization say they understand this disease and claim they want to help those stricken down but instead ignore the very person who founded Awareness Day? I find this to be a giant hypocrisy, and it's one of many. Don't keep telling me to have hope and things are better. Actions speak louder than words.

    It saddens me that once again May 12th is here and I can't do anything about it. This is the most I can do. That's more than I can say for Tom. And don't keep asking me and others like me for more money. Many of us have gone from prince to pauper with no visible means of support as our condition gets worse and we get older. I still have the same problems with doctors, social security, etc. that I had 20 years ago.

    Don't tell me, show me, where the progress is. Don't tell me that I need to be a grass roots advocate for my cause as I read your glossy newsletters and pretty websites that are just window dressing to request money. What is being done for those who seriously need it? NOTHING! When myself and others seek medical treatment in this day and age and the doctors and nurses STILL don't know what CFS is or how to deal with it, then progress has not been made. When doctors refuse to acknowledge the existence of this DD because there is no medical test for it, progress has not been made.

    Saturday is Awareness Day. We are not Aware. There is only person out there who seems to get it and that's Hillary Johnson (Osler's Web). Until the advocacy groups start taking follow-up action necessary to combat what Ms. Johnson's book reveals, nothing is going to change. It's the same players, the same questions and the same problems that existed when I was first diagnosed in 1987.

    For those of you who can still do something, I urge you to take action. If you don't, you may very well find yourself where Awareness Day founder Tom Hennessy is right now. Frustrated, disabled, confined to bed, in pain and unable to do anything to keep May 12th alive.
    Best of luck to those you suffering with this DD - you're going to need it! Keep informed and inform others!

    Linda - Eugene, Oregon

    [This Message was Edited on 05/12/2007]
  2. kjfms

    kjfms Member


    I find it very sad that no one here has responded to this message. I see no mention of Awareness Day on the first two pages. I come here less and less...

    This used to be an important day here...

    kjfms
  3. sweetbeatlvr

    sweetbeatlvr New Member

    i'm going to put a blog about it on my MySpace page.

    i would like to think if enough people voiced their concerns and opinions, more could be done for those of us who suffer un-noticed (by most).

    do what you can.=)
  4. hatbox121

    hatbox121 New Member

    I was unaware of an awareness day. Thanks for posting this!
  5. 3gs

    3gs New Member

    I had no idea about this.

    Iam so new to computer do you know where to go to send info or letters?

    thanks for this
  6. Debra49659

    Debra49659 New Member

    Last year I was interviewed for a local newspaper...the subject; living with FM and how it has affected my life.

    This year....our local support group is going to have a booth in the downtown area and answer question about FMS/CFS and pass out information....we did this last year too!

    Even little contributions count; an FM or CFS bumper sticker, a lapel pin...all of these count as a way we can in our own way contribute to spreading the word about FM/CFS.

    Deb
  7. lynncats

    lynncats New Member

    Hi Deb, where would one go to get a bumper sticker for FM? I would love to have one for our car to show the world, yes I'm a FM fighter, and more people should be aware of our daily living problems/struggles. Take care!!!!!

    Cerise: Thanks for posting that info, I wasn't aware of this day either. God Bless!!
  8. Debra49659

    Debra49659 New Member

    Here's a couple of good sites...have fun, some are pretty funny.

    http://bumperstickers.cafepress.com/fibromyalgia

    http://www.zazzle.com/fibromyalgia+bumperstickers

    They have tee-shirts and all kinds of stuff:)

    Deb
  9. AuntTammie

    AuntTammie New Member

    While this is sort of moot at this point - people have now responded, I wanted to point out that the original post was only put on here fairly late last night (& for some reason it didn't actually show up at the time it says, bc I was on here later than that & it was not here).....and your response is early the next day (only 9 hours later), so people probably did not have a chance to respond....and a lot of us with ME are not even awake in the morning....so while I know what you mean about wanting lots of responses to an important topic, you have to give people (esp sick people) more time to respond

    personally I barely made it out of bed today, but when I am up I use every opportunity possible to educate people and spread awareness (not just on this day, although I am happy that this day exists)
    [This Message was Edited on 05/12/2009]
  10. lynncats

    lynncats New Member

    i am going to check this out a little later this evening.....gotta watch dancing with the stars first. Can't wait to see the sites, Thanks again Deb, we all need a little fun in out LIVES.

    Lynn
  11. lynncats

    lynncats New Member

    went to the sight and LOVE it. Thanks a bunch!! My husband is like, darn what are you going to order, LOL.. (I truly believe he is understanding more each day). I can't wait to order a few things. Everyone needs more awareness of this dd.

    Take Care!!

    LYNN
  12. lynncats

    lynncats New Member

    OK, just gotta ask, what kind of dog do you have, he is beautiful!!
    LYNN
  13. over50

    over50 New Member

    Cerise,Thank you so much for reminding us of "Awareness Day" and taking the time to write such an excellent description of how it is for so many of us. I know I need to do more for us,and I appreciate the sites listed.
    We are in this together.
    sending all a warm hug and hope
  14. cerise

    cerise New Member

    As always, thanks for your support throughout the years! I don't know where we would be without year other to get us through this DD!

    I know you do what you can and that is super!

    When you think about it, we're "aware" 365 days a year (unless we're having brain fog)!!!!!!!!!
  15. kjfms

    kjfms Member


    Wow!


    I was only making an observation about how I felt. I didn't mean anything bad but apparently I didn't word my post good enough for you.


    I apologize if you think I was putting anyone down because I wasn't.


    I didn't even look at the time of the post.


    For the record I am sick too!


    I am sorry but I find your post to me a bit hurtful in implying that I haven't any understand of being ill - believe I truly understand, all to well, unfortunately.


    Again, I wasn't berating anyone. If it seemed that way I certainly apologize.

    I didn't say that I wanted "lots of responses". I said that I was saddened/surprised that no one had responded and that I didn't see any mention of the day on the first two (2) pages. I am also on EST so when I posted it was a little after 9:00 am here, I am sorry but... oh, never mind.


    kjfms


    [This Message was Edited on 05/15/2009]
    [This Message was Edited on 05/15/2009]
    [This Message was Edited on 05/15/2009]
  16. cfs_info

    cfs_info New Member

    Is not too soon to start planning for May 12, 2010.

    Join the "May 12th - International ME/CFS & FM Awareness Day" Facebook group and share your plans/ideas/events for May 12, 2010. See
    http://www.facebook.com/pages/May-12th-International-MECFS-FM-Awareness-Day/220534562160

    There are simple things listed you can do. Here's just one of them you can start today --

    If you don’t already have a Twitter account, create one. You can get started by following the following people on Twitter http://twitter.com/May12th and http://twitter.com/Killandra and then start sending out messages about ME/CFS. On May 12th send messages throughout the day ie “May 12th is International ME/CFS Awareness Day - #MECFS” Make sure to use hash tag #MECFS on all your postings to help make it a trending topic. You can also use Twitter applications like Hootsuite to set up a message in advance so they can be sent out on May 12th incase you’re not feeling well enough to send tweets that day. Look for more Twitter ideas from Andrea Martel at http://www.blueribboncampaignforme.org/Tweets_4_BRC.html Also you can become a dedicated ME/CFS twitter – see http://www.blueribboncampaignforme.org/Twitter_Volunteers.html
  17. cerise

    cerise New Member

    Now is the best time to start working on getting the word out about May 12th. Look online for proclamations that you have passed by your local city government as well as at the State level.

    What better way to pay tribute to Tom Hennessy, founder of May 12 International Awareness Day, than to make this May 12, 2010 the best one to date!
  18. AuntTammie

    AuntTammie New Member

    I didn't see your response to me back in May, but now that this thread was brought back up, I saw it and I have to say that I have no idea why you took my response so poorly. I was not by any means questioning if you are sick, or intending anythign whatsoever other than to encourage you that the thread might still get quite a few more responses - it just sometimes takes awhile bc we are ALL sick. I also was not at all thinking that your original post was meant to berate anyone. I was most definitely NOT implying anything about your understanding of being ill either - I was trying to encourage you & explain a possible reason why there had not been any responses when you first posted, and I was thinking that maybe since you said you come here less and less that overall response times had changed a bit from what you were used to

    .....Honestly, though, your response to me is at least as hurtful as you seem to have wrongly interpreted mine to be. I hope (and believe) that you did not intend for it to be that way and were just reacting out of your own hurt. You might have asked if I meant what you thought I meant, rather than just assume than I was being hurtful. I am truly sorry that my post was somehow misinterpreted as an attack. I still do not see why you thought that, but like I said, that was most definitely not my intention. I love the grp here and would never intentionally hurt anyone or suggest that one of us was not ill.

    You originally said, "I find it very sad that no one here has responded to this message. I see no mention of Awareness Day on the first two pages. I come here less and less...

    This used to be an important day here..."

    I replied, "While this is sort of moot at this point - people have now responded, I wanted to point out that the original post was only put on here fairly late last night (& for some reason it didn't actually show up at the time it says, bc I was on here later than that & it was not here).....and your response is early the next day (only 9 hours later), so people probably did not have a chance to respond....and a lot of us with ME are not even awake in the morning....so while I know what you mean about wanting lots of responses to an important topic, you have to give people (esp sick people) more time to respond

    personally I barely made it out of bed today, but when I am up I use every opportunity possible to educate people and spread awareness (not just on this day, although I am happy that this day exists)"

    Your response to that was, "Wow!


    I was only making an observation about how I felt. I didn't mean anything bad but apparently I didn't word my post good enough for you.


    I apologize if you think I was putting anyone down because I wasn't.


    I didn't even look at the time of the post.


    For the record I am sick too!


    I am sorry but I find your post to me a bit hurtful in implying that I haven't any understand of being ill - believe I truly understand, all to well, unfortunately.


    Again, I wasn't berating anyone. If it seemed that way I certainly apologize.


    I didn't say that I wanted "lots of responses". I said that I was saddened/surprised that no one had responded and that I didn't see any mention of the day on the first two (2) pages. I am also on EST so when I posted it was a little after 9:00 am here, I am sorry but... oh, never mind. "


  19. cerise

    cerise New Member

    My apologies for giving the wrong impression about Tom. Tom is very much alive & still in Florida the last I heard. I am respecting Tom's wishes & not discussing his personal situation as dire as it may be.

    I do know that Tom would be really bummed if May 12th were to fall by the wayside because of his lack of involvement & motivation. Since Tom has bowed out due to poor health over the years, May 12th has taken on other directions & lost a lot of initial purpose.

    On another note, I really hate to see anyone on this board verbally sparring with each other. The last thing we need is conflict amongst ourselves. Everybody has their own opinions & we don't always agree. Our cause & the problems we have run into over the past 20 plus years are proof of how friction can tear us apart. We are family. It's good to communicate & clear matters up. Do as I say, not as I do -- don't take anything personal!!
  20. cerise

    cerise New Member