MOCKING editorial makes REPARATION

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, Mar 2, 2007.

  1. monkeykat

    monkeykat Member

    Yeah!

    Prohealth had sent an email re: the Lake County News Herald in Ohio who released a mocking editorial on February 24, 2007.

    I posted a topic on this board called, "News Herald MOCKS CFS" and I reminded people on this board to respond to the News Herald.

    The News Herald has received 70 responses as of today re: this appalling editorial.

    I sent an email to the executive editor at the News Herald per the suggestion of Pam (PW7575) and I got a response today as follows...

    -----------------------------------------------------------
    Ms. Kraft,

    Thank you for taking the time to voice your opinion.

    I am sorry for your struggles with this devastating illness.

    I think your suggestion regarding The News-Herald taking a look at this illness and its effects is an excellent one. May I have a reporter contact you to share your experiences?


    Sincerely,
    Tricia Ambrose
    Executive Editor
    The News-Herald
    ---------------------------------------------------------

    MY QUESTION IS - what things should I be considering that I may not be thinking about?

    I want to represent us all to the best of my ability.

    Any suggestions?

    Thanks,
    Keep Hope Alive, Monkeykat
  2. LouiseK

    LouiseK New Member

    I think the CFSIDS Association does a really good job of walking the line in what they say about CFS as they are 100% politically motivated to further the cause of this disease. Perhaps reviewing their website would provide inspiration.

    One thing I think people do (including Ms. Seabiscuit) is talk too much about their personal story which can sometimes sound, on paper, trivial or unbelievable. However, speaking about large numbers of people, income and productivity lost and the devastation all CFS sufferers have in common may create a bigger picture and one more useful to the public.

    Last night my local news said "One in 150 children born in the US today have some form of Autism." The numbers really stuck with me. That's just an example . . .had it been a story of one sufferer it might not have gotten me thinking about the big picture.

    Good luck.
  3. Juloo

    Juloo Member

    I agree that speaking about the larger picture can be very effective. I myself cannot get out of my mind the snippet I once heard that there is an average of a $20,000 loss of income in a family where one of the adults has this issue.

    My husband, when I told him, didn't miss a beat -- he was sure it was at LEAST that for us, he said, and he's right.

    Families lose their income, businesses lose their workers, children 'lose' their parents, schools lose their volunteers, stores lose their customers, WE lose our trust, our friends and our place in our communities.

    That's a ripple effect that is hard to deny. As much as some would like to deny it, we are not islands.
  4. blkkat

    blkkat New Member

    boy you hit that nail right on its head. never thought about it that way but it is true!!!!! just one person can change a whole town, city, if their home bound and not out an about buying ,helping, doing their part like before they got sick!!! GOD BLSS- BLKKAT
  5. Lichu3

    Lichu3 New Member

    I sent them an e-mail as well and was uplifted by the responses not just from Ohio but from other states. See what we can do when we work together!

    I just read Phoenix Rising's summary of how to work with the media (google phoenix and cfs). While statistics are important, the media often need a "hook" to draw people into the story so telling your own story 50% of the time and 50% how it affects the nation would be great (emphasize the CDC's statistics on disability, cost, #s of people affected -- teaching taught me repeat, repeat, repeat is very important to nail a message down). Also if supportive family could be with you during the interview,they can also add another perspective.

    Also emphasize the need for a more research to lead to a TREATMENT.

    Thanks for speaking to the media on our behalf!

    P.S. I meant to put a clapping hand icon but it didn't work so consider the "moon" for the newpaper!
    [This Message was Edited on 03/02/2007]
  6. bunnyfluff

    bunnyfluff Member

    This DD affects as many, if not more people as polio, and 4x as many women as HIV and Breast Cancer, and gets 130x less money than the dental health program.

    Use the generalizations people can understand like "fatigue that chemo patients suffer", or "your worst flu that never goes away".

    Then also let them know how it has stolen our hopes, dreams, careers, healthy lifestyles, activites we enjoyed. How many of us were struck down in the prime of our lives, in the best shape of our lives. Like a cruel, cruel joke.

    Let them understand how our finances have been affected, and how we yearn to get back- and yet no matter how we try, it just can't happen.

    It's like being trapped in a foreign body with an active mind. You are still you, wanting all those things you enjoyed, but stuck with a body that won't let you move. In constant excruciating pain.

    That's all I've got.

    I'm glad to see they listened to what we had to say. To say my suffering was "just not that important".... well, what more can I say???
  7. maxwedge

    maxwedge New Member

    I agree with bunnyfluff. I do not have FM or CFS but what I can relate to and I think everyone can is the flu. If someone said to me, "Did you ever have a case of the flu that was so severe all your joints and muscles ached, where you felt like you had the body of someone 120 years old, where you were so sick and so exhausted that you could not even get out of bed, where you were so sick your life ground to halt, you missed work, stop socializing, did not want to talk to anyone etc, well we live like that all the time."

    I don't know if what I wrote above is accurate or not but you get my point. Most people could relate to that I think. Go get em.

    Best wishes,
    Max
  8. desertlass

    desertlass New Member

    I think one aspect of this illness that is poorly understood is the range of severity. The people who are well enough to meet with a reporter out for lunch or show up for a media event just don't look all that unwell at first glance. And then no one will see them collapse afterward. The people who are so unwell that they are living out of a car will never be noticed by anyone. They have been abandoned at every level.

    When I write a letter, or talk about this beyond those who already know my own story, I try to stress how communities are being robbed of vital people who were often the pillars, but one day just disappeared. We are all deprived of their contributions because their energy is now consumed by a daily struggle to just survive and cope. This is not just a sad story for individuals, it is a loss for everyone. It has claimed nurses, teachers, soldiers, engineers, scientists, authors, musicians, filmmakers, students, children-- all of them have had to adapt to functioning far below their previous capacity. Many have given up their careers entirely. We're losing a valuable resource of capable, inventive workers, because it often strikes us during our prime years. Many are still struggling to raise children while barely managing for themselves at times. Those who planned to care for aging parents are no longer able to honor that commitment. It affects every generation when the breadwinner or caregiver is struck down.

    I think we're all so anxious to prove that we're not lazy or crazy, that we unfortunately go to the other extreme and come across upbeat and composed. We can share our suffering and be positive at the same time.

    Hope any of this can be helpful, but mostly say what YOU want to be heard. That's why this opportunity came YOUR way, and not to someone else. Don't worry -- be yourself and you'll be great!
    Thanks so much!
    Lisette
  9. Slayadragon

    Slayadragon New Member

    I thought Prickles' video presented the info in a convincing way.

    Perhaps how she talked about fibro might have some relevance to how you/we might talk about CFS.

    Best, Lisa

  10. suzetal

    suzetal New Member

    Speak from your heart.That is really all you have to do.

    When you have something like this DD speaking from the heart comes easy.

    Also do not look your worst.Remember that a lot of us do not look sick .People need to be reminded of that.Its not how you look that counts its how you feel.

    Hugs
    And I am sure you will do just fine.
    Sue
  11. monkeykat

    monkeykat Member

    Hi everyone,

    Great advice from ALL of you!

    I have compiled your responses numerically & added a few things myself.

    I am already so weary from trying to use my energy to advocate for us this week.

    If anyone else has advice other than the advice given listed numerically below then please add that in another post.

    Please pray for me as I'm excited b/c I know that I can do a good job representing us but this is a bit overwhelming for me. If I was WELL then I could do a really good job for us...LOL. Catch 22.

    I am going to print off the suggestions and use my energy to research these things.

    I may need help compiling statistics? Is there anyone willing to do that for me?

    So to sum it all up:

    1) Review CFIDS Association website

    2) Review as many other media interviews and articles already done.

    3) 50% personal story (written out with key points ahead of time) and 50% facts/statistics (large #'s of people affected(e.g. 1 in ____ have CFS), disability, cost/income and productivity lost, etc. (eg. CFS which may revert to ME - affects as many, if not more people as polio, and 4x as many women as HIV and Breast Cancer (keep emphasizing 4x...did you hear that 4x as many, and CFS gets 130x less money than the dental health program). Use the generalizations people can understand like "fatigue that chemo patients suffer", or "your worst flu that never goes away".


    4) Focus on losses: Yours and others.
    Communities are being robbed of vital people who were often the pillars, but one day just disappeared. We are all deprived of their contributions because their energy is now consumed by a daily struggle to just survive and cope. This is not just a sad story for individuals, it is a loss for everyone. It has claimed nurses, teachers, soldiers, engineers, scientists, authors, musicians, filmmakers, students, children-- all of them have had to adapt to functioning far below their previous capacity. Many have given up their careers entirely. We're losing a valuable resource of capable, inventive workers, because it often strikes us during our prime years. Many are still struggling or not able to raise our children while barely managing for ourselves. Those who planned to care for aging parents are no longer able to honor that commitment. It affects every generation when the breadwinner or caregiver is struck down.
    It has stolen our hopes, dreams, careers, healthy lifestyles, activites we enjoyed. How many of us were struck down in the prime of our lives, in the best shape of our lives. Like a cruel, cruel joke. It's like being trapped in a foreign body with an active mind. You are still you, wanting all those things you enjoyed, but stuck with a body that won't let you move. In constant excruciating pain.
    What others lose as well...husbands/wives lose their spouse, families lose their income, businesses lose productive workers, children lose their parents, sschools lose their students and volunteers, stores lose their customers, WE oftentimes lose our lives, families, friends, church, and places in our community.

    5) Many people who don't have CFS/FM tell when they get the flu that they finally understand how I feel but when you have the flu you don't lose your whole life to it. It's miserable but you know that there is an end. With CFS, you don't know what is wrong with you, there is no one who can tell you what is wrong, you have no valid or realiable tests, no prognosis for the future, and no treatments that cure you or even relieve symptoms (in my case). "Did you ever have a case of the flu that was so severe all your joints and muscles ached, where you felt like you had the body of someone 120 years old,where getting out of bed feels like you are climbing Mt. Everest, where you were so sick your life ground to halt, you missed work, stopped socializing, did not want to talk to anyone etc, well we live like that all the time except that some of us have varying degrees of function during the day, some do not." Imagine this being your whole life.

    5) Find a hook! Find Phoenix Rising's summary and how to work with the media (google phoenix and cfs). Look up Prickle's video presentation.

    6) Be a broken record. Repeat, repeat, repeat!

    7) I have no supportive family in town but I do have a couple supportive friends who I will ask to come over to my home.

    8) Emphasize the need for more research to lead to valid and reliable tests and treatment for those of us who suffer.

    9) Different opinions on whether to look my best or not. Emphasize the fact that many of us do not look ill, some do and i can point out how my face was swollen and red but no one chose to notice the changes in my appearance...they discount it b/c they discount the illness. The fact remains that I have NO hairstyle since I got ill. I wear my hair in a ponytail b/c I couldn't get it cut for many years and my husband would cut it. I still don't have the resources daily to bathe and do something with my hair so it's often in a "greasy" ponytail and I wear pajamas most of the time unless I plan to go out (which I couldn't do for 2 years when I was housebound). When I was at my worst, my husband had to live with a wife who was dirty, stinky and greasy all the time and if I took a bath on a tub chair, I would end up bedridden/couchbound for a day afterward b/c I found out later I was allergic to the chlorine, shampoo, soap, etc. Remind them that there are people with CFS who are so unwell that they are living out of a car and they will never be noticed by anyone. They have been abandoned at every level.

    9) We try so hard to prove we are not lazy or crazy that we unfortunately go to the other extreme and come across upbeat and composed. I need to share our suffering but be positive at the same time.

    10) Remember to speak from my heart.

    And, you are all welcome. I am glad to sacrifice my energy for a few weeks in order to help us all out!

    THANK YOU TO ALL OF YOU who are able and take the time to advocate! I believe that we have to be persistent if we want results in life. Thank you for taking the time to respond to me and help me out. Your suggestions are invaluable to me!!!


    KEEP HOPE ALIVE,
    Monkeykat
  12. obrnlc

    obrnlc New Member

    hi monkeykat, haven't been able to read the entire thread, so if this has been brought up already--sorry!
    <P>But, i think it needs to be stressed how many of us were OVERACHIEVERS, the ones who worked full time and still volunteered to be the room mom, girl scout leader, chaperone on school trips and activities, etc.<P> Get the point across that we weren't always like this, but in fact were MORE productive than a majority of others. (i know when i did all of the above, many nonworking moms couldn't be bothered to even sort girl scout cookies, and many coworkers felt that they were too busy working to do other things, but from what i read about others on the board here--we were mostly all the chaperones, room parents, coaches, etc.) And we all still managed to have meals on the table, church activities, somewhat clean homes (mine was immaculate compared to what it is now!)<P> Thanks for this info, i think i will email the paper also. I sure hope this reporter follows through on the chance to talk to you!
    Good luck and have a great day--L
    Just remembered--excerpts from Julie geberding of the cdc's statement to the press would be great, also![This Message was Edited on 03/03/2007]
  13. sues1

    sues1 New Member

    Thank you for doing this.

    I know you will do a great job as I read your profile and you outlined all well there.

    Myself, I have times that I can not eat much after cooking as I am worn out from the act of cooking. I like to cook, but I need to lay down instead of eating. Sometimes I can not cut up my meat, too weak. So when at home I pick it up with my hands and eat such.

    I do not know why that came to mind, maybe it is because it is so demeaning and cruel to my soul. Like answering the door in your robe and it is 4PM and your hair is a mess and has thinned so much too. Our pride gets pushed aside, but it does matter to us. We just are doing the ebst we can.

    I am going to post about Dr. Dean EDell and his comments on CF and MCS. Just want to ensure that you see it.

    My comments are not necessarily ones to talk of, just thinking outloud.

    Everyone above made excellent points.

    I think though that comments on Drs. saying it is in our minds should be left out. I would like to let that one disappear in our talks. People always remembers that over all anyone says, Blessings.......Susan
  14. mollystwin

    mollystwin New Member

    Way to go!!!

    All are very good suggestions. Don't have anything to add, but wanted to say good luck!!!
  15. sues1

    sues1 New Member

    I missed these postings before! I do not read all nor everyday.

    I did post a letter to the paper.

    How dare they!!!!!!!!??????? Susan
  16. dononagin

    dononagin New Member

    I'm so proud of you for taking a stand for all of us. Best of luck to you. You have a whole fan club here rooting you on~
    Hugs!
    Dona
  17. monkeykat

    monkeykat Member

    Hi everyone,

    Thank you for all the support, confidence and encouragement! I will accept all positive thoughts and prayers ahead of time too:) Thank you to all of you who continue to send postings to the News Herald. We are sending a really strong message.

    It's important to send a strong message about this illness in Cleveland, Ohio b/c we have 2 world reknown hospitals here: The Cleveland Clinic and University Hospitals of Cleveland. I know that any and all efforts we make here in Cleveland will go a long way for us!

    If and when they interview me then I will post again and ask people to rememeber to send thank you's to them. I'm hoping that if enough people send responses now and thank you's later that maybe I can contact the Cleveland Plain Dealer (a much larger paper, with a much larger audience) and convince them to do a story as well.

    obrnlc - Thanks that's a good idea to remember how many of use were Overachievers. That's why it's so unbelievable that everyone suddenly thinks you've become lazy! right! Go figure! I'll be an all my life and then one day decide I think I'll be lazy. Oh well! It doesn't make sense.


    I can't remember who said it but I liked how you wrote about how you cook a meal but then don't have the energy to eat it. That's our life.

    I agree that any negative comments need to be left out of an interview. i will not compare CFS to any other illness as that may be taken wrong. I will not comment on the negative things doctors are saying.

    I think I will try to focus on the people who are getting on board and supporting us. I want to tell the public that this illness is being recognized and people are starting to explain it and help others understand it. I want to inspire the people who read the article to "get on board" with everyone else who is recognizing what a serious and devastating illness this is. i think that will have better results. what do you think?

    That was so sweet, Dona, when you said, "You have a whole fan club here rooting you on".

    I'll remember that!

    Keep Hope Alive,
    Monkeykat
  18. monkeykat

    monkeykat Member

    Hi,
    I wanted all of you to know that I sent an email to the contact editor at The Plain Dealer (largest newspaper in the Cleveland area).

    I hope to hear from him as well regarding doing a positive news story on CFS since the Lake County News Herald got so much attention from a blunder.

    Keeping hope alive,
    Monkeykat
  19. Juloo

    Juloo Member

    I woke up from my nap today with this in my mind...

    One of the things that is hard for many, many people to understand is why our 'fatigue' is any different from the fatigue the general population feels after a long day. After all, it IS the same word.

    So I was thinking it would be a good idea to find the fatigue scale that I've seen around to illustrate the levels of fatigue that those of us here deal with.

    After all, it's hard to argue that this illness doesn't mean anything important when the average person must admit that they've never felt fatigue that would not allow them to get up from a bed on a regular basis.
  20. Roseblossom

    Roseblossom Member

    http://www.recoveryfromcfs.org/

    100 - Fully recovered. Normal activity level with no symptoms.

    90 - Normal activity level with mild symptoms at times.

    80 - Near normal activity level with some symptoms.

    70 - Able to work full time but with difficulty. Mostly mild symptoms.

    60 - Able to do about 6-7 hours of work a day. Mostly mild to moderate symptoms.

    50 - Able to do about 4-5 hours a day of work or similar activity at home. Daily rests required. Symptoms mostly moderate.

    40 - Able to leave house every day. Moderate symptoms on average. Able to do about 3-4 hours a day of work or activity like housework, shopping, using computer.

    30 - Able to leave house several times a week. Moderate to severe symptoms much of the time. Able to do about 2 hours a day of work at home or activity like housework, shopping, using computer.

    20 - Able to leave house once or twice a week. Moderate to severe symptoms. Able to concentrate for 1 hour or less per day.

    10 - Mostly bedridden. Severe symptoms.

    0 - Bedridden constantly. Unable to care for self.