JuliannaG re: O Magazine article

Discussion in 'Fibromyalgia Main Forum' started by monkeykat, Apr 14, 2007.

  1. monkeykat

    monkeykat Member

    Hi JuliannaG,

    Do you remember that post I responsed to about the O Magazine article on CFS? My husband had written a really great response to it.

    Well, our local newspaper published a vicious editorial mocking and attacking the CDC for recent spending to educate people on CFS.

    I wrote the executive editor and told her that they owe us an apology, retraction and 1 or more news stories. Anyway, the local newspaper contacted me to do an interview this week on CFS! Yeah!

    I also wanted to let you know that I finally found the device we spoke of to get rid of moles. It's called a Sonic Molechaser (#19863) for $13.99. They work great and I no longer have tunnels in my yard. You can get it by calling 1.402.464.6116.

    I hope all is well in your neck of the woods:)

    Keep Hope Alive!!!

    [This Message was Edited on 04/14/2007]
  2. Iamnotmyillness

    Iamnotmyillness New Member

    I missed the original post on O Magazine and cannot find it on the board. Would you mind sharing again what it said?
  3. monkeykat

    monkeykat Member

    Hi, I love your name.

    I wanted to let you know that no one actually posted the Oprah Magazine article. I had my husband buy a hard copy from the store in Sept, 2006. In response, he emailed O Magazine a thank you and a really great response to the article.

    I looked on the CFIDS Association of America website but they did not have a link to the O magazine article. They only had the following:

    "The much-anticipated article about chronic fatigue syndrome hit newsstands in the September issue of O, the Oprah magazine. This magazine has a total audience of 16,290,000. Investigative reporter Mary Fischer interviewed Laura Hillenbrand, author of Seabiscuit; Michelle Akers, world-champion soccer star; Kim McCleary, president and CEO of the CFIDS Association; Anthony Komaroff, MD, of Harvard Medical School; and Suzanne Vernon, PhD, of the CDC for this article. (9/2006)"

    Keep Hope Alive, Monkeykat
    [This Message was Edited on 04/14/2007]
  4. Iamnotmyillness

    Iamnotmyillness New Member

    i am surprised by this because I heard that O didnt believe in CFIDS or FM. I had sent her an email at the request of one of the FM orgs here in Michigan back in Juneand I thougt that I would get some sort of prefunctory acknowledgement but nothing.

    Did Oprah talk about how debilitating this disease can be?? As helpful as the magazine article may be, I hope she follows up with a show devoted to it.

    And BTW I missed the article about the cdc. Shame on the editors. Lets see, the cdc studies oral cancer which often occurs with people who drink and/or smoke, the spend money on genetic illnesses where the parents KNOW that they have a chance of passing it on, and they fund research into HIV, yet safe sex dramatically reduces the rate at which the virus spreads. they also spend money on research into diabetes, arthritis, and addiction to tobacco. What makes any of these things more worthy (or for that matter less worthy) of study than any other. Moreover they miss the point that most medical research doesnt just provide answers for one illness but advances research in the general field. I dont doubt that as they learn more about FM and CFIDS they will also learn more about potential treatments for Gulf War Syndrome, Lupus, Lyme disease etc. Kudos to you for staying on top of this and forcing them to listen!
  5. monkeykat

    monkeykat Member

    Hi Iamnotmyillness,

    Yes, I had heard the same thing about O Magazine. I don't know if they didn't believe in CFS or FM but they just don't take anything serious if there isn't research to prove it...makes some sense; however, when our government curtails the money that is supposed to be spent on CFS to other illnesses and never researches it then we are b/t a rock and a hard place. When the CDC finally declared there is are 3 genetic links for CFS then people listen.

    Dana Sullivan Kilroy is the author of the article. It's an okay article. At least it's some recognition of the illness and it's on the positive side. It interviewed the famous people mentioned in my previous post above. Overall, it was a pretty good article but I'd like to see better.

    It still seemed a bit minimizing to me as I don't feel the author really understood just how devastating this illness is. The author mentions other illnesses that can cause exhaustion like: anemia, hypothyroidism, depression, prediabetes or undiagnosed diabetes. Blah, blah, blah! All those people have treatments and can work. I can't!!! I function at level 30 at my best and it's all down hill from there despite years of spending tons of money running up credit cards to try to heal from this illness. So the article seemed minimizing compared to the hell I've suffered for years.

    I haven't heard anything about a show devoted to it but wouldn't that be great!!!

    Yes, it was my local Lake County News Herald (near Cleveland, OH) that wrote an editorial. Here is it...

    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.

    You can go to the site below to see the 90+ responses from people...they were great responses to this vicious editorial.


    Keep Hope Alive, Monkeykat
  6. monkeykat

    monkeykat Member

    Hi Stovetop,
    Good insight!

    Yes, I don't understand that either. If you can compete in any sport than you are at the top of the scale with CFS. It makes you want to scream. This is the association that is supposed to be helping us??? Ugh!

    Yes, good idea to write the CFIDS org but we'd need a major thrust from this board and others to put pressure on them that they are not choosing good representatives.

    Even the whole campaign of "faces of CFS" doesn't recognize those of us who are severely ill and cannot bathe more than a couple times a week so I have to wear my hair in a ponytail and have not had a hairstyle in many years b/c I have to pick and choose what I use my energy for. Ugh! I have pictures that show the drop in my looks at my illness progressed through the years. Maybe I look like other people but I do not look like me or anything like I'd look if I wasn't so ill.

    Anyway, great insight!

    Keep Hope Alive, MOnkeykat
  7. Iamnotmyillness

    Iamnotmyillness New Member

    I completely agree with you about the "faces" of CFIDS/FM. But I do wonder if much of the difference is resources? I dont know the athletes you referenced, but were they sick when they were playing? Are they still playing? What outside help did they have.

    For example, I am very sick right now, but I had a period of about 4 years between relapses where you wouldnt have know I had FM at all.

    I also know that as bad as I am now, I would be functioning at a higher level if I had a nutritionist to plan and prepare a specific meal plan just for me. I would be functioning better if I had daily access to top flight physical therapists. And I would be functioning better if I had had good docs that believed me right from the start (when I relapsed, I gained 20 pounds in one month. I told my doc that it must be my thyroid as that is common with people with FM and that when my weight goes up my symptoms of FM get worse. She told me I must be binge eating. 60 pounds, 3 doctors and 5 thyroid tests later, they put me on thyroid med and my weight gain stopped. Go figure!)

    If they want to use famous faces, they have to find a way to market it correctly so that it conveys the message that while maybe none of us would get as healthy as that, we all would probably be able to do more with the right access to care.
  8. monkeykat

    monkeykat Member

    Hi iamnotmyillness,

    Yes, Michelle Akers had CFS when she was playing. It said that she suffered with her debilitating symptoms for 5 years before seeing a doctor. Akers said, "I'm extremely stubborn, and I still played soccer. But I had to eliminate everything else: no social life, and friends had to go grocery shopping for me." And although she went on for another ten years, winning two World Cup championpships and the gold medal in 1996, it was "as a great cost," she says. The article said that she had to stop playing b/c of a shoulder injury and b/c she had a 17 mo old son.

    Believe me, what Michelle Akers has is NOT what I have. She is way up the CFS rating scale if she could even attempt to play soccer. On a really good day (on 2x this year I was able to go to the grocery store) and then I pay for it for days after. I have been progressively getting ill for many years but had to quit working 5 years ago. I do not have remissions. I have ups and downs ranging b/t level 0 - 30 on the CFS rating scale. On a really good day I can function doing light activity only broken up over the day for more hours than level 30 suggests.

    Yes, if I had someone to prepare healthy veggies and fruit and juices for me I'm sure I'd be doing much better.

    Have physical therapists helped you??? Just wondering b/c I am an OT. The schooling is basically the same except for the last year of classes where PT's get more physics and study more of the lower extremity function. We study more upper extremity function and hand eye coordination type stuff.

    Thanks for sharing about the thyroid issue. It's frustrating dealing with doctors, isn't it. I think some of my angriest moments have been dealing with doctor frustration. I'm glad they finally got you on the right med.

    I love how you said, "we all would probably be able to do more with the right access to care." SO TRUE!!!

    Keep Hope Alive,

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