CFS, TV shows, and the media: an opinion

Discussion in 'Fibromyalgia Main Forum' started by kholmes, Jun 12, 2006.

  1. kholmes

    kholmes New Member

    Sorry--this is a bit long, but I felt a need to write this today.

    A few years back, there was a movie called MUMFORD (thanks to Lamotta77 for finding the title; I couldn't remember it), about a man with a mysterious past who moved to a small town. There, he became an imposter who took on the role of a local psychologist. Through his care for a local woman, she was "healed" of her Chronic Fatigue Syndrome, which turned out to be merely a psychological problem.

    I would suggest that we should deeply care about media images of CFS/ME and Fibromyalgia in the movies and in TV shows such as HOUSE and THE SOPRANOS.

    Media images are extremely influential. Advertisers are willing to pay over a million dollars for a thirty second commercial during the Super Bowl, and close to that amount for an ad during the AMERICAN IDOL finale, in addition to millions in production costs. Why? Because these ads influence people to buy their products, resulting in billions of dollars in revenue.

    Pharmaceutical companies advertise so heavily on TV because they know we will ask our doctors about these drugs, turning us, essentially, into their salespeople. Sales of the candy, Reese's Pieces, skyrocketed the summer Elliot laid a trail of them in the backyard for the alien in Spielberg's E.T.

    The media are truly powerful: thus Immune Support's $4 million attempt this summer to educate and inform the public about CFS and Fibro.

    For most people, TV, not newspapers, is their only source of information, and far more people, including doctors, will hear about and get their impressions of CFS from scenes in shows like THE SOPRANOS or HOUSE than will ever read about the CDC findings in a newspaper or on the internet. These shows are thoughtful, well-made, and reflect a kind of "reality" that other shows don't aspire to, which makes them even more influential. And their images of CFS and Fibro influence the culture of care and attitudes toward CFS and Fibromyalgia, not only in America, but worldwide.

    Any time we can give polite, but critical feedback to networks or the producers of shows, even ones we really like, I think we should. The last thing we need is stress, but I would like to become a greater advocate of responsible, intelligent media that not only continues to entertain, but doesn't mock or belittle these all too real physical illnesses that have dramatically altered our lives.


    [This Message was Edited on 06/12/2006]
    [This Message was Edited on 06/12/2006]
  2. NyroFan

    NyroFan New Member


    I remeber that movie, but can not remember the title.

    You are right, of course about the media and FM/CFS.

    I have a correspondence going with Liz Claman of CNBC, but it seems that is the wrong channel for FM/CFS.

    But: it does go to show that if we write or e-mail some of these people on various shows, they may listen.

    P.S. Recently I got an e-mail from Steve Doocy of 'Fox and Friends' in the morning. It was for a clarification on something.

    Yet: they may listen. I have had most luck with e-mail.

    I will shoot out a couple of e-mails too. I would not be suprised if Dr. Garnier who appears often with Shepard Smith on Studio B would not take a chance if I asked.

  3. kholmes

    kholmes New Member

    (Is that Laura Nyro of which you are a fan?)

    It's always possible that nobody in politics or in the media will read feedback, but in the past, I've found that a courteous, tactful e-mail or letter can be surprisingly effective.

  4. kholmes

    kholmes New Member


    MUMFORD -- that was the movie. It was a pretty good movie, actually.

    If I remember right, what made the imposter so effective with the townspeople was that he simply sat and listened to them, without judgement. Someone posted earlier about how short the "listening time" is for doctors during appointments. Having someone simply listen to us, without interruption, and believe us is something we all need.

    I'm finding that many doctors, even the very "clinical" ones, are starting to believe CFS is a physical illness, but simply don't know what to suggest for treatment, besides suggesting you see an infectious disease specialist for a battery of tests. While this is only somewhat of an improvement, at least the situation is radically better than the time when MUMFORD came out.

    [This Message was Edited on 06/12/2006]
    [This Message was Edited on 06/12/2006]
  5. Forebearance

    Forebearance Member

    Well, actually the movie didn't imply that he cured her, only that he helped her get some better and helped her with her family issues. And I thought the reason she improved was mainly because he helped her do a graded exercise program.

    It just shows how people can see things differently, I guess.

    I agree with you that I would like to see CFIDS presented more accurately in the movies and tv shows.

  6. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    I can't say I was totally offended by the premise either. She got out, got fresh air, did very light exercise, totally at the pace she could and wanted to handle,and it was enough to empower her and encourage her to want to continue. These did wonders for me also, I beat the severe chronic fatigue symptoms, and am much better though I still have FM, but I'm pretty active now and actually have a life. Feeling you are in control of something is very healing too, so is falling in love, which she also did.

    Some people get sick w/ this because of huge emotional stressors, so it ddin't seem demeaning that resolving her issues gave her immune system a huge boost and she slowly reversed the illness. I've seen quite a few testimonies that were very similar, and I don't underestimate the body/mind connection for a minute. And please don't get me wrong, that is totally different than thinking this is all in our heads. We know it is not.

  7. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    this was a good subject to raise and have us bat around. The media is far too powerful,and I agree is the major influence in our lives. Sad to say, its often more influential in children's lives esp., because they are so maleable, sometimes more so than the kids own parents. Scary indeed.

    I saw an episode of Grey's Anatomy that had an interesting way to introduce Fibromyalgia w/out making what could be construed as a negative statement. A student was getting brain surgery and they had to keep him talking so they gave him a spelling B. The Nazi (head of interns) asked him to spell FIBROMYALGIA, and Dr. McDreamy looked at her funny, so she challenged him, "what's wrong w/ fibromyalgia". "Too easy" he answered. The boy spelled it, and the Nazi admitted, "yah, that was kind of easy".

    I actually thought spelling fibromyalgia was pretty hard for anything but a med student, but they treated it like a household word. Very canny, I thought.

    Something I've noticed about these shows that feature FM/CFS is that they seem to like to not take a strong political stance either way. They usually portray it in an open ended way, that can be taken several ways.

    As for pressing media to cover this for us, local media can be an excellent advocate. Our biggest local TV network, CTV is clearly on our side aobut environmental diseases and they do lots of coverage, all positive. One of the best I saw was when they interviewed two local bigwigs in the political and moneyed scene, mucky mucks some like to call them. Both a man and woman who gave testimony to how much harder it was to keep going and deal w/ daily pain/fatigue. Since these were big players and seemed to be well known, it really took away the false view many have that we are somehow lazy or malingering, since these people were rich and known for abig social and charitable impact, though the disease had really slowed them down and they admitted all their time out of the spotlight was spent resting or often collapsing in a flare. It showed anyone could get it.

  8. AnneTheresa

    AnneTheresa Member

    Just this morning I watched an episode of X-Weighted, a reality-type show that documents an overweight person through their weight-loss journey.

    In this episode the woman (who was trying to lose) told her fitness coach that she had fibromyalgia. He said 'I'm the last person you want to talk to about fibromyalgia because I don't think it exists. I think it's a mental issue."

    That these hateful opinions are getting air-time is a true dis-service to our community.

    Thanks Kholmes for your post and your encouragement to speak to the networks. I believe it's critically important that we respond to the mis-information that the media portrays.

    God bless,
    Anne Theresa
  9. renney25

    renney25 New Member

    I can't believe that fitness instructor. I hope that woman gave him an earful. Although, I wouldn't be surprised if she just stood there w/ her mouth agape.

    I went so many years w/o knowing why I felt so terrible all the time. I often thought the same thing about my own situation (That it was in my head or I was somehow to blame for my own illness.

    That's why it's sick that someone in the spotlight would make such an ignorant comment. It's not the friends and family of FMS sufferers whom I worry the most about. It's the people who are sitting at home already blaming themselves.

    Someone, somewhere, took that comment to heart. That just pi$$es me off.
  10. kholmes

    kholmes New Member

    Thanks for your very thoughtful responses. The GREY'S ANATOMY scene sounds interesting. Knowledge of the terms, Fibromyalgia and CFS, is progress indeed.

    I wouldn't discount the mind-body connection, but the problem for me with MUMFORD is that while it depicts the woman with CFS with sympathy, it still suggests her illness is almost entirely psychological. And for too many of us, graded exercise is just not possible (I'm afraid that's my case at the moment; I cannot even do the lightest yoga) and can make many of us worse.

    Therapy and graded exercise undoubtedly helps many CFIDS sufferers. But I think graded exercise partly caused my relapse a year ago.

    No doubt falling in love is very healthy, too. I got married this past St. Patrick's Day! And my wife is great about getting me outside. Even with this illness, I remain content and relatively happy much of the time. Yet I remain severly disabled.

    The print media have made some progress (Laura Hillenbrand's essay on CFS in THE NEW YORKER come to mind), but maybe some day soon, we'll see a TV show or film also depict a Fibromyalgia or CFS sufferer whose illness is not seen as psychological in origin.


    [This Message was Edited on 06/13/2006]
    [This Message was Edited on 06/13/2006]
  11. Jeanne-in-Canada

    Jeanne-in-Canada New Member

    If you like Julianne Moore as much as I do, you'll probably like the independant movie, "Safe". You could probably dig this up at Blockbuster, its the biggest in Canada anyway.

    Julianne Moore is a middle class housewife who suddenly gets mysterious symptoms of severe chemical sensitivity and becomes allergic to everything to the point she ends up on a special treatment ranch. I had several epiphanies watching it. It had a thrillers edge to it as it portrayed the horror and fear she progressively went through, and treated the illness w/ the utmost sensitivity. It put her illness up as serious as AIDS.

    I've seen it several times and it portrays chemical sensitivity as the nightmare it can be. I can't remember if they ever mentioned CFS, but she could barely walk and was dragging aroun d an oxygen tank by the end. Julianne of course was brilliant and would probably gain compassion from even the toughest nut w/ her portrayal.

    MCS (environmental illness) is much less public than CFS/FM. Here in Ottawa, FM is well known, most everyone knows someone who has it. They often know chemical sensitivity too, but know one ever has a clue how disabling it can be, and gets progressively more shocked when they learn how enormously it disables me. The MCS end is worse than FM for me, but one aggravates the other. I'm so glad this movie blows the lid off it.

  12. julieisfree05

    julieisfree05 New Member

    I will email Shep too.

    He and I are least via email. I've had a little "thang" for him for years. He's a good southern boy and a FINE smart-mouth. He makes me laugh everyday!

    I spent last Thanksgiving in AL visiting relatives and the next week there was a story of a woman who had to be restrained by a couple of passengers and a flight attendant after trying to step outside of an airliner to have a cigarette.

    When they tossed the story back to Shep, he rolled his eyes like a teenage girl and said,

    "There are rumors that alcohol MAY have been involved!"

    I totally LOST IT for about five minutes!

    Maybe I can get through to him - and I'll mention the Gulf War Syndrome connection. He's a firm supporter of our troops too!

    - julie (is free!)

    If anyone asks
    (not that they would)
    I'll be down in Mississippi
    and up to no good.. - Sugarland
  13. Jeanne-in-Canada

    Jeanne-in-Canada New Member

  14. kholmes

    kholmes New Member

    I did see SAFE and had forgotten about it. I thought the film dealt with her chemical sensitivity disorder with intelligence and without judgement. It avoided the "disease of the week" melodrama we see so often on TV, and the film explored the issues surrounding chronic illnesses: mystery, alienation, hope, the vulnerability of our bodies, the quest for recovery.

    It is very telling that it took indie cinema to do this. In the world of Hollywood and nightly TV, we are used to either happy endings (i.e. a glorious, miraculous recovery) or tragic ones (death and redemption). SAFE ended up on a very ambiguous note, but was not without hope.

    If I remember right, the film depicted the Julianne Moore character growing more and more alienated from her friends and family, eventually ending up in a sterile, chemical-free dwelling in a community in New Mexico. You're right, WakeMeUp; it did show her with plenty of money to afford such a place.

    [This Message was Edited on 06/15/2006]
  15. maps

    maps New Member

    I had a Phsch appointment on Tuesday and I took a copy of the Cryptovirus. He said wow is this for real.

    I am taking a copy with me to my CFS appointment. My doctor is very good and definatley takes cfs and fibro seriously. I don't know if she has seen it but is always grateful when patients bring in new info.

    I think this is a great way to get the word out.

  16. Forebearance

    Forebearance Member

    I just wanted to say that I understand what you mean about exercise being counter-productive for you. I think one needs to be at a certain point, where one is beginning to recover, before (light) exercise is helpful.

    Perhaps at the stage of illness you're at, the most important thing would be getting good quality sleep. Have you figured out a combination of supplements that allow you to have good quality sleep?

  17. shanel06

    shanel06 New Member

    I haven't seen the movies discussed, so I can't comment.

    I did see the X-Weighted show, and ended up saving it to the PVR to show it to my SO because I was so livid with the turkey who made the comment. The fact is, fibromyalgia has - in my experience - been a much more "accepted" illness than CFS. Or at least I have never run into any major issues when doctors or people in the medical industry read my charge and read that I have FMS. And that's been the same for the past 18 years or more. CFS ? Doctors tend to react negatively about and I have run into alot who immediately dismiss me as a looney because of it.

    Now as for House. I did see that episode, and to be honest from what I remember my response was to laugh. Not that I appreciate CFS being dismissed. But because that patient so obviously didn't have CFS it was hilarious. Why anyone would want to believe they have CFS is beyond me - but believe me there are people out there who do. Munchausen syndrome I guess ? I don't know. So the dissmissive attitude of Dr. House was appropriate in that case - in my opinion. CFS shouldn't be minimized as "I'm tired". Hell I wish I was only "tired".

    But I guess it's all in the perspective ?

    I do agree we shouldn't stand by and let people belittle either illness. And I am happy to become pretty vocal when I don't agree. Heaven knows I'd love to plague the turkey on X-Weighted with documented information and his comments certainly lowered my opinion of him dramaticaly.

    Shannon L.
  18. kholmes

    kholmes New Member

    You're absolutely right; for me, getting good quality sleep is critical to dealing with my symptoms.
    One problem for me is that if I push too far (i.e. walk forty instead of thirty feet), I feel wired and shaky, and my insomnia is worse, even with my "sleep cocktail."

    I LONG for the day when I will be able to do any kind of exercise again.

    For sleep, I'm taking melatonin, powdered magnesium, Seriphos, and Klonopin, a combination which works pretty well most nights. I'm trying to very slowly wean off of the Klonopin, though.


  19. Forebearance

    Forebearance Member

    Thanks! I was going to be "Patience" but that name was taken, so I thought up a synonym.

    For me the best thing for sleep has been calcium lactate. Have you tried any of that?

    I'm glad you have that sleep cocktail worked out. I was lucky enough to figure out my sleep cocktail early on, so I've never had to take sleep meds.

    [This Message was Edited on 06/17/2006]
  20. Sandyz

    Sandyz New Member

    I think you are so right. These Tv shows and other media jabs at us are a big reason we are not believed and treated with respect. People think if this was a real illness a tv show wouldn`t be making fun of it. They are protraying us as crazy people that are faking are illness to get attention.

    Its so sad. If they could walk in our shoes for a day they eyes would really be opened. I can`t wait till that new campaign comes out. I hope it makes a big difference. I really can`t stand this much longer.

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