I’m Contacting The Discovery Channel…

Discussion in 'Fibromyalgia Main Forum' started by FibroPainSufferer, Mar 31, 2007.

  1. FibroPainSufferer

    FibroPainSufferer New Member

    I’m on the website right now getting ready to write my letter about FMS/CFS. Before I get to the point where I can write my comments, it’s asking me “What program or show?” I have to select something & there are a lot of choices but I need help in picking which one. The choices are:

    Medical Mysteries
    Diagnosis Unknown
    Mystery Diagnosis
    I Lost It!

    I think “I Lost It!” sounds about right :) Can someone offer me some advice? I want to make sure I do this right!!!

    Thank You!!!
  2. Lichu3

    Lichu3 New Member

    I don't watch the Discovery channel but I do know that there is an art to selling ideas to the media.

    I would guess that emphasizing aspects that would draw a large viewing audience would help. Don't want to overdramatize but for CFS emphasizing the Incline Village and other CFS-like epidemics might help. Also the same viral culprits (like EBV/ HHV-6) which have been looked at for 20 years and are only now being re-examined and treated by Dr. Montoya at Stanford. How CFS may actually be several undiscovered illnesses lumped under one umbrella.


    Also the fact that these FM/CFS can be so debilitating yet leave the sufferer without visible marks and routine bloodwork/ tests which appear normal. (Really a mystery!)
    [This Message was Edited on 03/31/2007]
  3. FibroPainSufferer

    FibroPainSufferer New Member

    I don’t watch the Discovery Channel either which is why I’m asking for all the help I can get!

    What is Incline Village?
  4. Lichu3

    Lichu3 New Member

    Many people here know the story better than I, especially Erikmoldwarrior who was actually there.

    Basically, in the mid-1980s, people in Incline Village, Neveda (a very wealthy, primarily Caucasian town)started coming down with the symptoms of CFS. The town doc, Daniel Peterson, noted this and called in the CDC to investigate. From what I understand, CDC did not do a very complete investigation and dismissed CFS as a disease of "wealthy, middle-aged, white women" (although there were men and poor people who were sick) who had nothing to do but complain about their non-illness. Thus, CFS got the shaft initially as a "psychological" disease and less emphasis was placed on biological causes, which unfortunately is why we still don't have a clear diagnostic criteria, lab tests, or a treatment.

    You can tell them that there have been other epidemics and as well as sporadic cases of CFS. Their reporters should dig out more.
  5. FibroPainSufferer

    FibroPainSufferer New Member

    I’ve never heard about this but I’d like to find out more!!!

    Thanks for explaining it to me Lichu3, I saw Incline Village mentioned on another post but I didn’t know what they were talking about.

    Thanks so much for explaining it to me!!!
  6. kjfms

    kjfms Member

    for years. Please do not try to sell it like "Hollywood". They do not do that type of medical programing -- thank God.

    Please just tell them your story and let them get in touch with you.

    Perhaps try watching some of their shows and see how they do work would help -- just a thought :)

    I wish you the best of luck -- their medical shows are excellent BTW.

    Take care,

    Karen :)
  7. FibroPainSufferer

    FibroPainSufferer New Member

    I finally got off the site & had the same thought about watching their shows first. I have to check to see if I even have the channel.

    After reading Joe’s post about doing the rally, I really feel like I need to finally stop wasting my time complaining about having fibro & do something about it for many reasons:


    - Having doctors treat us better: their attitudes, medicines prescribed, etc...
    - Helping our friends & family understand what we really live with everyday
    - Research on FM & CFS

    Most of us are not getting better, we're only getting worse. Something needs to be done!

  8. kjfms

    kjfms Member

    How rude of me -- I meant to tell you in my first post your idea wonderful. The Discovery Channels do fantastic medical shows and the do handle them in a very real way.

    I send out letters and emails to governments officials to do my part but what you are doing is really great.

    I hope you hear from them.

    Prickles does a lot of great work for awareness and you can also do a search on this site for form letters to send to your local government leaders if you want. May 12 is awareness day.

    Keep up the good work,

    Karen :)
  9. FibroPainSufferer

    FibroPainSufferer New Member

    I’ve just been reading the posts tonight & I’m sorry to say that I don’t know much at all about CFS, which makes me feel guilty. Since being diagnosed with FMS, I’ve done a lot of reading on it but when it comes to CFS, all I know is that it causes extreme fatigue. So that’s where my guilt comes in! I can tell people what I know about FMS & what I’ve went through since being diagnosed with it but with CFS, I’m lost. I’ve meet so many nice people on here that if I try & get the word out there about FMS, then I'd like to do the same with CFS.

    If anyone who suffers from CFS wants to tell me their symptoms, what the treatments are, etc...maybe then I can mention it in my letters.

    Again, thanks for the added info Karen & your very nice compliment!!!
  10. Lichu3

    Lichu3 New Member

    Chronic fatigue syndrome is a chronic, debiliating illness affecting multiple organ systems. Severe fatigue is only one symptom of CFS; the illness also causes cognitive problems, sleep problems, muscle/joint aches, headaches, sore throat and multiple other symptoms. It affects primarily women in their 40s and 50s although men, children, and younger adults can also contract CFS. People of any ethnicity can get CFS and, contrary to early studies, African-Americans and Hispanics may actually be at higher risk.

    The U.S. Centers for Disease Control recently launched an awareness campaign for CFS in 11/2006 in light of the fact that at least a million people are affected by CFS but that up to 80% of them are not yet diagnosed. The CDC also reported that CFS can be as debiliating as other chronic conditions like lupus, heart disease, and end-stage renal disease. 25% of sufferers cannot work at all. Annually, the U.S. loses $9.1 billion dollar in productivity because of CFS. Adding in indirect costs like medical testing/ disability payments, this balloons to $19-25 billion annually.

    CFS often lasts for years with only 50% of people improving somewhat after 10 years. Less than 10% regain pre-illness functioning. Despite CFS being known as an illness more than two decades, there is still no known diagnostic test nor a SINGLE effective treatment. NIH research funding for 2007 is $4 million, in the bottom ten of more than 200 conditions. (In comparison, for example, infertility research receives $40 million.)

    For more information, Discovery's researchers can go to the CDC or the CFIDS Association of America to start.

    (I wrote this so feel free to cut and paste for your letter.)
    [This Message was Edited on 03/31/2007]
  11. irishprincess

    irishprincess New Member

    i would say medical mysteries seeing as fibro and cfs is such a mystery to the majority of drs.
  12. doxygirl

    doxygirl New Member

    that we have NO answers!
    Wev do not know where, why, or how we got these dd's....I would think that " medical mysteries" a very appropriate classification for our dd!

    That's just my two cents :)

    It sure would be nice to have some tests, medications, answers to these mystery diseases!

    Hugs
    Doxy
  13. Jackie65

    Jackie65 New Member

    "I Lost it " is a show about people who have lost a lot of weight. And I don't know about you but with my Fibro I've done nothing but gain weight...it should be for me "I Found It!!"... and can't get rid of it !!! LOL

    I love Discovery Channel...both "Mystery Diagnosis" and "Diagnosis Unknown" are excellent shows.
  14. Engel

    Engel New Member

    The only thing is those medical mysteries always get solved ...
  15. joeb7th

    joeb7th New Member

    At least the title acknowledges a disease.

    And that's part of the travesty with this...is that too many doctors privately don't even consider this a real "physical" and physically caused disease.

    And their egos are so big they feel better throwing it off into the psychiatric realm rather than admitting they could be wrong about this.

    This obviosly makes "them" feel better rather than adnmitting that they can't find the physical causes and triggers of this. That they are impotent in this regards.

    But doing that just hurts the sufferers even more thinking they are nuts. Then load em up on antidepressnats and ant-anxiety pills. Just keep em sedated.

    Because if we ever officially admit that this is some real physical disease and we are having hardly any success with it...it makes our medical community look bad.
  16. coolma

    coolma New Member

    POsitive public response would really help both conditions. More and more there is a belief that Fibro is in part, a central nervous system disorder, and in most cases caused by damage to the discs in the spine/neck which affect the nerves, thus causing a multitude of symptoms and side effects, including fatigue. CFS seems to come from viral complications and I don't know why they are both lumped together! Good luck and keep us posted.
  17. cmt49829

    cmt49829 New Member

    would be my choice.
    I hope you get someones attention when you send a letter. I am a discovery channel watcher also. Ive learned alot about medical things and have been made aware of many tihngs also.
    keep us posted on your progress with this.
  18. FibroPainSufferer

    FibroPainSufferer New Member

    I just want to thank everyone for their replies! I haven’t been on today because I’m in a lot of pain again. When I feel better I’ll read all replies!

    I at least wanted to say a quick thank you!!! I was excited about finally doing something then I went to bed last night & slept 12 hours. I woke up & could hardly get into my kitchen to get my medicines.

    I promise when I feel better, I will reply!

    I hope you are all feeling well! I’ve been having these bad days for a week now & tomorrow it’s back to work :-(

    This is totally off the subject, but does anyone keep their meds on their nightstands? I’m wondering if I should start doing this since I live alone.
  19. wrthster

    wrthster New Member

    FibroPainSufferer,


    I think it is great you are doing this. Please read this, this really communicates what the disease is and the truth as to how bad it is. I have never seen a paper that was written so well and is so affective at changing people's minds. It is to long to post, so I am attaching the link. I think anyone who reads this will more than get the point. Thank you on behalf of all of us.

    http://www.cfids-cab.org/freds/cfs.htm

  20. Reidsbeads

    Reidsbeads New Member

    When I wrote to them I think I went under Mystery Diagnosis
    or mybe Medical Mysteries either one actually would work I think, Tam