My Letter to Elizabeth Vargas - ABC News

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by tgeewiz, Apr 12, 2014.

  1. tgeewiz

    tgeewiz Member

    Hello all. Below is a letter that I just mailed to Elizabeth Vargas today.

    The letter is self-explanatory, but simply contrasts how a person with alcoholism/drug addiction is treated in this country vs. a person with ME/CFS.

    I am sharing this with you to get your input on what sounds effective or ineffective. And also, to ask what kind of response you may have had in the past while writing such letters yourself. This will help me in writing future letters.

    I honestly don't know if I will get a response and it does include a bit of sarcasm. But it is a far cry from insulting comments that many of us have received like "if you would only get off your lazy rear-end and exercise..." from friends, family and the medical community. I actually toned down the sarcasm after getting several people to proof read it.

    It is exactly 2 pages typed with a 12 point font. I thought that would be the maximum anyone would be willing to read.

    Anyway, let me know your thoughts.

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    April 12, 2014

    Elizabeth Vargas
    ABC News – 20/20
    47 West 66th Street
    New York, NY 10023

    Dear Ms. Vargas:

    After reading about your recent battle with alcoholism, I decided to visit your twitter page and your bio on the ABC/Go.com website. It was interesting to note some of the viewer comments:

    “Your courage is profound.” “Thank you for being so brave.”

    “You will always be regarded by us for your class and professionalism.”

    When I read this, I thought to myself, “Wow. Elizabeth Vargas has an addiction and is able to seek treatment and return to work in less than 6 months. Whereas I have been disabled for over nine years and am still waiting for an answer. The majority of the medical community thinks that I am simply a slacker and a malinger due to the fact that my only diagnosis is Chronic Fatigue Syndrome”. It is good to know that your received treatment in less than six months.

    To give you a brief history of my illness, I began experiencing fatigue in my mid to late 20s, after experiencing a chronic cough that lasted several years. Although I had been exercising all my life and was at a proper weight, I began to feel exhausted almost every day and required significantly more rest than my peers. Starting at about age 28 (1997), any exercise that I performed would cause me to experience dizziness and nervousness the next day at work. In addition, my cognitive skills started to decline as I could no longer read 3-4 books at a time as I had done since college.

    This downward spiral continued until 2005 as I worked mostly at [Name of Employer], an inner city homeless mission in Houston, TX that ministers to the needs of the homeless, most of whom are alcoholics and drug addicts. Although I graduated from college (Cum Laude) with a degree in accounting, most of my positions were non-financial and included: Case Manager, Counselor, Volunteer Coordinator, and Accounting Manager.

    I went to numerous doctors over the years who either could not pinpoint my illness or thought I was simply depressed. After a trip to the Mayo Clinic produced no results other than being diagnosed with a “somatization disorder,” I left work in 2005 due to the fact that I no longer had the strength and cognitive functioning to drive to work and perform my duties. I was later diagnosed with Chronic Fatigue Syndrome (CFS), which is also known as Myalgic Encephalomylitis (M.E.) or simply ME/CFS.

    For most of the last nine years I have experienced times when I was completely homebound for months at a time. While at other times, I have been able to function on a low level and leave the house for brief trips around town. Sometimes I am able to do light exercise, but it is only for short periods of time. In the last few months, I have been able to gather enough strength to take a shower and drive to a McDonalds near my house. Other days, I do not have enough strength to do either. Many times my 80 year old mother has to drive me to my doctor appointments.

    Did you know that the FDA has stated that “CFS is a serious disease for which there are no FDA-approved therapies?” This is according to Sara Eggers, Ph.D. in the FDA Office of Analysis/Office of Strategic Programs. Although there are no approved therapies, the NIH only allocates $5 Million in funding for CFS research. This is in contrast to over $1.5 billion for substance abuse and $31 Million for Smallpox, a disease that was eradicated in 1978. Although federal funding has been scarce, academia is starting to lead the way in research. Stanford University recently opened a clinic for those with ME/CFS, while DePaul University has an entire research team devoted to ME/CFS causes.

    It is interesting to note that when you discuss your illness, people will laud you for your courage and bravery. However, when I discuss my illness in public, the most common response is that I should just “take responsibility” for my problem or state that this can be simply solved by eating a proper diet and exercising. Unfortunately, these approaches and many more have failed. It gets somewhat embarrassing being unable to work, living with Mom in my 40s, and trying to explain a disease to people that they will regard as a “lack of effort” on my part.

    As we approach May 12th which is designated as Chronic Fatigue Syndrome Awareness Day, I thought you and David Muir might consider mentioning this on your 20/20 broadcast. I am certain that if you did, we would hear a “collective yawn” from the nation as most people do not regard this as a serious disease or as important as the latest hurricane, tornado or political crisis.

    So, congratulations on seeking treatment for your disorder. I wish you well in your recovery. I look forward to a time when medical treatment will be available for me and other ME/CFS patient as well and I can return to work and enjoy life to its fullest.

    Sincerely,


    Tim
  2. TigerLilea

    TigerLilea Member

    That's a great letter, Tim! It would be nice if a show like 20/20 could shame the US gov't into taking our illness more seriously. I won't hold my breathe though. Thanks for sharing this with us. :)
  3. jinlee

    jinlee Member

    Great letter Tim! I applaud you for writing this letter and bringing awareness to cfs/me. It is an awful illness and so destructive in our lives. Hopefully Ms. Vargus will respond.

    Jan
  4. joanierav

    joanierav Member

    great letter tim. i wouldnt change a thing. she may answer. but dont be surprised if she says "we covered this already"

    im sure ive seen 60 minutes cover cfs/fibro, several yrs. ago. altho i may be wrong.

    but please keep us posted. joanie
  5. tgeewiz

    tgeewiz Member

    Thanks for responding everyone. I just dropped it in the mail on Saturday.

    So, if I get a response, it will take several weeks to receive a reply if I am lucky.

    I will keep everyone posted.

    Tim
  6. joanierav

    joanierav Member

    i just remembered the show i saw. it was yrs ago . and im pretty sure it was 20/20. they were talking about chiari malformation and how they think it may be the cause of , or contributing to cfs/fibro. i remember calling my neurologist up the next morning and telling her about the show. she shot me down, saying "i already tested you for that". needless to say i didnt have it. joanie
  7. joanierav

    joanierav Member

    my first response above, i meant to say 20/20 and i said 60 min. by mistake. sorry. joanie
  8. tgeewiz

    tgeewiz Member

    Hi Joanie. I have never heard of the relationship between ME/CFS and a Chiari Malformation. But, I did read about the CM years ago & I knew someone whose son had that.

    Thanks for responding.
  9. joanierav

    joanierav Member

    your very welcome. joanie
  10. FibroJune

    FibroJune Member

    Good for you Tim! It may not be answered, but you made your voice heard in writing. The more voices out there will give the greater chance of being heard.