The Million Letter Campaign

Discussion in 'Fibromyalgia Main Forum' started by JLH, Aug 11, 2006.

  1. JLH

    JLH New Member

    The Million Letter Campaign (MLC)

    By Pattie Caprio



    In May 2002, I (Pattie Caprio) was injured in an automobile accident that left me disabled. After being examined by over 22 physicians, I was diagnosed with developing three overlapping, yet separate, diseases: fibromyalgia, CFIDS, and multiple chemical sensitivity, a disorder triggered by exposures to chemicals in the environment. These three diseases are affect approximately 10 percent of the population.



    After becoming disabled, I began the grueling task to prove my case to the judicial system. Because there are no tests available that can prove one has these diseases, it was extremely difficult to win my pending SSD and personal injury cases. I was also informed by my attorney that in the state of Pennsylvania, there is no clinical evidence that proves one can develop these diseases from trauma to the body—-even though there were numerous research projects by medical professionals, that pointed to trauma being the catalyst of these syndromes.



    I decided to help the millions that were in the same situation as myself. We needed to unite as one voice to raise awareness for national recognition for theses debilitating diseases.



    I started to contact websites that had information on these diseases, seeking help to execute a writing campaign to the major television stations nation wide. In the United States, these letters would be sent to Laura Bush, 20/20, ABC News, FOX News, “60 Minutes,” CBS News, Montel Williams, Oprah Winfrey, Dr. Phil, Barbara Walters, “Nightline,” CNBC, “Annie’s Mailbox,” and Mike Leavitt, Secretary, U.S. Dept. of Health & Human Services.


    A month into my web searching, I came across Dominie Soo Bush, a woman in Florida who had been suffering with FM for the past 14 years. She was willing to participate in the campaign, and released an email blast to her readers on her web site.



    Within one week I had over 400 emails. From that day forward, I was receiving anywhere from 25 to 50 emails daily. I started to organize my program for the purpose of awareness and encouraged these sick debilitated sufferers to join forces with my campaign. A Yahoo group account was created so that we could all converse and upload files so that everyone could view what was currently taking place.



    Because of the volume of research and contacts we made, the MILLION LETTER CAMPAIGN (MLC) became so widespread that we reached the following countries for support: South Africa, Canada, Italy, Austria, New Zealand, Australia, China, parts of the UK, France, and Switzerland.


    If we had proper funding for more research towards a cure or at least some evidence that there was something being done at a national level, it would encourage the millions that suffer to look forward to a brighter future.



    The prospect for Phase 2 of MLC is to continue writing letters to Congress. We started this phase and are hoping to get some feedback soon. Working towards national recognition is not an easy task. There are many organizations that need to be contacted. Because we are very ill, it makes it twice as difficult to accomplish our long-term goals. However, we persevere with what we have to work with.



    Our congressional petitions still continue today until we are heard. Man is self-destructive. Without uniting as one voice, we have little chance of combating the many diseases that plague our globe. Without more exposure to these issues, our children will be faced with even more devastation in generations to come.



    Source: NFA newsletter.
  2. tlayne

    tlayne Member

    Are you the one who started this? Where is it now, and what kind of progress has it shown? And how do we do this? thank you for posting this! Maybe we can also include this with our name change campaign and combind the two? Maybe we can get some press releases for the two? Let me know what you and anyone else that is interested in this know what you think.

    I am not having a good day, so I hope that I made sense! I just really think this is a good idea! Hugs, Tam
  3. sandyblue

    sandyblue New Member

    Count me in for whatever you need. I may be poor, but I'll do what I can.
    You can contact me at my yahoo acct of cntryniteowl
    Take care and may God bless you in your endevors.
    sandyblue
  4. phoenixrising2

    phoenixrising2 New Member

  5. JLH

    JLH New Member

    I have copied the letter that I wrote to everyone (addresses of everyone who I mailed a letter to are listed at the end of this). This is an example of the types of letters they want everyone to write. You can write letters anytime of the year to keep this effort going, or you can wait until May--whichever you wish.

    You might want to do a Google search on the Million Letter Campaign to see if you can find more out about it. I can't remember the website that has all of the info on it.

    jlh

    ---------------
    May 1, 2005

    Gentlemen:

    My name is ___________. I am a 54-year old wife, mother, and grandmother, living in _______, Kentucky. I suffer from Fibromyalgia (fibro).

    Prior to my early retirement in July, 1999, I was the Small Business Liaison in the Corporate Procurement Division for the U. S. Enrichment Corporation, which operates uranium enrichment facilities in Portsmouth OH and Paducah KY. I was hired there when I was 18, but due to my poor health, was forced to take early retirement at age 48. I absolutely loved my job and being a productive member of society. I had planned to work until I reached age 65. I was a “Super-Mom” before my fibro became disabling. I worked 10-12 hours a day, raised three children, helped them with their homework, attended all their school functions, helped my husband on our farm, cooked from scratch, did housework, laundry, ran errands, and made sure my car was kept in repair, just to name a few. Now, my elder daughter has to drive me to Wal-Mart , where I have to ride a motorized scooter just to get my groceries. I can only stand up for 15-20 minutes at a time, and can not walk further than to my mail box.

    Doctors think that I had fibro as a child, but was not officially diagnosed until about 15 years ago when it started to take its toll on me. They have no idea as to what caused it. I suffer from a multitude of symptoms, but debilitating pain in my muscles, joints, and bones and the unrelenting fatigue are what are so disabling for me. I also have other serious medical conditions which just exacerbate the fibro.

    This illness has been devastating—it has taken away nearly everything that I have loved--the enjoyment of my family. I am unable to go to the shopping malls with my girls, go fishing with my son, and take drives in the country with my husband, let alone think about going on a family vacation. I no longer have the career that I thrived on, financial stability, a comfortable retirement, and relationships with friends and extended family.

    Those suffering from fibro need your assistance. Fibro is an “invisible” illness. I say invisible because most who suffer from it look okay from all outward appearances. Many doctors do not take it seriously; and some are afraid to prescribe necessary pain medications. Doctors should not be afraid to prescribe pain medications to chronic pain sufferers. Nobody should have to live with chronic pain like we do. We want all doctors and lawyers to take this disease seriously for disability cases. The Social Security Administration also needs to take our disability seriously, as it is such a handicap for some people that they are no longer able to work.

    Fibromyalgia Awareness Day, held on May 12 of each year, is a widely celebrated, high- profile media event observed by the millions of Americans with fibromyalgia and other chronic pain illnesses. Since its inception in 1997, the National Fibromyalgia Association has led Awareness Day activities nationwide in an effort to increase awareness of Fibromyalgia and other chronic pain illnesses.

    I hope we can count on your support. We need Congress to appropriate money to be spent on research for treatments and a cure, and media coverage for education--to raise awareness of the physically debilitating effects of Fibromyalgia.


    Respectfully,


    (name)
    (address)

    Enclosures

    ----------------------------
    page 2


    FIBROMYALGIA SYNDROME
    ADDITIONAL INFORMATION


    Note: even more information than is provided here may be found on the internet by doing a search for “Fibromyalgia” (hereinafter referred to as FMS). (The Fibromyalgia Network website has had 20,800,492 visitors the last time I reviewed their site.)

    Reading some of this information may be beneficial for you to understand FMS a little more. It is such a misunderstood pain syndrome. Some physicians believe in it and some do not. We need a media to portray as much POSITIVE information about this illness. We need an avenue to educate more of the medical community, our employers, our family, friends, and neighbors about how we feel. We also need to learn how to feel better and alleviate our pain to the point that we can make it through the day.

    This syndrome takes over our daily lives. It affects our jobs and our families. It is hard for others to understand how this syndrome affects us, when we look “normal.”

    You are in a position to “make things happen.” Please help us!

    I would be grateful if you would at least take the time to read this additional information. I know it is rather lengthy; however, it is necessary for you to understand more about FMS.


    WHAT IS FIBROMYALGIA SYNDROME? (FMS)

    FMS is not a catch-all, "wastebasket" diagnosis. Also, FMS is not yet considered a disease. Diseases have known causes and well-understood mechanisms for producing symptoms. FMS is a syndrome, which means it is a specific set of signs and symptoms that occur together. Syndromes are no less serious or potentially disabling than diseases. Rheumatoid arthritis and lupus are also classified as syndromes. Lab tests for FMS do not exist right now. Lab tests are valid only to check for co-existing conditions. You can have other conditions and also have FMS.

    FMS is a chronic, often disabling medical condition, characterized by widespread musculoskeletal pain and uncontrollable fatigue for which the cause is still unknown. (Fibromyalgia means pain in the muscles, ligaments, and tendons—the soft fibrous tissues in the body.)

    It is often accompanied by many other problems such as irritable bowel, headaches, sleep disorder, and cognitive impairments. Conditions that may fall into the same category of syndromes as FMS are chronic fatigue syndrome (CFS) and myofascial pain syndrome (MPS).

    Most patients with FMS say that they ache all over. Their muscles may feel like they have been pulled or overworked. Sometimes the muscles twitch and at other times they burn. More women than men are afflicted with FMS, and it shows up in people of all ages.

    Experts in the field of FMS and chronic fatigue syndrome (CFS) believe that these two syndromes are so similar that they may be one and the same. Gulf War syndrome also overlaps with FMS/CFS.

    POSSIBLE CAUSES

    The cause of FMS remains elusive, but there are many triggering events thought to precipitate its onset. A few examples would be an infection (viral or bacterial), an automobile accident, or the development of another disorder, such as rheumatoid arthritis, lupus, or hypothyroidism. These triggering events probably do not cause FMS, but rather, they may awaken an underlying physiological abnormality that is already present.

    What could this abnormality be? Theories pertaining to alterations in pain-related chemical transmitters (particularly substance P, nerve growth factor, serotonin, and norepinephrine), immune system function (e.g. abnormally elevated levels of cytokines that form the communications link between your immunologic and neurologic systems), sleep physiology, and hormonal irregularities are under investigation. In addition, modern brain imaging techniques are being used to explore various aspects of brain function. The body's response to exercise, stress, and alterations in the operation of your autonomic nervous system (the one that operates in your peripheral tissues) are also being evaluated. Substance P and nerve growth factor are increased threefold and fourfold (respectively) in the spinal fluid of people with FMS, but researchers are working to figure out why these elevations exist. With regards to genetics, its role in FMS is also the focus of many investigations.

    WHAT IS THE PROGNOSIS?

    Long term follow-up studies on FMS have shown that it is chronic, but the symptoms may wax and wane. The impact that FMS has on daily living activities, including the ability to work a full-time job, differs among patients. Overall, studies show that FMS may be equally as disabling as rheumatoid arthritis.

    In addition to looking for effective treatments and a definitive blood test for these syndromes, more basic science research is also needed. This will help scientists better understand what is happening on a biochemical or patho-physiological basis. By further investigating possible abnormalities in neurotransmitters, hormones, metabolic processes and immune system factors, researchers may be able to answer: Why do patients hurt all over? What is causing the extreme fatigue, headaches, concentrations difficulties, and GI upset? Why do patients wake up from a night's sleep feeling stiff, achy and tired? And, is there a physiological link between the widespread symptoms of FMS and CFS, and more regional pain problems? In addition, investigations into the role of genetics and the environment may further advance our understanding about these complicated and difficult to treat syndromes

    SYMPTOMS AND ASSOCIATED SYNDROMES

    Pain - The pain of FMS has no boundaries. People describe the pain as deep muscular aching, throbbing, shooting, and stabbing. Intense burning may also be present. Quite often, the pain and stiffness are worse in the morning and you may hurt more in muscle groups that are used repetitively. For a diagnosis, doctors will look for widespread pain in all four quadrants of their body as well as at least 11 of the 18 specified tender points.
    These 18 sites used for diagnosis cluster around the neck, shoulder, chest, hip, knee and elbow regions. Over 75 other tender points have been found to exist, but are not used for diagnostic purposes.

    Fatigue - This symptom can be mild in some patients and yet incapacitating in others. The fatigue has been described as "brain fatigue" in which patients feel totally drained of energy. Many patients depict this situation by saying that they feel as though their arms and legs are tied to concrete blocks, and they have difficulty concentrating, e.g., brain fog.

    Sleep Disorder - Most FMS patients have an associated sleep disorder called the alpha-EEG anomaly. This condition was uncovered in a sleep lab with the aid of a machine which recorded the brain waves of patients during sleep. Researchers found that most FMS patients could fall asleep without much trouble, but their deep level (or stage 4) sleep was constantly interrupted by bursts of awake-like brain activity. Patients appeared to spend the night with one foot in sleep and the other one out of it.

    Sleep lab tests may not be necessary to determine if you have disturbed sleep. If you wake up feeling as though you've just been run over by a Mack truck – what doctors refer to as unrefreshing sleep – it is reasonable for your physician to assume that you have a sleep disorder. Many FMS patients have been found to have other sleep disorders in addition to the alpha-EEG, such as sleep apnea, sleep myoclonus (nighttime jerking of the arms and legs), and restless legs syndrome. A newly discovered sleep disorder, upper-airway resistance syndrome, is also being evaluated for its association with FMS.

    Irritable Bowel Syndrome - Constipation, diarrhea, frequent abdominal pain, abdominal gas, and nausea represent symptoms frequently found in roughly 40 to 70% of FMS patients.

    Chronic Headaches - Recurrent migraine or tension-type headaches are seen in about 50% of FMS patients and can pose a major problem in coping for this patient group.

    Temporomandibular Joint Dysfunction Syndrome - This syndrome, sometimes referred to as TMJ or TMD, causes tremendous jaw-related face and head pain in one quarter of FMS patients. However, a 1997 published report indicated that close to 75% of FMS patients have varying degrees of jaw discomfort. Typically, the problems are related to the muscles and ligaments surrounding the jaw joint and not necessarily the joint itself.

    Other Common Symptoms - Premenstrual syndrome and painful periods, chest pain, morning stiffness, cognitive or memory impairment, numbness and tingling sensations, muscle twitching, irritable bladder, the feeling of swollen extremities, skin and chemical sensitivities, dry eyes and mouth, dizziness, and impaired coordination can occur.
    Patients are often sensitive to odors, loud noises, bright lights, and sometimes even the medications that they are prescribed.

    Aggravating Factors - Changes in weather, cold or drafty environments, infections, allergies, hormonal fluctuations (premenstrual and menopausal states), stress, depression, anxiety and over-exertion may all contribute to symptom flare-ups.

    In conclusion, FMS sufferers have divided their symptoms into categories, as follows:

    GENERAL
    ____ Fatigue, made worse by physical exertion or stress
    ____ Activity level decreased to less than 50% of pre-illness activity level
    ____ Recurrent flu-like illness
    ____ Sore throat
    ____ Hoarseness
    ____ Tender or swollen lymph nodes (glands), especially in neck and underarms
    ____ Shortness of breath (air hunger) with little or no exertion
    ____ Frequent sighing
    ____ Tremor or trembling
    ____ Severe nasal allergies (new allergies or worsening of previous allergies)
    ____ Cough
    ____ Night sweats
    ____ Low-grade fevers
    ____ Feeling cold often
    ____ Feeling hot often
    ____ Cold extremities (hands and feet)
    ____ Low body temperature (below 97.6)
    ____ Low blood pressure (below 110/70)
    ____ Heart palpitations
    ____ Dryness of eyes and/or mouth
    ____ Increased thirst
    ____ Symptoms worsened by temperature changes
    ____ Symptoms worsened by air travel
    ____ Symptoms worsened by stress

    PAIN
    ____ Headache
    ____ Tender points or trigger points
    ____ Muscle pain
    ____ Muscle twitching
    ____ Muscle weakness
    ____ Paralysis or severe weakness of an arm or leg
    ____ Joint pain
    ____ TMJ syndrome
    ____ Chest pain

    GENERAL NEUROLOGICAL
    ____ Lightheadedness; feeling "spaced out"
    ____ Inability to think clearly ("brain fog")
    ____ Seizures
    ____ Seizure-like episodes
    ____ Syncope (fainting) or blackouts
    ____ Sensation that you might faint
    ____ Vertigo or dizziness
    ____ Numbness or tingling sensations
    ____ Tinnitus (ringing in one or both ears)
    ____ Photophobia (sensitivity to light)
    ____ Noise intolerance

    EQUILIBRIUM / PERCEPTION
    ____ Feeling spatially disoriented
    ____ Dysequilibrium (balance difficulty)
    ____ Staggering gait (clumsy walking; bumping into things)
    ____ Dropping things frequently
    ____ Difficulty judging distances (e.g. when driving; placing objects on surfaces)
    ____ "Not quite seeing" what you are looking at

    SLEEP
    ____ Hypersomnia (excessive sleeping)
    ____ Sleep disturbance: unrefreshing or non-restorative sleep
    ____ Sleep disturbance: difficulty falling asleep
    ____ Sleep disturbance: difficulty staying asleep (frequent awakenings)
    ____ Sleep disturbance: vivid or disturbing dreams or nightmares
    ____ Altered sleep/wake schedule (alertness/energy best late at night)

    MOOD / EMOTIONS
    ____ Depressed mood
    ____ Suicidal thoughts
    ____ Suicide attempts
    ____ Feeling worthless
    ____ Frequent crying
    ____ Feeling helpless and/or hopeless
    ____ Inability to enjoy previously enjoyed activities
    ____ Increased appetite
    ____ Decreased appetite
    ____ Anxiety or fear when there is no obvious cause
    ____ Panic attacks
    ____ Irritability; overreaction
    ____ Rage attacks: anger outbursts with little or no cause
    ____ Abrupt, unpredictable mood swings
    ____ Phobias (irrational fears)
    ____ Personality changes

    EYES AND VISION
    ____ Eye pain
    ____ Changes in visual acuity (frequent changes in ability to see well)
    ____ Difficulty with accommodation (switching focus from one thing to another)
    ____ Blind spots in vision

    SENSITIVITIES
    ____ Sensitivities to medications (unable to tolerate "normal" dosage)
    ____ Sensitivities to odors (e.g., cleaning products, exhaust fumes, colognes, hair sprays)
    ____ Sensitivities to foods
    ____ Alcohol intolerance
    ____ Alteration of taste, smell, and/or hearing

    UROGENITAL
    ____ Frequent urination
    ____ Painful urination or bladder pain
    ____ Prostate pain
    ____ Impotence
    ____ Endometriosis
    ____ Worsening of premenstrual syndrome (PMS)
    ____ Decreased libido (sex drive)

    GASTROINTESTINAL
    ____ Stomach ache; abdominal cramps
    ____ Nausea
    ____ Vomiting
    ____ Esophageal reflux (heartburn)
    ____ Frequent diarrhea
    ____ Frequent constipation
    ____ Bloating; intestinal gas
    ____ Decreased appetite
    ____ Increased appetite
    ____ Food cravings
    ____ Weight gain (____ lbs)
    ____ Weight loss (____ lbs)

    SKIN
    ____ Rashes or sores
    ____ Eczema or psoriasis

    OTHER
    ____ Hair loss
    ____ Mitral valve prolapse
    ____ Cancer
    ____ Dental problems
    ____ Periodontal (gum) disease
    ____ Aphthous ulcers (canker sores)

    COGNITIVE
    ____ Difficulty with simple calculations (e.g., balancing checkbook)
    ____ Word-finding difficulty
    ____ Using the wrong word
    ____ Difficulty expressing ideas in words
    ____ Difficulty moving your mouth to speak
    ____ Slowed speech
    ____ Stuttering; stammering
    ____ Impaired ability to concentrate
    ____ Easily distracted during a task
    ____ Difficulty paying attention
    ____ Difficulty following a conversation when background noise is present
    ____ Losing your train of thought in the middle of a sentence
    ____ Difficulty putting tasks or things in proper sequence
    ____ Losing track in the middle of a task (remembering what to do next)
    ____ Difficulty with short-term memory
    ____ Difficulty with long-term memory
    ____ Forgetting how to do routine things
    ____ Difficulty understanding what you read
    ____ Switching left and right
    ____ Transposition (reversal) of numbers, words and/or letters when you speak
    ____ Transposition (reversal) of numbers, words and/or letters when you write
    ____ Difficulty remembering names of objects
    ____ Difficulty remembering names of people
    ____ Difficulty recognizing faces
    ____ Difficulty following simple written instructions
    ____ Difficulty following complicated written instructions
    ____ Difficulty following simple oral (spoken) instructions
    ____ Difficulty following complicated oral (spoken) instructions
    ____ Poor judgment
    ____ Difficulty making decisions
    ____ Difficulty integrating information (putting ideas together to form a complete picture or concept)
    ____ Difficulty following directions while driving
    ____ Becoming lost in familiar locations when driving
    ____ Feeling too disoriented to drive

    ---------------

    Re: Million Letter Campaign

    What we are asking for: e.g., recognition of this illness, for doctors and lawyers to take FMS/CFIDS seriously for disability cases, for understanding from family and friends, for money to be spent on research for a cure, for media coverage, etc.

    Most of us could write a book about our illness, but please limit your letter to ONE PAGE. It may also be helpful to include a photo of yourself, so you are perceived as a real person.

    Letters should be mailed on MAY 1, 2005 to the following addresses:

    Mrs. Laura Bush
    The White House
    1600 Pennsylvania Ave., NW
    Washington, DC 20500

    Story Editor
    20/20 - ABC NEWS
    147 Columbus Ave., 10th Floor
    New York, NY 10023

    FOX News
    5151 Wisconsin Ave., NW
    Washington, DC 20016

    Story Editor
    60 Minutes - CBS NEWS
    524 West 57th St.
    New York, NY 10019

    Senior Supervising Producer
    The Montel Williams Show
    433 West 53rd St.
    New York, NY 10019

    The Oprah Winfrey Show
    ATTN: Staff Member, Story Ideas
    110 N. Carpenter St.
    Chicago, IL 60607

    Dr. Phil Show
    5482 Wilshire Blvd., #1902
    Los Angeles, CA 90036

    Barbara Walters
    Barwall Productions
    320 W. 66th St., Floor 2
    New York, NY 10023

    Nightline
    WABC TV c/o Karen DeWitt
    47 W. 66th St.
    New York, NY 10023

    CNBC
    2200 Fletcher Ave.
    Fort Lee, NJ 07024

    Annie's Mailbox
    P.O. Box 118190
    Chicago, IL 60611

    Mike Leavitt, Secretary
    U.S. Dept. of Health & Human Services
    200 Independence Avenue
    Washington, DC 20201

    Also, you can write your Congressman by visiting:
    http://www.arthritis.org/advocacy/priorities/priorities_contact.asp


  6. JLH

    JLH New Member

    Note: you can find out more info about the Million Letter Campaign on www.fmaware.org

    ------------

    Another thing this site suggests you do: (However, I think this would be for planning for the May 2007 date.)


    HERE'S WHAT YOU CAN DO!

    If you want to participate in this year’s Fibromyalgia Awareness Day, the NFA is recommending the following activities to help raise awareness:

    * Take a photo of yourself and send to your local media, along with your brief story. Click here for a sample story. (see website)

    * Order the NFA’s poster and post it at your local community centers, libraries, hospitals, schools, etc.

    * Order the 2006 Awareness Day butterfly pin from Cookie Lee. They make great conversation starters!

    * Host an Awareness Day event by your Support Group.

    * Request a proclamation from your local officials declaring May 12, 2006 as National Fibromyalgia Awareness Day.

    * Take the Fibronol Big Sleep-In Challenge and be eligible to win a free 6-months supply of Fibronol™.

    * Show the DVD “Fibromyalgia: Show Me Where It Hurts.” Click here to order your copy of this documentary, which details cutting-edge research into FM.

    * Keep reading for more Awareness Day tips!