Congressman Dennis Kucinich's Office Called RE: CFS

Discussion in 'Fibromyalgia Main Forum' started by IndianPrincess, Sep 1, 2006.

  1. IndianPrincess

    IndianPrincess New Member

    Friday, September 1

    Hi Everyone! As many of you may already know, I gave testimony last week at Trinity Cathedral in Cleveland, Ohio regarding healthcare issues. I posted my testimony below.

    Many candidiates for and current and past members of the U.S. House of Representatives from Ohio were present as well as representatives from the congressional offices of Congressman Dennis Kucinich and Congressman Sherrod Brown.

    When the forum ended, I passed out the brochures from ProHealth about Fibromyalgia and Chronic Fatigue Syndrome with a note written on these brochures asking for support of continuation of the advisory committee at The Department of Health and Human Services whose charter will end September 5, 2006 (Tuesday).

    I also wrote my name and phone number on these brochures.

    Yesterday, I received a phone call from Jennifer at Congressman Kucinich's district headquarters in Lakewood, Ohio.

    Jennifer told me that Congressman Kucinich supports research and benefits for the Veterans of Desert Storm who suffer from Gulf War Syndrome and is aware of fibromyalgia and chronic fatigue syndrome, both of which are part of Gulf War Syndrome.

    I sent Jennifer to www.immunesupport.com for more info about the CFS Advisory Committee. Soon she called back asking for help in researching wqhat this advisory committee is doing.

    I spent 6 hours cutting and pasting to an e-mail all meetings and minutes as found at The Department of Health and Human Services website at www.hhs.gov/advcomcfs/index.html and click Meetings on the left.

    I encourage all of you to take the time and e-mail your representatives and request their support. Remember you voted them into office and they are supposed to work for you!

    Cindy


    My name is Cynthia Miller. I am 50 years old, was a journeyman lithographer by trade until I could no longer work due to the disabling symptoms from two conditions known as Fibromyalgia Syndrome and Chronic Fatigue Immune Dysfunction Syndrome.

    The lack of interest, education and downright prejudice in the medical community regarding these two conditions lead to my health failing.

    The medical community, with very few exceptions and despite ongoing medical research still considers Fibromyalgia and CFIDS wastebasket diseases. The medical community trivializes the severity of the symptoms and the impact that these two "diseases" have on one's ability to function minute-by-minute, hour-by-hour, day-to-day at home and in the work environment - life in general.

    Due to the ignorance of the medical community, many of us have lost our jobs due to inability to function in the work environment. This results in loss of health care benefits, income, of course; inability to receive adequate treatment which was the reason we lost our jobs in the first place, and fear of losing and / or the eventual loss of housing.

    We lack support from our doctors to receive public benefit safety nets that our tax dollars have paid for. These include welfare cash assistance and of course Social Security Disability Income.

    Our dilemma is that there is no conclusive test for either condition such as blood work that pinpoints a defective gene like a cancer cell. There are various tests that show abnormalities but no clear marker of these "diseases".

    I personally was homeless for 6 months; sleeping at Community Women's Shelter on Payne Avenue.

    Now, I referred to my conditions as syndromes.

    The term syndrome derived from the Greek means literally "run together".

    In medicine, the term syndrome is the association of several clinically recognizable features, signs, symptoms, phenomena or characteristics which often occur together, so that the presence of one feature alerts the physician to the presence of the others.

    In recent decades the term has been used outside of medicine to refer to a combination of phenomena seen in association.

    What I just described to you is a syndrome of having to deal with the medical community and the effect of lack of proper treatment, support, loss of job, income, health care, housing, etc.

    I could no longer function on my job. The biggest blow was when I couldn't remember how to do my job.

    All of the aforementioned cost me my career, my independence, social life and, of course, income which led to my homelessness.

    I participate on a message board/online support group for people with Fibromyalgia and CFIDS. The website is www.immunesupport.com.

    Daily I read posts from those whose SSDI was finally approved after much suffering over the years from bureaucratic red tape resulting in financial disaster.

    These people, once approved, can barely make ends meet due to the exorbitant cost of Medicare, needed medications and therapy plus having to pay for housing, groceries, etc. They have also lost their foodstamp benefits.

    Like the "diseases" we are afflicted with, our current state of healthcare in this country is a syndrome. One inadequacy in the system causes chaos in trying to maneuver through the system to get help.

    It is my belief that once the healthcare system is fixed, the economy will improve and poverty and homelessness will lessen dramatically!

    END


    [This Message was Edited on 09/01/2006]
  2. smalone

    smalone New Member

    We need to get this illness into the limelight so more research can be done and people aren't so ignorant about us!
  3. HuffyMcT

    HuffyMcT New Member

    I also know the devastation as many of us do of this disease....I Thank you and applaud your efforts....we all need to be advocates. Thank you for encouraging me to join in this effort.
  4. Cromwell

    Cromwell New Member

    It does not surprise me that Dennis Kucinich's office contacted you. They run on compassion, and are, for a change, really caring politicians.

    Thank you for your advocacy and hard work.

    Love Anne
  5. Bambi

    Bambi New Member

    of the Senate in action.

    Unfortunately too many don't take Mr.
    Kucinich seriously. He's just too much of a liberal who wants to see peace in the world and fairness for the people. I like him from what I've seen and heard but I also know he's not taken very seriously by his fellow Senators and many Americans. He almost seems to come from another time, the 60's and 70's when the flower children had hopes of a world peace based on just kindness to one another and a live and let live attitude.

    Unfortunately the world doesn't work that way and voices for peace are drowned out by all of the violence and terror around the world and here at home. Violent crime is way up all over the country as police forces are cut due to funding cuts.

    It goes down the line or up the line from housing for the pooor to health care and every aspect of our daily lives. Empathy almost seems to be dead among the healthy and able. Homeless and mentally ill are beaten up on the streets as a game. It's a sad commentary on the way things are.

    I hope someone will listen to whatever Mr. Kucinich can do about research and other problems facing us and the rest of the communities of those ill with so many things. My realistic side says it's doubtful however. But, hope is alive as long as we are and that's important too.
  6. IndianPrincess

    IndianPrincess New Member

    Dennis was my congressman for 10 years when I lived in Berea, Ohio. I no longer live in his district but he is most definitely an advocate of the people and for the people.

    His office in Lakewood, Ohio works closely with The Northeast Ohio Coalition for The Homeless, which I continue to be involved with and volunteered for when I was homeless.

    Dennis and his family were homeless when he was a child.

    He is one of US!



    http://kucinich.house.gov/

    Click on CONTACT DENNIS which will link you to a page where you can find your congressman.

    I recommend writing a brief synopsis of what you are going through whether it be health issues, financial, employment, Social Security, etc.

    Type into a Word document and copy and paste. Remember once you copy you can paste into multiple documents by just putting your cursor down on the Message area and going up to Edit and clicking Paste.

    Ask for whoever you write to to support The CFS Advisory Committee extension to meet with The Department of Health and Human Services.

    For reference: www.hss.gov/advcomcfs/index.html

    If writing to Dennis, mention that you appreciate his continued support of CFS, Fibromyalgia and Gulf War Syndrome.


    Please try to do this today before the expiration of September 5th.

    Cindy

    Lakewood Office

    14400 Detroit Avenue
    Lakewood, Ohio 44107

    Phone (216)228-8850
    Fax (216)228-6465


    Parma Office

    5983 West 54th Street
    Parma, Ohio 44129

    Phone (440)845-2707
    Fax (440)845-2743


    Washington Office

    1730 Longworth HOB
    Washington, DC 20515

    Phone (202)225-5871
    Fax (202)225-5745


    [This Message was Edited on 09/01/2006]
  7. MsE

    MsE New Member

    Your letter is beautifully written,Indianprincess.
  8. Marta608

    Marta608 Member

    ...good job!

    Marta
  9. IndianPrincess

    IndianPrincess New Member

    ..that all of you who commented will write your representatives.

    Cindy
  10. kholmes

    kholmes New Member

    Great job on your advocacy for CFS and Fibro!

    In this next month, I plan on writing a similar letter to my congressmen (I live in New Mexico.)

    I think this type of advocacy is something we all could do.

    Kholmes
  11. IndianPrincess

    IndianPrincess New Member

    ..a letter. The above was my testimony speech from a forum I spoke at.

    Any chance of writing this weekend or copying and pasting anything you wrote on this board?

    Cindy

    P.S. Thank you everyone for your posts!
  12. ephemera

    ephemera New Member

    a well deserved bump for IndianPrincess
  13. pamj

    pamj New Member

    Thanks so much for all of the work you are doing!

    I have also written letters to my representatives this week regarding the continuation of the advisory committee at The Department of Health and Human Services. My niece has been helping me with my awareness work, and we've been using each person that we reach as a connection to the next...

    That's also great that you gave them the brochures. I ran out and keep forgetting to get more. I'll do that right now :)

    thanks again!
    Pam
  14. tata1580

    tata1580 New Member

    Nice job, Indianprincess!!

    Thank you
    Tami
  15. IndianPrincess

    IndianPrincess New Member

    I am so glad that you have contacted your representatives also!

    So many write on this board what they are experiencing telling US only.

    Imagine the impact those writings would make if everyone would take the few minutes spent posting on this board and devoting the time of writing to their representatives instead.

    Those brochures are our tools to spread awareness. I also need to order more for when I speak at various forums about being homeless and at healthcare reform forums I also speak at.

    The Cleveland chapter of America Votes (www.americavotes.org) has also approached me about speaking for their public forums for increasing voter awareness. I will also talk about FMS/CFIDS there.

    We need to take advantage of every opportunity set before us.

    "You must be the change you wish to see in the world" Ghandi
    That is such a powerful statement!

    Keep up your efforts too!

    Cindy
    [This Message was Edited on 09/02/2006]
  16. IndianPrincess

    IndianPrincess New Member

    As you take the time to write about your suffering here is well worth the time to copy and paste a letter to those who can help you!

    It will be time well spent.

    "You must be the change you wish to see in the world" Ghandi


    Cindy
    [This Message was Edited on 09/02/2006]
  17. pamj

    pamj New Member

    I also believe in what Ghandi said... it's so true!

    I know it's been mentioned, but the sample letters on the cfids.org are very easy to use. If everyone who is able to type on this board could just take a peek at them, and enter their own information on them to send them out, think of the attention we could get.

    They already have a list of the representatives in every state, and they automatically email it for you. They also have lists of all of our local media.

    I urge everyone to pick at least one of the letters, on at least one of the issues, and please send it. This is a huge year for awareness, and I have seen how much of a difference even one person can make.

    Thanks!
    Pam
  18. wordbyrd

    wordbyrd New Member

    Thank you for posting your letter and all the info about contacting our state representatives.

    I promise to contact my reps in Colorado this week, after I compose a letter describing the impact of CFIDS and FMS on my life.

    Together, we can make an impact.

    --wordbyrd
  19. monkeykat

    monkeykat Member

    Hi Indianprincess,

    I am from the Cleveland area also. I'm so awed by your courage and the wonderful speech you gave. Great job!!!

    Monkeykat
  20. IndianPrincess

    IndianPrincess New Member

    thanking me for all the info I sent to them.

    Cindy