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Daily, Call for Action: To all ME/CFS Patients, Loved Ones and Patient Groups 4/25/12

Discussion in 'Action Alerts and Advocacy' started by *GG*, May 5, 2012.

  1. *GG*

    *GG* senior member

    Concord, NH

    by ME/CFS Advocate Robert Miller and Team

    Subject: Request FDA Stakeholder Meeting to Discuss Approval of ME/CFS Treatments

    From: ME/CFS patient advocate Robert Miller and TEAM, April 23, 2012 (Distribute Widely!)

    [Note: Robert Miller has had ME/CFS for more than 20 years. One year ago his wife, Courtney, famously asked President Obama to encourage allocation of more funding for ME/CFS research.]

    For decades, ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) has devastated the lives of patients and our loved ones, leaving us with an alarmingly low quality of life. Today, ME/CFS affects the lives of more than 1 million Americans of both sexes and all ages at an annual cost of at least $21 billion in direct costs and lost productivity.

    As patients and loved ones, we have suffered too long with too little research, a disbelieving medical community and no approved drug treatment specifically for ME/CFS. This has to change! We know that we need many things, such as more money for research.

    But right now, legislation is being put forth by Congress and also via the Food & Drug Administration (FDA) to accelerate drugs for chronic illnesses.

    We want to capitalize on this opportunity now to make a change for ME/CFS.

    We are calling on the Food & Drug Administration (FDA) to hold a Stakeholder meeting to discuss approval of ME/CFS treatments.

    We need the FDA to hear from as many people as possible to ensure that the Stakeholder meeting happens.

    Please E-mail Daily starting today to request the Stakeholder meeting
    (See brief e-mail instructions, e-mail addresses of relevant HHS officials, Senators, and Congress members, and a template for the e-mail letter, below).

    Ask your families and friends to send e-mails/letters on your behalf (using the e-mail letter template below).

    Please distribute this Call to Action widely; use Facebook, Twitter, etc. to get the word out for ACTION NOW!

    Thank you for taking part in your recovery!

    - Robert Miller and Team

  2. *GG*

    *GG* senior member

    Concord, NH



    1. Use the attached template for the e-mail letter to HHS Secretary Kathleen Sebelius, FDA Commissioner Dr. Margaret Hamburg, and others. We ask that you follow this template as closely as possible, as that will strengthen our request.

    2. Personalize the letter. If you use the template, you can add 2 or 3 brief sentences at the end of the second paragraph about your personal story or other information. For example, how long you have been ill, how ME/CFS has affected your life, work, finances, etc.

    (If you do add a personal story, please try to keep the overall e-mail length to less than 1 page because it will be more likely to be read. If you want to go more in-depth with personal stories, we ask that you send a separate e-mail as a follow-up after our action is done.)

    3. Sending the letter. When your letter is ready:

    a. Copy your letter and paste it directly into the body of your e-mail. Please do not attach it as a separate document, as it may not get through e-mail systems and is less likely to be read. Be sure you have inserted your name, any personal details, and closing info where there are PLACE HOLDERS.

    b. Copy the list of addresses provided below and paste it directly into the To box. The one e-mail message will go to all addressees at one time.

    C. Copy and paste into the "Subject" box: Chronic Fatigue Syndrome: Request for Stakeholder Meeting


    E-MAIL ADDRESSES (copy and paste into "To" box)












    For your information:

    Some of the addresses in the list above are the contact people for Senators and members of Congress, as follows:
    Senator Mikulski (Alex_Stern@mikulski.senate.gov

    Congressman Pallone jeff.carroll@mail.house.gov

    Congressman Pitts monica.volante@mail.house.gov

    Senator Murray Annie_Walden-Newman@murray.senate.gov

    The last address Mecfsaction@yahoo.com is included so we can track the number of letters sent.


    You may wish to send a letter (or forward this one) to your senator or congressPERSON as well, especially if they are involved in the Health, Education, Labor and Pension Committee or on the House Appropriations Committee, which has a subcommittee for Health.

    Find e-mails for members of the Health, Education, Labor and Pension Committee here (http://www.help.senate.gov/subcommittees/)

    Find e-mails for members of the House Appropriations Committee here

    If you do not have an e-mail address for your Senator or member of Congress, you can use the following links to access the contact forms for those from your state.

    Senators: http://www.senate.gov/general/contact_information/senators_cfm.cfm

    Congress members: - https://writerep.house.gov/writerep/welcome.shtml

  3. *GG*

    *GG* senior member

    Concord, NH
    E-MAIL TEMPLATE - Copy and Paste into the Body of Your E-mail


    From: [YOUR NAME]

    To: Secretary Kathleen Sebelius, Department of Health and Human Services and Dr. Margaret Hamburg, FDA Commissioner

    Cc: Dr. Janet Woodcock, Office of New Drugs, FDA; Dr. Nancy Lee, Director Office of Womens Health; Dr. Howard Koh, Assistant Secretary of Health; Chairman Tom Harkin, Health, Education, Labor, and Pensions; Senator Barbara Mikulski (D-MD); Senator Patty Murray (D-WA); Congressman Frank Pallone (D-NJ); Congressman Joseph Pitts (R-PA).

    Subject: Chronic Fatigue Syndrome: Request for Stakeholder Meeting

    I am [YOUR NAME] and I write to you to request that the FDA hold a Stakeholder meeting to discuss treatment opportunities for Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis or ME/CFS), a debilitating disease that affects more than one million Americans of both sexes and all ages.

    For decades, ME/CFS has obliterated the lives of patients and their families, leaving them with a pitiful quality of life, no hope of treatment and a medical community ill prepared to care for them. Compounding the personal devastation is the effect on our countrys economic well-being; ME/CFS drains our workforce and costs our economy more than $21 billion annually. In spite of all this, little has been done to address our situation. [PERSONAL STORY]

    I am aware of the FDAs role in assessing the benefit-risk of new drugs on a case by case basis and in shaping the future of medical breakthroughs by bringing stakeholders together to identify and overcome challenges. Yet, ME/CFS patients continue to suffer terribly while ME/CFS as a disease has been moved through six different divisions at the FDA - and the only treatment for ME/CFS has been stuck in the FDA process for over a decade.

    ME/CFS demands real and significant action today. I request that FDA hold a Stakeholder meeting, including Dr. Woodcock, Dr. Lee, expert ME/CFS clinicians, patients, product sponsors and other key stakeholders, to explore opportunities to accelerate approval of treatments. Approval of a drug is critical to changing the face of this disease.

    Robert Miller, an ME/CFS patient/advocate, will contact you in two weeks to confirm scheduling of this meeting.

    As patients and family, we cannot allow our lives to be destroyed any longer. This meeting must happen to advance science for all ME/CFS patients!



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