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Graham McPhee spells out some of the cold, hard facts about the dismal state of ME research and politics, and has some suggestions as to what we can do about it ...
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Article: Accelerating Treatments For ME/CFS: A Call to Action for the FDA

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Apr 25, 2012.

  1. SickOfSickness

    SickOfSickness Senior Member

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    Thanks Cort.
     
  2. August59

    August59 Daughters High School Graduation

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    I agree with "justinreilly" as it may ruffle the right feathers. I don't think it still hurts to reming them os of the massive funding that was stolen fron CFS researh years ago age had that not not happened there very well may not be 4 million people walking around in the US with this disease, there may not be 10 million walking around (i'm geussing at numbers here) the world with a disease that has not been proven that is not contagious. Also, out of the 4 million in US and 10 million worldwide approxiamately 20% of these are disabled (again , I do not know these numbers), which accounts for an enormous amount of money.

    If even a cause and, especially if a cure may have been discovered due the enormous amount of funds had not ben squandered in the earlier years. Most of the disabled are bed-bound or at least house-bound and the financial burden imposed on society is astronomical in these times of economic turmoil. I feel very positive the perecent of disability cases that are being approved are increasing substancially with new test being developed proving their disability status will only continue to devaste the economical status of these programs at a time when they are struggling.

    If God would bless us with a cure through the hands of the researchers that are devoted to bringing and end to this horrible disease, while some archaic doctors and researchers who wish to ignore their oath of office, but instead they bow down to the money of the pharmaceutical and insurance industry. We can still stand so that approriate funding will be provided so that treaments can be developed which may help some and maybe all of the disabled people of this disease become members of society and help it prosper again and contribute to the well being of the economy, instead of hurting it as we have in the past. The financial impact of this disease alone is staggering to the sum of (somebody could probably fill in this amount closely) annually. I doubt these numbers include people with CFS, such as myself that have had to live on food stamps for years and medicaid, while waiting for Social Security Disability comes through if and when it does, but my doctor will not give me clearance to return to to work due to the high probability of hurting someone and inability to concentrate adequately to perform any job. Medicaid, food stamps, Family Indepependance cost the country more than Social Security does bacause of the amount of people employeed to administer these programs.

    As time goes on the chance of CFS becoming contagious could become greater. We just don't know! I beleive history is bearing this out that CFS and/or it's subsets are becoming more prevalent in society, just as Autism is!!
     
  3. Cort

    Cort Phoenix Rising Founder

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    Here was my email...


     
  4. Cort

    Cort Phoenix Rising Founder

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    Remember one email a day until May 2nd when Bob will meet with them to discuss a meeting...
     
  5. frenchtulip

    frenchtulip Senior Member

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    I just sent my letters. Thank you so much for having all the info ready for us and making this very easy!
     
  6. beaker

    beaker CFS/ME 1986

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    Question :

    Is there anyway to include ones senators and congressperson, w/o filling out a form on their website ? thanks
     
  7. medfeb

    medfeb Senior Member

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    Beaker,
    Not that I know of unless you happen to know their email addresses or the address of one of their aides. Unfortunately, I've never seen a list online anywhere of their email addresses.

    Thank you for sending a letter!
     
  8. BobM

    BobM

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    Thank you Justin, But

    Thank you Justin, But we need emails sent Daily. Please send the same email by clicking on reply to all and erase your email address in the To: Box, DHHS is telling patients to STOP sending emails, which means we are accomplishing our Goal...To get their attention to ACT and set up a meeting. Please spread the word to keep sending emails Daily thru May 2nd.

    Thank you Again,

    Robert Miller
     
  9. anniekim

    anniekim Senior Member

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    Done. Have emailed and will send again tomorrow. sorry I wasn't able to do it sooner. Thanks for doing this....
     
  10. anniekim

    anniekim Senior Member

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    ps I live in the UK, but sent it when I read you think it would be worthwhile for non American citizens to also e mail
     
  11. Cort

    Cort Phoenix Rising Founder

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    This was my latest:

    Keep emailing!


     
  12. medfeb

    medfeb Senior Member

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    A reminder to send letters for the FDA Call To Action by tomorrow!

    Have you already sent your letter to Secretary of Health Kathleen Sebelius asking for a meeting for ME/CFS to push the FDA to approve new drugs for ME/CFS?

    If yes, YEAH! If not, remember - INTENSE LOBBYING is how AIDS/HIV got put on the government's map. AIDS/HIV now gets $3 BILLION a year for research from the NIH (National Institutes of Health); CFS gets $6 million. AIDS/HIV sufferers now have multiple drugs to fight the disease. We have none. Dr. Nancy Klimas has said, "...My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses, I would rather have HIV...." (NYTimes, 10/15/09)

    WE MUST STAND UP FOR OURSELVES, and ask our family and friends to do the same, or our situation will NEVER change. Please write. It is only by inundating these government officials with letters that we will get any action to research and approve treatments. Many other, much lesser-impact diseases get FDA approvals for drugs. We must insist that we be listened to!

    IF YOU HAVE NOT SENT IN A LETTER YET, PLEASE DO SO NOW. It is not too late. Please send in your letter and ask your relatives and friends to do the same - ideally by the end of the day tomorrow (May 2) if possible but otherwise as soon as you can. The letter, email addresses and instructions can be found on Co-Cure and Phoenix Rising

    Thank you to everyone for calling for Secretary Sebelius and Dr. Hamburg to hold this meeting!
     
  13. Ember

    Ember Senior Member

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    Here's one FDA response: Fatigue supplements are actually misbranded drugs: FDA (http://www.chicagotribune.com/featu...ts-illegal-drugs-fda-20120504,0,5706746.story).
     

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