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A wall street stock journalist contacted me for the story he is writing on the FDA Dec 20, 2012 Ampl

Discussion in 'Action Alerts and Advocacy' started by lartista, Dec 13, 2012.

  1. lartista

    lartista Senior Member

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    MY ME CFS STORY.... Francesca Owens from Spoleto Italy


    A wall street stock journalist contacted me for the story he is writing on the FDA Dec 20, 2012 Ampligen drug hearing. If you all have any ideas of where else we can get this story out, please let me know.
    Here is what he has written so far about my piece but the article will be very long focusing on our illness and AMPLIGEN;
    I have recently been in contact with one of the leading International patient advocates in ME(CFS). Her name is Francesca Owens. Francesca was contacted today by the FDA advisory committee for Ampligen and informed that her written testimony was accepted and will be reviewed by the committee prior to the Dec 20th meeting. Francesca’s story is unbelievable to say the least. Before ME(CFS) Francesca lived a life most could only hope for. She was a successful stockbroker, held a public office in Colorado for 9 years, wrote award winning grants to raise money for wildlife causes, was a competitive fitness champion, and had an internationally emerging art business helping wild tigers. With ME(CFS) Life changed this incredible life of an overachiever. ME(CFS) slowly began to rob her life as she knew it eventually losing everything she worked so hard for and ultimately becoming bedridden un able to perform the simplest tasks. It took 9 desperate years of suffering, uncontrollable infections, urinating pure blood, hospitalization after hospitalization, open heart surgery, post-surgery strokes, heart rhythm problems and losing eye sight through optical nerve damage. She also has cognitive impairment saying her “brain fog was so severe that she could not count change to pay for a cappuccino” Unlike patients with chronic debilitating disease such as Aids or Multiple Sclerosis, who upon diagnose start a treatment protocol, Francesca’s diagnoses was met with question marks. If approved, her Dr. would have immediately started her on Ampligen, instead, to keep her alive she was put on several experimental drugs borrowed from a variety of illnesses. Naltrexone, a drug for heroin addiction, valacyclovir used for herpes 1 and 2, HHV-4 and HHV-6 for Epstein Barr, prescription strength vitamin D and Imunovir for AIDS patients to help rebuild natural killer cells function. All of these medications have given her 4-6 hrs a day of a which she spends the majority of advocating for ME(CFS) research and treatment, helping patients around the world come to terms with the disease. She has a YouTube channel where she submits daily videos that chronicle her struggle and offer advice to other suffers. Francesca has even tried to get an Ampligen clinical trial started in Italy but because of the drugs status in the US, other countries are unable to help. Because the disease has been disregarded by CDC and FDA her former insurance company (which has since dropped her coverage) would not pick up the expense for all the medications, considering their not approved for ME(CFS). Imagine hearing the countless success stories of patients lucky enough to be enrolled in Ampligen clinical trials all the while sitting on the sidelines helpless. Most people complain about the wait time at their Doctors office or the side effects of whatever medication their on. Not ME(CFS) patients, they travel hours to see specialists, write letters to the president, or in Francesca ‘s case lobby a foreign country to start a clinical trial just to have access to medication. Francesca is one of 4 million people in the US and 17 million worldwide that deserve the chance to get their lives back. The advisory committee will vote to approve Ampligen on DEC. 20th because of the tremendous pressure these patients have applied. The FDA can start to repair the damage it’s done ignoring this disease for years simply by voting yes on Ampligen.
    Francesca's life could again be a beautiful symphony and just maybe Ampligen will be her instrument. I for one think she’s worth it…
    beaker, Bob, SpecialK82 and 9 others like this.
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Good onya Franci, luv ya work :thumbsup:
    ggingues likes this.
  3. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Yes, good for you, Francesca! Thank you for all you have done and are doing.

    I lived in Boulder for about 14 years. Where in Colorado were you, may I ask?
  4. lartista

    lartista Senior Member

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    I live in Italy and I live in Littleton. I will be arriving in Denver Dec 20th for 1 month....
  5. lartista

    lartista Senior Member

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    Grazie bello mio!!!!
  6. lartista

    lartista Senior Member

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    I will stick with ME/CFS. I feel medically and internationally it is becoming better known for the 5 letters. No offense... I am on your side, I am one of US.
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I think ME/CFS is ok, I just much prefer ME and am mostly arguing against CFS on its own. Thanks for using ME at all (in MECFS). btw, it's my signature, I wasn't directing it at you.
    Purple likes this.
  8. lartista

    lartista Senior Member

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    Hi you guys... I do not have time to read the responses here but I will include one letter to numerous stock analysts who are writing me in private. I beleive my letter will explain who was my target market and my line of thinking. I do not need any one to agree with me as I am a maverick... and it was me i was offering for human sacrifice and the FISH CAME BITING JUST LIKE I THOUGHT!!!! Numerous stock people of money managing firms are nor listening just a little but to us and considering what the chronically ill have to say. Thank, francesca

    "Dear EPE,
    Unfortunately often the wall street area doesn't listen to the people who are ill. They read only information they want and they know nothing about the illness... really nothing about treatments and really nothing often of what they are writing about when it come to this illness.

    I am an ex-wholesaler for accredited investments, ex-stockbroker with over 25 years experience and served 9 years in public office. I know why I was hired and how I was trained.

    My point was in a stupid way to get the attention and then hold the attention of anyone in on wall street. Even if it means sacrificing ME and my reputation, I was willing to do so. ME/CFS has robbed our lives and made us invisible. I plastered the video everywhere on wall street and interesting enough the hits came in. I then saw the men talking about the illness and how they had seen my serious videos. I even started to see a compassionate side come out of wall street.

    My accomplishments to date in life are greater than most people so for that, I was secure in offering myself up for human sacrifice and it worked...

    The ampligen drug hearing is about helping really, really, sick people... I also wanted to see what was the best ADAM Feurestein had to throw out there as the majority of what he is lies out right lies, or manipulated points of view, fact very seldom enter into this. He showed his cards early, which will help Ampligen see in advance of the Dec 20th hearing what was being said on the street. I stayed in close contact with the AMPLIGEN people letting them know what I was doing and where they needed to be watching as soon as the analysts started writing.

    I believe my little piece has influenced a small segment of wall street to listen to the educated sick people and see what they have to say. It is our lives after all and the drugs are for us, not for the stock market to decide our quality of life. That's all.

    Yes ampligen is NOT the fix all... but the CDC has engaged in very likely misappropriation of millions of dollars of our funds to other illness. Why was wall street including that in their reporting... because they do not ask, and they do not really care. The federal employees hung 8 x 11 sheets over their desks saying... I am tired today... I must have CFS.

    President Obama is aware of all of this and has assigned several of his key staff to follow this FDA event. Why was that not mentioned in all the reporting.

    So I in no way am trying to be harsh with you... I just want to enlighten wall street a little better... sometimes diamonds in the rough are hard to spot.... for those who have ADLs of 3 to 6, and if ampligen gave them a 10% to 25% increase in functioning... AMPLIGEN is their world.

    Yes Ampligen may have not done all the best, and may not work for every one (which it does not) and the specialist are trying to isolate in the blood testing who it works best for. That too was not mentioned...

    If the medical industry isolates who responds to ampligen, then there could be an almost 100% positive response rate, how quickly would wall street turn towards ampligen versus bam-ing them.

    Wall street also did not see how close in bed the FDA is with the CDC. With Obama looking in on them, the FDA even with this negative letter, had to change their posture with our illness after Obama's adviser spoke with them....

    I hope this helps... if we (ME/CFSers) do not get a treatment, we are all at very high risk of cancer, Leukemia and lymphoma. My natural killer cell test function was 1.87%, near zero. Zero means cancer is at my doorstep. I take imunovir (and AIDS drug), I take an opioid drug (naltrexone) that heroin drug users take and MS people take. I take 3 grams of valcyclovir that people with herpes 1 and 2 take for 10 days, 1 pill a day for out breaks. I take 3 grams a day for life that is toxic because I have two types of herpes running through my blood infecting my organs....

    So when someone looks at these other issues on the surface, they do not see the DIAMOND IN THE ROUGH. So I used my stupidity and my body to get a predominantly male industry listening and thinking... so I see it as a win for my people.

    I hope this helps. WE ME/CFSers are desperate... I hope this helped... The illness patient community needs to be listened too.

    I would be sincerely interested in your comments.

    THANK YOU FOR YOUR TIME.
    This is just to give you an idea... I KNOW WHAT I AM TALKING ABOUT AND I USUALLY SCORE 99% OF THE TIME in whatever project I touch...

    AMPLIGEN will win... if it is not Feb 2013, it will be soon!

    www.coloradolottery.com/GIVING-BACK/PROJ.../
    (I wrote this winning grant plus 3 others for a total of 1/2 million raised volunteering by myself: Great Outdoors Colorado Jefferson Grant Ranch Nature Observation Park and Learning Gardens $90,000)
    francescaowens.com
    (I was reviewed by the Smithsonian)
    beautyofthebeast.org/
    (I had sponsors galore)
    vimeo.com/53456299
    (I do TV reporting in Italy now when I am stable)
    www.nfwf.org/AM/Template.cfm?Section=Hom...
    (I ran the Tiger art campaign volunteering for them)
    www.cepf.net/Documents/tigerwatch_spring...
    (I worked with biologist around the world)

    Francesca/BustieBB
    heapsreal likes this.
  9. JustJack

    JustJack put on yer dancin' shoes

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    Sacramento CA
    I am with you all the way on this. I know AF has an agenda, and he has played his cards. He has outright lied...period. We will know tomorrow if we get a majority vote. I pray, for all of our sakes, we do. JJ
  10. lartista

    lartista Senior Member

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    HERE IS THE LETTER HE WROTE BUT I WAS IN FLIGHT FROM ITALY!
    "What a wild week it has been. Hope your well. I wanted to run something by you. Yesterday I talked to a former FDA employee who wishes to remain anonymous. He has served on several fda panels and knows exactly what it takes for a drug like ampligen to get approved. He told me that for ampligen to win approval patient testimony must focus on ampligen and not just ME/CFS. If patients simply talk about the unmet need for treatment the FDA panel is likely to vote no and assure patients that they will fast track the next medication for CFS. The problem is that there is nothing even close for treatment. Patients must demand ampligen specifically and reference the FDA's own statement saying they believe CFS is serious and life threatening. They should mention the lack of efficacy and safety in other recent drug approvals for serious life threatening diseases. Most of all patients need to tell the panel that they are willing to take the risk for potential benefits. In summary

    1. Patient testimony must include a plea for ampligen
    2. Focus on FDA's statements that CFS is serious and life threatening. Reference other diseases with drugs approved with greater risk than ampligen.
    3. Testimony should be clear concise and patients should tell the FDA they are willing to accept any risks for a potential reward with ampligen.
    4. Patients must tell the FDA that they will not accept no for an answer.

    If you can get this information out to any patients who will be speaking tomorrow it could make the difference. He is an expert and he knows exactly what it takes.
    Also, he said you could reference him as former FDA panel member but he was not willing for obvious reasons to give his name out.

    Fingers crossed,
    JOHNNY"

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