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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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Bob Miller on Hunger Strike: Send This 1-Minute Email to Get FDA Approval for Ampligen

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 1, 2013.

  1. BEG

    BEG Senior Member

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    Doing the same, Merry.
     
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  2. caledonia

    caledonia

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    If Bob doesn't get Ampligen, his quality of life will be so poor that he might as well be dead. That's the message. Ampligen is safe and effective for a subset of patients. The FDA is still waffling, for no apparent reason. This battle with getting Ampligen approved has been going on for at least 20 years!

    I'm not a big believer in conspiracy theories, but think about this - if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham. If you were the govt. wouldn't you waffle?
     
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  3. maryb

    maryb iherb code TAK122

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    People have to do what they feel is right, I couldn't go on a hunger strike but Bob is obviously passionate about what he is doing and I fully support his right to do it. If Ampligen is approved okay it may not be because of Bob but good on him for doing what he believes in, publicity about the seriously ill with ME/CFS is NOT what the government want to see either in the UK or the USA.
    If it is approved watch out Wessley, it means as Caledonia said,

    'if the FDA approves Ampligen, it means the govt. admits that ME/CFS is indeed a real and very serious biologically based disease which can be treated with an approved medicine. It also means that they admit that the last 30 years of psychologically based research from the CDC is a total sham'

    That applies to the UK too.
     
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  4. Kati

    Kati Patient in training

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    It makes you wonder, also, why Peter White and his firends managed to publish a paper on CBT and GET hours away from FDA deadline to providing an answer.
     
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  5. wdb

    wdb Admin

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    I didn't write anything to dispute any of that, like I said I fully support the cause and would love to see Ampligen approved. My concern is over supporting extreme tactics like hunger strike and whether that would actually help or harm the cause. It may help but we should not overlook the harm it could do. Historically extreme action of that nature whether real or perceived has been a disaster for the community, it has reinforced prejudices of us being a crazy irrational and has provided ammunition that has been very successfully and repeatedly used against us. It brings no evidence or rational argument to the table and may even be taken as a sign that we have run out and so are resorting to other strategies.
     
  6. jimells

    jimells Senior Member

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    Even His Imperial Highness Steven Harper (prime minister of Canada) blinked and agreed to a meeting with First Nations Chiefs when Chief Teresa Spence went on an extended fast. Chief Spence's action received wide coverage in Canada (Canada? Isn't that a U.S. territory??) and stirred up much heated debate on the poor treatment and living conditions of Canada's native peoples.

    There's no guarantee that Bob Miller's action will be successful, but doing nothing is a recipe for failure.
     
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  7. Kati

    Kati Patient in training

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    wdb, I wonder what other extreme tactics can be used?

    I am not aware of any other tactics that have worked in inciting action from the governments and agencies.

    What Robert is doing is definitely extreme- however nothing that's been done before has worked. The truth is that ME or CFS or whatever you want to call it is not a priority for our governments, and is not something governments want to touch either- it doesn't give political parties a better image-

    Status quo sounds so inviting for them.

    It's time that things change.

    Recently there was a hunger strike in Canada by a chief of an aboriginal reserve, she was asking for a meeting with the prime minister. She slept in a tee pee near the Parliament and generated lots of publicity and newscast from all around the country. That lasted 6 weeks. She was not eating but drank tea and fish broth.

    jimells you beat me to it by 1 minute !
     
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  8. Nico

    Nico Senior Member

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    I have also contacted a local news reporter in our city via email her FB page. She is fully recovered from ME/CFS...works...got married....baby. Anyway...a few years ago she did a 5 day piece on ME/CFS (I didn't get to see it). I don't know if it's too tangential to contact her, but I did anyway. I actually sent her Cort's new link and referred her to PR as well. If anyone cares to know who she is this is her FB page. You can find her private news room email in the about section.
    https://www.facebook.com/pages/Jennifer-Johnson/142415085792722
     
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  9. GcMAF Australia

    GcMAF Australia Senior Member

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    Well a number of sufferers are very very sick
    some think well what if I collapsed so a hospital had to take me in!
    A lyme person died without treatment
    I dont agree with a hunger strike as such, would not encourage it, but I will support him in any way i can.
     
  10. SOC

    SOC Senior Member

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    I think those of us with mathematical/scientific inclinations sometimes have a hard time understanding the value of not entirely logical techniques. A large part of the problem for us is that it's not logical scientific people making the decisions -- it's people that respond to emotional arguments more than logical ones.

    I realize this is not true of all scientific people, but I have learned that I have to leave these kinds of things up to political and public relations types who understand how playing on the emotions affects policy. Journalists are attracted to stories like Bob's hunger strike and we need journalists to start paying attention to us. This is definitely not my area and it confuses the heck out of me. :confused:
     
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  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Update from Bob Miller today:

     
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  12. Sasha

    Sasha Fine, thank you

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    That's a worrying update - this is clearly tough on Bob. Let's support him all we can.
     
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  13. wdb

    wdb Admin

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    Well lets hope there was a public relations expert behind this who has done their research and knows what they are doing and that Bob is seen as someone that needs Ampligen more than someone that needs psychological intervention. I won't say any more other than to wish Bob and the campaign good luck.
     
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  14. Merry

    Merry Senior Member

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    The issue of treatment for ME/CFS patients is a social justice issue, first and foremost, rather than a scientific one. To address the neglect of ME/CFS patients by governments around the world, political, nonviolent action is called for.

    Dr. Gene Sharp listed the methods of nonviolent protest and persuasion in his book The Politics of Nonviolent Action, Volume 2, published in 1973. Hunger strike is number 159b on the list, compiled from Dr. Sharp's book, at the Albert Einstein Institute's website:

    http://www.aeinstein.org/organizations103a.html
     
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  15. snowathlete

    snowathlete

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    Extreme action in the ME/CFS community has been about a minority of people adopting an extreme but also stupid approach. Taking extreme action against the opposition is not going to win you any fans, but taking extreme action against yourself as a demonstration is good because it puts the focus on you, not the opposition. Extreme but appropiate action can be very positive. Think Gandi and The Suffragettes. Personally, I think extreme action like Bob's (note, I am not condoning all extreme actions) is all that is left to a group like ours that is so repeatedly downtrodden. I think we should do more of it. We have tried making rational arguments and it doesnt work because there is a group of people that act against that rationality with false information and propoganda. Bob's strategy escallates above that business and forces people to take a serious look at the real problems instead of just ignoring them. To date, we generally make a little noise, but ultimately go away into the shadows. Bob is doing something noticable.
     
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  16. Nico

    Nico Senior Member

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    AGREE! I was thinking of contacting Human Rights Watch about this. Also, in my daydreaming about this.... can we sue (class action) the FDA for some kind of human rights violation? I guess the verdict may be in on Monday, 2/4.

    Ok, adding an edit here. I just contacted Human Rights Watch through their Facebook message function. I added this link/thread.
     
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  17. BEG

    BEG Senior Member

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    (The book Merry mentioned by Gene Sharp is available for Kindle rather cheaply.

    When the Syrian revolutionaries were just beginning, they consulted with Gene Sharp, who, of course, recommended nonviolence, and told them they needed to change the system by working within its institutions. Haven't we tried that with the CFSAC? Merry's post reminds me of Henry David Thoreau's, Civil Disobedience, who also advocated nonviolence. Aren't we doing that with all our emails?

    IMHO, I think that maybe Bob thought it was time to notch it up just a tad. Certainly his actions are nonviolent. I believe the only disappointment is that more aren't joining the hunger strike and being very vocal about it.

    In the meantime, the rest of us need to keep up the email campaign. Do it NOW! (see Sasha's signature below.)
     
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  18. Nico

    Nico Senior Member

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  19. SpecialK82

    SpecialK82 Senior Member

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    Does anyone remember the name of the man that is a reporter for Huffington Post, he has ME/CFS and did a story on it within the past year or so? I'm sure he would love to pick up this story.

    Also, I wonder if we should start writing ABC, CBS, and maybe some cable news channels - we could link to the local news show. Probably need to write that what is going on with Robert is just the tip of the iceburg - that there is a HUGE story here, if they want to investigate.
     
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  20. Nico

    Nico Senior Member

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