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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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Thymopentin = Available Ampligen?

Discussion in 'General Treatment' started by CFS-FIBRO-LYME, Dec 18, 2009.

  1. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

    Messages:
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    Houston, Texas U.S.A
    Thymopentin is noted as an immunomodulator that is being tested with AIDS patients - isn't this something that should be sought after by CFS patients?

    http://www.aegis.org/pubs/atn/1991/ATN12307.html

    http://www.aids.org/atn/a-202-04.html

    http://www.cancer.gov/drugdictionary/?CdrID=41655

    Why aren't the CFS groups calling for a trial with us? Even if they don't do it, letting them know we exist and are interested in the treatment protocol will help down the road if approved by FDA for "off-label" use for pwc's, right?
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
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    australia (brisbane)
    hi

    sounds interesting. Alot of aids patient treatments seem aimed at increasing t-cells, i know with me they are almost always elevated so maybe our problem is not numbers but actual function of our t-cells.

    I think with all the talk about xmrv and testing becoming available soon, the drug companies are probably out now making new drugs or using other drugs already developed for other conditions which might help cfs. I think alot of these companies would be keeping it quiet until they have a definate treatment, so know one can jump on their ideas.

    When it rains, it pours.
    Waiting is hard but it will pour.
     
  3. George

    George Guest

    Stage I

    Early trials are going on right now with drugs being tested in the test tube first to see if they have any value against XMRV. Then permits have to be filed with the FDA to give the drug to people. Remember that XMRV is not HIV. These are two different virus's and what works on one does not necessarily work on the other.

    HIV was verified as the cause of AIDS in 1983, the first drug trials took about 7 years. The first drugs were nearly as bad as the illness. Believe me you don't want to take AZT. But in the case of HIV the virus led to death in pretty quick order so people where willing to do anything and take anything because they were going to die anyway. It was another 4 years before they came up the first decent drug cocktails that really worked.

    XMRV was only discovered in 2005 (November) and was first published in May of 2006, It wasn't verified as a retrovirus until the end of 2006/beginning of 2007. It's only been 3 years since the virus was discovered and only 3 MONTHS since it was associated with CFS. Prior to that it had only been associated with prostate cancer. Normally we wouldn't see drug trials for another 2 to 3 years. However, with the potential to make a ton of money off this illness and drugs more or less just lying around we will probably see our first drug trials by this time in 2010. Which is quick, it's amazingly quick. It's barely enough time to file the paper work quick.

    There's also a good chance that Ampligen will get approved this year and be available next year for sale. But not everyone will be able to use it. We have yet to establish a cause for CFS/ME as being a retrovirus. The virus could just be along for the ride. We still haven't sorted the patient population out yet and finally the biggy is that CFS/ME won't kill you. It only steals your life. So the urgency that was there with HIV won't be there with illness.

    Bottom line is we gata wait:(:(:(:(:(:(:(:(
     
  4. CFS-FIBRO-LYME

    CFS-FIBRO-LYME

    Messages:
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    Likes:
    16
    Houston, Texas U.S.A
  5. George

    George Guest

    Sorry should have been more specific

    The Gordon Group has ongoing stage III trials with the company right now. They only need 6 months to complete the paper work (If they do it right this time!) then another 6 months for review. I think and that's only my thinking that the FDA will go ahead and fast track it.

    The FDA can take as long as a year to go over the paper work. Fast track would be end of 2010 which is what I meant by this year (sorry, sheepish grin, my brain done left this year behind). But it could be as late as summer 2011. If the XMRV pans out as a causative agent for CFS there will be a lot of pressure to push Ampligen out there.

    Hope that's more clear. Some days the ol brain is just Mud!
     

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