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Wanna know where the research money for "PTLD" Lyme is going?...

Discussion in 'Lyme Disease and Co-Infections' started by Antares in NYC, Jan 20, 2016.

  1. Antares in NYC

    Antares in NYC Senior Member

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    Many of us in these forums are familiar with the controversies on Lyme, the unsavory characters surrounding it, the inexplicable chummy and privileged relationship (revolving door, really) between the CDC and IDSA, and their campaign (proven through FOIA requests) to vilify patients.

    As you know, they even came up for a term for those Lyme patients (20 - 25% of the total) that never get better, even after treatment. They call it "PTLD" (post treatment Lyme disease), but they don't investigate it or try to find a way to improve the lives of now hundreds of thousand of people affected. As many have suggested before, PTLD is a garbage bin diagnosis to hide their shortcomings.

    Well, this is going to make you mad:

    Apparently the CDC has been funding lots of money into PTLD for over 5 years... but zero studies have been produced. Zero, nada, zilch.

    So... where did the money go?

    Well, check this out: https://projectreporter.nih.gov/project_info_history.cfm?aid=8138670&icde=0

    Here's a screenshot before they take it down (this info was available on other official websites but now those pages are down, since social media picked up on this mess last week):

    [​IMG]

    Infuriating, isn't it?
    We are talking $1.5 million and counting. Those are your tax dollars, btw.

    It has been a long time since I started distrusting the US medical authorities on anything related to Lyme or ME/CFS, but this is just another slap in the face for thousands of patients, and another wrinkle in this convoluted story that makes us distrust them even more on anything they have to say about this horrific and debilitating disease.

    Seriously: at what point you start calling this "hush money"? :bang-head:


    [​IMG]



    Ok, rant off. I had to get this off my chest.
     
    Last edited: Jan 20, 2016
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  2. sarah darwins

    sarah darwins I told you I was ill

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    I would say he should be ashamed of himself but having watched him in Under Our Skin I'm not sure he knows how.
     
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  3. ahmo

    ahmo Senior Member

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    [​IMG][​IMG]
     
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  4. PennyIA

    PennyIA Senior Member

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    Crap.

    I know there are lots of people who are convinced ME/CFS is lyme even PTLD; and I know that lots of folks think PTLD is actually really ME/CFS undiagnosed.... and the truth is? No one knows for sure because the STUDIES aren't being done to prove things one way or another, just some doctors start treatment for Lyme and other doctors don't trust their test results and declare 'not' Lyme.

    So the money getting poured into this guy's pockets COULD have been used to help clear up some of the confusion... but obviously isn't.

    Does anyone know how to track down details at New York medical college to see if there were studies planned and never ran or money got diverted or if they have something like PACE in the works? What's the next level of detail to help suss out the whole story?
     
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  5. sarah darwins

    sarah darwins I told you I was ill

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  6. Antares in NYC

    Antares in NYC Senior Member

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    What I find also irritating is that they are calling the research "Subjective symptoms after treatment of Lyme disease".

    "Subjective."

    As in, it's all in your head.

    Despite the myriad of things wrong and MEASURABLE with my immune and neural system since I first contracted Lyme, my symptoms are "subjective".

    Please don't tell me that even the premise of the research (which isn't been conducted anyway) is not already biased!

    I really hope that a major news organization would start pulling the curtain from this mess in the Lyme research field, from collusion, to rigged studies to straight up fraud. We are not getting any better, or any younger.
     
    Last edited: Jan 21, 2016
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  7. Antares in NYC

    Antares in NYC Senior Member

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    This is just another indication that they have always seen this disease as a racket, a money-making deal, a potential goldmine of patents, and a steady stream of federal money straight to their pockets.

    The jig is up! The Feds need to take away Lyme research from this corrupt cabal and start all over again.

    I really wish karma was real.
     
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  8. roller

    roller wiggle jiggle

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    and then his name is wormser? cant believe this all anymore...
     
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  9. leela

    leela Slow But Hopeful

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    Great idea to give *all* the research dollars to the guy who is most publicly and vociferously biased against chronic Lyme disease existing at all!
    High five!
     
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  10. Antares in NYC

    Antares in NYC Senior Member

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    I think that's by design, hence my "hush money" comment.

    All that we have seen Wormser do in the last few years is appear on every TV show, documentary, or news report to deny Lyme.
     
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  11. roller

    roller wiggle jiggle

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    i watched a bit of "under our skin".
    i understand, wormser says he doubts chronic lyme, but confirms that ppl are sick and of course lyme exists.
     
  12. Antares in NYC

    Antares in NYC Senior Member

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    That's barely a scratch on the surface of the damage that Wormser has done since he was appointed as the official authority on Lyme.

    He has stifled research on persistent Lyme, antibiotic refractory Lyme, and of course chronic Lyme.

    He has removed from the official IDSA and CDC Lyme panel any doctors that dissented with his views, making the panel 100% anti-chronic Lyme, with no alternative views and no presence of any experienced llmd or patient advocates.

    He also blocked the presence of 2 patients or patient organization reps in the Lyme panel --which happens to be a formal requirement, so their voices are heard. When he was called on it, he shamefully appointed one single patient advocate specialized in cancer, with zero experience or knowledge of Lyme.

    He led the authoring of the official treatment guidelines for Lyme used by the government and every hospital, which reduced treatment to no more than 4 weeks, and claimed that any continuing damage beyond that is just "the aches and pains of daily living."

    He has led a wave of investigations of other doctors that don't follow his flawed guidelines, leading to the removal of their medical licenses, and instilling fear on any MD that detracts from his dictate.

    He blocked the publishing of the Embers study for a decade, which proved beyond any doubt that the Lyme spirochete can survive antibiotic treatment.

    Under his tenure as the main advisor and authority on Lyme for the CDC, the disease has gone from a regional issue in the Northeast that reported 30,000 cases per year, to the spread of the disease to most states of the country 20 years later, now officially accounting over 300,000 new cases per year! From local issue to national epidemic.

    The Blumenthal investigation proved he has questionable conflicts of interest, taking money from pharma corporations interested in develop a Lyme vaccine, and his university research team holds patents on treatments for Lyme. The developing of two vaccines in the late 90s turned into a massive disaster.

    There are many more egregious examples of his tenure. He's been described as the number one medical authority standing in the way of proper and renewed research into Lyme and its many strains, and research into why so many Lyme patients (1 in 4) do not recover and go on to develop chronic, debilitating, ME/CFS-like symptoms. We know he's taking the money, but no research is being done on this matter. Fortunately other researchers are getting around and publishing worrisome peer-reviewed studies that prove the nasty persistence of Lyme.

    It's way overdue that Wormser and his select panel go. They need to be fired and fresh thinking brought to end this much suffering. And in my opinion, he and his associates need to be investigated for collusion and corruption.

    In a fair world, he would be facing the music.
     
    Last edited: Jan 21, 2016
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  13. duncan

    duncan Senior Member

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    $1.5 mill and no studies to show for it?

    How does the CDC explain the expense year after year? PR?

    The NIH is similar. Take a look at their chronic Lyme/PTLDS study whose goal was to recruit 500 patients, if I recall. The study was launched in the late 90's (1999?). Last time I checked, they were still "recruiting".
     
  14. roller

    roller wiggle jiggle

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    for my limited experience its normal, that pathogens survive the medication: bacteria, viruses and worms.
    once infected with something that did run out of control, we may need lifelong tests and treatment.
    its probably not about "eliminating" a pathogen, but to keep it under control (quantitywise).

    also, isnt it very likely to reinfect with borellia (or helminths, or tuberculosis or yersinia pestis or syphillis ...) again and again?
    some of the everywhere present mites can be infected with borellia (other insects/animals as well) and perhaps the pet can transfer it by a bite?

    i dont want to upset, but if the bacteria which was named culprit is gone (leaving back the odd few survivors) and the symptoms persist, then the initial diagnose may have been wrong?
    if there is no active borellia inflammation, then there is no chronic lyme. i would agree with wormser.
    its something else?

    they dont know what pathogens are out there. they obviously even have trouble to detect the known ones in the blood.
     
    Last edited: Jan 21, 2016

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