August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
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Nice "expose" by Bruce Fries on TruthOut.org re: IDSA

Discussion in 'Lyme Disease and Co-Infections' started by valentinelynx, Oct 5, 2015.

  1. valentinelynx

    valentinelynx Senior Member

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    Tucson
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  2. duncan

    duncan Senior Member

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    Is Benjamen Natelson of CFSAC fame a member of the Ad Hoc International Lyme Group, along with the likes of Steere and Wormser and Shapiro and Halperin and Baker and McSweegan and O'Connell (for our UK members)? According to this article, his name is on the list.

    If this is accurate, it might cast the Schuzter et al CSF protein study in a far different light for me.

    Why would Natelson, a supposed ME/CFS expert, be part of a Lyme organization of this sort? Could there be 2 BH Natelsons?

    ETA: See my subsequent post. Natelson is listed as a consultant to 2006 IDSA guidelines, not a member of the AHILG.
     
    Last edited: Oct 6, 2015
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  3. Antares in NYC

    Antares in NYC Senior Member

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    Great article, clearly explaining what many of us have known for a while.

    This thing reminds me of the CDC's initial reaction to the AIDS epidemic: deny, deny, deny. They even came up with ridiculous -when not plainly offensive- explanations for the disease.

    But it wasn't until outside researchers like Luc Montagnier discovered the causative agent of AIDS that the CDC had to backtrack and take the epidemic seriously.

    In the case of Lyme they seem to be going one step further, discrediting the peer-reviewed work of their peers at top research centers in the USA. That's all they do these days.

    The term "good science" no longer stands for scientific and provable evidence, but whatever the IDSA/CDC gang tells you it is (in this case, their very own research from the 1990s).

    I'm afraid that the solution to the problem of chronic Lyme (the disease that shall not be mentioned ever) or "persistent Lyme" will have to come from overseas. They sure have a chokehold on research here.
     
    Last edited: Oct 6, 2015
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  4. duncan

    duncan Senior Member

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    Upon closer examination of that list, it names Natelson as a consultant to the 2006 IDSA guidelines, not an actual member of the Ad Hoc International Lyme Group.
     
  5. sarah darwins

    sarah darwins I told you I was ill

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    Unfortunately, a lot of countries (including this one) seem to copy/paste their 'views' on lyme straight from the CDC and IDSA, much like the way the rest of the world has been copy/pasting BPS junk about me/cfs from the UK. I think solutions, in both cases, will come from independently driven research.

    There was a suggestion in another thread here a few days ago about the need for an fulsome review of lyme tests by 'independent' labs' (interesting, isn't it, that 'independent' can now be used as a pejorative term in science ... how did that happen?), but the above article makes you wonder who on earth could be trusted to carry out such a review.
     
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  6. Antares in NYC

    Antares in NYC Senior Member

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  7. barbc56

    barbc56 Senior Member

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    Propagands is a matter of perception. I just don't see any evidence for it applying to the IDSA. I would be surprised if any medical organization doesn't have some type of conflict of interest, even if it's at a low level.

    IDSA goes with the science so I believe they are the best direction of treatment. ID doctors often will extend antibiotics if warrented but certainly not to to the extent of ilad doctors and will start another therapy but unfortunately that may not go beyond trying to to control the symptoms.

    There's been some disputed evidence about the scientific interpretation of biofilms, bacteria hiding out but even if that's true it doesn't mean you need the lengthy course these llmd people are saying. Perhaps another line of therapy is needed for this.

    If you want to get into conspiracies, even though I don't believe ilads is a conspiracy but more likly misguided, ilad doctors can charge any amount of money to customers since they are not covered by insurance. Big pharma will benefit from the extra sells of antibiotics. Many are not ID physicians. Believe me, I don't want my health insurance premiums going up to pay for these dubious treatments.

    This is obviously my opinion. Some will disagree so take from it what you want. But my opinion which is from my research, I believe is based in some pretty solid science.

    Silly me, eh?

    Barb
     
    Last edited: Oct 20, 2015
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  8. duncan

    duncan Senior Member

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    You are incorrect, @barbc56; propaganda is not a matter of perception. Propaganda is a matter of intent.

    You are pretty much inaccurate about many of your other points in the post immediately preceding this as well, but who's counting? It's late so let's just focus on your first error.
     
    Last edited: Oct 20, 2015
  9. barbc56

    barbc56 Senior Member

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    .
    .
    The above words are pretty loaded.

    Whether perception, intent, both, one, none, or whatever, my point is simply that there may be several ways to look at the same information.

    Barb
     
    Last edited: Oct 21, 2015
  10. duncan

    duncan Senior Member

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    No, @barbc56 , not "whatever". If you want to support a school of thought, and you believe your ace is science, then don't you think you should strive, if only a bit, for accuracy?

    Look, skepticism is good and it serves a purpose, but when it is indiscriminate, when it sacrifices accuracy to opinion...

    This brand of skepticism is false.

    Skepticism is not deriding anything out-of-range, or anything that runs counter to mainstream.

    That's uncomfortably close to skepticism for the sake of skepticism.

    @barbc56 , propaganda involves intent. Intent factors into this conversation. It is central to the concerns of the Lyme community. You should recognize those concerns - they are often shared by the ME/CFS community when it sees groups of individuals working in a coordinated manner to subvert the realities of their disease, e.g. the BPS school.

    I don't really wish to go thru the exercise of dissecting the rest of your post, but I will if only because I think you should give accuracy its due.

    Let's suffice it to say :

    1) If you have not discerned any evidence of a coordinated campaign by some IDSA supporters, then you are not looking very hard. Clearly you have not read their emails that were revealed under FOIA. Clearly you have not seen the barrage of op-ed pieces in major newspapers trying to defend their old gains. Clearly, you have not investigated a history that virtually mandates a circling of wagons in a bid to stave off the inevitable.

    2) Conflicts of interest are conflicts of interest. Period.

    3) "IDSA goes with science." Now THAT is a loaded observation. Regardless, ILADS goes with science, too. Only ILADS science comes without as much legacy and legal and lobbying baggage.

    4) Biofilms are the tip of the iceberg. Please read some of the conversations on PR about persisters and their implications. And shifting antigenic properties peculiar to Bb, and L shapes, and...all kinds of science promulgated by ILADS

    5) You believe ILADS as an organization is misguided? Why? It couldn't be down to propaganda...Do you think the IDSA is NOT misguided?

    6) "ILADS doctors can charge any amount of money to customers since they are not covered by insurance." DO YOU ACTUALLY THINK THEY PREFER TO BE OUTSIDE AN INSURANCE UMBRELLA?? They lose potential patients because they are brave enough not to conform to guidelines that don't work. They are not covered by insurance because they dare to flaunt insurance protocol which mirrors IDSA recommendations. Why do you imagine that is?

    7) Up until recently, how much profit do you think pharma made on antibiotics? The real money that is being made on Lyme is from diagnostics, @barbc56 , to the tune of a $500,000,000 per year market. You want to ensure your insurance premiums don't keep increasing - talk to those IDSA/academia folk; they control most of the diagnostic revenue.

    8) You think your opinion is based on some pretty solid science? Are you sure it's not just some pretty solid propaganda?
     
    Last edited: Oct 21, 2015
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  11. barbc56

    barbc56 Senior Member

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    Please read my above post. I was only positing a different viewpoint. I'm sure I could have made up a completely different story but I choose the one I posted and it just so happens, it also reflects my take on things.

    I've stated my view and don't feel I need to expand on it as it's explained in my post. I also don't respond to posts when the questions asked of me are written in a confrontational manner as well as ascribing motives as truth and not your interpretation.

    We can agree to disagree. I see nothing wrong with having a different viewpoint. Either yours or mine.

    Barb
     
    Last edited: Oct 21, 2015
  12. duncan

    duncan Senior Member

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    "I'm sure I could have made up a completely different story..." I don't really know how to interpret this.

    Of course, you are entitled to your viewpoint. Just as I am entitled to respond to it when you air that viewpoint publicly.

    No harm, no foul. :)
     
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  13. Antares in NYC

    Antares in NYC Senior Member

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    Sure. We should always trust the CDC, and/or the private organizations that work with them. Always, forevah and evah!
    Just like they told us that ME/CFS was a "yuppy flu" sometime in the late 1980s.
    Just like they denied the AIDS epidemic for years, and misinformed the public by saying that "only gay people and Haitians could get infected." By the time they decided to take the Aids crisis seriously, millions were infected worldwide. It actually took researchers outside their grasp to discover the infectious agent (Dr. Luc Montagnier at the Pasteur Institute in Paris).

    We are to trust the words of people with conflicts of interests and collusion with pharma and the health insurance industries, and believe them when they tell us that the thing that made us so extremely ill is no worse than a cold, and the horrific, life-altering effects of the infection are nothing but "the aches and pains of daily living." That's literally adding insult to injury.

    It is the same bullcrap the Wesseley school pulls when they claim ME/CFS is psychosomatic, holding to some doctored "science," while blocking and denying perfectly valid (and increasingly growing) peer reviewed evidence to the contrary.

    Trust me: nobody that had to deal with the nightmare that is Lyme and its rocky road to treatment believes the medical establishment and its shoddy guidelines anymore.

    Also, what does it mean that "IDSA goes with the science?" IDSA only goes with the science that's convenient to them (Dearborn, Klempner) while ignoring or actively trying to shut down research that contradicts their mantra. There are over 270 peer-reviewed studies from prestigious universities and specialized researchers on Lyme persistence... and that includes researchers that happen to sit on the IDSA Lyme panel (Auewaerter being the most glaring example, writing papers about the stubborn abx resistance and persistence of Borrelia, but then telling us in public not to worry our silly little heads).

    The public has had it, and as @duncan mentioned in an earlier post, emails between CDC and IDSA members obtained via FOIA clearly show them openly talking about propaganda efforts, a media war, about silencing dissenting voices on Lyme guidelines. Do we need a sworn testimony from these folks to see that something's not very kosher at play?

    So yes, IDSA has the science on their side... and Lyme is difficult to catch and easy to treat. And if you are still sicker than a dog after a handful of antibiotic pills, then you must have something else, not the Lyme pathogen that just made you so ill. And ME/CFS is the yuppy flu, and is all in your head. And Aids affects only gays and Haitians. And nicotine is not an addictive substance. And there's no scientific consensus on global warming... Right?
    [This last paragraph was intended as sarcasm, FYI, just in case] :rolleyes:
     
    Last edited: Oct 23, 2015
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  14. Antares in NYC

    Antares in NYC Senior Member

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    I also wanted to add that Lyme disease may be one of the very few illnesses in the planet that does not follow the Occam's razor logical principle, in any way, shape or form:
    • If you get bitten by a tick and catch Lyme, you need to get antibiotics immediately! That way it will contain the spread of the disease according to all specialists (IDSA and ILADS alike). But if you remain still sick after that short course of antibiotics, according to the official IDSA guidelines, then it's not Lyme. It's magic! :star::star::star:

    • If you don't respond to the initial treatment, then you must have this nebulous and unproven "syndrome" that IDSA called PTLD, because it couldn't possibly be Lyme anymore. Yet some of the IDSA panelists publish academic research papers on the side, demonstrating the wily persistence of Borrelia despite antibiotic treatment (aside from the hundreds of other studies pointing at the same problem of ABX resistance in Lyme).

    • Borrelia is a spirochete closely related to Treponema Pallidum; that's syphilis for y'all. Like its cousin, the spirochete hides in biofilm, penetrates and burrows into tissue, evading treatment. Syphilis is extremely difficult to treat on late stages. It relapses, comes back, persists, and does a lot of damage in the process. But we are to believe that unlike its cousin, Borrelia is no worse than a bad cold, and that "neuroborreliosis", late stage Lyme, or Chronic Lyme do not exist... despite the testimony of thousands upon thousands of people.
    The only people that recovered from late stage Lyme did it via long-term IV antibiotics, AFAIK. The testimonies are there, from celebrities to patients of Lyme specialists. Granted, not everyone recovers (which scares the living crap outta me, frankly), but those who did, did it the same way you treat late stage syphilis: massive doses of antibiotics. I have personally met and talked to some people who successfully won their battle with Lyme. I trust their experience over those who tell me I must have something else, despite every Western-Blot test band lighting up like a Christmas tree.

    For full disclosure, I don't discard that a Lyme infection could create some sort of auto-immune process, or set your immune system into overdrive (the shifting of OspA could be the cause of this). They just have to prove it, but they haven't. So until then, my opinion is split 75/25 on persistent Lyme infection/immune overdrive syndrome.

    I really try to be fair and give people the benefit of the doubt. But my mama raised no fool, and they can't make me believe that night is day, no matter how hard they try... specially when the science increasingly points at Borrelia persistence and its ability to evade the immune system.
    Occam's Razor, people.
     
    Last edited: Oct 23, 2015

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