I find it a particular disservice to the ill and frightened people who come here looking for help to entertain them with paranoid fantasies about conspiracies among vast legions of MDs to keep all of us sick and broke.
That is not helpful. Lyme is curable, and MDs all swear to the Hippocratic oath: First, do no harm.
To allege that entire states full of MDs would engage in such a conspiracy, whether they all get together in a ballroom at adowntown hotel and sacrifice a sheep while chanting in unison 'There is no Lyme, and we will all get rich, there is no Lyme, and we will all get rich ...' or whether they just wink and nod at each other in the hospital hallway, this entire view is unsupportable.
Worse than unsupportable, it is damaging to the people who come here looking for help. You know who you are.
Please stop. Just stop. It's not funny, it's not clever, it's not helpful. Just stop.
The more I read, the more I am convinced there is a small group of doctors, researchers, and gov't health officials with a stranglehold on the "official" story of Lyme. They are suppressing evidence to the contrary and have been for about 20 years. I think other docs who deny Lyme are loyal to them because they are supposed to be. They probably don't know that scientific evidence is being covered up. They may need to follow along in order to be able to practice medicine.
Doctors rely on "experts" to guide them and know they can be liable or sanctioned when they flout the "standard of care." That's the phrase being used to criticize, condemn, or find liable those doctors who don't do what they're told. The implication is that anything outside the "standard of care" is irresponsible, even if the patient dies for lack of treatment. It must be a terrifying thought for a doctor that the trusted experts might be lying or suppressing information and many simply don't believe they would do that.
While money may have been the likely the motivation for hiding some scientific info or recommending certain tests or vaccines (patents, royalties, etc.), it doesn't explain the overall suppression that's still going on with Lyme. I personally think that is about protecting one's reputation, position, stature, career, legacy, et.al. And not just one's own, but those of the other members of this cabal, too.
What would happen to the outspoken Lyme Deniers if they suddenly admitted they were wrong? They'd be disgraced, humiliated, publicly vilified, and listed in history books as villains for the next century. There'd be investigations to find out who knew what and when. People have been known to go to GREAT lengths to stop such things from happening. Dr. L has gone further than anyone else I've seen in calling out the Lyme Deniers who seem like sociopaths.
Trying to convince the Lyme Deniers who still sit upon the Lyme pedestal to change their mind about testing, diagnosis, and treatment is highly unlikely. There is too much at stake for them and it's not just money. There is also no authority that can force the IDSA to change its guidelines. Perhaps when there is a new generation of professionals sitting in those positions, things will start to change. But this is too slow for those who continue to suffer.
I have concluded that our only hope for real change now is to put political pressure on our elected officials to demand a Congressional investigation of the CDC that will uncover the suppressed data showing that they've known about persistent infection since at least '93 (patient Vicki Logan), and that they've known that their Western Blot interpretation was inappropriate for diagnostic purposes since it was developed in '94 (as per "Cure Unknown"). I am sure there is much more hidden evidence.
We also need to investigate the NIH to find out who decided to refuse to fund or publish any studies that could resolve the conflict and/or studies that are led by scientists who don't agree with the positions of the IDSA & CDC.
Private researchers would never have been able to perpetuate this fraud upon sufferers of Lyme Disease (and the world's physicians!) without the active participation of the CDC. The CDC is accountable to the Federal Gov't, which is accountable to the American people. I think this is where we need to focus our efforts, in holding the CDC accountable.
Look at the scrambling happening now with the IRS scandal. If we could raise the same outrage over the devastated health and lives of thousands of Lyme sufferers (not just in the U.S., but around the world) as we are now about several dozen tax exempt political groups, we could blow the whole thing wide open and change everything.
"What would happen to the outspoken Lyme Deniers if they suddenly admitted they were wrong? "
Think of the class-action suits against individual doctors or perhaps the IDSA itself? Bankruptcy. Not gonna happen. At least in the near future, probably not ever. But something will 'change' and I hope it's for something better than what is extant now.
Rico, you also said:
"I have concluded that our only hope for real change now is to put political pressure on our elected officials to demand a Congressional investigation of the CDC that will uncover the suppressed data "
Yes. But look at Blumenthal's 'investigation' of the 2006 IDSA guidelines. It came to almost nothing.
Speaking of investigations: they are and have been on-going for a long time. I've been following them for a couple of decades. Here's just a fairly recent one:
"Blumenthal Chairs Senate Hearing In State On Lyme Disease Prevention, Hears From Senate Colleague, Patients And Experts
Thursday, August 30, 2012"
[It's possible to download the testimony from the patients and experts.]
Here is just one media viewpoint on why Congress shouldn't investigate the CDC.
I offer this not because I agree with all the utterances in it (it IS from USA Today ) but because there's a grain of truth in it.
I'm playing Devil's Advocate here.
"Given that the current makeup of Congress has demonstrated an inability to understand even basic science, such as vaccines and genetic modification, our fear should be that its involvement would mean possibly several months of professional politicians — most of whom probably don't know the difference between a bacterium and a virus — lecturing lifelong scientists and public health officials on how to run a microbiology laboratory."
When it comes to gaining validation of Lyme, our best advocates are our LLMD's, or journalists like P. Weintraub. I personally feel that many of the actions taken by patients, including te spread if wild conspiracies, is damaging, both to the advancement of the status of Lyme diagnosis/treatment/recognition and to patients.
It's my opinion that a lot of the conspiracy theories spread amongst the Lyme patient community are a result of the anxiety and other psychological symptoms of Lyme.
I know many acts of Lyme advocacy are well-intended, and patient sites are a great place for the exchange of ideas. Trying to put limits on what others discuss presents a potentially slippery slope. My approach is to treat patient forums like a pot-luck buffet: I take away what I like, pass by the parts that I don't, and try to contribute productively.
"My approach is to treat patient forums like a pot-luck buffet: I take away what I like, pass by the parts that I don't, and try to contribute productively. "
Exactly! A 12 step program says: "Take what you need and leave the rest".
[No, I've never been in a 12 step program but know many people who have. (grin)]
Some members revise that to 'take what you want and leave the rest'. But that's o.k. This IS a public forum.
I also agree with your statement that our best advocates are the llmds and people like Ms Weintraub but would like to rephrase that to 'some' llmds.
Not every doctor who says they're an 'llmd' is my idea of what an llmd is.
As Dr. S once told me---- he has a phrase 'top tier' LLMD for the ones that adhere to science based medicine. I like that distinction.
And Ms. Weintraub? A great example of fact based, checked and double checked for verification ---- as a good science journalist does.
Yes, you are right to hedge when it comes to so-called "LLMDs." To my knowledge, that is a patient label, not a professional title. Sometimes I add "ILADS member" when describing docs that are (hopefully) looking out for our best interest.
For a 'real' conspiracy read Lab 257. :) There are sure to be tidbits, here and there, that are correct in their assumptions but ........
"The I.D.S.A. agreed to reconvene a guidelines writing panel of people, none of whom could have conflicts of interest. But what they also did was prohibit anybody who made more than, I think, $10,000 from treating Lyme patients, to participate. So, that excluded all of the Lyme specialists; the community physicians who really know the disease the best."
(From Vanity Fair)
Conspiracy? Or just 'doing business'? What exactly IS a conspiracy?
"A secret plan by a group to do something unlawful or harmful.
The action of plotting or conspiring.
plot - cabal - scheme - intrigue - collusion"
Rico said, above:
"The more I read, the more I am convinced there is a small group of doctors, researchers, and gov't health officials with a stranglehold on the "official" story of Lyme. They are suppressing evidence to the contrary and have been for about 20 years."
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