Lyme Disease Support Groups and patients across the country responded to the survey by LymeDisease.org. The results were then utilized in submissions to the IDSA panel during its Open Comment period- deadline April 9, 2015.
Support group leaders also signed several additional documents produced in part by the national LDA and LymeDisease.org. To review the letters and documents, click here.
The document below was submitted by Lucy Barnes to bring to light the years of bullying and abuse suffered by patients at the hands of the IDSA guideline authors and supporters. People with this little character, humanity and large scale conflicts of interest should not be included on a panel that develops medical treatment guidelines for people it routinely smears publicly and privately, especially when this sort of abuse has been ongoing for two decades and continues today.
At the bottom of the page are links to two additional documents prepared for the IDSA's Open Comment Period. One responds to the testing questions presented by the IDSA, the other one comments on Lyme ACA- a skin and neurological condition affecting people with chronic, persistent Lyme disease. All of these reports were prepared by Lucy Barnes.
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IDSA Open Comment Period- Lyme Disease Guideline Panel
Comments submitted by one of the ... "Disorganized, antagonistic, vindictive, back- biting, fratricidal groups, conspiracy nuts, and any number of certified mental patients acting as self-appointed Movement spokespersons. Now they just may have provided the medical community with a legitimate reason for considering “chronic” Lyme disease as a psychiatric manifestation." [Written and published by one of the Ad Hoc International Lyme Disease Group whose small membership includes Steere, Zemel, Wormser, Auwaerter, Halperin, Sood, Krause and Bockenstedt.]
PROJECT PLAN- Guidelines for the Prevention, Diagnosis, and Treatment of Lyme Disease by the Infectious Diseases Society of America, the American Academy of Neurology, and the American College of Rheumatology
April 2, 2015
Page 7- Lines 83-90, 95 & Page 8- Lines 106, 116- Studies by any of the Lyme disease guideline authors (past and proposed) should be excluded before the review process for the new Lyme disease guidelines, in part for the following reasons. Author bias; continuing conflicts of interest; hatred of patients panel members are sworn to serve, personal vendettas, arrogance clouding judgment, long history of the unsuccessful treatment of Lyme patients and refusal to acknowledge the existence of chronic Lyme disease.
Three decades of the exclusion of those affected in the process- Lyme patients, their treating physicians, volunteer Lyme patient advocates/educators and Lyme disease organizations have been excluded and harassed if they dare request a seat at the table or dare speak out when not cured by an arbitrarily set treatment protocol. There are no scientific studies proving the IDSA treatment protocol cures anyone.
Three decades of Lyme disease wars- disaster after disaster (poor tests, poor surveillance, failed prevention methods, unsuccessful treatment leading to patients becoming chronically ill, disabled and dying) and failed vaccines, all fueled by those riddled with conflicts of interest who gladly testify against patients to prevent them from receiving insurance and disability benefits, and who set up and then volunteer to testify against the doctors who treat them. [Example- Zemel offering to train CT health department employees how to sneak into a Lyme treating doctors office to entrap the doctor if he isn’t following IDSA guidelines.]https://sites.google.com/site/marylandlyme/chronic-lyme-disease/afterthebite- articles/zemel-letter-1993
This group has a personal agenda- while protecting each other from sanctions, they are carrying out a vendetta for having been proven wrong by massive numbers of sick patients who are not cured using their protocols, and for being shamed before the entire medical community when investigated by the Attorney General CT for wrong doings (cost- over $1 million legal fees). [Example- Paul Auwaerter intercepting a private email when someone tried to investigate problems stemming from the article- A Critical Appraisal of “Chronic Lyme Disease”, where McSweegan falsely claimed he was from Johns Hopkins in Crofton, MD rather than the NIH where he’d been told to stay away from Lyme disease issues. See Letter- https://sites.google.com/site/marylandlyme/md-support-groups/after-the-bite/ethics-boardcomplaints-filed/complaint--hopkins--auewaerter - Attachment 1, Item #1.
The spokesperson for this tight knit Ad Hoc Lyme group, Edward McSweegan, for years has been bullying, stalking, harassing, tormenting, libeling and threatening patients who dare to try to educate and assist other sick patients, with help from those who have worked together on Lyme issues and who are signed on to become part of the next IDSA Lyme guideline panel.
Steere, Zemel, Wormser, Auwaerter, Halperin, Sood, Krause and Bockenstedt
And they all lived together in a little crooked house...
Lancet Infect Dis. 2011 Sep;11(9):713-9. doi: 10.1016/S1473-3099(11)70034-2.Antiscience and ethical concerns associated with advocacy of Lyme disease.Auwaerter PG1, Bakken JS, Dattwyler RJ, Dumler JS, Halperin JJ, McSweegan E,Nadelman RB, O'Connell S, Shapiro ED, Sood SK, Steere AC, Weinstein A, Wormser GP. http://www.ncbi.nlm.nih.gov/pubmed/?term=Antiscience+and+ethical+concerns+%20associated+with+advocacy+of+Lyme+disease
J Med Ethics. 2011 Feb;37(2):68-73. doi: 10.1136/jme.2009.032896. Epub 2010 Nov 21. Scientific evidence and best patient care practices should guide the ethics of Lyme disease activism. Auwaerter PG1, Bakken JS, Dattwyler RJ, Dumler JS, Halperin JJ, McSweegan E, Nadelman RB, O'Connell S, Sood SK, Weinstein A, Wormser GP. http://www.ncbi.nlm.nih.gov/pubmed/?term=Scientific+evidence+and+best+patie%20nt+care+practices+should+guide+the+ethics+of+Lyme+disease+activism
N Engl J Med. 2007 Oct 4;357(14):1422-30. A critical appraisal of "chronic Lyme disease". Feder HM Jr, Johnson BJ, O'Connell S, Shapiro ED, Steere AC, Wormser GP; Ad Hoc International Lyme Disease Group, Agger WA, Artsob H, Auwaerter P, Dumler JS, Bakken JS, Bockenstedt LK, Green J, Dattwyler RJ, Munoz J, Nadelman RB, Schwartz I, Draper T, McSweegan E, Halperin JJ, Klempner MS, Krause PJ, Mead P, Morshed M, Porwancher R, Radolf JD, Smith RP Jr, Sood S, Weinstein A, Wong SJ, Zemel L. http://www.ncbi.nlm.nih.gov/pubmed/?term=A+critical+appraisal+of+%22chronic%20+Lyme+disease%22
The above three journal articles are just a sampling of the distain shown toward sick patients, patient advocates, Lyme organizations and treating doctors by this small group of guideline authors/supporters. It is not acceptable to put these same people back in charge of developing guidelines that will continue to affect not only those who are currently ill, but all of the innocent people who will be made sick by ticks in the future. We deserve better.
Lyme disease guideline Ad Hoc and/or panel members should not keep or support a running “hit list” spanning several decades that promotes the stalking and tormenting of sick Lyme patients. [See Hit List- The Wacky World of Lyme Disease.] https://sites.google.com/site/edwardmcsweegan/hit-list
American Lyme Disease Foundation- Phil Baker (who worked with Edward McSweegan) retires from NIH and jumps immediately into bed with the same people- guideline authors/supporters- that he once funded for Lyme disease research. Notice even his articles about Lyme patients and doctors are degrading, hateful and ugly. Where is the science? These people are not fit to work on or contribute to any scientific projects. http://www.aldf.com
Please see the attachment below. It is a small sampling of decades of harassment by those who are paid to protect the public and those who are currently listed as potential panel leaders or members. Get them off the panel completely, please.
Steere, Zemel, Wormser, Auwaerter, Halperin, Sood, Krause and Bockenstedt
Do not support the destruction of more lives by allowing this panel to develop more guidelines. Thank you for your consideration and time.
Sincerely,
Lucy Barnes
Lucy Barnes
Attachment 1- Selected Quotes
Member of the Ad Hoc International Lyme Disease Group &
Co-author with 2006 IDSA Lyme guideline authors
And members of the new IDSA Proposed Panel
McSweegan & Steere, Zemel, Wormser, Auwaerter, Halperin,
Sood, Krause, Bockenstedt
Partial List of Quotes Referring To:
Lyme Patients
Lyme Treating Doctors
Non-profit Lyme Disease Organizations
Volunteer Lyme Patient Advocates
Congressional Members, etc.
Warning- Some of the original X-rated or inappropriate language has not been removed.
"Disorganized, antagonistic, vindictive, back-biting, fratricidal
groups, conspiracy nuts, and any number of certified mental patients acting as self-appointed Movement spokespersons. Now they just may have provided the medical community with a legitimate reason for considering “chronic” Lyme disease as a psychiatric manifestation."
“Interestingly, her usual pamphleteering partner, Ralph--What a bigger penis--Stricker, also has some difficulties..."
“Speaking of nuts, this local newspaper article reads like it was dictated by Lucy Barnes... Her juvenile online comments about scientists and academic physicians, and her online lectures about Lyme disease suggest she’s a horribly ignorant and ill-mannered 13-year-old hillbilly, or maybe just a liar. Is it possible to be both?”
"Below is a list of conference “faculty” for an upcoming meeting of the ILADS, a group of like-minded quacks preying on people who think they have a chronic, incurable bacteria infection otherwise know to the saner world as Lyme disease. If the roof of the conference room was to fall in, it would put an end to a large amount of quackery in the U.S., save many people from financial ruin, and lessen the workload of numerous state medical licensing boards."
"I can’t believe this clown has a license to practice medicine."
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"Maybe this person is a recent immigrant with an imperfect command of written English. Or maybe he/she is just a nut. Probably the latter."
"What the f***!?"
"I continue to wonder if English is Schaller’s native language."
“As for “medical fraud,” well, there’s plenty of that among the private practice quacks who prey on people who think they have “chronic” Lyme disease."
"Could this be classified as vector-borne erectile dysfunction? Is there a pill for it?"
“I don’t understand where these so-called LLMDs come up with this stuff. Are they morons or just liars?”
"Wow. Marylanders must be the dumbest people in the U.S. So who’s the audience for this pathetic propaganda?”
"Grassley may have other motives; people in Washington usually do."
“Rounding out the entertainment is Raphael-do you need a larger penis- Stricker..."
"Control of infectious disease research now passes from medical experts to a vast lumbering bureaucracy and an ignorant, but easily frightened and confused Congress."
“No, I think Blum [Attorney General Richard Blumenthal, CT] has demonstrated that he’s just another crooked pol ... He’s a media-addicted clown who will temporarily pursue any cause for a few minutes of television time. He’s a bad politician and a bad lawyer.”
"I doubt Dick Blumenthal has much more time for this nonsense; he’s busy losing a Senate race in Ct. Still, the idea of calling, faxing or emailing him is tempting. Frankly, I’d like to tell him—as Jon Stewart often tells Fox Noise—to go f*** himself. Though I suspect all I’d get for my trouble would be a long, citation-filled deposition stating why he cannot comply legally, morally, or anatomically."
"... and these LLMDs and ILADS guys are charlatans and quacks, and are a general threat to the health and wealth of their patients. ... he’s just as delusional as the chronic Lyme activists.”
"Congressman Chris Smith (R-NJ) must have a lousy staff. He’s hosting a forum on Lyme disease and other tick-borne infections for his constituents
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this week."
“So, yes, I think the new Administration, the new congressional
committee chairs, the new OSTP staff, science advisors such as former NIH Director Harold Varmus and incoming FDA Administrator Peggy Hamburg are very aware of the “serious conflicts and scientific misstatements” characteristic of Lyme activists and their quack physicians.”
"So what are the village idiots of LymeLand bitching about today?”
"More tautologic nonsense."
"Again, more nonsense from a psychiatrist wanting to practice infectious diseases. ... Doctors (and quacks) are in control....right up to the point where they kill, injure or rob someone."
"...Christ, I wish it could--but that‘s no reason to embrace quackery and witchcraft."
"She sounds a lot like the equally agitated, white, blue-collar, unemployed people who show up at tea party rallies to foam at the mouth..."
"...the hands of some clumsy, incompetent “Lyme Literate” doc."
"The host of this intellectual catastrophe is Eva Sapi, (another Hungarian? Does anyone else miss the Berlin Wall?)"
"And speaking of the current ILADS president, here’s part of a letter he just fired off to the IOM about their ongoing study of Lyme disease. It’s really an amazing compilation of lies. Maybe it’s the result of treating so many people who think they have a chronic infection that can’t be eradicated except by walletectomy."
"PalMD kicks some Stricker and Savely ass..."
"Cameron is the immediate past president of that online gang of private practitioners who dabble in quackery and wackery. Quackery being the medical use of worthless potions and procedures, and wackery being the belief in and dissemination of wacky ideas."
"Persumably, she “found out” from her LLMD, who must either be GP horribly ignorant of infectious diseases or a con artist looking to turn one imaginary Lyme patient into five billable Lyme patients."
"I found this fascinating piece of medical crap in a publication called Public Health Alert. It’s a newsletter put out by some women who think
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they have chronic Lyme disease. PHA is full of nonsense written (badly) by various Lyme disease quacks and charlatans."
"...a howling hurricane of noisy nonsense, psuedoscience, quackery, and good old-fashioned ignorance."
"Once again, the Internet helps some ignorant fool to diagnose himself."
"But why believe a doctor when the Internet and its nutty denizens tell you otherwise?"
“...as a matter of public health and public education, mention a horrible little piece of poisonous propaganda... ... this piece of disease porn... Dirt, greed and politics can be found among the advocacy groups and LLMDs ... It can be found among the LLMDs who sit on Lyme advisory boards and troll for patients at advocacy meetings.”
"First, Lorraine, you’re an idiot." ... "Second, Lorraine, you’re an idiot."
"What’s the Hindu word for ‘quack’?"
"So what do they talk about year after year? Bill padding? How to hide cash payments? Property values in the Caribbean? How to get your patients to pay your legal fees through Internet-solicited defense funds?”
"... long list of well-known Lyme quacks, activists and organizations"
“As for ILADS, it’s a bunch of quacks and crooks masquerading as a legit medical society."
“The Calif. Lyme group’s Lorraine Johnson is again letting her training as a scumbag lawyer get the better of her judgment."
“Why else would they give Ginger Savely a stump from which to hawk her quackery?"
“Now in California with access to Stricker’s pool of “chronic” Lyme disease patients (said to number 1,800) she’s probably making a killing. And maybe she’ll eventually kill someone."
"The IOM listening tour is really getting an earful. And probably a headache."
“For all her effort (a 5-page, single-spaced letter), all she and her colleagues got back was a clear repudiation from NIH. The National Academy of Sciences—of which the IOM is a part—has been has been giving the government advice since Lincoln was president. Johnson and her Lymee agitators are not going to change that with another redundant accusation...even if it is on congressional stationary.”
"Yet this statement seems emblematic of the Internet-connected nuts who think they are plagued with a permanent infection that limits their social and financial lives to sitting in front of their computers and trolling the Internet for Lyme- related information 18 hours a day."
"Control of infectious disease research now passes from medical experts to a vast lumbering bureaucracy and an ignorant, but easily frightened and confused Congress."
"It’s the cheap and easy answer for charlatans and the gullible."
"These are little more than “for profit lies” repeated and propagated by activists in need of warm bodies and doctors in need of cash-carrying patients."
"Well, like all ads, this one is full of crap. ... It’s the same rehashed, cut-and- paste whining as the earlier polemics by these two obsessive-compulsive propagandists."
"Fortunately, they can’t seem to keep their diabolical plots from leaking out, not to the NYT or a congressional committee, but to middle-aged mental patients who sit around on the Internet all day looking for fantasies to blame for their personal problems. ... Get off the Internet and get some therapy."
"I know I keep saying this, "Just when I think the denizens of Lymeland can't get any dumber....they do."
“Instead they seem to be based on belief, anecdote, a touch of quackery, and good old-fashioned greed."
"This is quickly becoming redundant. Lyme activists can bitch to each other all they want..."
"Patients with imaginary infections being treated by quacks and crooks using inappropriate drugs and methods of treatment. What a world is Lymeland."
"Still, Dick Blum must be in the news....even if he has to make up the news. What next? The alleged Tampon shortage? Over-priced bagels in East Coast grocery chains?"
“Connecticut is a state endemic for Lyme disease, Lyme activists, Lyme quacks, and foolish local politicians willing to take up the banner of "chronic" Lyme disease on behalf of their deluded, but voting, constituents. It's a state with a near perfect mixture of bad medicine and bad politics."
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"A timely review of the state of the craziness in Lyme disease. Importantly, Baker provides a three-step solution (below) for ending the nutty accusations of activists and the equally nutty practices of their doctors."
"Maybe the final activist write-up for the IOM will clarify things. Or not." "... most of the chronic Lyme complainants seem to be white, middle-aged women. And that’s a bit odd—white, middle-aged women being the main victims of a chronic infection that causes myriad symptoms that can only be held in check by an endless supply of antibiotics and the constant care and attention of an understanding “Lyme literate” doctor."
"... do we cheer for the scum-bag personal injury lawyers or for the deluded patients? I had to go with the scum-bag lawyers—after all, it’s not the fault of the lawyers. They’re just acting out their nature like a shark or a mamba or some other dangerous predator.”
"Boy, that LymeNut discussion board gets a little bit wackier every day. Its managers must be following the lead of Iranian mullahs and Chinese Politburo members in defining how to control the media... LymeNut members... Quack therapies and quack doctors are relentlessly defended against common sense and common decency."
"What are they going to do after having been bit (again) by
Maryland’s mysterious madam of mayhem?" "... bogyman Barnes"
"Boy, this Lorraine character is a real wackjob. She can’t seem to get anything straight. She may be the Sarah Palin of LymeLand."
"Secondly, the panel was selected by the IDSA and that sleazeball lawyer in Ct. now trying to become a sleazeball senator."
"It’s been a busy week in LymeLand. There must have been some kind
of nuthouse furlough recently because three Lymee wackjobs have just dumped a load of nonsense into the Internet, which in all fairness is basically what the 90% Internet is—a digital landfill for the mentally ill, the conspiracy-minded, the juvenile, and the criminal."
“He believes the instigators of denialist movements have more serious psychological problems than most of their followers.” “They display all the features of paranoid personality disorder”, he says, including anger, intolerance of criticism, and what psychiatrists call a grandiose sense of their own importance.”