Cures Act- Updates and Notes
Update- December 1, 2016 (3:45 AM)
After asking, begging, pleading with everyone I could for the past 12 hours for a copy of the bill language that passed the House, still nothing. Well, there were lots of good intentions by some also looking for the wording who tried to help (so very kind), but a lot more from others who are suppose to know and who DO know, who instead ran me around having me checking this and checking that with no results. And even at the end of the day when the final version with the correct wording was sent to me by two different people, they didn't even match each other. Go figure!
Rather than share the wording, which is what we are looking for, instead we got explanations, excuses and other kicks in the pants for wanting to know. Here are the names on the list of those responsible for this effort and what was found while looking for answers. (Patricia Smith, President, Lyme Disease Association, Inc., Jill Auerbach Chair, Hudson Valley Lyme Disease Association, Phyllis Mervine, President, LymeDisease.org, Ira Auerbach, Hudson Valley Lyme Disease Association, Christina T. Fisk, President, Lyme Action Network, David Roth, Founder of Tick Borne Disease Alliance and Global Lyme Alliance, Bruce Fries, President, Patient Centered Care Advocacy Group, Holly Ahern, Vice President, Lyme Action Network, Dorothy Leland, Vice President, LymeDisease.org, Timothy Lynagh, Board Member, Lyme Disease Association, Inc.)
Hudson Valley Lyme Disease Association- (nothing on FaceBook even closely related)
NatCapLyme FaceBook- (not releasing the wording)- "New Lyme language has been inserted into bill. As soon as we get the language, we will post it, along with our thoughts on its ramifications."
Lyme Action Network FaceBook- (obviously in on this deal from the start, but no wording shared)- "This is a big deal for Lyme patients! We have been working on this for several years, and expect our language to pass in tomorrow's vote."
Global Lyme Alliance (mostly pictures of party goers on website)- No information.
Lyme Disease Association- News- The Lyme Bill: Fact & Fiction
Lyme Disease.org (same PR released by LDA the day before- has not released the wording)- New Lyme Language
Bruce Fries FaceBook- (has not released the wording)
So the question remains- Who will release a copy of the wording so we can see it, and WHEN will they release it?
Bad enough we didn't have a chance to review the language before a vote was taken in the House, so will we get to see it before it is voted on in the Senate?
T-R-A-N-S-P-A-R-E-N-C-Y equals T-R-U-S-T
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November 30, 2016
Those handling this bill will not share a copy of the final wording, but managed to squeak out shortly before midnight that Gibson's original "bill language was restored". That bill is found HERE.
My response- 11/30/16 at 2:06 AM
"It would be nice to have the bill wording available for all to see even if it is the last minute, which in itself is disgusting and pitiful, and not have to listen instead to any more of the “you can see the bill after it is passed” or we are "making progress" and a “big step forward” and “don’t worry we have it under control” and we have “ground-breaking news” fillers that we’ve had to listen to in the past, especially when the last bill supported by some in this group, who spouted the same kind of rhetoric, allowed the Governor of NY to sign a Lyme bill before the wording was finalized or in place (and other amazing tricks).
It’s called transparency. Respect. Democratic. Honesty. Candidness. Trustworthiness. And it is becoming totally and shamefully lost in the repeated attempts by a handful of people to pass Lyme bills, no matter what they say."
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Update November 29, 2016 (Announcement dated November 30, 2016)
The announcement doesn’t say what the wording is that was put in the House amendment to an amendment (HR 34), but here is the latest news. Maybe we can read it after it passes? ~smile~
Link Here- https://www.lymediseaseassociation.org/news/1584-groundbreaking-news-on-lyme-bill
News
GROUNDBREAKING NEWS ON LYME BILL!
29 November 2016
November 30, 2016 Lyme community leaders are pleased to announce that language on tick-borne diseases (TBD) will be included in the 21st Century Cures Act (the House Amendment to Senate Amendment to HR 34).
The inclusion of this language was achieved after 2 days of intense negotiations with Congressional offices. The language will be included in the House version of the bill which is expected to pass easily due to its broad bipartisan support.
The signatories listed below mutually agreed upon the new TBD language that will now be included in the bill.
Yesterday and early today, Leaders put out calls to the community to have them contact their federal Senators and Representatives to pull out congressionally proposed Lyme language that would have contradicted the bill’s intent.
Thank you all for those efforts. Congressional leaders responded by indicating a willingness to work with the Lyme community.
That effort was successfully concluded at 5pm today when the Rules committee met and the proposed language agreed upon by both sides was incorporated into the large 21st Century Cures amendment legislation. To Read More Click Here
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UPDATE- November 29, 2016
Mixed Messages, Many Mixed Messages- 6 AM on 11/29/16- Florida Lyme Disease Association president responds to my email and tells everyone to be sure to contact their state's member of the Committee on Rules and ask them to strike the section about Lyme disease from the Cure's Act. It is an urgent plea for anyone with connections to these Committee on Rules Congressman to act immediately, with a link provided.
https://rules.house.gov/committee-rules-members
She goes on to instruct everyone else to contact their Congressman also, with another link provided.
http://www.house.gov/representatives/find/
BUT WAIT!
The ILADS Board sent out an "URGENT - Action Needed re: Federal Lyme Law" email at 11:36 AM on November 29, 2016, stating:
Please find information regarding the potential NEW FEDERAL LYME law that could potentially CODIFY the IDSA guidelines. PLEASE contact your senator or congressperson TODAY and talk with anyone else you feel may have influence on this vote: requesting the following outlined by Gregg Skall:
We are asking that the Tick-borne disease provision, starting at Section 2062 be deleted from the bill."
It states- not true- but it is said anyway- "The Lyme disease community is united against this wording as it currently stands. At this point, there is a consensus that we want section 2062--the part of bill related to Tick-borne Diseases--be struck completely from the bill."
The email ends with... "Thanks to Gregg Skall JD of Womble Carlyle and Susan Green, JD for sharing this information with ILADS. Thank you for your quick action!"
The ILADS Board
To read entire email click here.
BUT WAIT!
At 3:43 PM on the same day ILADS sends out another email stating in part:
As a result of strong lobbying efforts by Lyme advocates across the country, ILADS doctors and the community, House Representatives have entered into negotiations with the Lyme community to modify the amended language.... It is with that in mind that I request that everyone stand down until the final language is determined.
Best,
Susan
Susan R. Green
Attorney-at-Law
To Read Entire Email Click Here
Three sets of instructions from various people- FL LDA, and ILADS BOARD 2 x, and NatCap Lyme's Greg Skull & Susan Green 2 x each- all in less than 9 hours! That has to be a record!
As one person questioned during all this confusion... WHO is responsible for getting the "undeniably HORRIBLE" language in the bill in the first place?
My Response- May I suggest contacting the ones who are now running around trying to fix it? (ILADS BOARD, NatCap Lyme's Greg Skull & Susan Green)
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UPDATE- November 29, 2016
Response to information received from someone wanting to kill the bill...
The information I received states this version of the bill located here- http://docs.house.gov/billsthisweek/20161128/CPRT-114-HPRT-RU00-SAHR34.pdf
QUOTE- ".. contains wording that is undeniably HORRIBLE for the Lyme patient community."
That made me laugh. Actually, the wording is just about the most benign of any bill I've seen over the years. It is, IF acted upon, a minor adjustment to what is already being done at the federal, state and local levels and actually gives us more ability to see what "they" are doing, and have our views heard and automatically be placed on the record for the first time.
If you read this amendment to an amendment (tacked onto the tsunami bill) that was originally posted you will see...
1. That version states- "The Secretary may establish a working group, to be known as the Tick- Borne Disease Working Group... comprised of representatives of appropriate Federal agencies and other non-Federal entities ... to help ensure interagency coordination and minimize overlap, and to examine research priorities." [My guess is if this version will upset the CDC/IDSA's apple cart in any measurable way they just won't establish the group. They have a choice.]
2. That version states- "The working group shall— (A) not later than 2 years after the date of enactment of this Act, develop or update a summary of—..." [They- NIH/CDC- are already required to submit summaries and reports (and currently do so without our input), especially if the they want any funding in the future.]
3. The new reports from the new "group" would include info on... "(v) the Working Group’s meetings... and (vi) the comments received [FROM US] by the Working Group..." [This is new and actually to our advantage. Right now we must beg, FOIA and/or stand on our heads and turn inside out to get any information.]
4. The working group would be required to- "(C) solicit input from States, localities, and nongovernmental entities, including organizations representing patients, health care providers, researchers, and industry regarding scientific advances, research questions, surveillance activities, and emerging strains in species of pathogenic organisms." [This is new- they would now have to solicit our input rather than all of us trying to force them to listen to us or share with us.]
5. "(3) MEMBERSHIP.—The members of the working group shall represent a diversity of scientific disciplines." [If they form the group and we don't like the make up of the group, the LDA & LDO work very hard and are both excellent when it comes to getting us the best that is possible in situations like this and making the other side play more fair than if left to their own devises.]
6. The "working group" would be required to- "(A) submit a report on its activities ... to the Secretary, the Committee on Energy and Commerce of the House of Representatives, and the Committee on Health, Education, Labor, and Pensions of the Senate; (B) make such report publicly available on the Internet website of the Department of Health and Human Services." [That's more than previously required, and it gives us more access than we've ever had.]
7. The BEST part (in my opinion)- is the sunset clause "(6) SUNSET.—The Working Group under this section shall terminate 6 years after the date of enactment of this Act. [We didn't always have this provision available to us in the past. In spite of our best efforts, if this new "group" isn't reasonable or the reports are a serious problem- over and above what their reports do to us now- it ends in 6 years rather than going on forever. Bing, bang, boom.]
So this version of the bill may not be what someone originally proposed, or contain all of what we feel we deserve, but if it passes it CERTAINLY isn't "undeniably HORRIBLE for the Lyme patient community". "Undeniably horrible" would be things like the 2006 and the upcoming IDSA treatment guidelines.
May I suggest waiting until we hear the final word from the LDA and/or LDO before wasting time and effort doing something that may need to be un-done or changed?
That's my plan.
LB
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UPDATE- November 28, 2016
There is another version of the Cures Act floating around at the last minute (just before the end of the 2 year session) that has some people concerned. It is located here. (Starts on page 119- Section 2062.)
http://docs.house.gov/billsthisweek/20161128/CPRT-114-HPRT-RU00-SAHR34.pdf
It appears this recent version of the bill comes from the (quote)….
TEXT OF HOUSE AMENDMENT TO THE SENATE AMENDMENT TO H.R. 34, TSUNAMI WARNING, EDUCATION, AND RESEARCH ACT OF 2015
When compared to other items on the official legislative schedule for the week (11/28/16), which all have a specific listing and bill number posted for items to be addressed, this proposed HR 34 amendment to an amendment is not listed on the Majority Leaders schedule to be anything more than (if it even refers to this specific amendment to an amendment)- (quote)…
Consideration of legislation related to 21st Century Cures
Link Here (see bottom of page)
https://www.majorityleader.gov/weekly-schedule/
Since the original House Bill (with amendments to it) passed last year, and the Senate broke the bill down into multiple pieces with changes in language and funding, there is no telling what will happen to the tick borne disease related section. Its floating around now like the odd sock in the laundry basket.
The fact $$ are included in the original bill and even those amounts are and have been in dispute since day one, we have a lame duck session with little time left, the upset over the “draining the swamp” proposal has Washington DC in an uproar, the federal budget and other national concerns are a priority to most people/politicians, the number of lobbyists working on this bill has tied or broken some records for the “most”, and the general unwillingness for years of both sides of the House and Senate, and the Democrats and Republicans, to work together in peaceful harmony, there is a chance the Cures Act (as a whole) will not be passed into law this session.
But, then again, the sponsors and committee have close ties to IDSA/CDC etc. and have never been our friends (pretended to be, lied about it, but definitely not our friends) may make a push to get just the Lyme portion thru (not the entire Cures Act), even if it is done underhandedly, like our portion is attached on the coat tails of a must pass budget amendment or Tsunami Warning related bill.
If I had to make a guess about what will happen in these last few days of the 114th Congressional Session, with no crystal balls or solid facts to rely on….
Your guess is as good as mine.
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UPDATE- July 2015. The federal Lyme bill was recently stuffed in with the Cures 21st Century bill (HR 6) that in itself is dangerous for patients with Lyme and other diseases. It passed the House, and that is not a cause for celebration.
Submitted to Congress for the 21st Century Cures Initiative. Link here to Maryland's Paper at Congressional Energy and Commerce Committee website.
May 16, 2014 Patient Perspectives
The Honorable Fred Upton Chairman
The Honorable Diana DeGette Ranking Member
Committee on Energy and Commerce
2125 Rayburn House Office Building
Washington, DC 20515
21st Century Cures Initiative – Incorporating the Patient Perspective
Dear Representatives DeGette and Upton, the Committee and Staff,
The volunteer members, patient advocates and supporters of the American Lyme and Tick Borne Disease Foundation, Lyme Disease Education and Support Groups of Maryland, Maryland Lyme, Virginia Lyme, Florida Lyme, Children with Lyme Support Network and our Treat The Bite educational program wish to thank you for the opportunity to submit comments for the 21st Century Cures- Patient Perspectives initiative.
I’m sure you will be pleased to know, unlike some disease oriented groups with sincere problems facing them, we are NOT asking for more money. None! In fact, if you can find it in your heart to listen, do your research and correct some of the shameful, wasteful, ongoing situations you may find funding that can help additional patient groups in need.
Brief History- Since 1986 our groups and individual volunteers have dedicated themselves and their personal resources to educating the public and health care professionals concerning the prevention, diagnosis and treatment of Lyme and tick borne disease. Many of them have been negatively affected and/or have family members who have been suffering from improperly diagnosed or inadequately treated Lyme infections. Their motives are simple. They do not want others to suffer as they have done, and hope by educating people this can be avoided.
As a true all “grass roots” effort, originally initiated by the mother of a multiply infected tick borne disease patient, we receive no federal, state or local funding to carry out our mission. We work daily to educate and improve a Lyme patients quality of life, while also assisting Lyme-related groups across the country with various Lyme-related projects.
For the decades of hard work we’ve invested in this cause, our people have been publicly referred to by a National Institutes of Health (NIH) Lyme Program official as:
"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." [NIH Lyme program- McSweegan]
Efforts to educate the public concerning Lyme disease prevention and updating citizens on a regular basis concerning the science as it evolves has also been hampered over the years by federal agency employees.
"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 aload 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." [NIH Lyme program- McSweegan]
Health care professionals who have dedicated their lives to treating the sickest of the Lyme and tick borne disease (TBD) patients, many true life- savers by all accounts, have also been targeted, publicly disparaged and reported to medical boards for using advanced treatment protocols based on science, after the standard protocols failed their chronically ill Lyme patients, to prevent worsening illness, disability and death.
Some people supporting the federal agencies Lyme programs and recommendations and receiving research funding are so anxious to crush the competition they have resorted to volunteering their services to places like the CT Department of Health, who they hope will assist them in destroying others. Dr. Lawrence Zemel in Connecticut, for example, in a letter dated 9/14/93, is offering advise on how to ruin a Lyme treating doctor’s reputation and shut down their practice. This would cost the unsuspecting doctor tens of thousands to millions of dollars in legal fees, with a possible additional loss of his/her license.
To do something so despicable would require sneaking in another doctor’s office and faking an illness to determine if the doctor is following the federally supported Lyme disease guidelines. In the spirit of true cooperation, he advises the CT Department of Health staff to:
“Have one of your staff investigators pose as a patient, complete with vague symptoms and negative Lyme results but insisting she have Lyme Disease. I would be happy to rehearse that investigator.”
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“Examine insurance records of some of the major carriers in the state to see if he is a consistent outlier in terms of duration of home intravenous therapy.”
“Examine records of patients treated over the past few years for Lyme Disease to see if they truly fulfill established criteria [federally sanctioned] for Lyme Disease.” [Lawrence Zemel, CT]
Ironically, for all their efforts, just last month the antibiotics promoted for use by the NIH, CDC and other federal and state agencies (who have been under pressure by the CDC and its partners to tow the federal line) were confirmed by a Johns Hopkins study to be less effective for Lyme persisters (biofilms, cyst and L-forms, particles and spirochetes) than the standard insurance-friendly antibiotics typically prescribed- Doxycycline and Amoxicillin. The study, confirming what many in the clinical setting realized years ago and what has been used by experienced Lyme-treating doctors, described 165 different FDA-approved antibiotics that are more effective for Lyme than the federal agency supported protocols.
The inability of federal agencies to control or interfere (as much) with patient-funded studies has allowed the science to advance much further and faster, and has been more definitive and useful in actual clinical patient care than the government controlled studies costing millions more dollars. Still, to retain control of its assets and keep government money flowing in the friends of federal agencies direction, NIH and other federal employees and their associates have been behind a two decades old smear campaign, as demonstrated by NIH employees comments.
"... 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.” [NIH Lyme program- McSweegan]
"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." [NIH Lyme program- McSweegan]
"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
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it’s the result of treating so many people who think they have a chronic infection that can’t be eradicated except by walletectomy." [NIH Lyme program- McSweegan]
"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?” [NIH Lyme program- McSweegan]
"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." [NIH Lyme program- McSweegan]
Members of Congress who have reached out in the past to assist chronically ill Lyme patients have also been publicly targeted in this fashion, as can be seen in the NIH comments below. Although the federal agencies continue to bite the hand that feeds them, to the patients dismay Congress continues to steadily feed them, and feed them to the exclusion of others and with seemingly no over sight and no regrets.
"Control of infectious disease research now passes from medical experts to a vastlumbering bureaucracy and an ignorant, but easily frightened and confused Congress." [NIH Lyme program- McSweegan]
“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.” [NIH Lyme program- McSweegan]
"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..." [NIH Lyme program- McSweegan]
"Grassley may have other motives; people in Washington usually do." [NIH Lyme program- McSweegan]
"Boy, this ... character is a real wackjob. She can’t seem to get anything straight. She may be the Sarah Palin of LymeLand." [NIH Lyme program- McSweegan]
"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
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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." [censored by masking foul language ***- NIH Lyme program- McSweegan]
"Congressman Chris Smith (R-NJ) must have a lousy staff. He’s hosting a forumon Lyme disease and other tick-borne infections for his constituents this week." [NIH Lyme program- McSweegan]
“So, yes, I think the new Administration, the new congressional committee chairs, the new OSTP staff, science advisors such as former NIH Director HaroldVarmus and incoming FDA Administrator Peggy Hamburg are very aware of the “serious conflicts and scientific misstatements” characteristic of Lymeactivists and their quack physicians.” [NIH Lyme program- McSweegan]
"Secondly, the panel was selected by the IDSA and that sleazeball lawyer in Ct. now trying to become a sleazeball senator." [NIH Lyme program- McSweegan]
“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?" [NIH Lyme program- McSweegan]
"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 theirpersonal problems. ... Get off the Internet and get some therapy." [NIH Lyme program- McSweegan]
“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." [NIH Lyme program- McSweegan]
Unfortunately, Senator Blumenthal, while still serving as the CT Attorney General, was targeted in a much more harsh fashion. On May 1, 2008, after conducting a lengthy investigation into the IDSA’s Lyme disease guideline development practices, which were originally and are still
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supported by the federal agencies, he determined and reported in part:
“My office uncovered undisclosed financial interests held by several of the most powerful IDSA panelists. The IDSA's guideline panel improperly ignored or minimized consideration of alternative medical opinion and evidence regarding chronic Lyme disease, potentially raising serious questions about whether the recommendations reflected all relevant science.”
"The IDSA's 2006 Lyme disease guideline panel undercut its credibility by allowing individuals with financial interests -- in drug companies, Lyme disease diagnostic tests, patents and consulting arrangements with insurance companies -- to exclude divergent medical evidence and opinion.”
“The IDSA subsequently cited AAN's [American Academy of Neurology] supposed independent corroboration of its findings as part of its attempts to defeat federal legislation to create a Lyme disease advisory committee and state legislation supporting antibiotic therapy for chronic Lyme disease.”
“The IDSA failed to follow its own procedures for appointing the 2006 panel chairman and members, enabling the chairman, who held a bias regarding the existence of chronic Lyme, to handpick a likeminded panel without scrutiny by or formal approval of the IDSA's oversight committee...”
“The IDSA's 2000 and 2006 Lyme disease panels refused to accept or meaningfully consider information regarding the existence of chronic Lyme disease, once removing a panelist from the 2000 panel who dissented from the group's position on chronic Lyme disease to achieve "consensus"...”
“The IDSA blocked appointment of scientists and physicians with divergent views on chronic Lyme who sought to serve on the 2006 guidelines panel by informing them that the panel was fully staffed, even though it was later expanded...”
“The IDSA portrayed another medical association's Lyme disease guidelines [American Academy of Neurology] as corroborating its own when it knew that the two panels shared several authors, including the chairmen of both groups, and were working on guidelines at the same time. In allowing its panelists to serve on both groups at the same time, IDSA violated its own conflicts of interest policy.”
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It seems no one is immune to repeated harassment or retaliation and anyone can become a target of federally funded tormenting. When NIH employees feel bold enough and compelled to go after people like the Deputy Director of the FBI with a law suit in federal court, a chronically ill grand mother running a local support group, or a volunteer patient advocate caring for her sick children don’t stand much of a chance against such powerful forces. Due directly to the federal agencies employees harassment, stalking and threats, some very kind and helpful citizens have been forced out of public view and/or have stopped trying to educate and help others to prevent themselves and their families from being stalked and threatened.
NIH employees and their research, paid for with our collective tax dollars, have been put in charge of making life-altering decisions from leadership positions, and developing policies that directly and indirectly affect funding for Lyme disease research. When requesting funding and responding to Congress, it is doubtful these federally employed offenders and their associates display their true feelings as seen here, even while perched in their ivory towers and looking down on Congress.
It appears the NIH does not discriminate on the basis of race, color, age, ethnicity, religion, national origin, pregnancy, sexual orientation, gender identity, etc. In fact, when it comes to Lyme disease everyone can become a target at any given time.
“What is it about white, middle-class, college-educated, middle- aged women that compels them to use a common infectious disease as the vehicle for their emotional and psychological problems? Why the endless lies and absurd street theater? Why are the spokespersons and leaders of the Lyme Movement mostly former mental patients, former felons, and belligerent, paranoid egomaniacs? Barnes accuses me and others of trying to discredit Lyme patients, but it’s clear people like her do a much more effective job of undermining any political and social support for Lyme disease.” [NIH Lyme program- McSweegan]
"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." [NIH Lyme program- McSweegan]
"Wow. Marylanders must be the dumbest people in the U.S. So who’s the audience for this pathetic propaganda?” [NIH Lyme program- McSweegan]
"... do we cheer for the scum-bag personal injury lawyers or for
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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.” [NIH Lyme program- McSweegan]
"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...” [NIH Lyme program- McSweegan]
"The host of this intellectual catastrophe is Eva Sapi, (another Hungarian? Does anyone else miss the Berlin Wall?)" [NIH Lyme program- McSweegan]
Efforts to shut down Lyme disease patients, groups and organizations has been so focused that a “hit-list” was developed and regularly updated by NIH’s McSweegan, with actions designed to discredit, frighten, torment and take out the most vocal of the volunteers in order to provide smooth sailing and sustain the status quo for NIH and other federal agencies and related entities.
Published and shared on the internet, the Wacky World of Lyme Disease documents some of the attacks made on various Lyme patient volunteers over the years. It was written by NIH Lyme program’s McSweegan- in a clever enough fashion to be able to skirt the laws of the land and rules of decency in order to avoid additional punitive actions taken against him.
When people across the country began, unfortunately, contracting Lyme disease and additional diseases from a tick bite they could never have imagined the disease spectrum would include being relentlessly stalked, harassed, having children removed from their home due to false reports to child protective services, have their employers and insurers contacted by federal employees, and even be physically threatened.
Patient Report- “Lastly, I admit that I did cry during the deposition. Yup. It was during a reading of material Ed [McSweegan] admitted writing, that mocked our dead son and pets. And, a number of such writings were done WHILE he was a public official working at NIH as LD Project Officer.” [KF- patient and support group leader of LDF]
Patient Report- “In my case there have also been anonymous death threats sent to me both publicly and privately, suggesting that "cars come up on the sidewalk", and similar themes. ... Finally in late April the harassment culminated with a threat placed on an internet Lyme group directed at my
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children. The same day I reported it to the police, a close friend in England had to leap out of the way to avoid an oncoming car, speeding the wrong way down a pedestrianised lane in her local shopping precinct.
On 8 May 2006, three police officers, two doctors, two social workers and a community psychiatric nurse arrived without warning at my door. They had a warrant for my arrest. ... Dr Ellis questioned me briefly about the hacking, and the threat to my children. Dr Maya Ranger, a consultant psychiatrist .. was placed in charge of my care. She immediately diagnosed me with "Delusional disorder". I asked her in a ward round what was the basis of her diagnosis. She explained that it was three things:
That I disagree with the views of Dr Susan O'Connell. O'Connell is the UK "expert" on Lyme Disease, who believes that Lyme is hard to catch, is easily ruled out by blood tests, and almost always curable with a simple 3-week antibiotic course. ...
She ignored detailed material sent to her about Dr McSweegan, whom I have reason to believe is one of the Steere camp people who has harassed and threatened me, whilst hiding behind false internet names, since 2003.
I am certain that if Dr Ranger had got her way, she would have fed me steadyingly increasing doses of Risperidone in her attempt to "cure" me of my beliefs about Lyme disease until she had turned me into a cabbage.” [EC- patient]
Patient Report- “DeRose was warned by others McSweegan has stalked [and] to contact her [College] Dean immediately [after she received a written threat from Mcsweegan] and tell him to expect communications from McSweegan, which she did. The following day, true to habit, McSweegan called DeRose’s PhD advisor to discredit her.
DeRose sent an email to patient (LB) concerning the anonymous complaint filed with child protective services shortly after McSweegan contacted DeRose’s college. Several patients have had anonymous complaints filed against them in the same manner, and always after speaking up about a Lyme- related issue.
DeRose wrote: “It’s a long complex story but the CPS
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complaint made accused: my husband of sexual abuse and me of crackpot medical treatments for our daughter [I was sick when I was pregnant with her- hence a possible connection to the autism], so I'm pretty much cleared. My husband, however, was thrown out of our house with 20 minutes notice when the temperature was 7 degrees outside.
He ended up trying to sleep in his car but after about two weeks he gave up on trying to live with these false accusations. The CPS counts on your being so shamed and humiliated that you eventually just give in to whatever they say. He decided to kill himself instead.
My kids are 12 and 16-the oldest is just old enough that they can't take him away. It is my autistic 12 year old daughter that is at risk. She does not interview well because of her autistic mind and is bewildered by all this. In fact she never wants to be interviewed or have her body examined again now.
To quote: "All complaints are strictly confidential" but I now understand why he [referring to McSweegan] uses this tool. Once CPS gets involved all sense of due process is thrown out the window. Case workers can, after about half a day of interviews, make life altering decisions that can destroy a family for years to come. I can now fully understand the other women’s plights that he stalked.
My husband, who is a PTSD Vietnam vet to start out, has ended up attempting suicide and is now in a mental institution with his previously manageable mental illness converted into permanent schizophrenia. Last paycheck: last Thursday- income for foreseeable future $0. My 16 year old is now under suicide watch also and our daughter is just about destroyed.
It seems that if you are accused and guilty you are guilty and if you are innocent you are also guilty.” [MM Drymon- patient]
McSweegan’s Hit List Quote- “What do you do about people like this? You can’t sue them; they don’t have enough money to make it worthwhile, and a defense of emotional or mental incompetence would probably be compelling. She thinks I exhibit “bizzare behavior” and “could be dangerous” so I just may have to content myself with stopping in Centreville to punch her in the face the next time I drive over to Rehoboth. Would that be considered bizarre behavior or just proof of being dangerous? Maybe I could just show up at the next
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meeting of her support group, “Eastern Shore Hicks with Ticks.” Do they serve coffee and donuts?” [NIH- McSweegan]
The decades long attacks on patients, health care professionals and politicians didn’t stop when McSweegan was finally removed from the NIH’s Lyme disease program for his public condemnation of Lyme patients, their doctors, support groups and specialty labs. He, while still employed by the NIH, published in journals everything he could, with his coauthors who had been receiving federal grants for research right beside him. Using federally funded research to attack others is not acceptable, however it is a regular practice.
“As with other antiscience groups, some Lyme disease activists have created a parallel universe of pseudoscientific practitioners, research, publications, and meetings, arranged public protests and made accusations of corruption and conspiracy, used harassment and occasional death threats, and advocated legislative efforts to subvert evidence-based medicine and peer-reviewed science.”
“National Institutes of Health (NIH)-sponsored, double-blind, randomised, placebo-controlled treatment trials have been done to examine whether persistent (for ≥6 months) subjective symptoms were improved by retreatment with antibiotics after standard courses of oral or intravenous treatment for Lyme disease.”
“The accusations eventually drew the attention of the US Congress. During a 1993 Senate hearing on Lyme disease, one LLMD accused “a core group of university-basedLyme disease researchers and physicians...of act[ing] unscientifically and unethically. They work with government agencies to bias the agenda of consensus meetings, and have worked to exclude...those with alternate opinions.”
“In 2000, activists persuaded a few congressmen to investigate the federal Lyme disease research programmes of the Centers for Disease Control and Prevention (CDC) and the NIH.”
“In December, 2006, a New Jersey congressman complained that it was “inappropriate for CDC to highlight IDSA's findings—to the exclusion of others.”
McSweegan was allowed to remain at the NIH and to his own admission was given too much free-time at our expense. When sanctions should have been imposed, instead Congress stepped up to protect NIH’s
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McSweegan.
“I doubt the Congress has any interest in investigating what I do in my house after work. What I do at work has been investigated. Check with Senator Grassley’s office if you’re curious.” [NIH Lyme program- McSweegan]
Eventually, Mr. Phillip Baker was placed in charge of the Lyme disease programs and grants at NIH. His attempts after retirement to follow in McSweegan’s foot-steps provides us all with an overview of the state of the science while grants were under his direction.
“Obviously, the credibility of guidelines proposed by ILADS, a pseudoscientific organization with an undistinguished membership of about 300, as well as the similar views of those often referred to as Lyme Literate Physicians (LLMDs), should no longer be given credence and serious consideration.” [NIH Lyme program- Baker]
Attempts to censor other viewpoints regarding Lyme disease continued with Baker at the helm of the American Lyme Disease Foundation (ALDF). Rabid and rapid responses to news articles that did not follow the federal agencies party line were fired off at every possible chance. Working behind the scenes to change or kill Lyme related bills was a popular past-time for former NIH Lyme disease employees and their partners, and continues today.
Funding for Lyme programs once under NIH’s McSweegan were later directed by NIH’s Baker, and funds were funneled to the same small group of like-minded researchers, such as Raymond Dattwyler, an obviously well-funded friend of the federal agencies who published 67 studies in 22 years and shared like-minded opinions with McSweegan, Baker, et al.
“I am indeed proud to have assisted Dr. Dattwyler, as well as many other NIH grantees, in getting support for the outstanding work that they are doing.” [NIH Lyme program- Baker]
"The doctor at Southampton Hospital didn't evaluate you properly," he began, then stopped, correcting himself: "Nah, the doctor was a jerk." [NY Medical College- Dattwyler]
Exposure of wrong-doings often prompted NIH’s employees mentioned above to either stand up publicly for the repeat offenders using their credentials in the process, or it led to more public and private retaliatory
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attacks on suffering patients, volunteers and their doctors.
“To characterize such individuals as “loonies” might be too kind of a description.” [NIH Lyme program- Baker]
“As a result of such close interactions, many of us have become better acquainted not only with each other, but also with scientists who actually do the research that is funded by grants from the NIH and other government agencies. As Program Officer for NIAID’s Lyme Disease Basic Research Program, I managed the grants and therefore had personal contact and direct interactions with almost every well-known and accomplished scientist doing research on Lyme disease...” [NIH Lyme program- Baker]
“During my long scientific career, I have had the privilege of knowing many outstanding and dedicated scientists who do excellent work and really care about the public health. I am extremely proud to have been associated with all of them. Your biased article does them and all that they have accomplished a great disservice.” [NIH Lyme program- Baker]
The 21st Century Cures Initiative will hopefully address some if not all of the serious problems created when Congress first mandated federal agencies representatives to work together to the exclusion of outside stake holders, which allowed the continuation and promotion of biased and conflicted science, and in our specific case permitted attacks on and dismissals of patients and others.
“About 2-3 years before I became Program Officer for the National Institute of Allergy and Infectious Diseases’s (NIAID) Lyme Disease Basic Research Program, the U.S. Congress mandated that NIH establish an NIH Lyme Disease Advisory Panel to facilitate the exchange of information and the development of co-operative interactions between those institutes of the NIH that support clinical studies and basic research on Lyme disease; representatives from the CDC and the FDA also were invited to serve on this panel which is required to meet at least once per year and more often if needed.” [NIH Lyme program- Baker]
“Therefore, it should not be surprising to discover that the NIH, CDC, and FDA work closely together on Lyme disease; not only have they been encouraged by the Congress to do so in this and other areas of scientific research... This hardly constitutes collusion or a conspiracy as some naïve individuals
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believe to be the case.” [NIH Lyme program- Baker]
The Committee for the 21st Century Cures initiative will hopefully ensure federal agencies (CDC, NIH, FDA, HHS) and their partners (IDSA, ALDF) who are controlling Lyme research and directing the majority of funding for science, often for their own purposes, while miserably failing the patients, will be overhauled and the bad apples from all agencies will be eliminated so we can start on a progressive and positive course that will actually benefit patients and those truly interested in assisting them on the road to finding a cure.
Federal agency employees and others report about their attacks on Lyme patients, advocates, doctors and groups:
“Millions of dollars have been spent refuting their [patient, etc.] claims, and thousands of hours have been spent responding to false allegations, legal threats, congressional queries, and other harassments.” [NIH Lyme program- McSweegan- and IDSA guideline authors]
The solution is obvious and quite simple, with the added bonus of saving millions of dollars. Get rid of those who continue to misuse federal funding and road block the science to exclude diverging points of view.
Changes in personnel and overhauling of the Lyme program within federal agencies should include requiring all federal agencies to be transparent and beholding to the public they serve. The changes should include appointing representatives from the patient community, group leaders, outside researchers and health care professionals with differing view points to not only be included and have “a seat” at the table for the first time, but to have their numbers be in the majority when it comes to the decision making process regarding future policy decisions and directing the available research funding.
Due to their pitifully poor record over the past three decades and the destruction caused to countless lives by the run-amuck federal non- transparent, not accountable Lyme related system currently in place, we additionally request the agencies be investigated and be held accountable both now and in the future.
We request this be carried out to a greater extent than typically required in other circumstances. This type of change, if prompted and supported by Congress, will save millions of dollars and help reduce the budget while still advancing the science.
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How wrong can the federally funded studies be?
The federal agencies funding for research produced all and more of the following conclusions, findings and comments, and all of the statements have since been disproven. They do not have a good track record and they do not care.
1. Lyme was originally reported to be caused by a virus.
WRONG! It is caused by a form of bacteria.
2. Lyme should not be treated with antibiotics because Lyme is a virus.
WRONG! Lyme is caused by a bacterial infection that, like other bacterial infections, is susceptible to antibiotic therapy.
3. If a short course of antibiotics doesn't work to cure Lyme, no more antibiotics are needed.
WRONG! Short courses of antibiotics have been found to be extremely unreliable. Re-treatment has shown to improve the patient's condition.
4. The blood tests the IDSA and its partners developed (and patented for profit) are accurate.
WRONG! The have been proven to miss up to 75% of people who are infected.
5. There are a lot of false-positive test results.
WRONG! There are an extraordinary amount of false-negative test results.
6. Lyme disease is easy to diagnose and cure.
WRONG! Lyme disease can mimic countless medical conditions and a cure has never been developed.
7. Reporting practices are sufficient and give us a good picture of the spread of Lyme disease.
WRONG! The actual numbers of Lyme cases is over 10 times what is currently reported.
8. After treatment people do not have Lyme, just the "aches and pains" of daily living.
WRONG! Countless people have become chronically ill, disabled and many have died.
9. There is no evidence chronic Lyme exists.
WRONG! There are over 1,000 scientific studies proving otherwise.
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10. The federally supported IDSA Lyme Disease Guidelines represent the best of the science.
WRONG! They were found to be developed by a handful of people with conflicts of interest and do not work to produce a cure for most.
11. Lyme disease can not be passed from mother to fetus.
WRONG! The literature indicates simple complication to still births and death are possible.
12. There is no Lyme here in -fill in the blank with your State’s name.
WRONG! Absence of evidence isn’t proof of anything.
13. We have no conflicts of interest.
WRONG! May 1, 2008- The CT Attorney General’s investigation proved otherwise.
14. A tick must be attached for 48 hours to transmit Lyme disease.
WRONG! Studies prove otherwise, and transmission can occur in less than a few hours after a person is bitten.
15. Two pills of Doxycycline taken within 3 days of a tick bite will prevent/cure Lyme disease.
WRONG! Lyme disease can disseminate throughout the body and studies have proven this is not true.
16. We care about patients.
WRONG! You just need to ask anyone who was denied treatment and developed the late chronic stages of Lyme disease what they think.
17. The standard, federally supported 2-3 weeks of Doxycycline protocol cures most cases of Lyme disease.
WRONG! Thousands of studies, along with thousands of chronically ill patients prove otherwise.
18. You can not have more than one tick borne disease at a time.
WRONG! People can be multiply infected with a number of various organisms.
19. The new vaccine is safe and effective.
WRONG! It was pulled from the market after reports of injury began climbing and law suits were filed by those who were injured.
20. Lyme disease can not be sexually transmitted.
WRONG! Multiple studies found evidence of the spirochete in secretions from both men and women.
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21. Only certain ticks carry certain diseases.
WRONG! Each year more new discoveries are made proving that theory wrong.
22. Steroids are a viable treatment for those with Lyme disease.
WRONG! Steroids are contraindicated in all but the most severe complications for those who have Lyme disease.
23. Some exercise, visits to psychiatrists and Advil are all that are needed if symptoms remain or become worse after treatment.
WRONG! Coinfections and other sources for the symptoms need to be explored.
24. Prevention efforts are working.
WRONG! Federally funded studies prove otherwise.
25. Blood donations can be safely made by those who were treated for Lyme with the minimal federally approved antibiotic protocol.
WRONG! The Red Cross and others have proven the spirochetes can remain active even through blood storage conditions.
Proposed Solutions
We request the total elimination of those presently working on Lyme related activities for federal agencies in any capacity due to the horrendous and unthinkable way Lyme disease research, funding, education and patient care has been handled to date. If the NIH can send one offender (McSweegan) to Russia, pay him over $100,000 a year to do nothing (his own admission), then lend him out to vaccine promoters for an undetermined amount of time, and retire another federal employee (Baker) and set him free to immediately join hands with those he funded over the years to continue in his attempts in suppressing the science and discredit those with differing opinions, they can certainly ship the others somewhere. As the saying goes, if they can send one man to the moon, why can’t they send them all?
We request members of the Committee, either Republican, Independent or Democrat- no matter- provide strict and close (to the point of smothering) oversight to federal agencies responsible for policy making and research funding for science related to Lyme and tick borne diseases to ensure the CDC, NIH, FDA and other federal agencies will no longer abuse the system. This requests excludes any oversight services suggested by or provided for by Congressman Frank Pallone (NJ) due to his Lyme related conflicts of interest.
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We request Congress be mindful that agencies they are funding use our monies and their authority appropriately. With the requirement to have open communications and full transparency there should be a sincere reduction of situations where the fox is guarding the hen house and the conflicted are reporting directly back to Congress with their biased, self- serving reports.
We request the decades of wasteful spending, self-promotion, retaliation and conflicts of interest linked to the federal agencies be addressed in a serious fashion. We request the Committee provide all stakeholders an opportunity to participate in developing their futures. After all, to many of us this is a matter of life and death for ourselves and our children.
We request, until more quality research is forthcoming, Congress demand diagnostic and treatment options utilized by health care professionals and doctors while caring for Lyme patients remain flexible and patient oriented. New treatment guidelines developed by Lyme treating doctors and researchers should soon be forthcoming, barring the continued blocking by the friends of the federal agencies who serve as editors on various scientific journals. The guidelines, developed by the International Lyme and Associated Diseases Society (ILADS), will be offered to help guide clinicians world wide in the diagnosis and treatment of complex cases of Lyme and tick borne diseases.
We request the FDA be ordered to back off the independent Lyme disease labs in their quest to shut down the competition, which will benefit the federally supported financial stakeholders. To note- the IDSA Lyme Disease Guideline editor and spokesperson, who also served on the IDSA Board and was involved in the conflicts of interest scandal- Paul Auwaerter (Hopkins)- was recently appointed to the FDA panel. Shortly thereafter, it was announced that for some reason Democratic Senators were pushing for a bill to support the FDA actions.
We request public meetings and workshops be held across the country by a newly developed committee, with committee members to be designated by Congressman Chris Smith (NJ), and only Congressman Chris Smith. The Congressman has spent years studying this situation and has a deeper understanding than most concerning the actual problems patients and their doctors are facing. The committee should be encouraging patient, advocate and group input, and equal time and weight should be provided for each respondent. Funding for this project and other measures mentioned here can be covered by the elimination of certain federal employees in the overhaul process.
We request clinical trials be real-life clinical trials using real patients in various stages of disease who are provided reasonable treatments by
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doctors with a long track record of successfully treating chronically ill Lyme patients. Funding has been grossly lacking in this area for decades.
We respectfully request our elected representatives make a focused effort to safeguard the public and put an end to the political games that are causing the citizens of the United States to become chronically ill, disabled and/or are allowing them to die while waiting for help for Lyme disease from, and directed by, the federal agencies.
We thank you all for taking time to read, listen and respond to these concerns. Please contact me if you have any questions or require more documentation.
This submission has been brought to you by, as the NIH puts it-
“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?”
Lucy Barnes, Director
Lyme Disease Education and Support Groups of Maryland
631 Railroad Avenue
Centreville, MD 21617
AfterTheBite@gmail.com
Sources for quotes and other documentation are presented (highlighted and linked) throughout the original text. More documentation is available upon request.
Additional Information
1.) NIH- McSweegan, Edward- Partial List of Lyme Disease Related Quotes (2009-2010)
- 2.) LLMD definition- Lyme patients term for a doctor who has educated themselves on the diagnosis and treatment of tick borne diseases and is willing to risk everything to see their patient’s receive appropriate medical care. Lyme Literate Medical Doctor.
- 3.) ILADS definition- a group of health care professionals working together to educate others concerning the diagnosis and treatment of tick borne diseases. International Lyme and Associated Diseases Society.
Submission # 31
31. Lyme Disease Education and Support Groups of Maryland
21st Century Cures--Patients (May 16, 2014)
- See more at: http://energycommerce.house.gov/cures#sthash.ZkjTkt6e.dpuf