Archive for the ‘Uncategorized’ Category

Summer Campers Face Deadly Ticks & Mosquitoes

https://www.cnn.com/2018/06/24/health/bug-disease-preparedness/index.html

Summer campers face deadly ticks and mosquitoes

By Elizabeth Cohen and John Bonifield, CNN
June 25, 2018

US ‘not ready’ for potentially deadly bug diseases

In many parts of the United States, this weekend marks the start of summer sleepaway camp season, which means swimming, arts and crafts, marshmallow roasts — and, very often, ticks.

Of the more than 1,600 overnight camps that are members of the American Camp Association, more than a third are in New England and the mid-Atlantic states, where Lyme disease is particularly prevalent, according to the Centers for Disease Control and Prevention.

According to a May CDC report, cases of vector-borne diseases — those caused by viruses and bacteria carried by ticks, mosquitoes and other bugs — tripled in the United States from 2004 to 2016.

For years, experts have voiced concern that many local public health agencies are unprepared to control such pests and limit the spread of these diseases which include Lyme disease, dengue fever and Zika.

“I started to look into it, and the numbers were on the increase and didn’t show any signs of stopping,” said Lauren Rutkowski, who with her husband, Joel, owns Indian Head Camp for children in Equinunk, Pennsylvania. “As a mom and a camp director, I was concerned.”

Every summer from 2010 to 2014, seven or eight campers had confirmed or suspected tick bites at Indian Head, and each summer, three or four of those children tested positive for Lyme disease, according to Rutkowski. Lyme disease is a bacterial infection transmitted through bites from infected ticks, and if left untreated, it can spread to joints, the heart and the nervous system.

She said it’s not known whether the children contracted the disease from the tick bite they got at camp or from a previous tick bite at home.

In 2014, her son, Oakley, was bitten by a tick at the family’s camp, which hosts 650 children every summer. He did not contract Lyme disease.

The next year, Rutkowski hired a new service that helps fight ticks, including spraying the perimeter of the camp with pesticides and offering advice on how to get rid of habitats where ticks breed.

Since then, not a single camper is known to have been bitten by a tick, Rutkowski said.

Now, 123 camps use the service, Ivy Oaks Analytics, according to Isaiah Ham, who started the company after one of his summer campers contracted Lyme disease from a tick bite.

Ham, then a college student working as a counselor, said he wasn’t pleased with the camp’s response.

“The camp just kind of shrugged and thought it was just inevitable, like a hurricane; it was just part of being in the outdoors,” Ham remembered.

It’s unknown how many children are bitten by ticks at summer camps or how many camps are using services to mitigate the pests, according to Sam Borek, president of the New York/New Jersey section of the American Camp Association.

Camps don’t exist in a vacuum, of course, and there are concerns that state public health departments aren’t doing enough to fight diseases caused by ticks, mosquitoes and other pests.

“Mosquitoes, ticks, fleas can all carry very serious diseases that are life-threatening,” said Dr. Irwin Redlener, a professor at the Columbia University Mailman School of Public Health.

A report from the National Association of County and City Health Officials says 84% of programs to control diseases from mosquitoes need improvement. In 18 states, every program is falling short.

These programs often aren’t well-funded and aren’t equipped to do proper surveillance or prevention, Redlener said.

“We’re, simply put, not ready, and we should be,” he said.

Redlener and other experts have criticized President Trump for ignoring climate change, part of the reason for the proliferation of pests that carry diseases. (Please see my comment at end of article)

“We have to wonder why the president and the administration [are] not taking this issue more seriously,” he said.

The White House declined to comment on climate change, referring questions to the CDC, which makes clear on its website that climate change increases the number and geographic range of disease-carrying insects and ticks.

The White House statement also said the President takes such diseases seriously, requesting more than $49 million to fight them next year, an increase of $11 million over this year.

Back at Indian Head Camp, as the campers arrive on Saturday, they’re hoping for another summer without a tick bite.

“We’re ready,” Rutkowski said. “We just can’t wait to get them here.”

______________

**Comment**

There are many things to complain about; however, “climate change” in regards to ticks and proliferation of disease isn’t one of them:  https://madisonarealymesupportgroup.com/2017/08/14/canadian-tick-expert-climate-change-is-not-behind-lyme-disease/

How about we start doing good, unbiased science and get some answers?  

And there are far more guilty people (CDC, IDSA, and patent holders sitting on boards making decisions for patients) behind the denial of this plague and far more responsible for it than the president:

https://madisonarealymesupportgroup.com/2017/11/15/lyme-patients-file-lawsuit-against-idsa-and-insurers-over-treatment-denials/

https://madisonarealymesupportgroup.com/2018/06/14/corruption-human-rights-violations-against-lyme-doctors-scientists-and-parents-now-on-united-nations-record/

https://madisonarealymesupportgroup.com/2017/10/13/1st-officially-recognized-report-on-violations-of-lyme-patients-human-rights-is-released-updating-borreliosis-diagnostic-codes/

https://madisonarealymesupportgroup.com/2018/05/15/news-release-on-57-1-million-lyme-disease-lawsuit-filed-against-cdc/

Category:

Activism, Lyme, Ticks, Uncategorized

The Corruption of Evidence Based Medicine – Killing For Profit

http://www.greenmedinfo.com/blog/corruption-evidence-based-medicine-killing-profit

The Corruption of Evidence Based Medicine — Killing for Profit

Tuesday, June 19th 2018
Written By: Dr. Jason Fung
This article is copyrighted by GreenMedInfo LLC, 2018

The idea of Evidence Based Medicine (EBM) is great. The reality, though, not so much. Human perception is often flawed, so the premise of EBM is to formally study medical treatments and there have certainly been some successes.

Consider the procedure of angioplasty. Doctors insert a catheter into the blood vessels of the heart and use a balloon like device to open up the artery and restore blood flow. In acute heart attacks studies confirm that this is an effective procedure. In chronic heart disease the COURAGE study and more recently the ORBITA study showed that angioplasty is largely useless. EBM helped distinguish the best use of an invasive procedure.

So, why do prominent physicians call EBM mostly useless? The 2 most prestigious journals of medicine in the world are The Lancet and The New England Journal of Medicine. Richard Horton, editor in chief of The Lancet said this in 2015 https://www.thelancet.com/journals/lancet/article/PIIS0140-6736%2815%2960696-1/fulltext

The case against science is straightforward: much of the scientific literature, perhaps half, may simply be untrue

Dr. Marcia Angell, former editor in chief of NEJM wrote in 2009 that http://www.nybooks.com/articles/2009/01/15/drug-companies-doctorsa-story-of-corruption/

It is simply no longer possible to believe much of the clinical research that is published, or to rely on the judgment of trusted physicians or authoritative medical guidelines. I take no pleasure in this conclusion, which I reached slowly and reluctantly over my two decades as an editor

This has huge implications. Evidence based medicine is completely worthless if the evidence base is false or corrupted. It’s like building a wooden house knowing the wood is termite infested. What caused this sorry state of affairs? Well, Dr. Relman another former editor in chief of the NEJM said this in 2002  https://www.ncbi.nlm.nih.gov/pubmed/12561803

The medical profession is being bought by the pharmaceutical industry, not only in terms of the practice of medicine, but also in terms of teaching and research. The academic institutions of this country are allowing themselves to be the paid agents of the pharmaceutical industry. I think it’s disgraceful

The people in charge of the system — the editors of the most important medical journals in the world, gradually learn over a few decades that their life’s work is being slowly and steadily corrupted. Physicians and universities have allowed themselves to be bribed.

The examples in medicine are everywhere. Research is almost always paid for by pharmaceutical companies. But studies done by industry are well known to have positive results far more frequently https://www.ncbi.nlm.nih.gov/pubmed/20679560.  Trials run by industry are 70% more likely than government funded trials to show a positive result. Think about that for a second. If EBM says that 2+2 = 5 is correct 70% of the time, would you trust this sort of ‘science’?

Selective Publication — Negative trials (those that show no benefit for the drugs) are likely to be suppressed. For example, in the case of antidepressants, 36/37 https://www.nejm.org/doi/full/10.1056/NEJMsa065779 studies that were favourable to drugs were published. But of the studies not favorable to drugs, a paltry 3/36 were published. Selective publication of positive (for the drug company) results means that a review of the literature would suggest that 94% of studies favor drugs where in truth, only 51% were actually positive. Suppose you know that your stockbroker publishes all his winning trades, but suppresses all his losing trades. Would you trust him with your money? But yet, we trust EBM with our lives, even though the same thing is happening.

KillingForProfitGraph

Let’s look at the following graph of the number of trials completed versus those that were published. In 2008, the company Sanofi completed 92 studies but only a piddly 14 were published. Who gets to decide which gets published and which does not? Right. Sanofi. Which ones do you think will be published? The ones that favor its drugs, or the ones that prove their drugs do not work? Right. Keep in mind that this is the only rational course of action for Sanofi, or any other company to pursue. It’s idiotic to publish data that harms yourself. It’s financial suicide. So this sort of rational behavior will happen now, and it will not stop in the future. But knowing this, why do we still believe the evidence based medicine, when the evidence base is completely biased? An outside observer, only looking at all published data, will conclude that the drugs are far, far more effective than they are in reality. Yet, if you point this out in academic circles, people label you a quack, who does not ‘believe the evidence’.

KillingForProfitGraph2Rigging of Outcomes — Or consider the example of registration of primary outcomes. Prior to year 2000, companies doing trials did not need to declare what end points they measured. So they measure many different endpoints and simply figured out which one looked best and then declared the trial a success. Kind of like tossing a coin, looking at which one come up more, and saying that they were backing the winning side. If you measured enough outcomes, something was bound to come up positive.

In 2000, the government moved to stop these shenanigans. They required companies to register what they were measuring ahead of time. Prior to 2000, 57% of trials showed a positive result. After 2000, a paltry 8% showed good results. More evidence of the evidence base being completely corrupted by commercial interest, and the academic physicians who were getting rich on it tacitly allowing corruption because they know that you don’t bite the hand that feeds you

KillingForProfitExcerpt

‘Advertorials’ — Or this example of a review paper in the NEJM https://www.nejm.org/doi/pdf/10.1056/NEJMoa1001086 that fracture rates caused by the lucrative bisphosphonate drugs were “very rare”. Not only did the drug companies pay lots of consulting fees to the doctors, three of the authors of this review were full time employees! To allow an advertorial to be published as the best scientific fact is scandalous. Doctors, trusting the NEJM to publish quality, unbiased advice have no idea that this review article is pure advertising. Yet, we still consider the NEJM to be the very pinnacle of evidence based medicine. Instead, as all the editors of the journals sadly recognize, it has become lucre-based publishing. Mo money = better results.

Money from Reprints — The reasons for this problem is obvious to all  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2964337/ — it’s insanely profitable for journals to take money from Big Pharma. Journals want to be read. So they all try to get a high Impact Factor (IF). To do this, you need to get cited by other authors. And nothing boosts ratings like a blockbuster produced by Big Pharma. They have the contacts and the sales force to make any study a landmark. A less obvious benefit is the fees that are generated by Big Pharma purchasing articles for reprint. If a company publishes an article in the NEJM, they may order several hundred thousand copies of the article to be distributed to unsuspecting doctors everywhere. These fees are not trivial. The NEJM publisher Massachusetts Medical Society gets 23% of its income from reprints. The Lancet — 41%. The American Medical Association — a gut busting 53%. No wonder these journals are ready to sell their readers (ordinary physicians) down the river. It pays. Who needs journalistic ethics when there’s a Mercedes in the driveway? Mo money, baby. Mo money.

Bribery of Journal Editors — A recent study by Liu et al in the BMJ https://www.bmj.com/content/359/bmj.j4619 shed more light on the problem of crooked journals. Crooked journal editors. Editors play a crucial role in determining the scientific dialogue by deciding which manuscripts are published. They determine who the peer reviewers are. Using the Open Payments database, they looked at how much money the editors of the most influential journals in the world were taking from industry sources. This includes ‘research’ payments, which are largely unregulated. As mention previously, much ‘research’ consists of going to meetings in exotic locale. It funny how many conferences are held in beautiful European cities like Barcelona, and how few are done in brutally cold Quebec City.

Of all journal editors that could be assessed, 50.6% were on the take. The average payment in 2014 was $27,564. Each. This does not include an average $37, 330 given for ‘research’ payments. Other particularly corrupt journals include:

KillingForProfitPayToEditors

This is slightly horrifying. Each editor of the Journal of the American College of Cardiology received, on average $475 072 personally and another $119 407 for ‘research’. With 35 editors, that’s about $15 million in bribes to doctors. No wonder the JACC loves drugs and devices. It pays the private school bills. Mo money = we’ll publish your crooked studies for you. Mo money, baby, mo money.

Publication Bias — The evidence base that EBM depends upon is completely biased. Some people think I’m really anti-Pharma, but this is not really true. Big Pharma companies have a duty to their shareholders to make money. They have no duty to patients. On the other hand, doctors have a duty to patients. Universities have a duty to remain unbiased.

It is the failure of doctors and universities to keep their greedy paws out of the corrupting influence of Big Pharma money that is the problem. If Big Pharma is allowed to spend lots of $$$ paying off doctors and universities and professors, then it should do so to maximize profits. That is their mission statement. Doctors love to blame Big Pharma companies because it takes peoples gaze off the real problem — lots of doctors taking $$$ from anybody who will pay. The pharma industry is not the problem. Bribery of university doctors is the problem — one that is easily fixed if the political will exists.

Consider this study:  https://onlinelibrary.wiley.com/doi/pdf/10.1111/ene.13336  Looking at studies in the field of neurodegenerative disease, researchers looked at all the studies that were started but never finished or never published. Approximately 28% of studies never made it to the finish line. That’s a problem. If all the studies that don’t look promising for drug candidates are not published, then it appears that the drugs are way way more effective than they really are. But the published ‘evidence base’ would falsely support the drug. Indeed, Pharma sponsored trials were 5 times more likely to be unpublished.

Imagine you have a coin flipping contest. Suppose a player call ‘Big Pharma” chooses heads, and also pays the coin flipper. Every time the coin flipper pulls up tails, the results don’t count. Every time it comes up heads, it counts. This happens 28% of the time. Now, instead of a 50/50 split of heads and tails, it’s more like a 66/34 split of heads/tails. So the ‘evidence based medicine’ lover claims that heads is far more likely to come up than tails, and castigates people who don’t believe the results as ‘anti-science’.

Evidence based medicine depends entirely upon having a reliable base of evidence (studies). If the evidence base is tampered with, and paid for, then EBM as a science is completely useless. Indeed, the very editors whose entire careers have been EBM have now discovered it to be worthless. Does the CEO of Phillip Morris (maker of Marlboro cigarettes http://www.greenmedinfo.com/disease/tobacco-toxicity) smoke? That tells you all you need to know about the health risks. Do the editors of the NEJM and the Lancet believe EBM anymore? Not at all. So neither should we. We can’t believe evidence based medicine until the evidence has been cleaned up from the corrupting influence of commercial interests.

Financial conflicts of interest (COI), also known as gifts to doctors, is a well accepted practice. A national survey in the New England Journal of Medicine in 2007 https://www.nejm.org/doi/pdf/10.1056/NEJMsa064508 shows that 94% of physicians had ties to the pharmaceutical industry. This gravy train only rides in one direction. From Big Pharma to the wallets of doctors. Sure Big Pharma can simply pay doctors directly, and it does plenty of that. It’s no surprise that medical students with more exposure to pharmaceutical reps develop a more positive attitude towards them https://www.ncbi.nlm.nih.gov/pubmed/20672554. Many medical schools have limited exposure of medical students in response, but declined to get off the gravy train themselves. There is a simple relationship between how prominent a physician is (more articles published — almost always academic doctors and professors) and how much money they take from Big Pharma. Mo prominent = mo money. Further, there is a ‘clear and strong link’ between taking industry money and minimizing the risk of side effects of medications https://www.ncbi.nlm.nih.gov/pubmed/20299696.  What, you thought people teach at prestigious institutions like universities for the good of mankind? Maybe that’s why they went there, but that’s not why they stay. They came for the science. They stayed for the money.

KillingForProfitGraph3

So here’s a damning list of all the problems of EBM

  1. Selective Publication
  2. Rigged outcomes
  3. Advertorials
  4. Reprint Revenues
  5. Bribery of Journal Editors
  6. Publication Bias
  7. Financial Conflicts of Interests

When the evidence base of medicine is bought and paid for, people die. That is how doctors have created this opioid crisis that kills thousands of people. Pharmaceutical companies want to pay off doctors, just as drug lord want to pay off judges and police officers. Doctors, being human, should put safeguards against this temptation. Unfortunately, doctors and universities have been willing participants in this game of killing for profit https://www.facebook.com/NathanGillOfficial/videos/2134121280141545/.   We need to end it now. End the corruption of the universities. Stop the bribery of doctors.

Dr. Aseem Malhotra will be speaking about this very issue to the European Parliament this Thursday:  https://www.dietdoctor.com/live-stream-big-food-big-pharma-killing-profit

Nephrologist. Special interest in type 2 diabetes reversal and intermittent fasting. Founder of Intensive Dietary Management Program.

Disclaimer: This article is not intended to provide medical advice, diagnosis or treatment. Views expressed here do not necessarily reflect those of GreenMedInfo or its staff.

“© [Article Date] GreenMedInfo LLC. This work is reproduced and distributed with the permission of GreenMedInfo LLC. Want to learn more from GreenMedInfo? Sign up for the newsletter here http://www.greenmedinfo.com/greenmed/newsletter.”

______________

**Comment**

I am so thankful people are speaking out about what’s happening to Science.  This is being seen across the board, but particularly with tick borne illness.  This complex illness has been riddled with fraud, collusion, and conflicts of interest from the get-go and hasn’t changed in over 40 years.

For more:  https://madisonarealymesupportgroup.com/2017/01/13/lyme-science-owned-by-good-ol-boys/

https://madisonarealymesupportgroup.com/2018/06/14/corruption-human-rights-violations-against-lyme-doctors-scientists-and-parents-now-on-united-nations-record/

https://madisonarealymesupportgroup.com/2017/08/19/dr-liegner-guidelines-used-by-managed-care-causing-lyme-deaths/

https://madisonarealymesupportgroup.com/2017/01/02/fake-science/

https://madisonarealymesupportgroup.com/2017/09/25/trump-should-eliminate-fake-science/

https://madisonarealymesupportgroup.com/2017/01/28/sit-down-science/

https://madisonarealymesupportgroup.com/2017/12/05/bought-documentary-on-pharma-vaccines-gmos/

 

Category:

Activism, Lyme, research, Uncategorized

Anaplasmosis – The Other Tick-borne Illness You Need to Know About

https://www.fox25boston.com/news/the-other-tick-borne-illness-you-need-to-know-about/751535505  May 17, 2018

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 (News video here)

It’s carried by ticks, has been around for several decades and is often times misdiagnosed as the flu.

The other, lesser known tick-borne disease called anaplasmosis is yet another thing to worry about this tick season.

Last November, Kathy Grenier was bit by a tick, and what followed was a medical odyssey that’s left her with lingering symptoms and a better understanding that there’s more to tick-borne illnesses than Lyme disease.

“I actually thought I was going to die,” said Grenier. “And I would never have thought that one little tick could have taken me down.”

Jim Morelli@MorelliJim

ONLY ON @boston25: No rash, no problem after a tick bite, right? A local woman learns otherwise after she contracts a potentially fatal illness misdiagnosed in flu season as… what else?… the flu! Her story and her warning… all new at 11.

A few weeks after being bitten by that little tick, Grenier developed fever, chills and a bad headache.

“I had called the doctor to say, ‘ya know, I don’t know what’s going on’ and they said ‘yeah, you have a bad case of the flu.'”

Eventually, those symptoms eased, but then came back around Christmas, this time so bad that Grenier was admitted to the hospital.

Grenier underwent more than 100 tests to rule out other illnesses, and then, almost by chance, she happened to mention to one of her doctors that a month earlier she had been bitten by a tick.

At that point in time, Kathy’s arms were bruised purple from all the testing. Finally, doctors drew a sample which tested postive for anaplasmosis.

“Anaplasmosis is a bacterial infection that is transmitted by a small tick — the same tick that transmits Lyme Disease,” said Mark Klempner, MD, a professor at UMass Medical School.

Jim Morelli@MorelliJim

TAKEAWAY FROM TONIGHT’S TICK STORY on @boston25: Dr. Mark Klempner from @UMassMedical says if you’ve been bitten by a tick and see symptoms in subsequent weeks (chills, fever, headache) let your doctor KNOW YOU WERE BITTEN BY A TICK! Early treatment is essential!

Dr. Klempner says that, unlike Lyme disease, anaplasmosis usually doesn’t cause a rash, and it can be serious.

“When you wait, people can get very sick – and there are people who actually die from anaplasmosis,” said Dr. Klempner.

After spending more than a week in the hospital, and undergoing weeks of antibiotic therapy, Grenier recovered and is now sending a message to others.

“I think everybody’s more worried about Lyme Disease, but after having anaplasmosis, people need to educate themselves more,” said Grenier.

______________

**Comment**

This idea that Lyme always causes a rash is a myth.  Pure myth.

Please, doctors, learn your stuff!  People are dying out here due to oft-repeated myths:  https://madisonarealymesupportgroup.com/2018/02/19/calling-all-doctors-please-become-educated-regarding-tick-borne-illness-heres-how/

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Diagnosis at the Center of the Lyme Wars

https://c.ymcdn.com/sites/www.improvediagnosis.org/resource/resmgr/files/ImproveDx_April2018finalX.pdf  By Susan Carr

Diagnosis at the Center of the Lyme Wars

Controversy erupted soon after Lyme disease was discovered more than 40 years ago. Debates focused on both diagnosis and treatment are often characterized by heated exchanges and accusations. The existence of conflicting sets of clinical guidelines1,2—with their own societies and communities of physicians—reflects the way Lyme disease has travelled on two separate tracks since the 1980s.

The disease was identified as a tick-borne illness by Alan Steere in 1975 and named for towns in Connecticut where it was studied by Steere and his col- leagues.3 In 1980, other researchers linked a specific bacteria (Borrelia burgdorferi) to a species of ticks (Ixodes scapularis), which informed the use of antibiotics to treat the disease.4

By 1990, Steere was hearing about patients suffering from long-term symptoms associated with Lyme. He questioned both the diagnosis of a chronic version of the disease and long-term antibiotics used by some physicians to treat it, triggering a strong response from physicians and patients. During testimony before a US Senate committee in 1993, Steere was challenged by a physician and a young Lyme patient in a wheelchair who quietly pleaded that Steere help find a treatment for his afflic- tion. People in the gallery shouted, “He’s wrong! He’s wrong!” as Steere spoke.5

The rancorous environment, often referred to as the “Lyme Wars,”6,7,8 continues, and patients seeking treatment for persistent symptoms must choose between sides engaged in an active battle. Most patients who are diagnosed and treated early respond well to antibiotic treatment. The controversy surrounds those who remain ill after treatment or those whose diagnosis is delayed, for whom treatment becomes more difficult.9

People who find they or their children have been bitten by a tiny tick and turn to the internet for advice will find alarming information about where an untreated infection may lead. If they dig deep enough, they will find ugly comments common on the internet but unusual in the medical community.

On a brighter note, some are attempting to work collaboratively on issues related to Lyme, in groups that represent a diversity of expertise and opinion. While this is a hopeful sign, the process of working together on issues related to research, diag- nosis, and treatment is slow, with results not expected for years.

Problems with Diagnosis

Diagnosis is central to the controversy. Lyme disease is diagnosed based on signs and symptoms that include a rash—sometimes but not always erythema migrans (EM)—and “flu-like” symptoms, including fever, chills, headache, fatigue, aches, and swollen lymph nodes, which occur within 30 days of infection.10,11,12 The patient’s history, including whether they have observed a tick bite or spent time outdoors in areas where Lyme is known to occur, may help the physician make a diagnosis. There is general acceptance that most cases of Lyme detected soon after infection are treated successfully with a 10-to-21-day course of oral antibiotics.13

Existing laboratory blood tests for Lyme disease are problematic especially in patients with acute Lyme.13 The lack of a dependable laboratory test and reliance on common signs and symp- toms often mean that the diagnosis is missed or delayed, which can lead to more serious ill- ness.14,15,16,17 In addition to the EM rash, which can emerge or recur long after infection, symp- toms of untreated Lyme disease include chronic pain, fatigue, neuro-cognitive and behavioral problems.11

Diagnosis at the Center of the Lyme Wars

The existence of other tickborne diseases that cause similar symptoms and can co-infect with Lyme further complicate diagnosis.18

Diagnosis of disease in patients with long-term symptoms is a central issue in the controversy. One side believes that Lyme disease is an acute infection and short-term treatment is curative. They conclude that on-going symptoms reflect “post-treatment Lyme disease” symptoms or syndrome (PTLDS).13,19,20 The other side believes that Lyme disease with persistent symp- toms—“chronic Lyme”—requires longer treat- ment durations or a combination of antibiotics to effect cure.

Those in the PTLDS camp say that most patients diagnosed with chronic Lyme either don’t have the disease—have something else—or have relapsed after initial treatment. The PTLDS camp says there is no evidence that the infection persists following treatment and recommend against long-term use of antibiotics.17 Some believe that individuals with chronic symptoms may have had an autoimmune response to the initial Lyme infection.

Patient Community Working on Research

Lyme is quite common—the CDC estimates that more than 300,000 people in the US are infected each year (see sidebar page 3)—but being common doesn’t mean the disease is well understood. Lack of definitive, large-scale clinical treatment trials leaves many questions unanswered.

Inspired by the experience of community and patient advocates who influenced developments in AIDS and cystic fibrosis, the Lyme patient community is working to accelerate progress in diagnosis and treatment

According to Lorraine Johnson, chief operating officer of LymeDisease.org and one of SIDM’s patient partners (see p5), the National Institutes of Health has funded only four studies of patients with persisting symptoms of Lyme disease, the largest of which had 129 enrollees. LymeDisease.org is conducting a research project called MyLymeData, which includes patient-reported health information for more than 10,000 Lyme patients (personal communication with Lorraine Johnson,March23,2018).

The large number of patients in MyLymeData will allow researchers to study biomarkers and treatment effects in subpopulations, potentially helping to understand why some patients respond well to initial treatment and others don’t. Patients involved in this research are long-term Lyme disease patients diagnosed by physicians. Johnson says that, in addition to conducting on-going observational data, MyLymeData will serve as a research platform to help conduct clinical trials—including trials that might lead to better diagnostic tools. The National Science Foundation has awarded an $800,000 3-year grant to a team of big-data researchers to explore predictive data analytics using the more than 2 million data points collected in the registry.23

Johnson takes heart from the experience of the cystic fibrosis (CF) community. During the 1960s and 1970s, without a definitive diagnostic test or initial agreement about optimal treatment regimens, physicians in a handful of hospitals were able to improve the quality of life and outcomes, including life expectancy, for cystic fibrosis patients. Working outside the box of traditional guidelines and in partnership with patients and families, physicians experimented with treatments, focused intently on patient response, and openly shared data about their results.24 Following those improvements and discovery of the gene that causes CF, stakeholders including patients and advocacy groups have continued to find synergies that promote research and learning beyond what would be possible acting alone.25

HHS Collaborative Working Group

The US Department of Health & Human Services’ Tick-Borne Disease Working Group currently represents the best hope of national collaboration for improvement in Lyme disease. Established in 2016 as part of the 21st Century Cures Act, members of the working group—13 members plus many more serving on subcommittees—represent a diversity of opinions and experience. The group is chartered to monitor and guide federal research and to provide expertise to research and prevention efforts. The group had its first meetings in December 2017 and February 2018 and is expected to issue its first report to Congress in December 2018. It will con- tinue to report every other year until its charter expires in 2022.26

No one expects quick solutions to the challenges posed by Lyme and other tick-borne diseases. In addition to working on better options for diagnosis and treatment, many groups, including federal and local agencies, advise preventing tick bites through the use of insect repellent, checking for ticks after being outside, and seeing a physician quickly if symptoms develop. Patients with chronic symptoms associated with Lyme, whether or not they have been treated previously, must choose among competing expert opinions. Some will feel they need to become experts themselves and perhaps work with one of the patient-led information and advocacy groups.

Lyme activists cite the AIDS movement as a model for patient expertise and activism that fought against the medical establishment and ultimately affected the science of diagnosis and treatment.27 AIDS has been called the first “large-scale conversion of disease ‘victims’ into activist-experts.”28(p8) Reviewing a 1996 book about power struggles that occurred during the early years of the AIDS epidemic, David Rochefort says:
Epstein shows that scientific findings are seldom ‘definitive’; rather, they are constructed as
such on the basis of complicated, sometimes contradictory evidence that is filtered through
a politics of knowledge in which a variety of persons, organizations, and institutions compete to control the outcome.29(p262)

It will not be clear for some time who will win the Lyme Wars. It seems certain, however, that patients and their organizations will have played an important, perhaps leading, role in the final outcome. And even if the traditional medical establishment turns out to be correct in its appraisal of long-term Lyme symptoms, the Lyme Wars may be seen as a challenging and pivotal episode in the development of patient expertise and power.

References
1 Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment , treatment, and prevention of Lyme disease, human granulocytic Anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
2 International Lyme and Associated Disease Society. Treatment guidelines: evidence assessments and guideline recommendations in Lyme disease. http:// http://www.ilads.org/lyme/treatment-guideline.php. Accessed April 8, 2018.
3 Steere AC, Malawista SE, Snydman DR, et al. Lyme arthritis: an epidemic of oligoarticular arthritis in children and adults in three Connecticut communities. Arthritis Rheum. 1977;20(1):7-17.
4 Moore A, Nelson C, Molins C, Mead P, Schriefer M. Current guidelines, common clinical pitfalls, and future directions for laboratory diagnosis of Lyme disease, United States. Emerg Infect Dis. 2016;22(7):1169-1177.
5 Grann D. Stalking Dr. Steere over Lyme disease. The New York Times Magazine. June 17, 2001.
6 Specter M. The Lyme wars. The New Yorker. July 1, 2013. https://www.newyorker.com/magazine/2013/07/01/ the-lyme-wars. Accessed April 1, 2018.
7 Becker D, Mitchell Z. CommonHealth: Lyme disease rehab center seeks to remain neutral in ‘Lyme wars.’ Radio Boston. WBUR. http://www.wbur.org/ radioboston/2017/08/28/the-lyme-wars. Published August 28, 2017. Accessed March 12, 2018.
8 Baker PJ. Ending the Lyme disease wars. From the
desk of the executive director. American Lyme Disease Foundation website. http://www.aldf.com/wp-content/ uploads/2017/01/Ending-the-Lyme-Wars-1.27.17.pdf. Updated January 27, 2017. Accessed March 31, 2018.
9 Klempner M, Hu L, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med 2001;12(2):85-92.
10 Centers for Disease Control and Prevention. Signs and symptoms of untreated Lyme disease. https://www. cdc.gov/lyme/signs_symptoms/index.html. Updated October 26, 2016. Accessed April 1, 2018.
11 Mayo Clinic. Lyme disease: symptoms & causes.
https://www.mayoclinic.org/diseases-conditions/lyme- disease/symptoms-causes/syc-20374651. Accessed April 1, 2018.
12 Lyme disease diagnostics research. National Institute of Allergy and Infectious Diseases website. https:// http://www.niaid.nih.gov/diseases-conditions/lyme-disease- diagnostics-research. Updated September 28, 2016. Accessed April 2, 2018.
13 ShapiroED.Lymedisease[ClinicalPractice].NEnglJ Med. 2014;370(18):1724-1731.
14 Centers for Disease Control and Prevention. Lyme disease home. Diagnosis and testing. https://www.cdc. gov/lyme/diagnosistesting/. Updated August 7, 2017. Accessed March 25, 2018.
15 CarusoC.TestsforLymediseasemissmanyearly cases—but a new approach could help. STAT. https:// http://www.statnews.com/2017/06/28/early-lyme-tests/. Published June 28, 2017. Accessed April 1, 2018.
16 NigrovicLE,BennettJE,BalamuthF,etal;PediLyme Net. Accuracy of clinician suspicion of Lyme disease in the emergency department. Pediatrics. 2017;140(6): e20171975.
17 FederHM,JohnsonBJB,O’ConnellS.ShapiroED, Steere AC, Wormser GP; Ad Hoc International Lyme Disease Group. A critical appraisal of “chronic Lyme disease.” N Engl J Med. 2007;357(14):1422-1430.
18 About Lyme disease co-infections. Lymedisease.
org. https://www.lymedisease.org/lyme-basics/ co-infections/about-co-infections/. Accessed April 1, 2018.
19 Melia MT, Auwaerter PG. Time for a different approach to Lyme disease and long-term symptoms [Editorial]. N Engl J Med. 2016; 374(13):1277-1278.
20 Halperin JJ. Chronic Lyme disease: misconceptions and challenges for patient management. Infect Drug Resist. 2015;8:119-128.
21 Daley B. Lyme disease figures soar, mostly in Northeast. The Boston Globe. August 20, 2013.
22 CentersforDiseaseControlandPrevention.CDC provides estimate of Americans diagnosed with Lyme disease each year [Press release]. August 19, 2013. https://www.cdc.gov/media/releases/2013/p0819- lyme-disease.html. Accessed March 31, 2018.
23 BresnickJ.Predictiveanalytics,AIforLymediseasegets $800K NSF grant. HealthIT Analytics. September 19, 2017. https://healthitanalytics.com/news/predictive- analytics-ai-for-lyme-disease-gets-800k-nsf-grant. Accessed April 8, 2018.
24 GawandeA.Thebellcurve.TheNewYorker.
December 6, 2004. https://www.newyorker.com/ magazine/2004/12/06/the-bell-curve. Accessed April 1, 2018.
25 RamseyBW,NepomGT,LonialS.Academic, foundation, and industry collaboration in finding new therapies. N Engl J Med. 2017;376(18):1762-1769.
26 Tick-BorneDiseaseWorkingGroup.USDeptofHealth & Human Services website. https://www.hhs.gov/ash/ advisory-committees/tickbornedisease/index.html. Updated February 21, 2018. Accessed April 2, 2018.
27 StrickerRB,JohnsonL.Lymediseasediagnosisand treatment: lessons from the AIDS epidemic. Minerva Medica. 2010;101(6):419-425.
28 EpsteinS.ImpureScience:AIDS,Activism,andthe Politics of Knowledge. 1996. Berkeley, CA: University of California Press.
29 RochefortDA,reviewer.HealthAff(Millwood). 1999;18(3):262-264. Review of: Epstein S. Impure Science: AIDS, Activism, and the Politics of Knowledge.

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Another Conflict of Interest in TBD Working Group

https://www.linkedin.com/pulse/urgent-action-replace-kristen-honey-vice-chair-group-luche-thayer/

URGENT ACTION: Replace Kristen Honey, Vice-Chair of the Tick-Borne Disease Working Group

Jenna Luche-Thayer,

Friends from all countries,

We really need to replace Kristen Honey and FAST. Given the information I have verified and documented, every day I am more concerned regarding how she claims to represent Lyme patient priorities. Nevertheless, she continues to play a central role in the Report process of the Tick-Borne Disease Working Group. This Report may have GLOBAL ADVERSE IMPACT on access to diagnosis and care.

Once you’ve had a chance to read the complaint, and if you agree the information contained makes Honey an unsuitable Vice-Chair for the Tick-Borne Disease Working Group, then …

…. please, AS SOON AS POSSIBLE, copy, cut and paste the complaint and mail it in (revisions are fine). The complaint is addressed to the person responsible for FACA, the Designated Federal Officer (DFO) of the Working Group and the alternate DFO.

I also ask that you share this GLOBALLY and ask others to TAKE ACTION.

Remember, we got rid of Wolitski! We can do this!

Thanks – Jenna

…………………………………………………………………………………………………

To:   Tynetta.Dreher@hhs.gov, James.Berger@hhs.gov, Kaye.Hayes@hhs.gov

Cc:  brett.giroir@hhs.gov

Subject:  Failure to meet 21st Century Cures Act requirements and other Concerns

Dear Ms. Dreher, Mr. Beger and Ms. Hayes,

I have sound reasons to respectfully ask that Vice-Chair of the Tick-Borne Disease Working Group, Kristen Honey be immediately removed from her post:

1. apparently she has not truly represented a federal officer for the Working Group

2. while serving as Vice-Chair she is apparently seeking financing to bring a patent to market ‘to cure’ Lyme patients (and perhaps other patient groups)

3. her documented orientations toward healing has caused great concern among many in the Lyme community

I ask she be replaced with a federal officer familiar with complicated and persistent Lyme and coinfections, including tick-borne diseases and treatment options that have meet internationally accepted standards for clinical practice guidelines.

Not A Federal Officer

The Vice-Chair of the Working Group, Kristen Honey, is a Senior Research Scholar from Stanford University on assignment to the Office of Management and Budget, and apparently not a federal officer [1].

Her resume is on LinkedIn [2] and states from “January 2017 to present Senior Policy Analyst via Stanford University Interagency Personnel Agreement (IPA)”. The Intergovernmental Personnel Act (IPA) of 1970 allows the temporary assignment of skilled personnel between Federal and non-Federal entities.

However, since December 2017, Honey has been presented by HHS to the public as holding a White House post. Therefore, many of the those in the Lyme community assumed she was a federal official and met the criteria to be one of the seven federal voting members of the Working Group as required by law as required in the 21st Century Cures Act.

The SIX federal members are: 1. Charles Benjamin (Ben) Beard, 2. Commander Scott Cooper, 3. Dennis M. Dixon, 4. Captain Estella Jones, 5. Allen L. Richards and 6. Vanila M. Singh.

The EIGHT non-federal members are: 1. John N. Aucott, Chair, 2. Kristen Honey, Vice-Chair, 3. Wendy Adams, 4. Richard Horowitz, 5. Lise E. Nigrovic, 6. Robert Sabatino, 7. Patricia V. Smith and 8. Robert Smith

On June 16, 2018, during the Public Meeting of the Working Group I disclosed Honey’s legal status (in public comments) and now many in the Lyme community are disappointed to find that the Working Group leadership perpetuated what appears to be a deception regarding the Vice Chair’s federal status.

We also note that this failure to meet the basic membership requirements of the Working Group as cited in 21st Century Cures Act may invalidate all the Working Group’s efforts to date.

Fund Raising and Conflicts of Interest

Honey has a website  that claims [4] (see under Kristen’s Journey) “… based on limited scientific information and guided by my own personal tolerance for the unknown and risk (and after six months of FDA-approved antibiotics/antifungals failing to work), I ultimately chose the unknown. I went outside the bounds of FDA-approved treatments and self-administer intravenous injections of nanominerals … Fortunately, the treatments worked … Today, after two and a half years (from 2009 to 2012)… I am symptom free and 100% Lyme free.”

(See under Book) “… the novel IV nano-mineral solution — which Dr. Honey pioneered and calls her “lynchpin” for Lyme recovery and thriving wellness — has been patented using open-source intellectual property (IP)…If you or your organization wish to support Dr. Honey’s vision to bring this IV nano-mineral solution to market through open-source IP and open-source medicine, we welcome contributions and collaborations [5].”

Apparently, while ‘appearing to be a federal officer’ on the Working Group, Honey’s website is also actively seeking funding to bring her non-FDA approved technology for Lyme patients to market and indicates it will cure the disease. This does not appear ethical.

Optics, Orientation and Related Concerns

The follow information has been widely disseminated in the Lyme community and generated much concern regarded Honey’s claims to represent patient interests and priorities. 

Rachael Bleau [6] is a Doctor of Metaphysical Science. (Bleau’s Doctor degree can be earned on-line from the UniversityofMetaphysics.com.) Honey is featured in Bleau’s book titled Clear Your Way to Freedom —the key to unlocking your whole healing [7]. According to this book, Bleau uses a spiritual/religious belief in ‘Ascended Masters’ to heal persons [8].

Adherents of these Ascended Master Teachings, such as the Great White Brotherhood [9] believe that the All-Pervading Presence of God does not act nor create except through Its Individualizations. All creation comes forth through These Individual Identities and is sustained by Them. Included in this Cosmic Hierarchical scheme are Solar Logoi, Elohim, Sons and Daughters of God, Ascended Masters, Cosmic Beings, the Twelve Solar Hierarchies, Archangels, Angels, Beings of the Elements, and Twin Flames of the Alpha-Omega Polarity sponsoring Systems of Worlds and entire Galactic Systems.

Page 78 of this book describes Honey’s general background, confirming it is the same Kristen Honey who is the Vice Chair of the TBDWG [8]. According to this book, Bleau used her ‘spirit team’, which includes Ascended Masters, to heal Honey from illness including Lyme disease (page 76). On page 74, Bleau writes about finding an ‘unhappy attachment’ that was hooked on Honey’s left adrenal and ‘hanging on for dear life’. In this passage the author states she removed the unhappy attachment while Honey saw ‘black energy dissipating’. Bleau goes on to state that Honey then fills up with ‘a golden light like honey’ ‘just like her last name’.

On page 76, Bleau refers to the root energy of Honey’s debilitating Lyme disease as being evil. Bleau’s spiritual team was assembled and gave her instructions on where to place her hands on Honey. Bleau found ‘a dark seat of energy’ on Honey’s right thigh. Bleau then ‘profiled the energy’ to locate its home and claims to have heard a hissing sound, like that of a snake, when she pulled the evil energy from Honey’s body.

According to a 2013 blog by the Better Health Guy, Honey gave a presentation at the Integrative Lyme Solutions: The Evidence Basis Conference on June 21-22, 2013 in Dallas, Texas [10]. Honey shared her own personal recovery story. Honey spoke about how she was very sick, ‘likely from tick bites’ and struggled with Lyme infection, Babesia, Bartonella, Ehrlichia, and Mold. In her presentation, Honey noted:

×    she did ‘mind, body and spirit work for her successful recovery’

×    much of healing ‘is the responsibility of the patient to work on the spiritual or ‘upper levels’ of oneself

×    her healing was supported by nanoparticles of gold and silver

Apparently, Honey said she ‘feels strongly that we [Lyme patients] can recover 100% if we choose to’.

Many in the Lyme community are concerned with Honey’s apparent orientation for healing from these complex diseases. Does she believe that persons suffering from Lyme disease, including chronic Lyme with serious debilitation and disability, choose to stay sick?  Does this mean that Honey believes that these patients, many who are impoverished by their illness, should pay $350 for a 90 minute session with Bleau? Or someone with Bleau’s special healing powers? Or will patients be encouraged to purchase her ‘novel IV nano-mineral solution’ to be cured of Lyme?

Please remove Kristen Honey immediately from the post of Vice Chair of the Tick-Borne Disease Working Group, thank you.

YOUR NAME

…………………………………………………………………………………………….

Footnotes

[1] https://www.linkedin.com/in/kristenhoney/

[2] source: LinkedIn, CV on https://www.slideshare.net/slideshow/embed_code/key/gPTaDnPp1hyR6N

[3] https://www.hhs.gov/ash/advisory-committees/tickbornedisease/about/21-century-cures-act/index.html

[4] http://honey2healing.org/

[5] http://honey2healing.org/book/

[6] Rachael Bleau’s website https://www.rachaelbleau.net/

[7] Clear Your Way to Freedom by Rachael Bleau MSC.D. Copyright 2014 by Balboa Press. Please note this book has a disclaimer, “the author of this book does not dispense medical advice or prescribe the use of any technique as a form of treatment for physical, emotional, or medical problems without the advice of a physician, either directly or indirectly. The intent of the author is only to offer information of a general nature to help you in your quest for emotional and spiritual well-being”

[8] See pages 39,40,59, 61, 62, 76, 81 https://books.google.com/books?id=1sAAAwAAQBAJ&printsec=frontcover&dq=editions:vAGjiTCFQpAC&hl=en&sa=X&ved=0ahUKEwiE68Cs-OHaAhXvmuAKHbCCC7oQ6AEIKTAA#v=onepage&q=Kristen&f=false

[9] Great White Brotherhood – https://www.summitlighthouse.org/great-white-brotherhood/

[10] Disclaimer from the blog of Better Health Guy: “Nothing in this text is intended to serve as medical advice. All medical decisions should be made only with the guidance of your own personal medical authority. This information was taken as notes during the conference and may not represent the exact statements of the speakers. Errors and/or omissions may be present. If you have any corrections to the content listed below, please Contact Me. [Better Health Guy]”

_______________

**Comment**

First, I’ll bet if you interviewed every single person on the Working Group about their beliefs, you’d hear 100 different answers.  Personally, I don’t care if someone “believes” the moon is made of cheese as long as they have the ability to weigh those “beliefs” and make productive decisions for really, really, sick people, despite personal preferences, beliefs, and experiences.

The only potential problem with Honey’s “beliefs” and personal experience is she may make the mistake of feeling her experience is the “right” one.  If there’s one thing I’ve learned on this journey to hell and back is that it hits everyone so differently and therefore requires different answers.  Long-term antibiotics DO work for some, and for some they do not.  To rule them out for everyone; however, would be foolish just due to the fact some continue to have symptoms.

What is super concerning is another conflict of interest.  Conflicts of interest got us into this mess and they keep rolling out like a barrel full of monkeys.  This HAS TO END!  Since Honey stands to make money on her patented “nano particle” treatment, she stands to gain by downplaying or eliminating long-term or IV antibiotics for Lyme/MSIDS.

If you have a conflict of interest, GET OFF THE WORKING GROUP.  Period.  If you stand to make money based on decisions the group makes – GET OFF THE GROUP.

 

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