Archive for the ‘Activism’ Category

Canadian TV Series About Lyme Disease – “Bitten”

https://www.ctvnews.ca/mobile/w5/promising-treatment-brings-new-hope-for-patients-with-chronic-lyme-disease-  News videos here

Promising treatment brings new hope for patients with chronic Lyme disease

W5 Producer
Published Friday, November 20, 2020 
W5’s Molly Thomas speaks to a Canadian Lyme disease patient who had to struggle for years just to get a diagnosis.
There are more ticks in Canada than ever before, but is the country’s health care system prepared to deal with more Lyme disease cases?
Nikki Kent had to go through a battery of tests and years of uncertainty before she was finally diagnosed with Lyme disease.
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**Comment**
Informative Canadian news series on Lyme disease.
The series looks at a number of Canadian Lyme patients that have had trouble obtaining diagnosis and treatment in Canada, necessitating they travel thousands of miles to the United States.
The series points out the:
There is a myth still being perpetrated in the medical community on the effectiveness of 1 or 2 doses of doxycycline:

Daniel J. Cameron, MD MPH, states there has only been one study (Nadelman et al) on the effectiveness of 1 pill of doxycycline and only found a reduction in the number of erythema migraines (EM) rashes compared to the placebo group.  According to him, the IDSA 1 pill of doxy approach started in 2006 despite the fact that three previous prophylactic antibiotic trials for a tick bite had failed.

Only one study in 2001 tested this hypothesis at one hospital in New York.

For the study, the bullseye rash was the diagnostic criteria to determine if doxy prevented LD. The study actually showed that people bitten by nymphs were more likely to develop a bullseye rash and therefore diagnosed with LD in comparison with those bitten by an adult tick. None of those bitten by adult ticks developed a bullseye rash.

The Bullseye is a poor indicator of LD.

Only 50% with LD got any kind of rash and only 9% developed a bullseye.

Two pills used at the time of tick bite by a nymph prevented people from getting the bullseye – so they were not diagnosed as having LDand were excluded from the study.

So, will 2 pills of doxy prevent Lyme?

No.

So much for evidence based medicine.
The article in the top link then goes onto discuss Dr. Tim Cook who has had success using disulfiram/Antabuse.  He quotes:
“OK, now this is exciting,” he said. “Disulfram (DSF) is a breakthrough because it is one of only two or three medications that are known to specifically target the slow-growth phase of Lyme that regular antibiotics do not eradicate.”
“What has surprised me is how patients improve with very little of it. Prior to DSF, the conventional combinations of antibiotics would make most patients feel quite a bit better, but they would often say that their ‘brain fog’ and fatigue never quite went away. These two symptoms are often completely and rapidly resolved with DSF,” Dr. Cook said.

LymeMIND: Looking Towards the Future

http://” data-wplink-url-error=”true”>a; gyroscope; picture-in-picture” allowfullscreen></iframe>  Approx. 12 Min

5th Annual LymeMIND Virtual Conference 2020 Saturday, October 10th

Hosted by “Icahn School of Medicine at Mount Sinai proudly supported by the Steven & Alexandra Cohen Foundation: Cohen Lyme & Tickborne Disease Initiative”
Looking towards the future
  • Bennett Nemser, MPH, MBA, Senior Program Officer, Steven & Alexandra Cohen Foundation
  • Brian A. Fallon, MD MPH, Director, Lyme & Tickborne Diseases Research Center, Columbia University Irving Medical Center
  • John Aucott, MD, Associate Professor Director, Lyme Disease Research Center Johns Hopkins University School of Medicine Looking towards the Future
Discussion of innovative new projects that will help translate scientific breakthroughs into improved patient care over the next four (4) years.

5 Points to the TBDWG

https://www.lymedisease.org/mervine-coments-tbdwg-nov17/

Phyllis Mervine’s public comment to TBD Working Group

COVID-19: Politicization, “Corruption,” And Suppression of Science

https://www.bmj.com/content/371/bmj.m4425

Covid-19: politicisation, “corruption,” and suppression of science

BMJ 2020; 371 doi: https://doi.org/10.1136/bmj.m4425 (Published 13 November 2020)Cite this as: BMJ 2020;371:m4425

Kamran Abbasi, executive editor
Author affiliations
When good science is suppressed by the medical-political complex, people die

Politicians and governments are suppressing science. They do so in the public interest, they say, to accelerate availability of diagnostics and treatments. They do so to support innovation, to bring products to market at unprecedented speed. Both of these reasons are partly plausible; the greatest deceptions are founded in a grain of truth. But the underlying behaviour is troubling.

Science is being suppressed for political and financial gain. Covid-19 has unleashed state corruption on a grand scale, and it is harmful to public health.1 Politicians and industry are responsible for this opportunistic embezzlement. So too are scientists and health experts. The pandemic has revealed how the medical-political complex can be manipulated in an emergency—a time when it is even more important to safeguard science.

The UK’s pandemic response provides at least four examples of suppression of science or scientists. First, the membership, research, and deliberations of the Scientific Advisory Group for Emergencies (SAGE) were initially secret until a press leak forced transparency.2 The leak revealed inappropriate involvement of government advisers in SAGE, while exposing under-representation from public health, clinical care, women, and ethnic minorities. Indeed, the government was also recently ordered to release a 2016 report on deficiencies in pandemic preparedness, Operation Cygnus, following a verdict from the Information Commissioner’s Office.34

Next, a Public Health England report on covid-19 and inequalities. The report’s publication was delayed by England’s Department of Health; a section on ethnic minorities was initially withheld and then, following a public outcry, was published as part of a follow-up report.56 Authors from Public Health England were instructed not to talk to the media. Third, on 15 October, the editor of the Lancet complained that an author of a research paper, a UK government scientist, was blocked by the government from speaking to media because of a “difficult political landscape.”7

Now, a new example concerns the controversy over point-of-care antibody testing for covid-19.8 The prime minister’s Operation Moonshot depends on immediate and wide availability of accurate rapid diagnostic tests.9 It also depends on the questionable logic of mass screening—currently being trialled in Liverpool with a suboptimal PCR test.1011

The incident relates to research published this week by The BMJ, which finds that the government procured an antibody test that in real world tests falls well short of performance claims made by its manufacturers.1213  Researchers from Public Health England and collaborating institutions sensibly pushed to publish their study findings before the government committed to buying a million of these tests but were blocked by the health department and the prime minister’s office.14

Why was it important to procure this product without due scrutiny?

Prior publication of research on a preprint server or a government website is compatible with The BMJ’s publication policy. As if to prove a point, Public Health England then unsuccessfully attempted to block The BMJ’s press release about the research paper.

Politicians often claim to follow the science, but that is a misleading oversimplification. Science is rarely absolute. It rarely applies to every setting or every population. It doesn’t make sense to slavishly follow science or evidence. A better approach is for politicians, the publicly appointed decision makers, to be informed and guided by science when they decide policy for their public. But even that approach retains public and professional trust only if science is available for scrutiny and free of political interference, and if the system is transparent and not compromised by conflicts of interest.

Suppression of science and scientists is not new or a peculiarly British phenomenon. In the US, President Trump’s government manipulated the Food and Drug Administration to hastily approve unproved drugs such as hydroxychloroquine and remdesivir.15 Globally, people, policies, and procurement are being corrupted by political and commercial agendas.16

The UK’s pandemic response relies too heavily on scientists and other government appointees with worrying competing interests, including shareholdings in companies that manufacture covid-19 diagnostic tests, treatments, and vaccines.17 Government appointees are able to ignore or cherry pick science—another form of misuse—and indulge in anti-competitive practices that favour their own products and those of friends and associates.18

How might science be safeguarded in these exceptional times? The first step is full disclosure of competing interests from government, politicians, scientific advisers, and appointees, such as the heads of test and trace, diagnostic test procurement, and vaccine delivery. The next step is full transparency about decision making systems, processes, and knowing who is accountable for what.

Once transparency and accountability are established as norms, individuals employed by government should ideally only work in areas unrelated to their competing interests. Expertise is possible without competing interests. If such a strict rule becomes impractical, minimum good practice is that people with competing interests must not be involved in decisions on products and policies in which they have a financial interest.

Governments and industry must also stop announcing critical science policy by press release.

Such ill judged moves leave science, the media, and stock markets vulnerable to manipulation. Clear, open, and advance publication of the scientific basis for policy, procurements, and wonder drugs is a fundamental requirement.19

The stakes are high for politicians, scientific advisers, and government appointees. Their careers and bank balances may hinge on the decisions that they make. But they have a higher responsibility and duty to the public. Science is a public good. It doesn’t need to be followed blindly, but it does need to be fairly considered. Importantly, suppressing science, whether by delaying publication, cherry picking favourable research, or gagging scientists, is a danger to public health, causing deaths by exposing people to unsafe or ineffective interventions and preventing them from benefiting from better ones. When entangled with commercial decisions it is also maladministration of taxpayers’ money.

Politicisation of science was enthusiastically deployed by some of history’s worst autocrats and dictators, and it is now regrettably commonplace in democracies.20 The medical-political complex tends towards suppression of science to aggrandise and enrich those in power. And, as the powerful become more successful, richer, and further intoxicated with power, the inconvenient truths of science are suppressed. When good science is suppressed, people die.

Footnotes

  • Competing interests: I have read and understood BMJ policy on declaration of interests and have no relevant interests to declare.

  • Provenance and peer review: Commissioned; not externally peer reviewed.

This article is made freely available for use in accordance with BMJ’s website terms and conditions for the duration of the covid-19 pandemic or until otherwise determined by BMJ. You may use, download and print the article for any lawful, non-commercial purpose (including text and data mining) provided that all copyright notices and trade marks are retained.

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**Comment**
 
Hear, hear!  Well stated.
 
Nowhere has this been more evident than in the recent Danish Mask study that 3 scientific journals refused to even publish:  https://madisonarealymesupportgroup.com/2020/11/06/danish-newspaper-reveals-largest-study-on-masks-has-been-rejected-by-3-medical-journals/
 
When it finally was recently published, the authors had to genuflect so far down they nearly fell on their faces explaining study caveats, exceptions, and limitations that only proves those pushing the narrative are powerful bullies: https://madisonarealymesupportgroup.com/2020/11/20/danish-mask-study-finally-published-masks-dont-work/ 
Scientists should not have to apologize for their findings.  

Bowing down to external forces to suppress and downplay results that don’t fit the accepted narrative is the ‘new norm’ in science.  Prepare for more of it.  This has been done for over 40 years with Lyme/MSIDS. Public ‘authorities’ just ignore research they don’t like & pretend it doesn’t exist.

For more:  
 

All 8 Insurance Companies Settle in Lyme Patient Lawsuit Against IDSA

https://www.lymedisease.org/torrey-idsa-insurance-settlement/

All 8 insurance companies settle in Lyme patient lawsuit against IDSA