https://www.mdpi.com/2673-8112/4/9/101

Trust Us—We Are the (COVID-19 Misinformation) Experts: A Critical Scoping Review of Expert Meanings of “Misinformation” in the Covid Era

by Claudia Chaufan1,*, Natalie Hemsing1, Camila Heredia1 and Jennifer McDonald2
1School of Health Policy and Management, York University, Toronto, ON M3J 1P3, Canada
2Medical School, University of Central Lancashire, Preston PR1 7BH, UK
*Author to whom correspondence should be addressed.
COVID 20244(9), 1413-1439; https://doi.org/10.3390/covid4090101
Submission received: 18 June 2024 / Revised: 19 August 2024 / Accepted: 28 August 2024 / Published: 10 September 2024
(This article belongs to the Special Issue How COVID-19 and Long COVID Changed Individuals and Communities 2.0)

Abstract

Since the WHO declared COVID-19 a pandemic, prominent social actors and institutions have warned about the threat of misinformation, calling for policy action to address it. However, neither the premises underlying expert claims nor the standards to separate truth from falsehood have been appraised. We conducted a scoping review of the medical and social scientific literature, informed by a critical policy analysis approach, examining what this literature means by misinformation. We searched academic databases and refereed publications, selecting a total of 68 articles for review. Two researchers independently charted the data.
Our most salient finding was that verifiability relied largely on the claims of epistemic authorities, albeit only those vetted by the establishment, to the exclusion of independent evidentiary standards or heterodox perspectives. Further, “epistemic authority” did not depend necessarily on subject matter expertise, but largely on a new type of “expertise”: in misinformation itself.
Finally, policy solutions to the alleged threat that misinformation poses to democracy and human rights called for suppressing unverified information and debate unmanaged by establishment approved experts, in the name of protecting democracy and rights, contrary to democratic practice and respect for human rights.
Notably, we identified no pockets of resistance to these dominant meanings and uses. We assessed the implications of our findings for democratic public policy, and for fundamental rights and freedoms.  (See link for article)
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Important excerpt:
Take, for instance, the Virality Project mentioned earlier, a US-government supported “partnership” among Stanford University, New York University, and University of Washington researchers; tech companies; federal agencies; state-funded or independent non-profit organisations; and six social media platforms, described as “a global study aimed at understanding the disinformation dynamics specific to the COVID-19 crisis” that boasted a program on “democracy and the Internet” [95]. However, as critics have pointed out, the project has reduced democracy, by accelerating “the evolution of digital censorship, moving it from judging truth/untruth to a new, scarier model, openly focused on political narrative at the expense of fact (Twitter Files Tweet, dates March 18, 2023) (emphasis added).
The study found that continued efforts to identify, manage, or suppress ‘misinformation’:
  • blunts democratic and open debate
  • impairs open scientific inquiry
  • has chilling effects on normative academic principles such as the pursuit of knowledge, protection of freedom of expression, and the promotion of critical thinking
  • is a grave threat to bioethical principles such as informed consent
  • violates the dignity of human beings by placing them lower than ‘higher’ societal goals despite a long history of policy interventions implemented ‘for our own good’ or ‘for the greater good,’  that turned out to be morally disastrous
As long as the establishment vetted experts—or, rather, a cult of expertise [149]—dominate public discourse and policy practice, the loss of public trust that appears to preoccupy authorities as they attempt to regain this trust will be inevitable.

Disturbingly, this classic propaganda technique where the perpetrator claims to hold agency over the truth and then uses the arrow of “misinformation” to injure the victim is now fully entrenched in modern academic medicine. Anytime one wants to gain an advantage over another, they can accuse their opponent. This form of academic oppression can cause great harm and stifles scholarly interchange particularly on a novel topic such as the SARS-CoV-2 outbreak and genetic vaccines. ~ Dr. Peter McCullough Source:  https://petermcculloughmd.substack.com/p/scoping-review-uncovers-new-expertise?

https://vaxxed3.childrenshealthdefense.org/?utm_id=20240918  Trailer here

Click on link to find a screening near you.

There is a screening in Green Bay, two in Milwaukee, 3 in Chicago, and two in Minneapolis.

https://www.globallymealliance.org/blog/epstein-barr-virus-and-lyme-disease?

Understand the intricate relationship between Epstein-Barr Virus (EBV) and Lyme Disease through the experience of Jennifer Crystal. Learn how they coexist and impact each other in chronic illness.

Whenever I write about my chronic tick-borne illnesses Lyme disease and babesiosis, I always add “as well as chronic active Epstein-Barr virus (EBV).” This is because for me—and for many Lyme disease patients—EBV and Lyme go hand in hand. Though one is a virus and one is a bacterial infection, the two wreak havoc on the body together, and a flare of one can lead to a flare of another.

I know this now, two decades into my chronic illness journey. When I got mononucleosis, which is caused by the Epstein-Barr virus, in 2003, I had no idea that I also had underlying tick-borne infections or that the two could impact each other. Since 1997, I’d had all sorts of strange symptoms, ranging from an on-and-off-again flu to migraine headacheshypoglycemia, asthma, trembling hands, and hives. Each of these complaints had been treated individually—often brushed aside as stress or “just feeling run down”—and tick-borne illnesses were never considered. Ironically, every time the flu-like symptoms came back, I would worry that I had mono. I knew that virus could take a while to get over, and I didn’t have time to be sick. But the tests were always negative.

Until, days before I was to start a job as a Head Counselor at a summer camp in Maine, a sore throat and mounting fatigue led to a mono test that actually did come back positive. Now I really didn’t have time to be sick. I had just finished a strenuous year teaching high school English and Journalism in Colorado, had driven cross country by myself, and was supposed to spend only a few days with family in Connecticut before heading off to Maine.

The universe had other plans, but I didn’t agree with them. I knew that some people got over mono in a few weeks, while some cases took longer. I took a steroid to alleviate symptoms and speed up recovery. I rested in Connecticut for two weeks. And then, with my doctor’s permission, I set off for camp, where I so desperately wanted to be.

Camp needed me, too, as the oldest returning Head Counselor. But my being there that summer wasn’t fair to anyone—not to the campers, not to the directors, not to me. Camp needed me to give my all. I could for a short while, but then the fatigue of mono came raring back, and I found myself dragging my body to activities.

By the end of the summer, I was bedridden. By fall, I was no better. I slept twenty hours a day and developed new symptoms like burning extremities and hallucinogenic nightmares. Tests for mono remained positive, and tests for Epstein-Barr titers remained high. My doctor explained to me that people who have had mono will always test positive for Epstein-Barr virus, but that once the mono goes away, the Epstein-Barr virus titers should decrease (the same way those of us who had chicken pox as kids always carry that virus even though it’s not active). In my case, the titers remained high, which is known as chronic active Epstein-Barr virus, or chronic mono. The doctor told me it might take a couple years for me to get better.

I was devastated. I was supposed to work as a ski instructor in the Rocky Mountains that winter. That dream was shattered. Unable to support or care for myself, I had to surrender my independence and move back with my parents in Connecticut.

I blamed myself for the chronic active Epstein-Barr virus because I’d pushed my body to go to camp. While that choice probably didn’t help my recovery, there were much larger, physiological explanations for my immune system’s inability to fight off mono: Lyme disease, babesiosis, and ehrlichiosis, which my body had been harboring since an unknown tick bite while at camp in 1997.

For the first two years that I had chronic active EBV, I spent so much energy trying to convince people that I really was sick, not lazy; that EBV was a legitimate diagnosis; and that I wanted to be working, socializing, and exercising as I once had, but could barely move from bed—that I didn’t consider whether anything else might be going on in addition to EBV, rather than instead of it.

One day in 2005 while drying my hair, I noticed circular rashes on my elbows when I saw my raised arms in the mirror. I’d become so accustomed to writing symptoms off as nothing, but the naturopathic physician who’d been treating me for EBV said, “Those look suspiciously like the bullseye rashes of Lyme disease,” which he explained can show up months or years after a tick bite, in various places on the body. He said, “I’ve started to suspect you have something additional going on, like an underlying infection, because otherwise you would be getting better.” He sent me to a Lyme Literate Medical Doctor (LLMD) who ran tests that showed I indeed had three tick-borne diseases. The doctor traced these illnesses back to a red rash I’d had on my arm in 1997, just before all my symptoms began. He concluded that the tick-borne diseases had come out in full force when I got mono, because my immune system was so overtaxed that it couldn’t fight all the illnesses; instead, it was walloped by them.

Once I was adequately treated for tick-borne illness, my EBV symptoms quieted, but they still flare from time to time. Because Lyme and EBV symptoms can be so similar (flu-like symptoms, fatigue, achiness, low grade fever), sometimes it’s hard for me to tell which one is activated. Having spent so long in the throes of tick-borne disease treatment and recovery, I sometimes forget that I have EBV, too. But when symptoms flare, it’s important for me to take a step back and ask, is this Lyme, or could this be EBV? Sometimes it’s both and a slight change in a supplement can help either. Sometimes it’s EBV and I need to rest. Sometimes it’s babesiosis and I need a specific anti-malarial medication.

Scientists don’t yet know why there seems to be such a correlation between Lyme and EBV, though they have discovered EBV may be a leading cause of Multiple Sclerosis[i], a Lyme imitator. We know from emerging science and from patient experience that EBV seems to impact certain autoimmune disorders and infections, and vice-versa. Until the science catches up to the experience, the important thing is for patients with overlapping symptoms to keep both EBV and other medical conditions like Lyme disease in mind. If they’ve only been diagnosed with one, they may only be fighting half the battle.

[i] https://www.nih.gov/news-events/nih-research-matters/study-suggests-epstein-barr-virus-may-cause-multiple-sclerosis

Writer

Jennifer Crystal

Opinions expressed by contributors are their own. Jennifer Crystal is a writer and educator in Boston. Her work has appeared in local and national publications including Harvard Health Publishing and The Boston Globe. As a GLA columnist for over six years, her work on GLA.org has received mention in publications such as The New Yorker, weatherchannel.com, CQ Researcher, and ProHealth.com. Jennifer is a patient advocate who has dealt with chronic illness, including Lyme and other tick-borne infections. Her memoir, One Tick Stopped the Clock, is forthcoming from Legacy Book Press in September 2024. Ten percent of proceeds from the book will go to Global Lyme Alliance. Contact her via email below.

Email: lymewarriorjennifercrystal@gmail.com

https://www.globallymealliance.org/blog/cant-afford-a-lyme-literate-doctor-now-what?

Struggling to afford a Lyme-literate doctor? Explore options like reimbursement, payment plans, and NP/PA care. Learn how to access affordable treatment and free resources for tick-borne diseases.

The best way to be appropriately evaluated and treated for tick-borne disease is to see a Lyme Literate Medical Doctor (LLMD). These practitioners are often trained by others in the Lyme field and specialize in the complexities of diagnosistesting, and treatment of tick-borne disease. LLMDs can be pricey, however, because many of them don’t accept insurance (for information on why that is, see “Why Isn’t My Lyme Disease Treatment Covered by Insurance?”)

Perhaps you’ve been diagnosed with Lyme by your primary care doctor, but you aren’t feeling better after a short course of antibiotics, so now you’d like to see an LLMD. Maybe you have symptoms and risk factors for tick-borne disease, but your standard tests have come back negative, so you’d like to see an LLMD for a detailed clinical evaluation and specialized testing. Maybe you suspect you have a co-infection, but your primary care is only familiar with Lyme. You’ve done your homework and have found an LLMD in your area, but the price of an appointment is prohibitive.

Now what? There are several options you can explore:

Ask about reimbursement

Before just walking away due to sticker shock, ask the LLMD’s office if they offer a “super-bill” that you can submit to insurance for reimbursement. Though the office does not participate with insurance, you may be able to submit the “super-bill” yourself and get at least partial reimbursement for your out-of-pocket costs. Call your insurance company to learn how to submit a claim yourself and to find out what kind of coverage you can expect for an out-of-network provider (a provider who is not otherwise covered by your insurance network). If a claim is denied, ask your insurance company about the appeal process.

Ask about payment plans

Given the high cost of appointments, some providers may offer payment plans. Call the provider’s office to find out if that is an option.

Look into NPs and PAs

Many busy LLMDs have a Nurse Practitioner (NP) or Physician’s Assistant (PA) working in their practice. These practitioners see patients individually, under the guidance of the LLMD, who oversees the care of all patients in the practice and trains the NP or PA. NPs and PAs can order tests, make clinical evaluations, and write prescriptions. The cost for an appointment with an NP or PA is usually less than the cost for an appointment with the LLMD.

Shop Around

Different LLMDs have different appointment costs. The one in your area may be too expensive, but there could be another one just a little farther afield. Think about how far you’d be willing and able to travel to get good and affordable care. (You can search for an LLMD through GLA’s search engine.)

Advocate With Your Current Doctor

If your primary care doctor or other physician who is covered by insurance is not well-versed in Lyme disease, they may be willing to learn. Some doctors are set in their ways, but others are more open to collaborative care. Try gathering information about Lyme disease to bring and discuss with your doctor and talk together about the complexities of Lyme testing and the importance of a clinical diagnosis. You can do this with treatment protocols, too. (For more, see “How to Be an Advocate with Your Non-Lyme Doctor”.)

Explore Financial Assistance

There are several organizations that offer financial assistance for the high costs of Lyme disease appointments and/or treatment. On the Financial Assistance Resources page, GLA maintains a list of organizations that help with treatment access, reimbursement, and federal and state assistance programs.

Join a Support Group

Lyme disease support groups can offer more than emotional support, which is very important; members may also be able to recommend doctors or financial assistance resources. Groups come in different formats, from formal in-person meetings, to small in-person or remote discussions, to online Facebook groups. To find a support group, check out GLA’s Support Groups page.

Get One-on-One Support

Through the Peer-to-Peer Mentor Program, GLA can connect you with a fellow Lyme disease patient, or a knowledgeable caregiver of one, who can offer you one-on-one support. The mentor may have advice for you on finding or affording an LLMD. This program is free.

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For more:

https://www.midwesterndoctor.com/p/the-remarkable-history-and-safety?

The Remarkable History and Safety of DMSO

Please share your experiences with DMSO with the readers here!

Note: this article has two primary purposes. First, it is a compilation of all the existing safety and toxicology data on DMSO for anyone planning to utilize it in a clinical setting. Second, it is meant to serve as a place to collect reader’s (often incredible) experiences with DMSO so individuals who are considering using DMSO can have testimonials to juxtapose with the wealth of data I am gradually presenting on DMSO.

My time in the medical field has led me to accept many medical practices are adopted because of politics or economics rather than because existing evidence shows they work. Nonetheless, certain instances of this happening still astound me to this day, particularly the blacklisting of DMSO (dimethyl sulfoxide) as:

  • This simple chemical is incredibly safe and effective and treats a wide range of challenging medical conditions that impact millions that still lack an effective therapy (outside of DMSO).
  • Because of its efficacy, once discovered, it took the country by storm, resulting in millions using it, the scientific community getting behind it and publishing thousands of studies on DMSO, numerous pharmaceutical companies making large investments to bring it market, professional athletes promoting it, numerous governors, congressional representatives and senators (on behalf of both themselves and their constituents) pressuring the FDA to give it a fair chance for decades and state legislatures independently legalizing it because the federal government would not.
  • Many approved pharmaceutical products take advantage of DMSO’s properties to work (e.g., in those products, DMSO is often classified as an inert “vehicle”). Similarly, DMSO is FDA approved for one condition (interstitial cystitis) and is approved for a wide variety of veterinary uses (e.g., the same conditions it treats in humans).
  • Over the past 40 years, more than 10,000 articles on the biological implications and 30,000 articles on the chemistry of DMSO have appeared in the scientific literature—much of which, as I’ve shown here is remarkably compelling and paradigm shifting in healthcare.
  • Yet, despite all of that, DMSO was effectively erased from history. It is now widely seen as an unproven and dangerous therapy, and even within the natural health field, most people do not know it exists.  (See link for article)

https://www.midwesterndoctor.com/p/dmso-could-save-millions-from-brain?

DMSO Could Save Millions From Brain and Spinal Injury

The decades of evidence showing DMSO revolutionizes the care of many “untreatable” circulatory and neurologic conditions.

Story at a Glance:

  • DMSO is a remarkably safe chemical that protects cells from otherwise fatal stressors (e.g., freezing, burning, shockwaves, ischemia). Since the heart, brain, and spinal cord are particularly vulnerable to injury, DMSO can produce miraculous results for those conditions.
  • The usage of DMSO completely transforms the management of strokes (including brain bleeds), heart attacks, and spinal cord injuries. As I will show here, had the FDA not sabotaged DMSO’s adoption, in addition to countless lives being saved, millions could have been protected from a lifetime of disability or paralysis.
  • DMSO has many other remarkable properties. For example, it stabilizes proteins, and thus treats many challenging protein disorders (e.g., amyloidosis and numerous genetic disorders).
  • Many conditions DMSO treats are typically considered to be incurable. In this article, I will focus on DMSO’s remarkable utility for the conditions that respond best to intravenous DMSO (e.g., a variety of circulatory disorders like varicose veins or Raynaud’s) and complex neurological disorders (e.g., Down’s Syndrome, Developmental Delay, ALS, Alzheimer’s, Parkinson’s), along with how to administer IV DMSO and DMSO stroke protocols.

If I were stranded on a desert island or knew the world was ending and I could only bring a few therapies with me, one of them, without a doubt, would be DMSO. This is because:

  • It treats a wide range of severe illnesses which are often otherwise incurable and frequently fatal or lead to a lifetime of permanent disability.
  • It effectively treats acute injuries and rehabilitates chronic musculoskeletal disorders (e.g., arthritis). Because of this, it’s one of the best “pain medicines” out there and has allowed many to get their lives back.
  • It has a variety of unique properties that open up a completely different dimension to how medicine can be practiced.
  • It is one of the safest medically active substances in existence.

Remarkably, in the 1960s, this was recognized and DMSO took the nation by storm (e.g., people everywhere were clamoring for it, gas stations would often advertise they sold it, and tens of thousands of research studies were conducted by enthusiastic scientists around the globe). Now however, outside of it being a laboratory chemical or an alternative therapy some people use for joint pain, few are even aware of DMSO’s existence.

This was due to the FDA waging a multi-decade long war against DMSO (despite widespread outcry from Congress and the public), which I believe was arguably the worst thing the FDA has ever done to the country.

Since I am uniquely positioned to present many of the forgotten sides of medicine to the public, I’ve long felt the DMSO story needs to be told. Simultaneously however, since there is a wealth of data on this topic, I wanted to ensure I honored the importance of this subject and accurately present it. For this reason, I’ve spent the last three months reading and arranging thousands of pages of literature. Since there is so much to say on this topic, this series will be broken into a few parts. In the first installment, I will cover the key properties of DMSO and the challenging conditions where it provides the most profound benefits. (See link for article & note there will be another part to it explaining where to get it, dosing, and non-IV protocols)

https://www.midwesterndoctor.com/p/dmso-is-a-miraculous-therapy-for

DMSO is a Miraculous Therapy for Chronic Pain and Musculoskeletal Injuries

The decades of evidence DMSO revolutionizes the practice of medicine

Story at a Glance:

•The standard approach for treating pain and musculoskeletal injuries typically involves giving NSAIDs (e.g., ibuprofen), and in more severe cases, opioids. Unfortunately, these drugs are extremely dangerous (e.g., each one kills tens of thousands of people each year), but nonetheless have remained the standard of care for decades.

DMSO is a remarkably effective pain-killing agent, in many cases allowing individuals who’d been disabled for years by their pain (e.g., a failed spine surgery or severe arthritis—DMSO’s most popular use) to get their lives back. Furthermore, it can treat many types of pain other therapies do not work on (e.g., complex regional pain syndrome).

DMSO is a highly effective therapy for healing wounds and creating healthy scars, making it particularly helpful for recovering from surgery.

DMSO is incredibly effective for healing a wide range of acute and chronic musculoskeletal injuries (e.g., arthritis, headaches, neck and back strains, restless leg syndrome, sprained ankles, trigeminal neuralgia and numerous traumatic injuries). It typically has an 80-90% success rate and often has an instant and dramatic effect. This use was particularly popular with professional athletes, as it allowed many of them to quickly return to the field rather than be out for the rest of the season.

•In this article, I will review the scientific literature that explains how DMSO provides pain relief and healing, the vast body of evidence (comprising of thousands of patients) showing it indeed does, and our preferred DMSO home treatment protocols for pain, arthritis, and musculoskeletal injury (along with the best sources for procuring DMSO).  (See link for article)

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https://www.midwesterndoctor.com/p/how-dmso-treats-incurable-autoimmune

How DMSO Treats “Incurable” Autoimmune and Contractile Disorders

The decades of research that could have prevented an immense amount of human suffering

Article excerpts:

DMSO is a powerful (but safe) anti-inflammatory agent that is often extremely helpful for autoimmune conditions. For example, it’s frequently used to treat asthma, inflammatory bowel diseases (e.g., ulcerative colitis and irritable bowel syndrome), interstitial cystitis (painful bladder syndrome), ITP, lupus, multiple sclerosis, myasthenia gravis, scleroderma, Sjogren’s syndrome, and uveitis.

  • DMSO is also remarkably effective at stabilizing and refolding proteins. This allows it to treat a variety of “untreatable” genetic disorders, and conditions characterized by the abnormal accumulation of misfolded proteins in the body (e.g., amyloidosis) or chronic deposits of excessive contractile collagen (e.g., surgical scars, abdominal adhesions, Dupuytren’s contractures, and Peyronie’s disease). Two of the most dramatic examples of this are scleroderma and fibrodysplasia ossificans progressiva—both “untreatable” conditions where DMSO can provide truly lifesaving benefits.
  • In this article, I will present the wealth of evidence substantiating each of those uses, share my theory on how the unusual antimicrobial properties of DMSO explain some of these benefits, and present DMSO treatment protocols for many of those disorders. Additionally, since many readers requested it, I put together a simplified guide on how to use DMSO orally or topically.

One of DMSO’s remarkable properties is its ability to function as a chemical chaperone and stabilize the three dimensional structure proteins assemble (fold) themselves into. This is important as many complex illnesses (e.g., many genetic disorders) result from misfolded proteins and presently can only be (ineffectively) managed with expensive drugs that aim to normalize the function of the abnormal proteins.

In turn, a few drugs have been developed to refold misfolded proteins, and to my knowledge, the most helpful ones on the market were the ones developed to treat cystic fibrosis (after the Cystic Fibrosis Foundation gave 150 million to bring these medications to market which currently are priced at roughly 300,000.00 a year). However, unlike the existing pharmaceutical chaperones (which are very specific to the misfolded protein), DMSO’s effect is remarkably universal.

Studies have shown DMSO can improve the functionality of the dysfunctional proteins that are seen in genetic disorders like cystic fibrosis,1 hereditary nephrogenic diabetes insipidus,1,2 Machado-Joseph disease,1 Niemann–Pick disease,1,2,3,4,5,6 and a defective protein that causes motor disorders and early death in mice.1 Likewise, it can also treat a variety of complex diseases which result from misfolded proteins damaging surrounding tissue.  (See link for article.  He gives a study in which DMSO was used to treat Alzheimer’s, contractures, Peyronie’s disease, FOP, Scleroderma, & other autoimmune issues like lupus, asthma, IT, MS IBD, MG,& Sjogren’s syndrome) .  Also many patient testimonials are given, including the improvement of Downs Syndrome.)

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**Comment**

Some of the most thorough articles on DMSO yet.  I highly recommend making a pdf of them for your own usage.  This safe treatment has been attacked by the FDA so it may be nearly impossible to get good information on it in the future.

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