LymeScience

Grassroots #SciComm + #PatientAdvocacy + #ConsumerProtection Because patients deserve better

No AI on this account

[LymeScience @LymeScience]

The wonderful Brooke Eby has ALS and is sick of people trying to recruit her into the chronic Lyme scam.

The chronic Lyme cult aggressively targets people with ALS, MS, Parkinson's, and Alzheimer's. None of these have any connection to real #Lyme disease.

[Brooke Eby @limpbroozkit]

it feels like an mlm at this point

[Adam Gaffney @awgaffney]

Appreciate Paul writing on this — only thing I’ve seen on the fact that RFK Jr. is now sending people through the HHS website to chronic Lyme quacks

[LymeScience @LymeScience]

ILADS is tied to the anti-vax autism quack group MAPS.

ILADS leaders Joseph Jemsek, MD and Phillip DeMio, MD recently had their licenses revoked after mistreatment of child/adults patients, including those with autism.

RFK Jr. feeds people to grifters:

https://t.co/jUI5CzRZGi

[LymeScience @LymeScience]

There was a recent Ask Me Anything on Reddit from a victim of notorious child abuser and ILADS leader Charles Ray Jones, MD.

Our Rogues Gallery has license revocations of other ILADS leaders who mistreated children, such as Drs. Phillip DeMio, Leila Zackrison, & Joseph Jemsek.

[LymeScience @LymeScience]

RFK Jr's HHS partnered with the quack group ILADS.

Our Rogues Gallery has new or updated entries for these ILADS-associated predators:

Connie Casebolt Carver, MD
Serafino Sauro, MD
Crystal Barnwell, MD
Chitra Bhakta, MD
Dean Silver, MD
R.E.D. Laboratories (IgeneX affiliate)

[Alan Levinovitz @AlanLevinovitz]

that's exactly my position in this prior piece for WIRED, in which I cover exploitative and unscientific "treatments" for autism, ranging from dietary interventions to seriously dangerous things like chelation and bleach enemas

one of the points I keep trying to make in the LC space, though, is that the mind-body stuff simply DOES NOT get the same treatment as, say, cranio-cervical surgeries (!!!!) as an intervention for ME/CFS, or hEDS (which one ME/CFS advocate, Edwards, refers to as "being a bit bendy," I'd love to see him write an op-ed defending that! lol)

anyways, that's a wildly dangerous surgery, surely as dangerous as a mind-body therapy, but at best the skepticism is gentle, there isn't a mass movement trying to destroy the exploitative neurosurgeons offering these extremely expensive surgeries, or hounding the patients who get them, or who claim improvements from them

and that, I argue, is because such surgeries (and such recovery stories) don't threaten the legitimacy of the illness

https://t.co/08kjhcJ3XI

[Paul Sax @PaulSaxMD]

Given where I practice medicine, the recent attention given by HHS to Lyme and tick-related infections is most welcome.

But I worry deeply about the company they keep in their announcement. @LymeScience @awgaffney
Link ⬇️

[LymeScience @LymeScience]

@DisabledDoctor Thanks for speaking up.

[LymeScience @LymeScience]

👇
https://t.co/HX16vcEkTN

[LymeScience @LymeScience]

Our basic statement on PASC ("Long COVID"):

• Most comparisons between Lyme & COVID are flawed.

• We need to rigorously study it while avoiding anchoring & selection biases.

• Healthcare systems should better handle unexplained symptoms, compassionately and comprehensively.

[LymeScience @LymeScience]

Sounds about right - Patients with post-covid symptoms deserve better

[Alan Levinovitz @AlanLevinovitz]

I cannot tell you how many times I would take a long Covid study cited as incredible evidence of something (a genetic study, say, or an antibody study), bring it to a pre-eminent expert in the field who wasn't deeply embedded in the LC world, ask what they thought of the study, and have them say, "ummmm, this is at best a hypothesis generation, and at worst just garbage science"

[LymeScience @LymeScience]

Another former ILADS president Steven Phillips, MD has been grifting for decades.

His Wakefield-level scandal was cited in the paper "Antiscience and ethical concerns associated with advocacy of Lyme disease".

https://t.co/ex1h5lUsSf
https://t.co/0h1Cnah9w1

[LymeScience @LymeScience]

Wakefield-level cult leader and former ILADS president Steven Phillips, MD still falsely claims that MS is "Lyme+"

It's been 25+ years since he filed for a patent on a fantastical substance he claimed could culture spirochetes from "chronic Lyme" & MS patients.

[LymeScience @LymeScience]

There was a recent Ask Me Anything on Reddit from a victim of notorious child abuser and ILADS leader Charles Ray Jones, MD.

Our Rogues Gallery has license revocations of other ILADS leaders who mistreated children, such as Drs. Phillip DeMio, Leila Zackrison, & Joseph Jemsek.

[LymeScience @LymeScience]

@Dr_Haridopolos Questions: Why promote the false claim that HHS hadn't fully recognized Lyme disease?

Have you seen the evidence that "chronic Lyme" is an abusive cult? Victims have spoken out!

LymeScience has pages on Red Flags, Medical Child Abuse, victim stories, good journalism, and more.

[LymeScience @LymeScience]

The abhorrent behavior of the leaders of the chronic Lyme cult has been well-documented, including in a 2007 Forbes exposé and a 2011 review.

Substantial suffering and deaths have resulted from chronic Lyme health fraud.

https://t.co/mlYsxqV5mF

https://t.co/0h1Cnah9w1

[LymeScience @LymeScience]

Wakefield-level cult leader and former ILADS president Steven Phillips, MD still falsely claims that MS is "Lyme+"

It's been 25+ years since he filed for a patent on a fantastical substance he claimed could culture spirochetes from "chronic Lyme" & MS patients.

[LymeScience @LymeScience]

ILADS leader Steven Phillips, MD has been a quack since the 90s.

In a Wakefield-level scandal, he claimed that he invented a magical substance that could easily culture spirochetes from "chronic Lyme" & MS patients, because he claims "Lyme+" causes MS.

https://t.co/DCHxXUwodz

[LymeScience @LymeScience]

@garthcbrown Appreciate your comments.

If RFK Jr were serious about reducing complications of disseminated #Lyme disease, then vaccines and making sure people have affordable healthcare are good ways to do it.

Instead RFK Jr is promoting mirages while reducing access to healthcare/vaccines.

[LymeScience @LymeScience]

[Note: Quack marketing terms include integrative, functional, naturopathic, alternative, and "Lyme literate"]

Citations Needed: The curious “science” of integrative medicine

https://t.co/4ljnsIX4yV

[LymeScience @LymeScience]

Dr. Chad Hayes went to an "integrative medicine" conference featuring anti-vaxxers and quacks.

This is modern health fraud: a buffet of pseudoscientific grifts, where the only limitations are the human imagination and the money in your bank account (or what you can crowdfund)

[LymeScience @LymeScience]

@EdCara4 @awgaffney And now Dr. Stephanie Haridopolos (who RFK Jr. gave many of the Surgeon General duties) has posted a clearly false headline that RFK Jr is the "First HHS Secretary to Fully Recognize Lyme Disease".

We asked Dr. Haridopolos why she would promote such an obviously false claim.