Frank Parlato
Clare Bronfman’s civil lawyer, Craig Martin, has responded to attorney Neil Glazer’s Plaintiff’s letter to Judge Eric Komitee in the matter of Edmondson et al v. Raniere et al.
Glazer wants to keep Bronfman in every aspect of a civil lawsuit with 81 plaintiffs suing on various and disparate issues connected to NXIVM.
Martin wants to get Bronfman out of any claims that do not directly relate to her actions, such as sex trafficking allegations.
Glazer’s argument is that Bronfman, along with her sister, Sara Bronfman-Igtet, were responsible for funding NXIVM, enabling it to thrive and do its foul deeds – and that the sisters were aware of the invidious nature of the organization.
All of the 81 plaintiffs were former NXIVM members, some quite high ranking.
The 11 defendants include Keith Raniere and the two Bronfman sisters, along with Nancy Salzman. Allison Mack, Lauren Salzman, Kathy Russell, Dr. Brandon Porter, Karen Unterreiner, Dr. Danielle Roberts and Nicki Clyne. With the exception of the Bronfman sisters, the other defendants have little to no assets.
Martin, writing to the judge, argued that many of the plaintiffs changed their minds about NXIVM.
He wrote, “Plaintiffs’ views of NXIVM today are an extreme departure from their long-time devotion to an organization they once participated in and profited from for many years. Indeed, what makes them plaintiffs is simply their change of heart—otherwise perhaps many of the Plaintiffs might have found themselves Defendants in this action.”
Martin also says Glazer’s First Amended Complaint:
- is incomprehensible—it is unwieldly in length and scope while simultaneously failing to allege facts sufficient to support Plaintiffs’ claims…
- makes allegations against “Defendants” without specifying which Defendants are included…
- alleges conduct related to “Plaintiffs” without specifying which Plaintiffs are included…
- includes Ms. C. Bronfman in claims unrelated to the… allegations Plaintiffs make about her (and, in particular, Plaintiffs include Ms. C. Bronfman in their sex-trafficking claims without alleging facts suggesting that Ms. C. Bronfman was even aware of any of Plaintiffs’ sexual activities, much less involved in them)…
- does not identify the “enterprise” that forms the basis of their RICO claims…
- ignores what constitutes an abuse of legal process…
- brings claims that are time-barred…
- despite its length,…fails to distinguish which Defendant allegedly did what, when, and to whom, or include sufficient facts to put Ms. C. Bronfman on notice of what Plaintiffs are specifically alleging against her…
- failed to establish that Ms. C. Bronfman knew about or agreed to any illegal scheme…does not include any such facts as to what actions Plaintiffs allege she took…
- fails to allege any specific actions by Ms. C. Bronfman showing that she knew about, agreed to facilitate, or took action with the purpose of pursuing the same criminal objectives as her alleged co-conspirators.
Martin further argues that the lawsuit improperly alleges Bronfman’s “deception and intimidation” tactics and that “with each iteration of Plaintiffs’ narrative, Ms. C. Bronfman and Ms. S. Bronfman are assigned greater decision-making positions.”
“Plaintiffs’ new allegations of intimidation and deception thus only further add to the morass of baseless accusations,” Martin wrote.
He points out that, despite Glazer’s letter, nowhere in the complaint “do Plaintiffs allege that Ms. C. Bronfman… engaged in ‘conniving and outright lies to the Dalai Lama … to promote the falsehood to persuade people to ignore negative media reports.’”
Martin also points out that the complaint fails to allege that Bronfman targeted Plaintiff Toni Natalie.
The big argument perhaps at this juncture is whether or not Bronfman will remain a plaintiff on the sex-based schemes of the lawsuit. Martin wants the court to divide the lawsuit into two —one addressing Plaintiffs’ sex-based claims and one addressing their consumer-based claims.
Glazer argued that Bronfman should remain a defendant in all claims since “[n]one of these harmful acts were distinct.”
Martin argues that the sex trafficking claims are not “inextricably connected to their consumer-based claims.”
He points out that the majority of plaintiffs —at least 46— “make no allegations beyond enrollment in NXIVM. These Plaintiffs cannot plausibly state a claim for sex trafficking. Likewise, Plaintiffs have not alleged facts indicating involvement in or knowledge of sex-based claims for several Defendants, including Ms. C. Bronfman, and thus have no plausible claim against these Defendants. Bifurcation of the case therefore makes sense to avoid confusion of the issues and the evidence.”
Will the judge divide the case into two parts – sex and consumer fraud?
This ruling will be well worth looking out for and may make or break the case as it pertains to the Bronfmans, who after all, are the only reason for having this lawsuit since they are the only ones with any money to pay the plaintiffs with – and this lawsuit is about money.
***
Esther Carlson Selling Life Insurance
It is nice to know there can be life after NXIVM.
Former green sash proctor and longtime NXIVM coach, Esther Carlson, is now selling life insurance for Symmetry, according to a website for the Purdy Financial Group.
In fact, she is a Regional Agency Director. Apparently, Symmetry is a multilevel marketing company and Carlson has a downline that may include other former NXIVM members such as Michele Hatchette, Justin Elliot, Danielle Roberts and Brandon Porter.
Carlson writes on her page: “My favorite thing about building my agency is seeing other people who have worked so hard and built so much find a company that appreciates them and their gifts. Symmetry was built by people that are looking out for agents’ futures – the entire system is set up to take care of the builder, the care-giver, and the hard worker. You just need to stay focused and be coachable.
“What I look forward to in the future with Symmetry is spending more time with the new friends I am fortunate to have met and worked with so far.
“It’s so refreshing to be part of a team that holds out the best for you. What a cool job to work with people that like what you like and want to work for it. ‘Have fun and get stuff done!’”
On the page also is a four-minute video of Esther where she describes her work and the benefit of having her own business, pointing out that she had a hand in building businesses in the past which she did not reap permanent financial benefit from since they were not hers.
She is referring to NXIVM and some of its offshoots, though she does not mention the companies by name. She does say she lost her job, however. NXIVM closed its doors in 2018.
Carlson was the longtime companion of the late James Del Negro who passed away in Mexico earlier this year. Del Negro also sold term insurance for Symmetry. Carlson says she is living in Saratoga Florida and helps take care of her elderly mother.
From what I understand, hard-working salespeople can make a good living selling term insurance and with a downline where commissions roll upwards. I would not be surprised if Esther can build her business into a six-figure annual income range.
Much of the work concerns cold-calls to people who might want insurance and part of the work is to recruit salespeople who will do the same and establish a downline. The model is not dissimilar to NXIVM, except the product is term life insurance instead of learning the teachings of Keith Raniere.
***
Mexican Investigation of NXIVM Finances
The UIF is a Mexican agency focused on detecting and preventing financial crimes such as money laundering and terrorist financing.
The investigation reportedly is looking into money flowing from Mexico to the United States to finance Nxivm, which had branches in Mexico City, Guadalajara, Guanajuato and Monterrey.
El Herald reports, “So far there is only an estimate that sets at about 50 million dollars a year what ESP earned from its courses, but the investigation of the US justice system recorded the shipment of carloads of cash from Monterrey, Nuevo Leon to Albany, New York, in overland trips, which would be more difficult to trace.”
The report names prominent NXIVM Mexican member Emiliano Salinas Occeli, son of former President Carlos Salinas de Gortari, who operated the Nxivm franchise in Mexico, “whose headquarters were located in a discreet building in Lomas de Chapultepec, very close to Reforma Avenue and the Periferico” and his partner, Alejandro Betancourt – and adds, “both are also partners in Prorsus Capital, an investment fund company under which the firm MoneyBack is grouped, beneficiary of a Treasury concession for tax refunds to international tourists justified to avoid double taxation.”
The report further mentions that the leader of the Morena political party, Mario Delgado, took ESP courses as did the failed Morenista candidate for governor in Nuevo Leon, Clara Luz Flores Carrales.
“There was no way to clean up the image of Flores Carrales…” El Herald wrote, but was more hopeful towards “the spouse of Emiliano Salinas, the actress Ludwika Paleta, [who] has begun a repositioning strategy in social networks and increased her participation in different film productions.”
I would be surprised if NXIVM earned $50 million per year on the sale of its courses. NXIVM claimed it had about 17,000 total students over 20 years. Some took more than one class per year. Most took only one or two classes. If they even had two thousand students taking classes at $2,000 per average class that would only amount to about $4 million annually.
If more than half of the revenues came from Mexico, then it is possible that over the years $10 million or more was laundered into the USA.
It will be hard to prove since my sources say the money was in cash and often on private airplanes. The cash was the fees for the courses paid for by various students.
Absent witnesses who will give details of how it was bundled and stored, it seems hard to imagine the UIF can make much of a case. Perhaps I am wrong.
As a hint to them, it seems likely that Nancy Salzman stored a fair amount of the cash at her house at 21 Oregon Trial. The FBI found $520,000 in cash stored in various places in her house when they raided it in 2018.
There may be more money stashed elsewhere in other properties.
Frank Parlato is an investigative journalist, media strategist, publisher, and legal consultant.
Please leave a comment: Your opinion is important to us!
MLM LIFE INSURANCE! What a concept. Say, Esther, who might be the beneficiary on your late, longtime lover, Jimmy Del Negro’s policy? Was there ‘dental plan’ coverage for the past NXIVM, SOP Pres. in Mexico? And, btw, how’s your son, Robbie? Got him covered, too?
StevenJ: “Amazing to hear Penza talk about this case. She absolutely destroys the dead-enders. She advises not to discuss with those people because it is a waste of time and energy.
Repeat: Don’t waste time discussing anything with dead-enders or their trolling hangers-on.
Where do you find this at?
It is quite obvious that this lawsuit is not about holding the defendants responsible, but obtaining as much money as possible. Essentially, this is about an ambulance chaser out for a payday.
You mistyped. What you intended to say was: It is quite obvious that this lawsuit is about holding the defendants responsible by obtaining as much money as possible.
If that were true, all the defendants would be the target, not just the two with money.
Your comment makes no sense. The only thing you can get in a civil lawsuit is money – there is no other way to “hold the defendants responsible” in a civil court. Why would you bother spending time to get a money judgment against people who are broke and cannot pay? In what way does that “hold them responsible?”
This is my point exactly. The lawyer is not interested in the people without money. He is trying to tie the Bronfman’s to everything to maximize the payout. Two people are to be held responsible for the actions of all eleven? That makes no sense.
This is about making money, which is good news for the nine that are broke. Once a settlement is reached, they are in the clear financially.
Criminal penalties hold people responsible.
Untrue.
People (Taylor Swift famously being one) frequently sue for one dollar.
People also sue and give their entire settlement to a charity, cause, school, victim’s fund, hospital, scholarship fund, etc.
There are as many reasons to sue civilly as there are people willing to sue.
But yeah, money usually does rule.
Defendants in a lawsuit are not “targets”?
Hahahaha.
There’s some cultwashed silly word play if I’ve ever seen it.
Seriously? The other nine are there to pad the lawsuit. Wow, people just cannot think here can they?
Shut up, Nicki.
Ding ding ding ding!
I bet there are a whole lot of reasons for the defendants to sue the Bronfmans: round ones, yellow ones. And when you hit them against a rock they go “zinggggg”.
Ding dong is more like it.
Did you say RingDing?
Exactly
Wait a second, Anonymous!
Are you saying the defendants are being targeted because of money?
Or
That the defendants are being targeted on account of money?
Disagree. The only way to permanently dismantle NXIVM is the civil case because Clare has made it clear based on her statements at her sentencing and the fact that she’s still financially supporting Raniere that she will not stop even after she’s no longer incarcerated. She has the resources to wait out everyone. It is prudent to remind her that people have not forgotten about what damage her vast wealth has done and there are consequences beyond criminal proceedings.
The Willkie of Willkie, Farr and Gallagher is Wendell Willkie who was the 1940 Republican candidate for President.
Willkie was born in Indiana but became a New York-based lawyer and the executive of a major electric utility named Commonwealth and Southern.
Willkie died in 1944 but his law firm lives on.
As usual, Claire Bronfman hires some legal heavy hitters.
“In January 1940, Harold J. Gallagher, one of the most influential partners in the history of the firm,[8] extended an offer to Wendell Willkie to join the firm then known as Miller, Boston & Owen. This was several months before Willkie received the Republican nomination for president.[11] After losing the Presidential election to the incumbent FDR, Willkie joined the firm and became a partner in 1941.[12] The firm’s name was changed a year later to Willkie, Owen, Otis & Bailly, and later to Willkie, Owen, Otis, Farr & Gallagher.[13] Willkie later became F.D.R.’s personal envoy to many countries, promoting the Lend-Lease program. He later wrote a book about his travels entitled One World, a plea for global cooperation and peacekeeping.[14] In 1947, his estate’s interest in the law firm was valued at $125,000 ($1,449,000 in current dollar terms).[15] That year, the customary hourly rate of a Willkie partner was $50 ($600 in current dollar terms) an hour.[16]”
https://en.wikipedia.org/wiki/Willkie_Farr_%26_Gallagher
Whatever happened to Patriot King? Did Frank ban him? I really hope Frank didn’t, I loved that guy he was hilarious. Frank, please set him free if you’re censoring him. Come on, dude, let us have some comedy and fun. Stop policing everybody.
I permit Patriot King to post his comments. I asked him to stop using the word n—-r – except when referring to me. He can call me a n—–r. But I don’t want him calling others that name.
Yeah, but he said that there was a bunch of his comments that you haven’t posted yet? You indicated he would be banned if he said anything against other races at all. But that’s his character. Can you just let him say the n-word in general if he doesn’t direct to somebody on here? Like if he says “I hate niggers?” That’s generalized. Please, Frank, let the guy have his freedom of speech. He’s entertaining and funny as hell.
Frank,
Can’t you just let him say “n——r” if he generalized it? Like if he says “I hate n—-s!”? Come on Frank. That’s apart of his character. Don’t be like this. Let us have some fun. He has freedom of speech. He’s funny as hell. Please just let him say what he wants and don’t try to hinder his free speech or control it. Just chill out with the Orwellian shit and see this is just comedy. Please?!
You have a good point.
So does that mean you will let him go uncensored?
Frank fears Patriot King. Patriot King will end tyranny. Patriot King will kick the shit out of the Hun that has invaded our fine country. Patriot King will gladly share his mother for $500! And for an extra $20, he’ll throw in the whole family. Patrick King is a true capitalist – not a commie pinko!
Patriot God would never sell his mother for any kind of money; nor would he do that for any member of his family like some nigger selling his own for slavery just like they did before! You ousted yourself as a nigger for saying something that dumb!
Nobody likes you, maggot! Stop shit-talking Patriot God and stop sounding like a nigger with all of your goddamn degenerate “yo momma” jokes and shut the fuck up!
THAT’S AN ORDER, NIGGER!
Frank, you better give Patriot God his free speech back before the patriots blow this god-forsaken niggerized website back to the depths of nigger hell!
THAT’S AN ORDER, NIGGER!
By popular request, I am permitting Patriot King to return, despite his using the word ‘nigger” not only to describe me but almost everyone else who does not do what he says.
Alright, nigger! Now that you got a fragment of your walnut-sized God-forsaken nigger brain somewhat back in place about Patriot God’s Constitutional *RIGHTS*, get to posting all of his comments on all the articles that your unworthy to use a computer dumb ass has been neglecting to do for weeks!
THAT’S AN ORDER NIGGER!!!!!!!
The name of the game is *KEEP UP*! NOT “Catch Up”, NIGGER!
THAT’S AN ORDER NIGGER!!!!!!!
NOW MAKE YOUR UNEVOLVED SPECIES AS SOMEWHAT USEFUL AS YOU CAN BE OTHER THAN DEAD AND GET TO POSTING!!!!!!!! NOW!!!!!!!!!!
THAT’S ORDER NIGGER!!!!!!
MOVE IT NIGGER!!!!!!! ON THE DOUBLE NIGGER!!!!!!!!
NOW NIGGER!!!!!!!! GET MOVING!!!!!!!!
THAT’S AN ORDER NIGGER!!!!!!!
I got the message Cracker.
Hey Colonel, I’m LMAO at your orders.
Yo mama is so fat, when she takes a sh*t she has to search for her own asshole.
Court Martial me for insubordination!
—Stop degenerate “yo momma” jokes!
👍🏼
Yo momma, so nasty, she’s had more men in her, than a jail cell or a VA hospital.
Yo momma, so nasty, she brought crabs, to the aquarium.
Yo momma such a ho, her legs are like a church…..They’re always open to the public and love to have their [sic] coffers filled.
You’re mommy so nasty, she like a ship at sea. A ton of seaman and in need of good bilging.
Hi Patriot King!
Yo mamma, is such a ho, when she was born, the doctor spanked her, and she screamed, “Pull my hair”.
Absolute must listen to radio. Moira Penza on “A Little Bit Culty” Podcast with Sarah and Nippy.
https://podcasts.apple.com/us/podcast/a-little-bit-culty/id1553334816?i=1000542678976
https://www.instagram.com/p/CWg0M6rJBfT/
With the way she speaks, it is clear as to why she is such a rockstar attorney and keith stood no fucking chance.
I hung on every word. It exceeded every expectation and they take on nearly every topic that you’d want from an interview with someone as potent as Moira Penza. This includes Moira’s thoughts on the previous failures of law enforcement to go after NXIVM, possible payoffs by Clare Bronfman, and just how this could go on for so long.
She even takes jabs at the loyalists that are still trying to defend keith and it is fucking awesome. There’s plenty of new info too that I hadn’t heard, like a story about how they showed up at her office.
Completely riveting. They cover far too many topics for me to summarize here. You need to listen to it.
Transcript?
Thanks for the link. Just as the hosts did, I really appreciated Moira Penza pointing out the “no ultimate victims” stance as a set up to abuse people, and the irony/hypocrisy of KR’s and company’s vociferous complaints of victimhood now. It was worth the listen.
Totally agree. Amazing to hear Penza talk about this case. She absolutely destroys the dead-enders. She advises not to discuss with those people because it is a waste of time and energy. Like talking to 9/11 deniers or conspiracy theory proclaimers or people who are anti-science (her examples!). A waste of time: FR readers take notice.
Edmonson said she recently was on the phone with the dead-enders because she heard they were on the brink of breaking free and wanted to help, only to get “but don’t you think due proces is important?” questions fired at her so she said she hung up on them.
Moira said this case is closed and if there was anyone who had due process in a case, it was Keith with his array of expensive lawyers.
Did she explain the authority she used as a federal prosecutor to call Marc Elliot’s attorney and threaten him, saying that Marc will end up in jail if he pursues his right to the freedom of speech, and to pursue his career as a public speaker?
I’d love to know what legal powers she thought she had as a federal prosecutor to make such a threat.
I’ll listen and see if she reveals this!
Thanks for the heads up, Ice-Nine!
Alanzo
Marc Elliiot’s “career as a public speaker”
LOL
Come out of the closet, Marc.
Hi Alanzo, I’m still looking for clarity on whether someone that deprograms someone else from a cult is an anticultist. Can you provide your perspective?
Alan,
You claim, indoctrination or brainwashing inside of a cult isn’t possible; How come every cult practices the same type of tactics?
Cult Tactics:
• Love bombing
• Thought reform
• THEY ISOLATE YOU
• Induced dependency
• Impenetrable logic
• REINFORCE WITH RITUAL
• The leader may punish doubt or insubordination with physical or emotional trauma, exactly like DOS or Sea Org.
• Bootcamp like structure
• Psychological/Enlightenment — offering expensive “enlightenment” workshops;
• THEY TAP INTO YOUR WEAKNESSES
• THEY PROVIDE HOPE AND SOLUTIONS
Lastly:
What ultimately sells a person on the idea of being part of a cult is the notion that they have been uniquely chosen for a cause, that they are part of an important revolution
There is no way you can defend anything that I’m saying Aloonzo, at least not logically or rationally. Sorry, old chum, you lose.
Read More: https://www.grunge.com/47584/cults-trick-believing/?utm_campaign=clip
https://bigthink.com/the-present/four-cult-recruitment-techniques/
https://statenews.com/article/2020/10/a-look-behind-the-curtain-of-cult-psychology?ct=content_open&cv=cbox_latest
\\\\\\\\\
NXIVM was always a poor man’s Scientology. Down to the inner cults, cults within cults are the same: e.g., DOS and Sea Org.
/////////////
“NXIVM was always a poor man’s Scientology.”
During a Q&A session with glorious Vanguard, I once asked him a direct question – “What do you think about Scientology?” He lied and said he didn’t know much about it. But, if he had to guess, he’d think there are probably some good things in it.
NutJob-
That’s a good story.
Thanks for sharing it!
I remember when Heidi Hutchinson talked about purloining Scientology course material.
Alanzo,
Come on, Alanzo, where’s your rebuttal, counter points, refutation of facts, or disproof?
Not very ‘Greek Philosopher’ of you to run away from intellectual discourse.
You are like Shadowstate1958. You slither way when reason and objective fact tear down the facade of your false beliefs.
My, Gadfly, Alanzo, where art thou?
******
Here are the six types of questions Socrates posed:
Clarifying concepts. …
Probing assumptions. …
Probing rationale, reasons and evidence. …
Questioning viewpoints and perspectives. …
Probing implications and consequences. …
Questioning the question.
Come out and play Alanzo!
Frank please stop the harassment of people who are brave enough to think for themselves. “Nice” Guy is anything but.
Ex(Alanzo)says:
“Frank, please stop the harassment of people who are brave enough to think for themselves. “Nice” Guy is anything but.
My opinion & intentions:
At this moment, I am asking for honest discourse. I have stated a thesis and I’m asking Alanzo to question it – via the Socratic method of question.
****
Alanzo has harassed Claviger, Sherrizy, and anyone else who he happens to disagree with.
The first time I interacted with Alonso, he said – and I quote – “You’re a fucking idiot”. I was 100% nice and sincere. My next interaction with him he called me a “blind r*****”. Alonzo has called nearly everyone on the Frank Report a “blind r*****”. My suggestion to Alonzo is if you can’t take it – don’t dish it out.
****
Socrates said, “to question everything”; I’m asking Alanzo to show up and engage in discourse. No name-calling – just intellectual discourse.
Nice Guy
Where is your proof Alonso?
Slandering Penza…..
Typical Alonso, no rational objective facts.
He only states his opinion.
Thanks
This is a great interview. Thanks for the link! Moira Penza is astonishingly sharp witted and knows this case backward and forward, so she rips straight through the BS put out by the DOS defenders and the Raniere apologists. She brings a good deal of common sense to this discussion, which sometimes drifts off into oddball conjecture.
“But what about due process” Penza lays out clearly and definitively that Raniere got full due process, unquestionably and absolutely. It was due process and a mountain of evidence got him convicted.
Ice Nine-
Great find! Thanks!
I dedicate this song to you:
Why isn’t the US investigating money laundering and tax evasion?
In general, I’d say that “white” collar crime under $10-$50 million, has been virtually decriminalized in this country
It probably was investigated, and prosecutors determined that it would be too hard to make a case and get a significant recovery, and that their limited resources would better be used elsewhere.
Possibly adding to that, it would probably be embarrassing to major players in both political parties in Albany. Remember, the Bronfmans gave their biggest donations to the infamously corrupt Republican State Senate Majority Leader Joe Bruno, and NXIVM infiltrated the local political and legal establishments at a time when they were largely controlled by his party.
Great points AnonyMaker!
The projected amount of money earned from NXIVM courses in Mexico is irrelevant. The center, the foreign nationals working there traveling back and forth from Mexico to the US and Canada, Prorsus and MoneyBack are all potential vehicles for money laundering. The capital can come from any source and be labeled as income (credit) or expense (debit) or simply be a deposit that evaporates that needed a temporary bank account to land. Using a school is clever for money laundering because verifying students that paid and didn’t show up or distance learning students or special paid events/seminars/conferences/programs allow for fake students covering up income, be it a bank deposit or cash. Who or what kind of business needs money laundering capabilities — or what entity uses shell corporations and investment funds to move money, people, drugs, weapons — is the question. Doubtful the investigation report will turn up much of anything other than some dead bodies and maybe a lucky poster child to hang up like a trophy. Whatever the NXIVM leaders such as Nancy were getting with their bags of cash is likely a pittance compared to the usefulness of the Center, Prorsus and Moneyback to legally pump and dump through the banking system and the real money in the game. Laughing at the cleverness of whoever viewed Keith, his courses, so-called business acumen and ethics as a useful vehicle for their means calculating that if the shit hit the fan the focus would be on the quagmire of NXIVM. Final thoughts are run Alex, run.
The Guardian
Sirin Kale
Tue 16 Nov 2021 06.00 GMT
‘The unknown is scary’: why young women on social media are developing Tourette’s-like tics
Doctors have been surprised to see young adults developing tics and seizures that usually start in childhood. Social media has been blamed, but the reality is more complicated
Michelle Wacek was a TikTok fan years ago, back when the video-sharing app was called Musical.ly. “I went on it for a laugh,” she says. “And then I got sucked into the vortex.” She took part in lip-syncing challenges, and followed the influencer Evie Meg, who raises awareness about Tourette syndrome among her 14 million followers.
In April 2020, Wacek was messing around in the kitchen when her husband accidentally clipped her in the face. The then 25-year-old chef had a panic attack. “It triggered a PTSD response from a previous abusive relationship I was in,” she says.
Over the next few weeks, Wacek noticed that she was having tics. “They were just little noises,” she says. “Nothing to write home about.” She would scrunch up her nose, or huff. The tics escalated from sounds into words and phrases. Then the motor tics kicked in. “I started punching walls and throwing myself at things,” she says. By July, Wacek was having seizures. She had to stop work. “Being a chef with seizures is not safe at all,” she says.
Her GP referred her to a neurologist, who diagnosed her with functional neurological syndrome (FND). People with FND have a neurological condition that cannot be medically explained, but can be extremely debilitating. “In a general neurological clinic, around 30% of the conditions we see are not fully explainable,” says Dr Jeremy Stern, a neurologist with the charity Tourettes Action. In Wacek’s case, FND manifested in verbal and motor tics, not dissimilar from how Tourette syndrome appears to lay people, although the two conditions are distinct.
Wacek has up to 20 seizures a day and currently has to use a wheelchair. Like Meg, she is now a TikTok influencer, using her platform to raise awareness of FND. “Knowing that I am going through the same crap as other people out there makes me feel better,” Wacek says. “Without all these platforms, I would be quite isolated.”
This month, Wacek’s Facebook groups and online communities lit up. The source: a Wall Street Journal report about the rise in young women developing sudden-onset tics that doctors thought could be linked to TikTok. The article prompted a swift backlash from many in the Tourette’s and FND community. “I read the article and thought it was a load of crap,” says Wacek. “TikTok is not giving people Tourette’s.” The fact that she followed Meg before developing tics herself, says Wacek, is a “coincidence”.
But there is a rise in young women presenting with unexplained tics that come on suddenly, far later in life than the usual presentation for Tourette syndrome. Some of these young people are social media users, some are not. What on earth is going on?
The neurological journal Brain isn’t typically the locus of international controversy. But times are changing. “Journals are more open-access than ever before,” says Dr Seonaid Anderson, a research psychologist and neurodiversity consultant who specialises in Tourette syndrome. “People with neurodiverse conditions can access what is being written about them far more freely. Webinars often feature patients in the audience.”
In August, Brain published a paper with the incendiary headline: “Stop that! It’s not Tourette’s but a new type of mass sociogenic illness”. In it, clinicians from Hannover Medical School in Germany speculated that a mass sociogenic illness (MSI) that resembled Tourette’s but was not Tourette’s, was spreading among German teenagers. A sociogenic illness, explains researcher Dr Kirsten Müller-Vahl, “is when people who are in close contact develop similar symptoms, but without any underlying cause”.
[ … ]
https://www.theguardian.com/media/2021/nov/16/the-unknown-is-scary-why-young-women-on-social-media-are-developing-tourettes-like-tics