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‘The unknown is scary’: why young women on social media are developing Tourette’s-like tics | Social media

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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”.

A mass MSI outbreak was seen in the UK at a Lancashire school in 2015, where 40 pupils received medical treatment for dizziness thought to be brought on by anxiety after a handful of children fainted during an Armistice Day service in a warm assembly hall. MSI is currently in the news as a possible cause for the mysterious Havana syndrome, which is affecting diplomats at US bases across the world. But experts did not believe MSI could be spread via social media – until the Hannover team’s research.

MSI ripples outwards from a “patient zero”, infecting the people around that person in waves of anxiety-induced illness. “People now use social media so intensively that it more or less replaces our normal context,” says Müller-Vahl. “You can be in close contact with someone via social media, it can be very emotional, and you can identify with that influencer. We believe that spread can happen solely via social media.” In this case, Müller-Vahl identifies this patient zero as a German YouTuber, Jan Zimmerman, who has Tourette syndrome and runs a channel with 2.2 million subscribers.

In 2019, Müller-Vahl says, teenagers began to present at her clinic with functional Tourette’s-like symptoms, a subset of FND. Typically, Tourette’s starts during childhood, with six the average age of onset. But the mean onset age of Müller-Vahl’s patients was 19. Their symptoms also escalated more quickly than typical Tourette’s. In all, since 2019 Müller-Vahl has seen nearly 50 young people; all of them confirmed that they watched Zimmerman’s channel. She believes FND was spread via social media contagion, in much the same way that a fainting fit ripples through a packed school hall.

Müller-Vahl is not accusing young people of faking illness. “I know no expert who feels this is malingering,” she says. But the title of her paper – Stop That! – was interpreted that way. “People criticised our title because it was a bit provocative,” says Müller-Vahl, sounding exasperated. “But we are not saying to the patients: ‘Stop that.’ It’s addressed to medical doctors. Stop diagnosing this as Tourette’s, when it’s FND.”

Michelle Wacek developed functional neurological syndrome in 2020.
Michelle Wacek developed functional neurological syndrome in 2020. Photograph: Jim Wileman/The Guardian

Be that as it may, says Anderson, “It’s easy for the public to think people are saying that you should stop your tics. We want people to get away from that view, which is linked to the dark days of previous years.”

The phenomenon Müller-Vahl’s team observed – young people with sudden-onset tics, thought to be FND and possibly linked to social media exposure – has been observed by clinicians globally. With the exception of Müller-Vahl’s own study, most of those with the symptoms are female. “We’ve seen groups of teenage girls from the same school who develop almost identical tics,” says Dr Tammy Hedderly, a paediatric neurologist at Guy’s and St Thomas’ NHS trust. Stern has likewise heard of outbreaks in UK schools.

“They shout ‘Baked beans!’ or hit their parents on the head,” says Hedderly. “When a 15-year-old girl walks into my clinic shouting ‘Baked beans!’, my first question is: ‘Have you been watching this influencer? Because I know all the names of the influencers. So it’s important to recognise that social media does play a role and the scale of the problem is wide, across the UK.”

In the US, Dr Caroline Olvera, a neurologist, has also seen an increasing number of young people, mostly girls, presenting with sudden-onset tics. She wrote a research paper based on her study of more than 3,000 videos of TikTok Tourette’s influencers, observing: “Despite our study cohort spanning different countries, 67.9% of the cohort mentioned their TikTok tics were from other content creators, and the majority had the same vocal tic.”

Olvera’s research has not gone down well in some quarters. “I’m frustrated,” she says. “I’ve tried to stop reading a lot of what is written out there.” She’s received “lots” of angry emails. “My colleagues have had a positive response to my research,” she says, “but I don’t know if it’s been perceived appropriately by the public. The last thing I would want is for my patients to walk away from this thinking that their disorder is fake or not worthwhile.”

Much of the controversy arises from the misapprehension that doctors are accusing young people of faking Tourette’s for attention, or arguing that TikTok is giving people Tourette’s. Neither claim is true. “What the media has boiled it down to,” says Olvera, “is that if it’s not Tourette syndrome, it’s fake. But just because it’s not Tourette syndrome doesn’t mean it’s fake. This is a real condition. Even though it’s not typical Tourette’s, it’s very disruptive and stressful.”

Meg Jones, 17, began experiencing tics in February this year. “I was really stressed out,” she says. Her puppy was sick, and Meg was behind at school. “I had teachers phoning me non-stop, asking me where my work was,” she says. “At one point I broke down.” The tics started with neck jerks and escalated within weeks. Meg would hit her friends and head-butt things. By May, she was having seizures.

Meg was recently diagnosed provisionally with Tourette’s – over the phone. “The call was less than five minutes long,” she says. “The neurologist didn’t say much. He just said, ‘I believe you have Tourette’s.’” (A diagnosis of Tourette syndrome requires a person to have had verbal and motor tics for at least one year.) She is on the children and adolescent mental health services (Camhs) waiting list. “If I was to look at my life and think of all the things I can’t do at this point, and how uncertain the future is,” says Meg, “I would become extremely depressed.”

After she developed tics, Meg started to follow TikTok influencers with Tourette’s. She is a fan of @UncleTics, a New Zealand influencer with 3.2 million followers. “Finding people who are going through the same thing helps a lot,” she says. “But I also noticed that watching other people tic made me tic.” She picked up specific vocal tics from these TikTok accounts, such as blurting out the word “lesbian”.

It is widely accepted by experts that tics are “suggestible”, meaning that people with tics often trigger new tics in each other. “We know that when people with Tourette’s get together in support groups,” says Anderson, “they may pick up each other’s tics, although it’s usually for only a few hours.” It is not that TikTok is giving people tics; rather, it may be triggering tics in people who are searching social media for information about their condition. “Social media can’t create tics,” Anderson argues. “What it might do is trigger someone who is already susceptible.”

“The safety and wellbeing of our community is our priority,” a TikTok spokesperson says. “We’re consulting with industry experts to better understand this specific experience. We’re proud that people living with Tourette syndrome have found a home on TikTok where they can fight stigma, find community and express themselves authentically.”

Meg, meanwhile, isn’t consciously imitating the influencers she sees on TikTok. “I’ve had people at my school tell me that I’m an attention seeker,” she says. “But if they were put in my shoes, they’d know that’s not true … Imagine straining your neck for hours a day and not being able to move. As much as I find myself hilarious and laugh about it with my friends, I would 1,000% choose not to have this over having the attention, any day.”

Suggestibility can trigger tics even in the classroom. Chloe (not her real name), 14, received a diagnosis of Tourette syndrome in July. “The tics started 18 months ago,” says her mother, Jill (also not her real name). “But she’d been suppressing them, until everything came out in September last year. The stress of the pandemic made it too difficult to hold them in.” Chloe had to take time off school this year. “During the time she was off,” says Jill, “another girl in her class developed tics.” Now both girls are in the same classroom, which poses a problem. “They set each other off,” Jill explains.

It should not be surprising that the stress of the pandemic is causing young people to present with tics, which are often exacerbated by stress and anxiety. It should also not be surprising that social media use may worsen tics in people with an underlying predisposition, in the same way that social media is known to correlate with other negative mental health outcomes. Stern advises patients to limit social media exposure for this reason.

What is surprising, and dispiriting, is the extent to which stigma persists around little-known conditions such as FND, and the lack of support available to people with tics. “Regardless of why these tics are happening,” says Jess Thom of the blog Tourette’s Hero, “whether they are functional (FND) or Tourette’s, the symptoms are real and not the fault of these young people who are in need of support that doesn’t really exist.”

NHS mental health services are at breaking point due to a post-pandemic backlog. “I’ve heard of families waiting between two and four years to be seen by Camhs,” says Hedderly. Chloe is on a two-year waiting list to see a neurologist. Wacek is waiting to see a neurotherapist; in desperation, she called 111 recently, only to speak to a brusque and unsympathetic doctor. “He said I was doing it to myself,” she recalls. “Which made me feel worse, which made me have more seizures.”

In Wales, there is currently no paediatric neurologist who specialises in Tourette syndrome. “It’s shocking,” says Helen Reeves, 42, from Pembrokeshire. Her 13-year-old daughter developed sudden-onset tics in August. “You go to the paediatrician with symptoms and they ask me what I think it might be.” Reeves is campaigning for better provision: a petition she started has more than 7,000 signatures. It is a similar story in much of the UK. “There are hardly any pathways through to consultants,” says Paul Stevenson, 58, of Berwick-upon-Tweed. His son developed sudden-onset tics last year. “All these people are going through this traumatic period, and doctors are not fully understanding what is going on.”

In the absence of specialist support, young people can only hope their tics become more manageable with time. A couple of weekends ago, Meg went away with friends to Cardiff. It was the first ordinary thing she has managed since her tics came on. “That was a major thing,” she says. “To be a normal independent teenager.” Next year, her friends will apply to university. She wants to apply too, but is worried. “What if I had a seizure and no one knew what was going on?” says Meg. “The unknown is scary. But I don’t want to be afraid of my life.”

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VMware fixes buggy vSphere release – and Log4J, too • The Register

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VMware has restored availability of vSphere 7 Update, a release that it withdrew in late 2021 after driver dramas derailed deployments.

Paul Turner, Virtzilla’s veep for vSphere product management, told The Register that the source of the problem was Intel driver updates that arrived out of sync with VMware’s pre-release testing program. When users adopted the new drivers – one of which had been renamed – vSphere produced errors that meant virtual server fleet managers could not sustain high availability operations.

Turner said around 30,000 customers had adopted the release, of which around eight per cent encountered the issue. That collection of around 2,400 impacted users was enough for VMware to pull the release before the other 270,000 vSphere users hit trouble. That level of potential problems, Turner admitted, was considered a sufficient threshold to justify a do-over and the embarrassment of a pulled release.

VMware has since reviewed its testing program and procedures in the hope it will avoid a repeat of this error. Doing so, and repairing the release, meant a busier-than-usual holiday period for VMware developers. Turner said those who put in the extra hours will be compensated with extra time off in the future.

VMware also used the time needed to get the release ready to ensure that vSphere 7 U3 thoroughly addresses the Log4j bug. It took the opportunity to update to the latest version of the tool – which is free of the critical bug that allowed almost any code to execute without authorisation.

But VMware decided not to add anything new to vSphere while it addressed Log4j and sorted out the driver drama. Users will have to wait a few more months for another dose of VMware’s usual concoction of security updates and feature tweaks.

There’s more interesting stuff on the way, too. VMware has promised a full vSphere-as-a-Service offering is in the works, and the Project Capitola software-defined memory tech that will pool RAM across hosts. The company has also dropped hints that its plan to run its ESX hypervisor on SmartNICs is nearing release.

VMware has detailed the new/old release here and made downloads available here

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Facebook given EU go-ahead to pursue controversial Kustomer acquisition

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The EU’s antitrust chief Margrethe Vestager said she was satisfied for the company now known as Meta to pursue its Kustomer acquisition after it struck a deal for rivals.

Meta, the company formerly known as Facebook, has secured antitrust approval from the EU to pursue its acquisition of US customer services software start-up Kustomer.

The social media giant’s decision to acquire the start-up attracted EU scrutiny last April, months before its rebrand. Then known as Facebook, the company planned to integrate Kustomer’s products, including a chatbot, into its service.

Now, Meta has assured the European Commission that it will provide rivals free access to its messaging channels for 10 years.

The EU was satisfied that this addressed competition concerns which previously arose from the company’s decision to acquire Kustomer.

“Our decision today will ensure that innovative rivals and new entrants in the customer relationship management software market can effectively compete,” EU antitrust chief Margrethe Vestager said in a statement.

Last December, Vestager’s Digital Markets Act was passed by EU lawmakers as part of the body’s plans to tighten the monopoly large multinationals hold in Europe’s digital space.

Facebook had initially announced its acquisition plan in November 2020. In February 2021, the Irish Council for Civil Liberties wrote to the European Commission outlining its concerns over data that Kustomer had gathered and what might happen to that data under Facebook’s watch. The Commission also received a referral request from Austria flagging concerns over the Kustomer deal.

Other Meta acquisitions have also attracted the scrutiny of competition regulators. Last November, the UK ordered Meta to sell Giphy after its acquisition of the GIF making company was found to have breached competition rules. In the US, it is facing an antitrust suit that could force the company to sell WhatsApp and Instagram.

The EU’s decision to allow Meta to pursue the acquisition of Kustomer comes following a recent vote in the European Parliament in favour of the Digital Services Act, a companion of the Digital Markets Act. The act represents the EU’s attempt to shift the balance of power away from Big Tech in favour of ordinary people.

The long-debated act was hailed by Facebook whistleblower Frances Haugen as a “gold standard”.

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Now that I’ve finally played The Last of Us, who wants to talk about that ending? | Games

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‘OK, Dad, this is an incredible essay on the effects of grief and grey morality in a postapocalyptic society,” says the eldest child, AKA the millennial. “It’s got proper female characters, progressive takes on sexuality and tonnes of rain.”

“They’ve made a video game of The Handmaid’s Tale?”

“No, Dad. It’s The Last of Us. Don’t worry. It’s still a zombie shooter. And both games have the best ending ever.”

Now she has my interest. Video game endings fascinate me, because my generation started out with arcade games that didn’t have them. Pac-Man kept eating dots and chasing ghosts and the Space Invaders kept coming, wave after incessant wave. The first arcade game that had an actual ending was Dragon’s Lair and nobody actually saw that because it was so hard to complete.

I have a tough start with The Last of Us because I hate games where you search for stuff in every room of a house. I spend my normal life doing that with car keys and headphones. I want games where you walk into a room and all the objects get sucked into a magic pocket. But that isn’t realistic, I hear you cry. Well, neither is only being able to carry three shivs in a world where, despite the zombie apocalypse, cargo pants clearly still exist.

The Last of Us.
Jaw-dropping … The Last of Us. Photograph: Sony

I also hate any form of crafting, because that was what my generation had to do for “fun” as kids before we had video games. Whether it’s smoke bombs from sugar and explosives or a set of Action Man drawers from matchboxes, it’s all boring to me.

“Keep going,” I tell myself. “The millennial says it’s got the best ending ever.”

Throughout the first chapter of Joel and Ellie’s jaunt across a post-infected US I keep trying to guess what this great ending will be. Maybe Ellie isn’t immune to infection after all? Maybe Joel is her real father? Maybe they’re both unwitting participants in some reality TV show, I’m Infected Get Me Out of Here?

As you will all know by now – and if you’ve yet to play The Last of Us then please stop reading – the ending has Joel murder a perfectly innocent and well-intentioned doctor who wants to cut Ellie open to find a cure that will save humanity. But Joel has no truck with utilitarian philosophy, because Ellie has now become a replacement for the daughter he lost. So, he disregards mankind’s future and, by stopping the operation, effectively murders the entire human race (alongside a whole hospital’s worth of doctors).

“Why does he do that?” I asked the millennial, in one of many fantastic discussions we had about the game.

“Because he’s a white male,” came the answer, because it’s 2022 and she’s in her 20s. And maybe she’s right. Either way it is a jaw-dropping, supremely brave ending and the terrific Left Behind side-story also brought the feels.

The Last of Us Part 2
Grey morality … Ellie in The Last of Us Part 2. Photograph: Naughty Dog

So, when it came to The Last of Us Part 2, I was beyond excited. Fifty million hours later I was beyond disappointed.

Don’t get me wrong, the millennial nailed it when she said it was a great exploration of the effects of grief and grey morality. But after spending the whole game switching between two strong female characters (literally, have you seen Abby’s arms?) and contrasting factional creeds, you have the final confrontation. They fight. And … they both live. And go their separate ways. The only real damage is Ellie losing a couple of fingers, and the game portrays the worst consequence of this as not being able to play guitar any more. Seriously? That’s the biggest drawback to being fingerless in a zombie apocalypse? The first game ended with Joel murdering an entire civilisation, the second ends with Ellie murdering one song on a guitar. It’s a scene you might have found in The Secret of Monkey Island. It’s hilarious.

The Last of Us Part 2 leaves us with exactly the same non-ending as those original arcade games. Ellie and Abby will go on killing to keep their respective postapocalyptic factions going, both driven by the grief of murdered loved ones. They are both trapped, endlessly chasing ghosts. Sounds familiar…

The millennial says this shows there are no winners when it comes to revenge. I say they want both protagonists alive for The Last of Us 3. It’s a cynical cop out. But then, The Last of Us Part 2 is a game that features the most cynical scene ever, where apropos of nothing, after genuinely bravura portrayals of women, transgender and gay characters, alpha female Abby suddenly gets rogered from behind by some guy. It happens out of nowhere. The game spends umpteen hours portraying progressive sexuality, and then it’s like some marketing man decided they needed to toss the incels a piece of red meat to stop them hate-bombing all over 4chan (which didn’t work). It is easily the most gratuitous bit of nudity I have ever seen in games, and I have played The Witcher 3. The rogerer in question even has a girlfriend. Who is pregnant. Way to shit on a sister, Abby.

“It’s basically Pac-Man with gratuitous boobs,” I say to my eldest, who sighs and pours herself a large cup of coffee. This will be another long discussion.

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