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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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4 reasons hybrid working looks set to stay for young professionals

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From priorities to practicalities, Dr Amanda Jones of King’s College London explains why hybrid working may be here to stay and outlines the pitfalls that younger employees will need to avoid.

Click here to visit The Conversation.

A version of this article was originally published by The Conversation (CC BY-ND 4.0)

We’re in the middle of a remote working revolution. In the UK, though remote working was slowly growing before the pandemic, in 2020 the number of people working from home doubled.

While this rapid rise can be explained by Covid lockdowns, a recent survey my colleagues and I conducted with 2,000 London workers found that six in 10 employees still regularly work from home despite restrictions no longer being in place. And most don’t want that to change.

Findings from other parts of the world similarly point to a substantial increase in the number of work days being undertaken from home.

For young professionals, the shift has been particularly significant. Before the pandemic, employees in their 20s were by far the least likely to work from home.

In 2022, 64pc of 16 to 24-year-olds we surveyed reported working at home for at least part of the week. This figure is in line with 25 to 49-year-olds (65pc) and in fact higher than for people over 50 (48pc).

Other research also shows that young professionals now engage in hybrid working – dividing their time between their home and their workplace – and may prefer this model to being in the office full time.

US and European data shows that around four in 10 jobs can be conducted from home. But this figure may be higher if we consider that some jobs could be at least partly done from home. In particular, jobs in finance and insurance, information and communication and education are among the most conducive to being performed remotely.

Technologies which support remote working, such as Zoom and Slack, have been available for a number of years. While the pandemic has served as a catalyst for the rise in remote working among younger employees, I would argue that other factors have also contributed to this shift – some of which were already evident before the pandemic.

Importantly, each of these factors suggest this change to the way young professionals work is here to stay.

1. Priorities

Evidence suggests that even before the pandemic, young people were becoming more focused on their own goals, wanted greater flexibility and control, and sought a better work-life balance compared with previous generations. The reasons for this may be related to the changing nature of organisations and careers, which I’ll discuss later.

Our own and other research indicates that remote working, especially working from home (as opposed to, say, at client sites), can boost feelings of flexibility and control and enhance work-life balance. So working remotely could help younger people achieve these goals in a way that traditional working arrangements can’t.

In fact, research indicates that many young people would now rather switch jobs than compromise on the flexibility they gain from hybrid working. So for employers, supporting hybrid working may be necessary to attract and retain the best employees.

2. Practicalities

Across all age groups, participants in our research picked avoiding the commute as the biggest benefit of working remotely. While this has long been a recognised advantage of remote working, it’s important to note that we surveyed London workers – and the commute may be less of an issue for people in other places.

Aside from the time and hassle involved in commuting, travelling to work every day can be expensive. The cost of working in the office goes up if you also factor in lunches, coffees and after-work social activities.

This may be difficult for younger people – who are contending with the rising costs of living, often on lower salaries – to manage. Working remotely can help reduce spending, making it an attractive option – and even a potential lifeline – for younger employees.

3. Career trajectories

Studies show that a move towards less hierarchical, more efficient and flexible organisations results in a “new deal” of employment. Employers no longer guarantee job security and progression for employees, but gain their commitment by providing opportunities – including training programmes – that enhance their employability.

The onus then moves to employees to manage their own career progression, which remote working may help them with. For example, we know working from home can reduce distractions and improve productivity.

Taken with the commuting time saved, young professionals may have more time to dedicate to development opportunities, such as studying for additional qualifications. This could increase their attractiveness in the job market.

Indeed, young professionals seem to be the most likely to switch jobs. If they don’t expect to remain with an organisation long term, they may be less motivated to build strong relationships with colleagues and managers, and unwilling to put their own goals aside for those of the organisation.

4. Managers’ behaviour

Research shows many more managers now work remotely compared with before the pandemic. This change has two important effects.

First, managers who work remotely are likely to find it harder to stop juniors from doing the same. Managers’ ability to monitor and develop their junior staff in person, a common reason for prohibiting remote work in the past, is also reduced if managers are away from the office themselves.

Second, as more managers work remotely, younger employees may feel more confident that doing so won’t prevent them achieving success. Managers serve as role models to junior employees and evidence shows that younger professionals seek success by copying role models’ behaviour.

Avoiding the pitfalls of hybrid working

Despite the positives, younger employees, with comparatively limited experience and networks, may face disproportionately negative outcomes from remote working in terms of recognition, development and networking opportunities.

So if you’re a young professional working remotely, how can you avoid the pitfalls of hybrid working?

Setting your own goals can keep motivation and performance high. Meanwhile, proactively communicating your challenges and achievements to senior and peer-level colleagues can ensure that you receive guidance and recognition.

It’s a good idea to plan some of your time in the office to coordinate with team members or managers. At the same time, it’s useful to try to schedule office visits on different days of the week. This can help maintain key relationships but also help build networks through bumping into colleagues you don’t necessarily work as closely with.

Finally, upping attendance at external conferences and events could increase your value to the organisation through encouraging innovation and fresh ideas, while keeping you aware of external employment opportunities.

The Conversation

By Dr Amanda Jones

Dr Amanda Jones is a lecturer in organisational behaviour and human resource management at King’s College London.

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Kids’ tech: the best children’s gadgets for summer holidays | Gadgets

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With the long school summer holiday well under way, you may need a bit of help keeping the kids entertained. From walkie-talkies and cameras to tablets, robot toys and fitness trackers, here are some of the best kid-aimed tech to keep the little (and not-so-little) ones occupied.

Robot toys

Sphero Mini – about £50

Sphero Mini robotic ball.
Sphero Mini robotic ball. Photograph: Bryan Rowe/Sphero

Lots of tech toys are fads but my longtime favourite has stood the test of time as a modern update to remote control fun. Sphero is a ball you control using a smartphone or tablet, and has hidden depths, with games and educational elements also available.

The mini Sphero ball is a lot of fun to drive around and small enough that overexuberant indoor excursions won’t result in broken furniture and scuffed-up paintwork. The Sphero Play app has games, while the Sphero Edu app is great at fostering creative learning.

Kids or big kids can learn to program, follow examples, get the robot to do all sorts of things, or go deeper and write some code for it in JavaScript. Higher-end versions such as the £190 BOLT take the educational elements to the next level, too.

Tablets

Amazon Fire 7 Kids – about £110

Amazon Fire 7 Kids edition tablet.
Amazon Fire 7 Kids edition tablet. Photograph: Amazon

If you would rather not lend your precious breakable phone or iPad to your little ones, Amazon’s practically indestructible Kids edition tablets could be just the ticket.

The cheapest and smallest Fire 7 has just been updated and is available in a range of bright-coloured cases with a pop-out stand. If your offspring do manage to break it, Amazon will replace it for free under its two-year “worry-free” guarantee.

It does all the standard tablet things such as movies, apps, games, a web browser if you want it, and parental controls to lock it, set time limits and age filters. There’s even an option restricting access to curated child-safe sites and videos but it doesn’t have access to the Google Play store, only Amazon’s app store.

The Kids edition comes with a one-year subscription to Amazon Kids+ (£3 to £7 a month afterwards), which is a curated collection of child-friendly text and audio books, movies, TV shows and educational apps.

The larger £140 Fire HD 8 and £200 Fire HD 10 are available in Kids versions, too, if you want something bigger, or Amazon’s new Kids Pro tablets start at £100 with additional features aimed at school-age children.

Alternatives include LeapFrog’s various educational tablets, which are fine for younger children, or hand-me-down or refurbished iPads (from £150) in robust cases, which can be locked down with some parental controls.

Cameras

VTech Kidizoom Duo 5.0 – about £39

VTech Kidizoom Duo 5.0 kids’ camera in pink.
VTech Kidizoom Duo 5.0 kids’ camera in pink. Photograph: VTech

Before the advent of smartphones, standalone cameras were the way we visually documented our lives, and they still can be a bit of creative fun and inspiration for kids.

The VTech Kidizoom Duo 5.0 is a “my first digital camera” of sorts made of rugged plastic and simple in operation, which VTech reckons is suitable for three- to nine-year-olds. It captures 5MP photos of reasonable quality and can shoot from the back for selfies, too, all viewable on a 2.4in screen.

The optical viewfinder helps them line up the shot, which they can transform with fun filters and effects. It even shoots video, too. The kid-centric nature of it might turn off older children but every award-winning photographer has to start somewhere before the smartphone takes over.

It needs an SD card for storage and takes four AA batteries at a time, and chews through them fast, so buy some rechargeables to help save money and the planet.

For older children, rugged and waterproof action cams could be the way to go, shooting video and photos. Budget no-brand cams cost from about £80 but secondhand or refurbished models from the big boys such as GoPro and DJI go for about £100 and on eBay and elsewhere.

Fitness trackers

Garmin Vivofit Jr 3 – from about £55

Garmin Vivofit Jr 3 Star Wars edition.
Garmin Vivofit Jr 3 Star Wars edition. Photograph: Garmin

Your child may not need any encouragement to tear about the place but if you are after a gadget to “gamify” and reward their activity – as well as giving them a smartwatch-esque gadget to play with – the Garmin Vivofit Jr 3 could be a winner for ages four and up.

Its watch-like form comes in various themes and designs, including with various Star Wars, Marvel and Disney characters, with custom watchfaces to choose from. The user-replaceable coin-cell battery lasts a year, so you don’t have to worry about charging it. Water-resistance to 50 metres means swimming should be no problem either.

It tracks steps, activity and sleep with motivational messaging. It has mini games to play once your child has hit their goals, and can all be managed from a parent’s phone or tablet, so you can keep an eye on their data. Parents can even set goals, competitions with their own activity levels, chore reminders and tasks that can earn virtual coins for them to trade for rewards with you.

It is button-operated rather than touchscreen, and the backlight doesn’t stay on long to preserve the battery.

If you are a user of Google’s Fitbit trackers yourself, then the firm’s Ace 3 (£50) means you can compete on activity, but it needs charging every seven or so days. Other cheaper adult-focused fitness trackers such as the Xiaomi Mi Smart Band 6 (about £29) may be better for older children.

Walkie-talkies

Motorola T42 Talkabout – about £35 for three

Motorola Talkabout T42 two-way radios.
Motorola Talkabout T42 two-way radios. Photograph: Motorola Solutions

Walkie-talkies are a great replacement for phones, allowing kids and big kids to keep in touch without fear of fees or smashed screens.

There are plenty of child-centric options available with various character themes but basic units usually work better. Motorola’s T42 Talkabout comes in various colours and multipacks.

They are simple to set up, with a pairing button and multiple channel selection to find a clear one. Once going, just push to talk, even over long distances. Their quoted 4km range might be a bit ambitious but they should be good for at least 500 metres in urban environments, or much further in the open air.

They take three AAA batteries each, which last about 18 hours of talking or roughly three to four days in active use, so you might need a small army of rechargeable batteries.

They have a belt clip and loop for hooking to a carabiner (metal loop) or similar, and are fairly rugged, too, so should survive being launched across a room or two.

Nestling’s camouflage walkie-talkies (about £26) are also a popular choice but there are lots of choices under £30 available on the high street.

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India’s latest rocket flies but payloads don’t prosper • The Register

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India’s small satellite launch vehicle (SSLV) made a spectacular debut launch on Sunday, but the mission fell short of overall success when two satellites were inserted into the incorrect orbit, rendering them space junk.

The SSLV was developed to carry payloads of up to 500 kg to low earth orbits on an “on-demand basis”. India hopes the craft will let its space agency target commercial launches.

Although it is capable of achieving 500 km orbits, SSLV’s Saunday payload was an 135 kg earth observation satellite called EOS-2 and student-designed 8 kg 8U cubesat AzaadiSAT. Both were intended for a 356 km orbit at an inclination of about 37 degrees.

That rocket missed that target.

Indian Space Research Organisation (ISRO) identified the root cause of the failure Sunday night: a failure of logic to identify a sensor failure during the rocket stage.

ISRO further tweeted a committee would analyse the situation and provide recommendations as the org prepared for SSLV-D2.

ISRO Chairman S Somanath further explained the scenario in a video statement, before vowing to become completely successful in the second development flight of SSLV. “The vehicle took off majestically,” said Somanath who categorized the three rocket stages and launch as a success.

“However, we subsequently noticed an anomaly in the placement of the satellites in the orbit. The satellites were placed in an elliptical orbit in place of a circular orbit,” caveated the chairman.

Somanath said the satellites could not withstand the atmospheric drag in the elliptical orbit and had already fallen and become “no longer usable.” The sensor isolation principle is to be corrected before SSLV’s second launch to occur “very soon.”

Although ISRO has put on a brave face, its hard to imagine the emotions of the school children who designed AzaadiSat. According to the space org, the satellite was built by female students in rural regions across the country, with guidance and integrated by the student team of of student space-enthusiast org Space Kidz India.

EOS-2 was designed by ISRO and was slated to offer advanced optical remote sensing in infra-red band with high spatial resolution. ®



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