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ASMR: the emerging scientific quest to understand brain ‘tingles’

Sarah Hearne
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ASMR: the emerging scientific quest to understand brain ‘tingles’

I’m at the travel agents and the agent is writing down flight options for me on one of their compliment slips. They use that rounded handwriting that all travel agents seem to have and write carefully and deliberately. I watch, because I want to check the details going down are as we’ve discussed. But as I watch that pencil make its way across the paper I get this lovely warm, calm sensation ripple from my the top of my head and down towards my shoulders.

This sensation is one I’ve experienced as long as I can remember. It has a number of triggers, some involving physical touch (someone gently styling my hair for example, or playing that childhood game where you write letters on each others backs) but many involve just watching someone perform a small action, such as writing, with care and attention to detail. Yet despite being something I’ve experienced since childhood it’s not something I’ve ever discussed with others. When I was younger this was mostly out of fear of being thought of as weird – either I was the only one experiencing this which would make me strange, or everyone experienced it and I was strange to be talking about something so commonplace. But in recent years, ever since I found a name for this sensation – Autonomous Sensory Meridian Response or ASMR – I’ve found myself increasingly hesitant to out myself as someone who experiences it. This is because it is often seen as sexual or fetishistic in nature, a characterisation not helped by repeated references to “head orgasms” and the preponderance of young, attractive, female ASMR YouTubers.

But what is ASMR? As any article you read on the subject will tell you, the term was coined by Jennifer Allen in 2010 to describe the tingling sensation she, and others, feel in response to specific sensory cues. This feeling starts in the head and can spread to the shoulders and back, sometimes to other extremities when particularly intense. Despite the constant allusions to sexual orgasms it is not a sexual sensation. It is pleasurable but not all pleasure is sexual, and these allusions appear to be more to do with our limited vocabulary to describe different types of pleasure than it is to do with any actual relationship to sex. It is calming and many people trigger their ASMR to help get to sleep, in contrast to frisson, which is emotionally arousing or exciting. My triggers are fairly typical, though I appear to be in a minority by not finding whispering a trigger (in fact, I find it incredibly annoying and the forced “ASMR whisper” is something I cannot stand).

A microphone

Shortly after naming the sensation Allen set up a Facebook group, and not long after a YouTube community arose creating and sharing videos designed to trigger the feeling. That community is huge and growing – in 2019 there were a reported 13 million ASMR videos, up from 5.2 million a mere three years earlier – and popular videos have many millions of views. Despite an increased popular awareness ASMR has struggled to be considered worthy of scientific investigation. Of course, its hard to research something you don’t know exists and doesn’t have a name, but even so, the lack of scientific interest in this sensation is notable. It doesn’t help that those who don’t experience it are often sceptical of its existence – understandable but also slightly infuriating.

No-one knows what percentage of the population experiences ASMR. In fact no-one knows very much about anything relating to ASMR. This isn’t that surprising given the first peer-reviewed paper on ASMR was only published in 2015, but since then the research has been all over the place. Researchers have compared the brains of people who do and don’t experience ASMR, and have examined the brains of people while experiencing ASMR. They have compared the personalities of people who do and don’t experience ASMR, and compared the emotional regulation abilities of those who do and don’t experience ASMR. But all these studies have been limited in size and scope, making it difficult to draw any firm conclusions.

This lack of coherence in the research makes it hard to say anything definite about our current understanding of the phenomenon or where future research will lead. This isn’t surprising given that we are barely a decade into recognising it as a real experience. Cynically, I suspect a lot of the research will focus on how ASMR can be exploited for commercial gain as companies have already recognised just how lucrative it can be, particularly as people are already exploring the effects of triggers on those who do not experience ASMR.

More broadly, I think that ASMR provides an interesting case for skeptics. It is a real phenomenon, even if its neurological underpinnings are currently unclear, but it’s a phenomenon that is impossible for someone who does not experience it to understand and easy to dismiss as made up. Any skeptic exploring the seemingly bizarre online community of ASMRists and their viewers for the first time can be forgiven for thinking they’ve found the latest woo. (Though it’s worth remembering that not everyone who experiences ASMR is a part of this community or is even aware of its existence). The extravagant claims that have been made about ASMR as potential cures for anxiety and depression, even in children, only serve to reinforce the idea that this is pseudoscience preying on vulnerable or gullible people who mistake feelings of calm and contentment with some special sensation.

So how can a skeptic who doesn’t experience ASMR, or synaesthesia (another relatively recently recognised neurological phenomenon), or other some yet-to-be-discovered neurological phenomenon test the validity of claims that they exist? I think, perhaps controversially, that this may be an instance where we can say that anecdotes, in sufficient quantity and quality, accumulate to the point that they can be considered data. In the case of both ASMR and synaesthesia, there is a remarkable consistency in the reports from people who experience them.

This may be an instance where anecdotes, in sufficient quantity and quality, can be considered data… In the case of both ASMR and synaesthesia, there is a remarkable consistency in the reports from people who experience them

Take a look at the comments under this piece by clinical neurologist and skeptic Steven Novella where he discusses the scientific evidence for and against ASMR. There is comment after comment about people saying they have had this experience since childhood, describing similar triggers without any evidence of collusion. While Novella points out in the comments that people report all sorts of weird experiences but that doesn’t make them real – out-of-body and near death are two examples he provides –I would argue that saying you have a specific and repeatable type of response to certain audio, visual or tactile cues is in a different league to saying you had a glimpse of the afterlife. (I’d also add that both the experiences he describes are real, just that they aren’t people literally leaving their body or seeing a door to the afterlife).

This isn’t to say that there isn’t pseudoscience within the ASMR communities. The commercialisation of ASMR has already begun and there is huge scope for exploitation of vulnerable people, especially given many of those who listen to ASMR videos do so to help with conditions such as depression and insomnia. But being skeptical of exploitative companies and individuals doesn’t mean we have to be skeptical of the underlying phenomenon.

Ultimately, I think ASMR provides us an opportunity to explore the limits of skepticism, particularly around personal experience. Extraordinary claims require extraordinary evidence, but given the complexity of the human brain, it really doesn’t seem that extraordinary that there should be some quirks that only a small percentage of the population experiences. Synaesthesia and now ASMR are two of these quirks. I wonder what others are out there that people have been experiencing all their lives without realising how unusual they are – or, indeed, aren’t.

The paradox of progress: how some social improvements paper over unfairness and inequality

Aaron Rabinowitz
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The paradox of progress: how some social improvements paper over unfairness and inequality

When people ask about my political persuasion, the first word that always comes to mind is ‘progressive’. I was raised to believe that progress is both possible and desirable, and that society exists to increase our quality of life by promoting progress. Recently though, I’ve been forced to question every part of this world view, and while I haven’t abandoned progressivism, I feel constantly plagued by what I’ve come to call the paradox of progress.

I experience the paradox of progress as akin to Zeno’s paradoxes about motion, which appears to show that the motion we all experience is actually impossible. On one side of the paradox are all the instances of what seem like unquestionable progress. From the abolition of slavery, to the enfranchisement of women and other marginalised groups, to shifting views on homosexuality, there are many discrete examples of progress for Polyannish thinkers like Steven Pinker to point to when arguing that things are getting better. On the other side of the paradox is the view that progress is a myth. Scholars have advanced the myth of progress thesis by attacking both the descriptive and prescriptive parts of the progressive position. Some claim that politics is inevitably cyclical rather than a linear progression, while others will argue that progress always seems to come for some more than others, and usually with externalised costs. Is there any way to reconcile these views?

We don’t factor in the vast numbers of people effectively denied equitable access to modern medical advancements because of the luck of birth, so that the rest of us can have the level of access we’re accustomed to.

We could start with common examples cited by proponents of progress, such as modern medicine. It’s easy to look at the reductions in suffering caused by modern medicine and conclude “that’s unalloyed progress”, but that’s partly because we obscure the massive quantities of single use plastic and other forms of waste that our medical system produces. We don’t factor in the vast numbers of people effectively denied equitable access to modern medical advancements because of the luck of birth, so that the rest of us can have the level of access we’re accustomed to. The system that manages to produce highly effective vaccines in the midst of a pandemic is the same system that predictably fails to equitably distribute those vaccines, because that system has learned that progress is achieved through the hoarding of resources and the enforcing of unjust distributions.

Take the example of slavery in America. The story goes that America, in a celebrated act of social progress, fought a bloody civil war to end slavery, followed by another hundred years and counting of protest met with domestic violence, all to secure a fairer society.  As a result, the descendants of formerly enslaved individuals no longer have to fear that a bounty hunter will capture them and return them to legal enslavement. And yet, human trafficking and forced labor remain substantial “hidden crimes” in America.

As with many social ills in America, the data on “modern slavery” is heavily contested. Estimates vary wildly depending on how the researchers define ‘slavery’. The picture is further complicated by America’s dependence on government approved penal labor, a system that traces its roots directly back to slavery. The vaunted 13th amendment that banned slavery included a loophole allowing forced labor for prisoners. That loophole, combined with the war on crime and drugs in the 80s, resulted in the exponential growth of a privately run prison industrial complex that now incarcerates 2 million people, more than any other country.

As with modern slavery more broadly, the data on what percentage of the prison population is coerced into forced labour is absurdly unreliable, especially given that we’re talking about a vulnerable population nominally in the care of the government. Some sources put it as low as 7% while others put it as high as 50%. The exploitative nature of American prison labour recently garnered national attention because of stories of California prisoners fighting forest fires for little money and with no guarantee that they would be allowed to use those skills as a firefighter when they’re released.

When we replace a system of overt oppression with a system of somewhat less violent covert oppression, should we really count that as progress? Postcolonial theorists argue that colonialism survived by evolving from the straightforward domination and extermination of indigenous peoples to a far more “ethically palatable” model that justified exploitation by coupling it with the promise of uplifting societies who had failed to progress. So, while it’s good that colonialists are no longer cutting off the hands of the Congolese for failing to meet rubber quotas, can we say progress has been achieved when the destabilising effects of that exploitation continue unabated?

Consider the final lines of Du Bois’s chapter “On the Meaning of Progress” in The Souls of Black Folk, where he talks about returning to a community he once taught in to find a former student has died and the families in the community are still suffering from unjust imprisonment, poverty, and exploitation:

My journey was done, and behind me lay hill and dale, and Life and Death. How shall man measure Progress there where the dark–faced Josie lies? How many heartfuls of sorrow shall balance a bushel of wheat? How hard a thing is life to the lowly, and yet how human and real! And all this life and love and strife and failure,—is it the twilight of nightfall or the flush of some faint–dawning day? Thus sadly musing, I rode to Nashville in the Jim Crow car.

Just as in Du Bois time, progressive activists today live in a world desperately in need of progress, where the history of exploitation remains deeply entrenched in current systems. There is no guarantee that the limited social progress of the past few hundred years is stable, and skeptics of our better angels may prove to be correct, especially aided by the effects of climate change. We really can’t know if the current strife is the precursor to more widespread progress, or the beginning of a dark period of social retrenchment.

A small plant growing out of some old wood

Even if we accept that progress is possible, the concept of social progress has potentially harmful implications. The concept of social progress necessarily implies a shift from a less moral society to a more moral society. What do those moral judgments mean for societies that don’t meet our criteria for progress?

Historically, the answers of social progressives on this front have been mixed. Progressive moral theorising in the mid-18th century combined with flawed knowledge of indigenous people to create the modern narrative that human societies should progress from savagery to civility through the uplifting influences of forces like Christianity, capitalism, and liberal democracy. Societies that had not followed this trajectory were seen as stagnant or regressive, and various pseudohistoric and pseudoscientific theories arose to explain why some societies had progressed more than others. Other social progressives tried to strike a balance between the desire to see their own culture as making progress and a culturally relativist approach to anthropology that suspended moral judgments towards other societies for the sake of achieving greater cultural understanding.

I don’t think either model is sufficient, and at present progressives are stuck with an uneasy mix of moral judgments that comes to the foreground when trying to address issues like religious arguments against autonomy for women. This is the mixed intellectual history that social progressives inherit, and we’re obligated to wrestle with it if we want to earn the right to talk of making things better.

As I wrestle with this paradox, some beliefs about progress do continue to seem justified. I believe we can still say that a society that respects the equality and bodily autonomy of marginalised groups is a significant improvement over societies that actively marginalise those groups. I believe there comes a point where the behavior of other societies becomes sufficiently regressive that we are morally obliged to intervene. I say that as someone living in a society that desperately needs an intervention on a variety of fronts. As I watch our right wing prevent action on climate change, embrace conspiracism, roll back bodily autonomy rights for women, and undercut voting rights for people of colour, I genuinely don’t know if we’ve made progress or not. I don’t think I’ll live long enough to find out the answer to that question, so I’m stuck with a persistent skepticism towards one of my most deeply held beliefs.

The mystery of the Gedriya: Unexplained lights over the Arabian Desert

David Mountain
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The mystery of the Gedriya: Unexplained lights over the Arabian Desert

It was December 1935, and the explorer Freya Stark was camping in the Hadhramaut, a desolate and dangerous region in the southern Arabian Peninsula. After a long day’s trek across the sands, she and her Bedouin guides were enjoying a pot of coffee around the campfire. But something was stirring in the inky depths of the desert night. ‘We looked in the silence to the darkness and the stars,’ Stark recalled. ‘We were suddenly astonished to see a small light flickering about there.’

The travellers were baffled. None of them recognised the light. Stark suggested that it could be a lantern, ‘bobbing up and down with a donkey.’ However, her guides – who knew the region intimately – were unconvinced. ‘People do not travel by night,’ one of them noted.

Then, as suddenly as it appeared, the light vanished. This seemingly impossible feat settled the matter for her companions. ‘It must be the Gedriya,’ they agreed. Seeing Stark’s blank expression, the guides elaborated: ‘the Gedriya is a great light which sometimes appears in the sky during the 25th night of Ramadan, and it will grant every wish which is made while it is visible.’ The night of Stark’s encounter just so happened to be the 21st December 1935 – in the Islamic calendar, the 25th night of Ramadan.

Coming across this account in Stark’s book, The Southern Gates of Arabia, I was intrigued. If the Bedouin are to be believed, there is – or, at least, was – a mysterious light that would routinely appear over the barren sands of southern Arabia. Adding to the intrigue, the internet had nothing to say on the matter: a search for the name ‘Gedriya’ found nothing. Stark seems to be the only English-speaking writer to have used the term.

So what could the Gedriya have been? Few of the usual suspects for mysterious lights seem to fit the bill. In the 1930s, artificial satellites were still 20 years away, and planes – though not unknown in Arabia – were uncommon, especially at night when conditions were more hazardous. Planets and stars are also unlikely candidates, as the Bedouin relied on the night sky for navigation and would have been very familiar with the position and appearance of these celestial bodies. A meteor or comet is possible, but the movement of the light – described by Stark as ‘bobbing up and down’ – doesn’t seem quite right.

Casting further doubt on a natural explanation is the timing of the Gedriya, which was said to appear every 25th night of Ramadan. The trouble with this is that the Islamic calendar is lunar, unlike the Western solar calendar used around the world today. This means that the 25th night of Ramadan will occur on a different date each year. In 1935 it was the 21st December, but in 2021 it was the 7th May. This makes the mysterious light hard to square with a meteor shower, which align with the solar calendar, or with any known comet, which orbit the sun too slowly to make an appearance every Ramadan.

A kerosene lantern

It’s this intimate connection to a specific date, however, that suggests a possible explanation for legend of the Gedriya. After talking to some friends, I learnt that, in Islamic tradition, the angel Gabriel is said to have descended to Earth with the Koran during the last ten days of Ramadan. The exact date is lost to time, but all Muslims agree that it was an odd-numbered day. Many today believe it to be the 27th night of Ramadan, but a sizeable minority – including, it seems, Stark’s guides – believe it instead to be the 25th night. Whenever it’s celebrated, Qadr Night is one of the most important and widely observed events in the Islamic calendar. And, amid the prayers and solemnities of the night, some Muslims believe Gabriel can still be seen flying across the sky, in a kind of celestial recreation of the angel’s original descent 1,411 years ago.

And so the mystery of the Gedriya probably doesn’t have a physical explanation, as I first wondered, but a cultural one. As the Islamic holy month draws to a close, many Muslims expect to see a light in the sky. ‘Angelic’ lights continue to be witnessed by Muslims today, although the name ‘Gedriya’ seems to have faded into obscurity. There are even videos of supposed angel sightings, although they’re unlikely to convert the faithless. In the same way that a farrago of unrelated phenomena, from planes to planets to party balloons, are all mistakenly identified as UFOs, it seems that anything out of the ordinary is liable to be ascribed to the magic of Qadr Night.

For Stark and her companions, the true nature of their Gedriya encounter quickly became apparent. ‘The light reappeared, nearer,’ she wrote – only now it was accompanied by ‘a sound of feet stumbling over stones.’ As the group peered in the direction of the sound, ‘a voice presently hailed out of the darkness, and three peasants from the wadi, well draped and hooded against the nightly cold, appeared in our circle of firelight.’ They carried a lantern – the very same light that had startled the campers just a short while ago.

Despite the anticlimax, Freya Stark’s experience remains interesting for two reasons. First, it shows how even experts can make simple mistakes. The Bedouin knew the Hadhramaut better than most of us know our own back garden, yet they were unable to identify something as commonplace as a lantern in the disorientating darkness of the Arabian night. Second, it shows how mysterious encounters can have cultural as well as physical causes. Interestingly, Stark – who was unaware of the Gedriya legend – correctly identified the light as a lantern soon after spotting it. When it comes to sceptical enquiry, a little cultural context goes a long way.

The BBC’s ‘Sickness and Lies’ adds to the stigma disabled and chronically ill people experience

Alice Howarth
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The BBC’s ‘Sickness and Lies’ adds to the stigma disabled and chronically ill people experience

At the beginning of August – just a few days after Disability Pride Month came to a close – The BBC broadcast a new documentary, called Sickness and Lies. Accompanying the documentary was an article headlined “Munchausen by Internet: Are chronic illness influencers really faking it” which said:

as visibility has grown, so have accusations of fakery. A new BBC documentary, Sickness & Lies, explores whether the accusers are right. Are some influencers faking illnesses for fame, money and attention?

Naturally, there was quite the backlash from the disabled community on social media. The idea that people with serious chronic illnesses might be faking it for some benefit to themselves is one that is repeated over and over again despite no evidence that fraud is common in disabled or chronically ill people. Perpetuating this accusation of fakery has the potential to be quite damaging, which is why I watched the documentary, to get a feel for just what evidence the BBC had to present.

Sickness and Lies

Before even watching the documentary, as someone who is disabled and suffers from chronic illness, I had some concerns about the title. It’s certainly emotive and eye catching. Maybe if the documentary was particularly well balanced it might help educate people on the experiences shared by many disabled and chronically ill people. Content about the possibility of people taking advantage of the welfare system, for example, has been popular over the years. Maybe using an attention-grabbing title could help encourage people to watch and learn something? But in using such an emotive title, it risks perpetuating the stereotype that people with chronic illnesses are lying about their symptoms and the influence those symptoms have on their daily life.

Doctors routinely assume that disabled or chronically ill patients are exaggerating their symptoms, that they’re misinterpreting their symptoms, or that the physical symptoms they describe manifest due to mental ill health. If a doctor cannot find an obvious cause of real physical symptoms, instead of investigating further, patients are often dismissed as if they are “creating” their symptoms. This is amplified in marginalised groups, with women often treated as if their pain is less serious, and black people treated as if their pain threshold is significantly higher. And, of course, countless people are told they’d feel better if they just lost some weight.

It is within this context – not to mention a workplace culture in which people fake illness or take sick days in order to get access to welfare support – that this title sits. Placing the word “lies” next to the word “sickness” plays heavily into discrimination that disabled and chronically ill people already face, and at best it is insensitive.

Chronic illness influencer

The documentary opens with the line:

a new kind of influencer has been born – the chronic illness influencer, and some are attracting huge followings

Notably, the documentary does not go on to define what it means by “chronic illness influencer” nor does it provide evidence that they exist – only that there are people with large social media profiles who discuss their chronic illness.

Influencer - a cartoon drawing of a white woman wearing red sunglasses, a red dress and red earrings and hairband holding back her dark hair. In the background are social media icons and emoki.

There are no concrete definitions of what constitutes a social media influencer, but broadly speaking it is a marketing term for someone who has enough of an influence within their niche to be able to sell or promote products to people within that niche.

There are doubtlessly some people who have a niche within the world of chronic illness and disability advocacy or visibility, and who are profiting from having ‘influence’ within that niche. Perhaps that’s sufficient to say that chronic illness influencers exist, but personally I think it’s less clear cut than that. Many of the people with platforms who discuss chronic illness that I encounter predominantly focus on advocacy or visibility; they are doing what they can to support people within their niche or to share their own experiences. Perhaps, alongside that, they are able to use their ‘influence’ to sell products that might be used by people in their niche and make themselves a little money – but that feels quite different to someone whose primary aim is to influence their audience for profit.

There are also plenty of people who are social media influencers who just happen to have chronic illnesses, and who share their chronic illnesses on their public platforms. We could, perhaps, describe them as social media influencers and chronic illness advocates.

If I were being really cynical, I would say setting up the idea of a chronic illness influencer might well make it easier to accuse people of faking – because we might convince ourselves that these influencers are rich and famous and therefore in some way ‘fair game’.

Fakers

The documentary pitches two examples of people who are proven ‘fakers’. The first is Belle Gibson. Belle Gibson is a heartbreaking example of a woman who has admitted to faking the cancer she told her vast number of followers she had. She claimed she was managing her fictional cancer with alternative therapies that she wrote about on her blog, social media, in her books and in her app. I wouldn’t call Belle Gibson a ‘chronic illness influencer’ – if anything, I would describe her as a ‘wellness influencer’. She developed an entire business around promoting and selling wellness advice and alternative lifestyle views. Her fictional illness was a big part of her appeal and marketing strategy, but it was not her primary niche. I don’t think Belle Gibson is the right example for a documentary about accusations of faking within the chronic illness community, but she is unquestionably an example of the potential damage of someone faking something serious in order to generate sales or influence.

The second example of a ‘faker’ given in the documentary is of an unnamed woman, whose story was told through her sister (which I’m not sure is ethically appropriate but at least the woman wasn’t identifiable). The woman had factitious disorder, also known as Munchausen’s syndrome, which is a psychological condition where someone feigns illness for the purpose of gaining medical examination or treatment, or else sympathy or comfort from the healthcare system. Importantly if someone is faking an illness for material gain – money, time off work or access to drugs for example, then it is not factitious disorder. The sister describes examples of how the woman feigned symptoms and consequences of illness in order to seek medical care. It’s undoubtably a very sad case, but again, it does not really pertain to the online chronic community and accusations of faking. The documentary doesn’t say that this woman was even active on social media, let alone whether she had a wide following or any ‘influence’ in the chronic illness niche.

Accusations

The documentary goes on to present reddit forums that are dedicated to scouring the social media accounts of people who talk about their chronic illnesses online looking for evidence of faking. The level of scrutiny that takes place on these forums is so intense that it can cause serious harm to the people who are targeted. These forums often refer to the people they target as “munchies”, claiming that instead of having the illnesses they claim to have, their targets are actually suffering from “Munchausen by internet”.  The documentary introduces this condition as a sort of modern manifestation of factitious disorder, and even speak to the psychologist who coined the name.

While the documentary does talk about some of the dark side of these forums and the potential damage that they cause to people with chronic illness or disability, they also imply that there is a need for a space where people can challenge someone who says they are chronically ill or disabled.

The host asks the question “how can you tell if someone has Munchausen by internet and isn’t just genuinely sick?”. For me this is the crux of the issues with this entire documentary. While the documentary gives an example of Belle Gibson, someone who had the potential to cause great harm by faking a serious illness she didn’t have and using it to gain influence and financial gain, it predominantly focuses on people who fake their illnesses for other reasons. The documentary doesn’t fully explore what these reasons might be – a vague comment on “fame, money and attention” – nor does it provide any evidence that this is a cause for concern within the chronic illness community. It pitches the idea of “Munchausen by internet” and then suggests that a person who had this condition wouldn’t be “genuinely sick”. To be crystal clear – factitious disorder is a genuine, serious psychological condition. People with factitious disorder are “genuinely sick”.

[Sickness and Lies] pitches the idea of “Munchausen by internet” and then suggests that a person who had this condition wouldn’t be “genuinely sick”. To be crystal clear – factitious disorder is a genuine, serious psychological condition. People with factitious disorder are “genuinely sick”.

This sets up a false equivalence: just because we should be able to challenge the Belle Gibson’s of the world, does not mean scouring the social media of people with chronic illnesses for evidence of “faking” is ethical. 

Wrongly accused

The documentary speaks to someone they describe as a chronic illness influencer who they call Jess. Jess talks about how she has been the target of accusations of faking and says that she has been doxxed. She talks about how her chronic illness affects her life and how she found comfort in sharing her experiences in the chronic illness community online. She also expresses concern at how people might list their diagnoses and all their fluctuations, as if to prove how sick they are.

The way this is framed in the documentary (not by Jess), is that in some cases these people might be ‘faking’. In reality, many people with chronic illnesses feel like they have to justify themselves.

A white woman with a short blonde hairstyle travels down a pavement using her electric wheelchair.

Many of us have experiences of people saying “but you don’t look sick”, or “you’re just lazy” or “you seemed fine yesterday”. Many of us feel guilty if we have to let someone down who wants us to do something for them and we can’t, or we have to cancel plans at the last minute. This is so pervasive that many people feel the need to prove themselves. This can lead to changes in behaviour which might include vocalising symptoms you may not otherwise express. This can easily come across as an exaggeration even to the person expressing them, because we often get so used to carrying on despite our symptoms that saying them out loud feels like an exaggeration. It can also be assumed to be ‘over sharing’ by non-disabled people who find these topics uncomfortable. These concepts aren’t fully explored in the documentary.

Instead, they talk to another person who has been accused who says they posted their medical diagnoses purely to prove to their accusers that they were really sick. No one should have to share their private medical records to strangers to prove that they are unwell.

Ultimately though – there is no way of differentiating between the “rightly” or “wrongly” accused. The documentary doesn’t pay enough attention to how harmful these armchair diagnoses from anonymous non-experts could potentially be to the people accused of faking their conditions.

Conclusion

There’s a lot to be concerned about with Sickness and Lies, and a lot more that I haven’t even touched on. I think the documentary does have some valid things to say about disability, and the forums that accuse disabled people of faking, but they don’t expand on those topics adequately. Instead, the documentary tries to create ‘balance’ that it doesn’t provide adequate evidence for. It doesn’t provide adequate proof that chronic illness influencers are a thing, or that there is a specific problem with chronic illness influencers faking their conditions for fame, money or attention. The examples offered by the documentary aren’t appropriate illustrations of its central thesis. It doesn’t focus enough on the harm of illness faker subreddits, particularly those unregulated ones, nor does it spend any time on the important fact that most of the people accused of faking their illnesses are women – and, often women, who can’t work in conventional ways in order to support themselves.

By suggesting that there are people who fake their illnesses, the programme risks driving people to those subreddits where they might be exposed to more harmful, radical and toxic accusations of faking, and contributes to a problem where people with disabilities – particularly people with disabilities who are marginalised in other ways – are disbelieved and not treated with compassion.

Sickness and Lies conflates ‘faking illness’ with having a different illness to the one a person was diagnosed with, without any focus on the issues of misdiagnosis for people with chronic illness. Maybe people with chronic illnesses appear inconsistent in their symptoms because the illness they were diagnosed as having is not what they actually have. Maybe they have multiple conditions, and they choose not to share all of them or haven’t had all of them diagnosed. Maybe they are left without medical support for so long that they self-diagnose. And maybe, just maybe, some people really are faking it; and maybe they are faking because they have a serious, recognised psychological condition. If that is the case – don’t they also deserve compassion? Rather than vitriolic accusations, doxxing and threats.

‘Prevent Senior’ in Brazil accused of conducting unethical medical experiments on Covid patients

Natália Pasternak
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‘Prevent Senior’ in Brazil accused of conducting unethical medical experiments on Covid patients

According to O Globo, one of the most widely-read newspapers in Brazil, last February a town in the state of Amazonas, Itacoatiara, in dire straits due to the COVID-19 pandemic, received a visit from a “saviour” – the president of Samel, of a private healthcare company – bringing a miracle cure for the disease in the form of an experimental drug, originally developed for the treatment of prostate cancer, called proxalutamide. With the complicity of local politicians, the COVID-19 patients of Itacoatiara were led to sign misleading consent forms to become guinea pigs in an illegal, unsanctioned, unauthorised drug trial. Relatives of people who died there now use the word “extermination” to refer to what happened to their loved ones.

Less than a year before, in April 2020, right after Didier Raoult’s infamous paper on the miracles of hydroxychloroquine (HCQ) another private healthcare provider, called Prevent Senior, became one of the strongest advocates of HCQ.

Despite the name, the putative mission of the company seems not to be preventing people from staying alive until they become elderly, but instead taking care of senior citizens. They launched the first ethically-challenged, bumbling attempt to “prove” that medical fantasies based on shoddy science (in this case, HQC) could stop the pandemic.

This column already called attention to how several private healthcare companies pushed the use of the “covid kit”, a mixture of unproven medications for COVID-19, including different combinations of hydroxychloroquine, azithromycin, ivermectin, nitazoxanide, zinc, vitamin D, flutamide, etc.

Back in April 2020, Prevent Senior officers circulated the report of a “clinical trial” in the form a PDF file, together with a press release, stating that Prevent Senior was going to divulge “game changer” results that could save Brazil – and possibly the world – from COVID-19. The press release had an embargo date – a stern warning for journalists not to say anything before April 17th, 4 PM – and came with the promise that the PDF would soon be available in pre-print repositories and in the Public Library of Science (PLoS) journal.

The contents of the PDF revealed a sad excuse for a clinical trial of HCQ. It was full of flaws, both technical, and ethical. Despite the sky-high promises of the press release, the work has never seen publication or even “pre-publication” anywhere (not even preprint repositories accepted it). Subsequently, Prevent Senior officers have tried to rewrite history, saying that the PDF was but a collection of preliminary results, divulged in an unauthorised “leak” (maybe hoping that nobody will remember the loquacious press-release or the intense social media campaign the company’s cronies launched at the time).  

The so-called study lacked authorisation from Brazil’s National Ethics Commission (Conep). It was not a randomised clinical trial. Patients were not randomised into groups, but rather asked whether they wanted to receive HCQ or not. Those who agreed (approximately 400) were placed into the “treatment group”. Those who did not (200) were placed into the control group. No one asked the control group if they agreed to be part of a trial, or even asked them to sign a consent form.

Worse still, there was no diagnosis of Covid. People were included based on flu-like symptoms, but were not tested to confirm if they even had COVID-19. One can only imagine the number of flu-like symptoms likely to appear in an all-elderly patient base, as is the case of Prevent Senior. They had no idea what illnesses they were throwing their “experimental” kits at: hundreds of flu cases, along with common cold, allergies, bacterial pneumonia and sore throat cases might have made the “Covid” list.

The study was not double-blind, as every patient knew what they were taking, and every medical doctor involved too. The primary outcome was need for hospitalisation, so if everyone – including the person who’ll decide who needs to get hospitalised, a person who is in the study sponsor’s payroll – knows which patient is taking what, the results are likely to be totally biased. Of course, there was also no placebo group to ensure a fair comparison.

white tablets spilling out of a white container

These facts alone, at that time, should have been enough to completely discredit this so-called clinical trial. Even more so, once well-designed RCTs started to pile up, showing that HCQ does not work for COVID-19. The episode, which resembled much more a botched marketing campaign than a scientific trial, seemed to be over.

Last month, though, a group of medical doctors who used to work for Prevent Senior came forward, anonymously, to the Parliamentary Inquiry Committee (CPI) investigating the government’s responsibility during the pandemic, with very serious claims. They told the CPI – and the Brazilian press – that Prevent Senior never stopped using the “covid kit”. Quite the opposite, they pushed doctors to prescribe it, and even set a “goal”, like a sales target, for prescription. Doctors were reprimanded when they refused and feared losing their jobs. There was an internal guideline from the hospital, advising doctors NOT to inform patients and family about the drugs they were taking. Medical records were modified to hide deaths from Covid. That infamous PDF from April 2020? Besides being deeply methodologically flawed, it was also tampered with to exclude seven deaths in the treatment group.

Recently, even more serious accusations came to light. Pedro Batista, medical director of Prevent Senior, actually confessed to the CPI that the network’s guidelines were to change the ICD (International Classification of Disease) in patients’ records fourteen days after their first symptoms. This means that after fourteen days, even if a patient came in with Covid and eventually died, the information on their death certificate would state that they died of a complication, and not from COVID-19.

If these accusations are true, it means that Prevent Senior has been performing medical experimentation in humans without ethical clearance, any regard for human rights or, even, for the reliability of the data produced. This is too serious to ignore.

The Itacoatira case, then, is just one more entry in the log of Bolsonaro-aligned healthcare entrepreneurs playing god with the Brazilian population. Proxalutamide, at least, had some biological plausibility: it’s a hormone inhibitor. It works by down-regulating the number of cell receptors that aid in the virus entry to the cell. This has been demonstrated in prostate cells, in vitro, but never in respiratory cells. So far, our best knowledge is that the drug doesn’t work for COVID-19. And even if it does – after World War Two, the international community established rules for experimentation in humans for a reason. We shouldn’t forget the rules, nor the reason.

One of us (Natalia Pasternak) was called to depose at the CPI as an expert in science communication. When asked by one of the Senators why she had signed a Jewish manifesto for democracy and against the government, she replied that as a grandchild of the Holocaust – her grandfather, a survivor – it is our duty to never forget what authoritarian governments can do to people.

Prevent Senior is suspected of having close ties to the government – recently leaked videos show executives from the company and scientists who consulted for it sharing “preliminary results” of their “kit covid” experiments with government officers . History already showed us what can happen when authoritarian and fascist governments get too cozy with private money and society goes on as if it was business as usual.

What’s happening in Brazil right now is not business as usual. It is not just a bad government and some “unavoidable” corruption. It is not just private healthcare companies doing dubious marketing stunts. It is about ethics and human rights. And this too can’t be forgotten.

Placebo inhalers can’t treat asthma: another ‘powerful placebo’ myth busted

Mike Hall
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Placebo inhalers can’t treat asthma: another ‘powerful placebo’ myth busted

If patriotism is the last refuge of the scoundrel, then the placebo effect is the last refuge of alternative medicine.

When backed into a corner with nowhere else to go, and challenged by data which demonstrates their remedies are no more effective than placebo, alternative medicine practitioners will cry ‘but we know placebos are powerful, so that means it works!’

This claim isn’t limited to just purveyors of nonsense medicine and their fans. When skeptics give public talks on homeopathy, even an audience of skeptics will contain some who respond: ‘homeopathy is just a placebo, and we know placebos work, so homeopathy works too.’

But the primary evidence for the ‘powerful’ placebo effect is far weaker than most people realise. In my previous article, I mentioned the 2010 Cochrane review on placebo effects. This examined 202 clinical trials which featured both ‘placebo’ and ‘no treatment’ arms, to examine how the placebo patients fared versus their untreated counterparts.

The review found no evidence that placebos had important clinical effects. Such effects as were found were limited to patient-reported outcomes and were difficult to distinguish from biased reporting.

We know from the field of psychology that patient-reported data can be unreliable. Response Bias, or subject-expectancy effects, can lead patients to report what they think should be happening, rather than what really is happening. Experimental subordination, or Demand Characteristics, can lead patients to report what they think their clinicians want to hear. Recall Bias can mean patients do not accurately report a change in their condition from baseline, because they misremember how they felt at baseline.

This could be uncharitably characterised as ‘everybody lies’, but the reality is likely more subtle and patients may not even be aware they are flexing the truth in their self-reports, or that even subtle flexing can skew the results, especially in smaller studies.

An excellent illustration of the unreliability of patient-reported effects is the paper Active Albuterol or Placebo, Sham Acupuncture, or No Intervention in Asthma, published by the New England Journal of Medicine in 2011.

Forty-six patients with mild-to-moderate asthma were recruited to the study and, over the course of several visits to the clinic, each was given one of four interventions in a random order:

  1. a standard albuterol (salbutamol) inhaler;
  2. a fake ‘placebo’ inhaler;
  3. sham ‘placebo’ acupuncture; or
  4. no treatment

This was a cross-over study, so patients received twelve interventions in total (each of the four, three times, over twelve sessions), and were asked to score the improvement in their asthma symptoms following the intervention – from 0 (no improvement) to 10 (complete improvement).

The study found that patients using the real salbutamol inhaler reported a 50% improvement from baseline, and patients receiving no treatment arm reported just a 21% improvement. Astonishingly, patients using the fake inhaler reported a massive 45% improvement from baseline, almost as large as salbutamol.

Graph representing the percentage subjective improvement described in the text above.

A startling result, I’m sure you’d agree. A fake inhaler, with no medicine in it, improved asthma symptoms almost as much as salbutamol. In fact, there was no statistically significant difference between salbutamol, the fake inhaler, and the sham acupuncture. A powerful placebo indeed, and let’s be honest, this is bad news for salbutamol, which according to these data is no better than placebo.

But that’s just the data gathered when the patients were asked how they thought they were doing. The study did not rely solely on that measure but also recorded an objective measure of lung function: Forced Expiratory Volume (FEV) or, how hard you can blow into a tube.

The FEV data tell quite a different story from the patient self-reports. Again, patients using salbutamol had an objectively measurable 20% improvement in lung function, as measured by FEV. Patients getting no treatment had much smaller 7.1% improvement. However, using this objective measure, the placebo inhaler showed only a 7.5% improvement and the sham acupuncture only a 7.3% improvement, neither of which is statistically different to no treatment.

Graph depicting the data on objective change in FEV1 as described in the text above.

There was no placebo effect, when lung function was objectively measured. The ‘placebo’ interventions had the same effect as no treatment. So why did patients report a large improvement with the fake inhaler, when we know their condition was the same as doing nothing at all?

There was no placebo effect, when lung function was objectively measured. The ‘placebo’ interventions had the same effect as no treatment.

The answer is bias. When you’re taking part in a clinical study, there is a strong social pressure for patients to say what they think they should. They’ve taken the inhaler, they should be feeling better, right? Maybe they even convince themselves they are feeling better. They may misremember how bad they felt when they arrived. So when a doctor asks them to rate how they’re feeling, that’s what they say: “I’m much better doc, thanks”.

They aren’t lying, certainly not maliciously. They genuinely believe that they are or will be doing better, even though we know from their lung function tests that they haven’t improved any more than if we had done nothing. There is no magic here, no demonstration of the amazing power of the mind over the body. Just psychology and statistics.

To the extent that we observe real objective clinical effects, they don’t look to be related to the placebo. To the extent we receive subjective clinical reports of placebo effects, they look very much like biased reporting.

In this case we could dig deeper, and use objective data gathered at the same time to assess each intervention without that subjective bias. But what if no objective measure was available? For outcomes like pain we have only patient reports to go on. We cannot independently and objectively assess how much pain a patient is experiencing.

This isn’t an argument against the use of subjective endpoints in clinical research. Quite the opposite; in some cases we have no alternative. We must depend upon subjective reports when we have no other choice. But we must also do so with recognition of their limitations and their vulnerability to bias.

Building a monument to the placebo on those kinds of unsteady foundations is only going to mislead both patients and clinicians. Taking the subjective data from this study at face value, we could have reasonably concluded that salbutamol doesn’t work, and gone on to deprive asthma patients of an effective intervention, potentially putting lives at risk.

The curious rise in the popularity of osteopathy in France

Edzard Ernst
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The curious rise in the popularity of osteopathy in France

These days, I live much of my time in France – Brittany, to be more precise – and I am often baffled by the number of osteopaths and the extraordinarily high level of acceptance of osteopathy in this country. The public seems to believe every word of the nonsense osteopaths claim and even most doctors seem to have given up objecting to their almost invariably unfounded claims.

The website of the Institute of Osteopathy in Renne is but one of many examples. The Institute tells us the following (my translation):

The effectiveness of osteopathy is based on the practitioner’s palpatory precision. It requires training that is essentially oriented towards diagnostic and therapeutic practice. The acquisition of this osteopathic know-how is done by learning:

– Anatomy, physiology and kinesiology of the human body
– The semiology of alterations in the state of health
– Specific tests and assessments on all parts of the body …

Osteopathy is a primary care profession: the patient consults the osteopath without a medical prescription. By taking a history, including the patient’s background and reason for consultation, the osteopath carries out check-ups and clinical tests in order to establish an appropriate osteopathic treatment …

In addition to back pain, the osteopath can act on functional disorders of the digestive, neurological, cardiovascular systems or conditions related to ear, nose and throat. Osteopaths can promote recovery in athletes, relieve migraines, musculoskeletal disorders such as tendonitis, or treat sleep disorders. Less known for its preventive aspect, osteopathy also helps maintain good health. It can be effective even when everything is going well because it will prevent the appearance of pain. Osteopathy is, in fact, a manual medicine that allows the rebalancing of the major systems of the body, whatever the age of the patient and his problems. The osteopath looks for the root cause of your complaint in order to develop a curative and preventive treatment.

Who are osteopathic consultations for?

Osteopathic consultations at the Institute of Osteopathy of Rennes-Bretagne are intended for the following types of patients and pathologies:

BABY / CHILD – GERD (gastric reflux), plagiocephaly (cranial deformities), recurrent ENT disorders (sinusitis, ear infections…), digestive, sleep and behavioural disorders, motor delay, following a difficult birth…

ADULT – Prevention, comfort treatment of osteoarthritis, musculoskeletal pain, functional abdominal pain, digestive disorders, headaches, dizziness, postural deficiency, facial pains…

PREGNANT WOMAN – Musculoskeletal pain (lumbago, back pain), digestive disorders, preparation for childbirth, post-partum check-up.

COMPANY – Prevention and treatment of MSDs (musculoskeletal disorders) linked to workstation ergonomics, stress, pain due to repetitive movements, poor posture at work, etc.

ADOLESCENT – Scoliosis, prevention of certain pathologies linked to growth, fatigue, stress, follow-up of orthodontic treatment.

SPORTSMAN – Musculoskeletal pain, tendonitis, osteopathic preparation for competition, osteopathic assessment according to the sport practised, repetitive injury.

A model of a spine

In case you are not familiar with the evidence for osteopathy, let me tell you that the vast majority of the claims made in the above text is not supported by anything that even vaguely resembles sound evidence.

So, how can we explain that, in France, osteopathy is allowed to thrive in a virtually evidence-free space?

Osteopathy started developing in France during the 1950s. But the breakthrough came only in 2002, when osteopathy received legislative recognition, and today, it is booming; between 2016 and 2018, 3,589 osteopaths were trained in France. The regulation of osteopathy differs from that in the UK. In France, osteopaths can qualify with a Doctorate in Osteopathic Medicine (DO) and become osteopathic doctors, osteopathic physiotherapists, osteopathic nurses, osteopathic midwives, osteopathic chiropodists, or even osteopathic dentists.  

Of a total of 29,612 professionals practising osteopathy in 2018, there were 17,897 ‘DO’ osteopaths and 11,715 ‘DO’s belonging to other health professions. The number of professionals using the title of osteopath has roughly tripled in 8 years (11,608 in 2010 for 29,612 in 2018). There are currently around 30 osteopathic schools in France, and an estimated three out of five French people now consult osteopaths.

But this does not stop my amazement; on the contrary, it only increases it. And it fails to answer my question as to why osteopathy is allowed to thrive in France, while multiple rigorous studies conducted by French investigators confirm that osteopathic spinal manipulation is a placebo therapy.

To be honest, I do not know the answer. In case someone else does, please let me know.

Eurabia, the Kalergi Plan, and the Great Replacement

Thiago Vahia Malliagros
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Eurabia, the Kalergi Plan, and the Great Replacement

I first came across the conspiracy theory I want to discuss today in a highschool Geography class. While talking about Europe, my teacher brought up the declining birth rates of the European population, and the increasing numbers of muslim immigrants. Then he showed me a map where the names of European countries had been changed to “Islamic” versions: “Emirates of France”, “Emirates of Spain”, “Sheikh of England” and so on. As a young teenager my reaction was of disbelief and relief, partly because I didn’t believe it could ever happen, and partly because my teacher at least let me know this odd map wouldn’t appear on the exam.

Thankfully, the map was never brought up in class again, though the conspiracy theory which inspired it has shown up many times since, including playing a role as one of the key narratives during the referendum on the UK’s separation from the EU. Most notoriously, the campaign saw the use of propaganda urging British citizens to take control of their own borders to stop the “massive flow” of immigrants that threatened to change the fabric of the country forever. According to the propaganda proudly presented by far right politician Nigel Farage, Britain was at “Breaking Point”.

There were other reasons and factors which led to the vote to leave the EU, of course, and this isn’t the place to touch on the causes of Brexit in any major detail. However, that narrative of a country being overrun by migrants is a fear that is derived from the conspiracy theory I do want to discuss today.

What is important is to understand how mainstream this theory has become, and how normal it is to claim to believe in it. Far right parties in Europe routinely reference this conspiracy theory on their platforms, promoting a fear that swarms of migrants are coming to steal and rob people of their belongings and their countries.

I first encountered this theory under the name Eurabia, but it also goes by another name:  The Great Replacement. The aim of the Great Replacement narrative is always the same: to evoke this fear of the predminantly white areas of the world being overrun by brown people. For Europe, the end goal, it claims, is to create a new Arabia, or to see all the white people being replaced by Arabs, North Africans or any other predominantly non-white group.

According to believers in the theory, world leaders – or a secretive group behind the world leaders (you won’t be surprised to hear that the secret group is often claimed to be Jewish in origin) – want to replace the population of Europe with Muslims/Arabs (obviously, while Muslims are not an ethnic group, the conspiracy language treats them as a unified block with heavy focus on the religion as a defining part of the race).

First, you might wonder, why would They want this replacement? To answer this, some conspiracy theorists point to Richard von Coudenhove-Kalergi, one of the founding fathers of the Europe Union, and will cite him out of context to claim that the plan for the EU since its very inception was to have a group that would be easier to control. In particular, they’ll point to a passage in his book Praktischer Idealismus, in which he states:

The European man of the future will be of mixed race. Today’s races and classes will disappear owing to the disappearing of nations, time, and prejudice. The Eurasian-Negroid race of the future, similar in its outward appearance to the Ancient Egyptians, will replace the diversity of peoples with a diversity of individuals

However, when put into proper context, Karlergi’s talk about the mixed race future of Europe isn’t particularly a reference to white people mixing with people from other racial groups; he was writing in 1920, when people considered “Teutonics” and “Irish” to be different racial classes. Karlergi’s references to a future belonging to mixed races is as much a reference to a mix of those predominently-white ‘races’. What’s more, according to Kalergi this process would happen naturally over time as borders and barriers lessened – it was never a plan he proposed should be enacted via force. Kalergi was a European nationalist through and through: he believed that unless people from across all Europeans nations banded together, Europe would be surpassed by other major powers. 

The Kalergi Plan is worth more analysis, because it encapsulates everything about the Great Reset theory. It has the underlying antisemitism – Kalergi is often referred to as a “Judeophile” by conspiracy theorists. It enables the hatred of the EU, based on the myth that one of it’s founding fathers was literally plotting the destruction of Europe from the start, through the destruction of European ‘whiteness’.

An EU flag - blue with yellow stars in a circle - fluttering in the sky.

Somewhat ironically, the European ‘whiteness’ believers fear is at risk of destruction is actually a concept that was created very recently in history. For a large period of history, Irish people were not considered white, while Portuguese and Spanish people were (and still are) considered to be a lower form of whiteness in the eyes of racist groups. ‘Whiteness’ is a fluid and not very well established concept that has been adapted and twisted to suit its use. When it comes to this conspiracy theory, the concept is used to separate ‘us’ and ‘them’: with ‘us’ being ‘white people’ and ‘them’ being the brown, black and otherwise non-white brought in to destroy white societies.

While talk of the Kalergi Plan often takes place in niche and covert channels of communication, its themes have cropped up in more mainstream places, such as in the dystopian fiction novel The Camp of the Saints. First published in 1973, the book posits a France overrun by mass migration from India and the developing world. In the novel, migrants take over Europe and the ‘white’ world, who are too morally weak to resist the advances, leaving Europe to its destruction.

The book embodies and illustrates all the themes of the Great Replacement theory, depicting a First World too accepting of immigrants, unable to see that they are the authors of own their doom; that the developing world simply pillages and destroys everything in its path, whose migrants are impossible to contain if given an inch. Crucially, the book paints a paranoid picture of a leftist political movement keen to join with the migrant forces in order to take down the west.

The Camp of the Saints was published fifty years ago, one illustration of the fear of loss of home and culture, particularly by a foreign entity that is culturally and physically different from the natives. This fear of the foreigner recurs throughout history, providing societies with a perfect scapegoat when times are unstable and situations look bleak. Its release in 1970 coincided with the end of decolonisation and the economic crisis; in 2010 we saw an even stronger economic crisis take hold. It may be little surprise, then, that in March 2011 The Camp of the Saints returned to the bestseller list in France. Conspiracy theories always repeat.

Further information

If you’re keen to understand more about this conspiracy theory, I highly recommend this Youtube video from Shaun about the Great Replacement and this Three Arrows video about the Kalergi plan. These videos helped me in the research for this article, and delve deeper into topics I touch on only briefly.

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Expert skeptical analysis of pseudoscience, conspiracy theory and claims of the paranormal.

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