Professor Paul Garner was delighted to recover from long Covid. Then the death threats began

It was August 2021, and an email dropped into Paul Garner’s inbox. “We are a group with many people and organized. We have fire arms, explosives and all what it takes to take you out,” the email read. 

Garner is an epidemiologist. Not a gun runner, drug smuggler or indeed connected to any kind of criminal underbelly where threats of explosives and guns might be par for the course. Nor is he a whistleblower on some kind of shady enterprise that might be wishing to conceal a dark truth. He’s an epidemiologist, well known in the field for his distinguished career at the Liverpool School of Tropical Medicine, aiding the fight against infectious disease. More recently though, he’s made headlines for his recovery from long Covid.

The email continued: “You both have blood on your hands. And we are not scared to take measures since we got NOTHING to lose. Stop harming ME patients! So you have a chance now; withdraw or take the price for it. We know where you live, where you work and about your loved ones.” Garner has choice words for his anonymous adversaries: “I have been used to abuse before, but the level of abuse here — it’s like the activists are all on crack!”

The “activists,” in this context, are members of the ME community, which refers to Myalgic encephalomyelitis, or chronic fatigue syndrome. And while it goes without saying that not all ME activists were sending Garner death threats, the above was one of several he received, some of which he has shown The Post. Another had a picture attached of a man holding a machine gun and read “Don't u ever dare to talk about Long Covid or CFS again”. He showed a member of the security team at work, who replied: “I wouldn’t worry Paul, that’s quite a specialist weapon, they’d struggle to get the ammunition in this country.”

The strange tale all started when Garner contracted Covid-19 in 2020 and it knocked him for six. Not just the initial illness, which was so severe he says he genuinely felt like he wasn’t going to survive it, but the aftermath too, which left him crippled for months with a debilitating medley of symptoms: calf pains, tinnitus, dizziness, arthritis, an inability to think straight, extreme emotions, an inability to even speak at times, random crying and so on. There seemed to be no way out. “I was left in limbo land,” he says.

In a series of blog posts for British Medical Journal Garner outlined what he was going through, describing a “game of snakes and ladders” where bouts of recovery would be undermined as he crashed back into illness. A massive piece in the American publication The Atlantic in 2020 entitled COVID-19 Can Last for Several Months (before the term long Covid was even in use) cited Garner’s tale and talked about how “long haulers”, sufferers of ongoing illnesses usually linked to chronic fatigue, had often been dismissed by medical science. From his home in St Michael’s Hamlet he appeared on international news channels like CNN to tell his story.

He became a public champion for ME sufferers, someone a community of people who have long-since felt overlooked and even sneered at believed would hold the torch for them. He wrote in an early blog that health services are “largely institutionally prejudiced against people with chronic fatigue and ME, and in some cases these attitudes are framing the service response to covid-19.” “You are giving a voice to all of us sufferers,” said one of hundreds and hundreds of replies. 

In the Atlantic piece, Garner was presented almost as a rallying voice. As he tells me, he had initially turned to NHS websites after realising his Covid symptoms had not subsided in the expected timeframe, and found their advice to be “mostly useless”. An occupational doctor thought he was making it up, which led him into the arms of the ME community in the form of online forums, Facebook groups and many email exchanges. “Well before the pandemic, the health-care profession had a long history of medical gaslighting — downplaying a patient’s physical suffering as being all in their head, or caused by stress or anxiety,” the Atlantic piece reads, later adding: “Garner’s descriptions of his illness are similar to those of many long-haulers who have been taken less seriously.”

Then, on 25 January 2021, Garner wrote another blog for the BMJ. It would be his last, entitled: “Paul Garner: on his recovery from long Covid”. It described how he had begun to disbelieve purely biomedical explanations for his condition, and — after speaking to a PhD candidate in psychology from Norway who had “completely recovered” from ME/CFS — he had embraced a new approach: that he could affect his own condition with his conscious mind. He undertook a dedicated rehabilitative programme to “[retrain] the bodily reactions with [his] conscious thoughts, feelings, and behaviour”. It was a remarkable turnaround. He describes ditching the doom and gloom of patient Facebook pages and embracing “joy, happiness, humour, laughter”. He soon found himself undergoing military fitness training in Sefton Park.

To Garner, his ordeal had been a matter of his brain having not been sending and receiving the right signals, a situation which, with a new attitude and a lot of hard work, he could effectively think his way out of. In other words, the mind takes charge of the body. The response to his blog was immediate, massive and — with the ME community — very, very negative. 

“Was Paul Garner really sick or did he mimic ME symptoms and then miraculously be healed by LP?” reads one tweet of many on that theme. A belief spread that Garner’s initial ill health and numerous media appearances about it were falsified and there are countless posts dedicated to scrolling back through his social media output and seeking to delegitimize his tale. Several shared images of him scuba diving during his supposed illness, as if to suggest it was fabricated, even though Garner had clearly stated in his blogs that he had been through periods of “boom and bust”, temporary recoveries and relapses into ill health. Others online suggested that he might be permanently brain damaged by his illness, and that was driving his supposed attack on the ME community. 

Much of the anger related to how Garner had supposedly turned on the ME community. His triumphant tale of recovery seemed on the face of it to be quite critical about the people who had previously embraced him, and vice versa. He referred in the blog to the ME community sending him “unsolicited emails about mast cell deactivation, biological causes of my illness, and [telling me] to rest.” He added: “I feel that I have looked down the barrel of the ME/CFS gun and disarmed it.”

When I sit down at his house to speak to him, his unwillingness to make concessions is striking. He speaks with something approaching disdain for those on the other side of the fence, describing the “activists’ who have turned on him as like “Trump-supporters”; bound so tightly to their tribe that their personality is formed by it, turning viciously on anyone who opposes their views. At other points he calls them “spreaders of misery” with continual stories of ill health. At one stage the UK Long Covid Doctors Facebook page demanded to the administrators he be thrown out of the group (he wasn’t in the end). “Which is bonkers,” he says.

“Of course,” he continues. “I have a lot of sympathy for everyone in the ME community, what I went through was hell and that was a few months. With some of them it’s years and years”. He also emphasises, many times, that what worked for him won’t work for everyone. Nonetheless, it’s clear this has become an ethical battle now for Garner. “These people are blocking routes to recovery for patients,” he says.

Much of the narrative feels like one most will be familiar in current times: a cancel culture story. He doesn’t use that word, but he does use “deplatformed” twice, a word you’ll hear a lot in debates around trans rights or race, where a person perceived to hold offensive views is blocked from public debate. It’s a story we hear over and over: the outspoken academic, the angry activists, the former believing the latter is attempting to crush non-conformist opinion, the latter believing the former is using their platform to inflict harm on vulnerable communities, and is even revelling in doing so. 

He says a senior doctor told him to withdraw his recovery story from the BJM, The Independent commissioned him to write about it then pulled the piece in “fear of activists”, The Guardian eventually took the piece on — it’s here — but required heavy editing and, after he was invited to do a webinar with the Royal College of General Practitioners, activists attempted to prevent his involvement and he had to remove all references to CFS from his talk.

Where Garner’s story perhaps deviates from the typical cancel culture tale, apart from its unique subject matter, is in the death threats he started receiving. After they began, the HR team at LSTM offered him a councillor, which he says he didn’t need but nonetheless found the experience frightening. The police put his number on a special quick-response notice and Interpol even got involved at one stage as many of the threats came from Europe. “It was validating that they all actually took it seriously,” he says.

A fascinating long-read in The New Republic entitled “We Might Have Long Covid All Wrong” piqued my own interest in this topic. It starts with the story of Maxanne McCormick, a woman from Colorado who was diagnosed with degenerative dementia in 2011 and gradually became unwell. She eventually lost the ability to walk or speak and began researching methods of assisted dying. Then, on one trip to a specialist research hospital where she had enrolled in a data-gathering study, she was told by the team they didn’t think she had degenerative dementia at all, rather Functional Neurological Disorder: “a problem with brain processing that can result in significant suffering throughout the body without corresponding tissue damage”. 

Maxanne began to retrain her brain back to functionality through rehab tasks, but her outspokenness about her recovery caused anger among people with ME, CFS and long Covid, who felt it was effectively being suggested that their conditions exist entirely in their heads. It would be hard for me to distil the rest of the article into a few sentences — it’s long — but the gist is that illnesses like long Covid might be explained by a complex interplay of psychosocial and biological factors, that the mind can trigger biochemical reactions in the body, potentially in the form of patterns of thinking that can become self-fulfilling. As in: if the brain expects the body should be feeling one way, it interprets signals as such. The piece received substantial backlash, including an open letter signed by 200 journalists, researchers, physicians, and people living with long Covid saying it made “gross misstatements about the nature and underlying mechanisms of Long Covid and ME/CFS”.

Garner explains the basic mind-body connection: “the brain has an alarm system which can cause physical, biomedical changes,” he says. An example: “If you suddenly saw a tiger, your heart rate would shoot up. That’s your brain perceiving something and your body reacting. It's the same with pain. This is primal, deep in the nervous system. It goes back to when we were reptiles in a swamp.” These are natural protective mechanisms. 

He explains that it’s more complex than a basic mind/body link though. In the case of long Covid, for example, the initial illness is real but the brain then becomes trapped in a perpetual cycle, misinterpreting signals, in a sense tricking itself that the illness is still present. The protective mechanisms become out-of-kilter, as he puts it, “like a thermostat gone wrong”.

Garner describes his run in with ME activists as like nothing else he’s experienced in his career. Medical science can be a contentious thing, public figures like Garner espousing a theory could have the capacity to change perceptions of an entire community of people suffering from an illness. He can note a few colleagues that have had similarly dramatic fallings out, but nothing quite on the level of what he went through, and continues to. Of course, many ME patients continue to suffer enormously with no end in sight, despite having tried all the very same things that set Garner free. It’s not hard to imagine how — given the bravura nature of it (scuba diving and military fitness) — his tale might provoke people. 

It hasn’t all been criticism, though. BBC journalist Lucy Adams cited Garner’s recovery and support in email exchanges as pivotal in her own 16-month battle and debilitating long Covid. “In November he emailed to say he was better,” she wrote. “If he could get better I figured that meant I could too.” There are a number of sites — controversial to many — that document similar approaches to his, like Recovery Norway and Living Proof. Both sites focus on recovery stories which they believe are excluded from narratives around chronic fatigue-related illnesses, often based around changes of mindset. The former has the disclaimer. “Recovery Norway does not make any claims about how many can get well from strategies like the ones our members have used, although we do think they are evidence that it is possible.”

Pariah though he may be in a community that once embraced him and held him up as a hero, Garner is now champion of a different one. He receives many thankful emails from patients who credit his own activism — if you can call it that — for aiding them to recovery. “If I only got one email like that a week, that would be enough,” he says. The impact the ordeal has had on his own career is negligible, he’s now retired, but after a lifetime of fighting against illness he’s now one of the most controversial names in the field. He doesn’t care, he says. His view is clear: “the worst thing you can do is go to bed”.