Can Long-Covid be Cured with the Mind: Expert Patient or Nutty Professor?

Guest authored by Dr. Keith Geraghty
I am a research fellow working from the University of Manchester Centre for Primary Care. A major focus of my work is on medically unexplained symptoms and illness. I promote evidence-based medicine and psychology, so like a detective, I spend a lot of my time discerning ‘good’ and ‘bad’ data and science, particularly in the field of health psychology. I am currently researching ‘Long-Covid’, the name giving to a syndrome of lingering symptoms post-Covid infection. The Office of National Statistics recently reported an alarming figure that 1.1 million people in the UK may be experiencing Long-Covid, with symptoms lasting anything from a few weeks to a year or more.

‘Weird as Hell’: From Near Death to Diving

Perhaps the most famous of all Long-Covid patients is Professor Paul Garner at Liverpool School of Tropical Medicine and a founding member of the Cochrane Collaboration, a group that seeks to provide credible answers to the many questions impacting modern medicine. Garner began blogging about his struggle with Covid that he contracted on the 19th March 2020 in the British Medical Journal website. His blogs continued through until January 2021, whereby he details his experience of suffering Long-Covid for 7 months. Garner has done considerable amounts of media engagements, an interview on BBC Newsnight, live interviews on BBC Breakfast, interviews for radio and TV in Australia, CNN, media in the US, Europe and beyond, newspaper articles, blogs and live zoom meetings with senior NHS clinicians, regaling of his personal story. Garner has done more media on his Covid experience than most academics might do over the course of their entire careers.

Garner’s story resonated with many doctors and health professionals suffering from Long-Covid, many of whom had to stop working due to lasting symptoms like extreme fatigue, pain, breathlessness and cognitive complaints. What a great story, a doctor and professor going out there telling the world that Long-Covid is real and that recovery takes time – only problem, my fact detector hit high alert when a patient sent me a picture of Professor Garner on a diving holiday in Grenada in November 2020 during the midst of the pandemic and around the time of the UK travel lockdown, and smack bang in the middle of his media stream.

Stepping into a ‘Parallel Universe’: From Near Death to Diving in Grenada

Wow I said: “what a remarkable recovery story, to go from near death’s door to diving in the Caribbean sea”? I had listened to the professor on BBC Breakfast in January 2021 and he made no mention of his trip abroad, and even more curiously, I had listened to a BBC Radio Leeds interview he gave on 5th of October 2020 where he stated he had ‘only started to feel a bit better in the last week or two’. Could someone with Long-Covid, who said they could hardly get out of bed for many months, go from that level of poor health to being able to dive in the Caribbean within the space of a month? I wanted to know more

Piecing the Garner story together required a notepad, a pen, and some of the type of head scratching you might see on an old episode of the Columbo detective show.

He Could Control His Brain, he said

I don’t doubt the veracity of Professor Garner’s Covid story, his symptom profile fits the classic presentation, but he does admit that he has never had an actual positive Covid test. This is not unusual – many Covid sufferers do not get tested or attend hospital. My interest in the Garner story peaked when I read a number of interviews with him where he said he put his recovery down to being able to ‘control his brain and stop fatigue and alarm signals to his body’. Essentially, Garner now claims that be cured his Long-Covid using the power of his mind. In his Sept 4, 2020 BMJ blog, Garner wrote:

“Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this was not the end; it was the end of the beginning.

Garner often uses metaphors to describe Long-Covid, such as ‘like a cricket bat that hits you over the head’ – an apt but perhaps ornate wording to use for a professor of infectious diseases who must have seen many hundreds of patients with similar post-infectious symptoms over the years. So, by early Sept 2020 Garner had a dramatic fall in symptoms but some lingering issues. Like detective Columbo, I noted the importance of the timeline.

He recounts doing a 10-minute bike ride prior and having some symptom flare. This is commonly known as post-exertional malaise and is often seen in post-infectious illnesses, such as chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) – and illness I research. At this point, Garner talks about his illness resembling ME/CFS. His concern about this would be well-founded, many ME/CFS patients report that their illness started after an infection, and while some recover relatively quickly, a large percentage go on to suffer debilitating symptoms for years.

So, how does Garner go from Long-Covid and possible ME/CFS in September to full recovery in October and diving in November?

He Receives a ‘Magical’ Phone Call

The answer, according to Garner, lies in a mysterious phone call he received from a psychology coach in Norway, whom he claims helped him overcome his fear of exercise. He writes in one interview 12 March 2021:

Later, she asked what I most feared. I said payback and relapse from exercise, which was making me sad as I love exercise. So she suggested we both went for (separate) bike rides, and left the video call running then meeting back at the computer. She would help me deal with any side effects from the cycle ride. I went out on my bike, a gentle 20 minutes, and I was just overjoyed. I was suddenly out doing what I love which I’d stopped myself doing because of all this fear and there was absolutely no kickback. Then I used graded exercise therapy, which is often recommended for chronic fatigue. I started with 20 minutes a day for a week, then up to 30 minutes in the second week. After two weeks, I was back at my military fitness class in the park.

So, Garner’s symptoms had subsided in September and he was doing 10-minute bike rides and sometime in October he was able to have no symptoms after a 20-min bike ride and a magical phone call from his coach. Within 2 weeks he was back doing full military exercises in the park – a truly remarkable tale. Garner writes that he was a fitness fanatic pre-Covid infection, thus he was delighted to be back at his local park doing regular exercise.

Can the Conscious Mind Heal the Body?

Garner says in his January 2021 BMJ blog that,

I was asked, “are you open to the idea that you can have an impact on your symptoms with your conscious mind?” and that “This opened the door that led to my recovery”.

I returned to my notebook: Garner had written to an ME/CFS patient in early October 2020 stating that he did not have the classic ME/CFS symptom of orthostatic intolerance (difficulty standing) and that he was doing 5km walks daily, but was fearful of increasing the distance. In a TV interview Garner gave to Channel 5 news aired 23rd of September, Garner can be seen walking relatively long distances around Liverpool docklands and getting a local ferry, yet in the same interview Garner reported that he still felt ‘disabled by Long-Covid’. Garner’s perception of his disability is not in question, my only observation concerns the fact a person doing 5km walks daily would not generally meet any criteria for ME/CFS, as Garner claimed, and the physical improvements around Sept-Oct appear to have occurred prior to his meeting with the mysterious Norwegian psychology coach that led to his statements that he overcame Long-Covid using his mind.

Garner’s claims about the power of mind to heal illness are not new in my field of research; the only question is what evidence do we have for such claims. In this case, we have the personal account of one patient’s story, albeit a very influential and prominent patient who holds centre-stage in many media reports on Long-Covid and a doctor who seems to be at the epicentre of professional forums with NHS leaders about how best to treat Long-Covid patients. Garner has come out in favour of a controversial treatment called Graded Exercise Therapy (GET), a treatment that the National Institute of Health and Care Excellence (NICE) UK plans to drop as a recommended treatment for ME/CFS. Garner has been critical of this decision.

Healing over Time – Naturally

What is most remarkable to me as an evidence-based medicine and health psychology researcher is the fact a professor of infectious diseases and expert in evidence-based medicine, makes scant mention of the fact that the vast majority of Covid sufferers will recover in time, even those who suffer Long-Covid. Research by Kings College London suggests that around 10-15% will suffer lingering symptoms lasting longer than 6 weeks, but again by the end of year 1 this percentage will be vastly lower.

The human body takes time to recover from infections, people recover at different rates and humans experience illness and symptoms in different ways. Covid-19 is a novel human disease, and we do not fully understand how it impacts health, but early data suggest the majority of people will recover. However a significant but smaller percentage of patients may well continue to suffer longer term health complications. Eventually most people recover simply by the body’s own healing powers of homeostasis.

So, why does Garner put his recovery down to the power of his mind, rather than the power of his body and cells, which operate largely outside of his conscious control?

Believing the mind can cure Covid is perfectly fine as a belief, some people believe crystals can help heal illness, others believe in the power of prayer. I make no disparaging comment on anyone’s beliefs, but Professor Garner is not a lay person. Since his miraculous recovery he has sat on high-level medical meetings with NHS clinicians regarding the best way to manage patients with Long-Covid. Garner’s story and position carry weight – he is no ordinary patient, hence why media outlets chose his story above that of many other sufferers. Therefore the details of his personal case-study and beliefs are of importance.

Mistories

Garner, like all of us, is at the mercy of one of the strongest biases in everyday experience: ‘subjective validation’. The mind-body connection is a fascinating and complex research topic, but the brain is also part of ‘the body’ – such a distinction is often missed. Being ill causes anxiety, and a global pandemic that has killed many people impacts collective anxiety. Being struck down by a mysterious virus, must be a terrifying experience, many people will require medical and psychological support, but it’s important that personal anecdote does not become factual dogma – that is why ‘evidence-based medicine exists’.  

In Garner’s January blog he uses yet another metaphorical soundbite when he says he ‘stared down the barrel of ME/CFS and disarmed it’. Garner claims he met the Canadian Consensus Criteria for ME/CFS. This Criteria requires at least 6 months unexplained fatigue and 5 other symptoms that are not associated with an acute or linked illness. Garner was suffering from Covid, this explained his symptoms, and he recovered within 6-7 months, so he either never had ME/CFS or met the criteria for 1 month before full recovery. This point exemplifies the potential harm of taking one person’s story as ‘credible evidence’ – evidence-based medicine exists to overcome such bias. Yet, Garner continues to tell media outlets and health care officials that exercise is a good treatment for both ME/CFS and Long-Covid and he continues to promote his story of mind-over-matter. In a November interview Garner did with Swedish TV, a reporter asked him how get got out of bed to do military exercises in the park, he states he ‘Got up out of bed, relaxed, thought about nice things and jumped on my bicycle and went off to fittness class…and felt better that evening’

Symptoms ‘Evaporated’ Overnight

The implicit message Garner promotes is that others with ME/CFS and Long-Covid, many being health professionals like doctors and nurses who’ve been unable to recover fully since contracting Covid working on the frontline of the NHS, should just stop being afraid of exercise, relax and get outside. Such a narrative grossly distorts the reality of the diseases ME/CFS and Long-Covid, minimises the role of immune and other physiological dysfunction in these disorders, and stigmatises sufferers as anxious hypochondriacs – symptoms are real, but not related to anything biological. His underlying claim is that symptoms are manifestations of fearful thoughts that can be overcome with the mind. This is not a scientific explanation, it’s one man’s story, it won’t fit all patients, it may be dangerous for some patients to ignore symptoms and head to the park for exercise, it’s also insulting to many others, both ME/CFS and Long-Covid patients, doctors and health care staff, health care assistants in nursing homes and so on, who remain unwell after putting themselves in harms-way. Professor Garner states that he has the support of his employer during his months of convalescence, many Long-Covid sufferers aren’t so lucky and will suffer ongoing physical, mental and economic challenges.

Conclusions

Paul Garner’s recovery may have had very little to do with his mind, yet his mind now tells him it was the most important factor. That is perhaps the true power of the mind. The mind subjectively validates the stories one tells about oneself.

In his early media posts Garner said pacing helped, and also diet, sleep, rest, accommodating to the virus and setting up a self-help support group, all before the magical mind guru entered his Long-Covid tale.

This researcher wishes Professor Garner continued good health, but remains concerned that Long-Covid NHS care planning could be influenced by anecdotal stories; we must listen to all patients and be evidence-led.

text © Keith Geraghty, 2021

Published by David F Marks

Author, editor, psychologist.

8 thoughts on “Can Long-Covid be Cured with the Mind: Expert Patient or Nutty Professor?

  1. I’ve had ME since 2006, and I’ve tried thinking positively about what I can do over the last 15 years: it just hasn’t worked; I’m as exhausted as before. I’ve ‘stared down the barrel of ME/CFS’ many times — and it’s just shot me squarely between the eyes each time, leaving me well and truly knackered.

    I don’t begrudge Professor Garner his recovery. But I know as an historian that one example does not prove a general rule and that it is entirely unprofessional — nay, dishonest — to construct a general rule from one example, and that as a professor of infectious diseases and expert in evidence-based medicine he really ought to subject his own experience to the same criteria of proof that he must surely employ in his academic research.

    Dr Paul

    Like

  2. Before I became ill with ME in 1993, I was a FT mountain bike racer and alpine ski racer while going to university. 25-30 hour weeks on the bike during summer (that’s only time spent actually pedaling and the total time spent was over 40 hours per week) and 40+ hours/week skiing during winter were the norm for me (on top of FT school/work depending on season). In essence, I was doing 110-120 hours per week of activity during the school year and 80+ hours per week during summer. After getting sick in 1993, I could only do about 30-40 hours of total activity. After university, I took a PT job coaching both sports (along w/ a regular PT job in a coffee shop) so that I could continue to exercise; since I could only do a fraction of my normal activity level. I had no idea what was wrong, since I had never heard of ME/CFS or FMS; and it took 5 years to finally get diagnosed. Even with the exercise, I never improved. Working 20 hours per week and desperately trying to maintain 10-12 hours per week on the bike coaching kids (about 20 hours per week skiing during winter) was my absolute maximum; which was only about 30% of my pre-illness level. It didn’t help with the pain, cognitive symptoms, neurological symptoms, inability to get to deep sleep, or any of the other symptoms. Even with my pre- illness fitness and continuing to struggle through exercising more than most people ever do, it didn’t help. The illness continued unabated for years. I had no fear of exercise as I had no idea what was wrong; I genuinely thought if I kept exercising, it would go away at some point. It didn’t. Things came to a head after I switched to a FT job that had health insurance (I was hoping to find answers with the ability to go to a doctor) and I had a severe worsening of my condition directly after receiving a Hep B vaccine. Instead of spending 3 hours every evening experiencing the “raggedy doll fatigue” (a metabolically mediated hypotensive event), I found myself experiencing it 6 hours per evening and all my other symptoms worsened. I finally found a doctor who diagnosed me. My experience shows that exercise isn’t THE answer. Even having no diagnosis to influence my thoughts about my illness and an extreme motivation to try to exercise my way out of it made any difference. It amazes me how these “experts” cannot seem to grasp the effects of confirmation bias on their experience. When are they going to learn how to do actual science?

    On another note, I have learned a great deal about the illness over the years. The cause of the alpha/delta wave sleep anomaly is also the cause of the cognitive symptoms: an EEG specialist named Frank Duffy has discovered the alpha/delta wave anomaly is caused by a micro-seizure that occurs every couple of seconds that disrupts deep sleep. This micro-seizure brilliantly explains the pattern of neurocognitive dysfunction found in neuropsychological testing on over 3000 ME/CFS patients (by Sheila Bastien): problems with focus and attention, short term memory, impulsiveness, etc. With the brain doing a “soft reset” every couple of seconds, the ability to focus is disrupted, long term potentiation of memory is disrupted, and with new thoughts entering the mind every couple of seconds, impulsiveness is extremely heightened. It also explains why EEG studies have found ME/CFS patients have an abnormal startle reflex and startle abnormally. In a normal person, if someone is about to be startled but they have something that puts them into a state of vigilance beforehand (what the researchers call “pre-pulse inhibition”), they will not startle for at least 5 seconds. People with ME/CFS cannot maintain that state of vigilance and will startle when they shouldn’t. In essence, because the micro-seizure is disrupting the thought processes every 2-3 seconds, that state of vigilance cannot be maintained for the full 5 seconds and the ME/CFS patient will startle when they normally wouldn’t: in a very real sense, they are “forgetting” that they’re supposed to be vigilant, so they startle abnormally. This helps explain why ME/CFS patients appear “jumpy” and nervous to others. I have had a number of experiences that I believe are direct exemplar of this micro-seizure and one experience that is the perfect exemplar of the abnormal startle reflex. This micro-seizure explains how people with ME/CFS can have an average 25% drop in IQ, while still maintaining their native intellectual abilities: we can still think, but it’s only lasting for 2-3 seconds before the brain does it’s reset and we have to essentially start over.

    That’s the problem with the “biopsychosocial model” theorists: there’s a wealth of research that can help elucidate the causes of many symptoms for people experiencing ME/CFS, if they would listen carefully to their patients and look at the actual research, they could begin to find the correlations between them and develop research methodologies that could elucidate the causes to the symptoms experienced by patients. But they’re so focused on their own proving their own hypotheses, they can’t see what’s right in front of them. They’re turned around and so focused on the sapling they planted behind them, they’re missing the trees AND the forest in front of them.

    Like

    1. Thank you for your comment, which is most enlightening. I wish you well and join you in hoping for a genuine
      scientific understanding of MECFS before too much longer.

      Like

      1. Someone needs to make the biopsychosocial school adherents take an extensive course on epistemology and methodology in science. They don’t seem to understand how science actually works. Oh well. Thanks for the reply.

        Like

Leave a Reply to melivet Cancel reply

Please log in using one of these methods to post your comment:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out /  Change )

Google photo

You are commenting using your Google account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )

Connecting to %s

This site uses Akismet to reduce spam. Learn how your comment data is processed.

%d bloggers like this: