+100%-

Paul Garner’s recovery story from long COVID has met with almost universal dismay and anger from the chronic fatigue syndrome (ME/CFS) community. Garner, after all, was something of a champion for long COVID and ME/CFS. An infectious diseases specialist who had weathered serious infections before, he seemed perfect for the job of validating both long COVID and ME/CFS.

Paul Garner

Paul Garner (from Linked in)

Then he published his recovery story, “Paul Garner: on his recovery from long covid“, using behavioral techniques, and the whole thing collapsed. Hundreds of comments demonstrated the ME/CFS community’s dismay. The champion had suddenly turned, for a community seeking, above all, more research funding, into something of an enemy.

The upset was understandable. The fear is that such a public figure’s recovery story will blunt in the U.K. the recent newfound openness to biological inquiry. I hope it won’t. The U.K. has gone down the psychological/biopsychosocial rabbit hole for many years. Does it really open up that can of worms again? Hopefully not.

If anyone has embraced mind/body approaches, it’s been me. That’s in part because the only really significant thing that’s moved the needle on my illness was the EST training in the early 1980s. Since then, I’ve tried these again and again with limited results. While they can be helpful I don’t see them as providing anything close to the viable community-wide approach to this illness that we need.

EST, Landmark Education, ME/CFS and Fibromyalgia: My Story

The answer to ME/CFS and long COVID has to come from science, and in that regard Paul Garner’s recovery story presents something of a problem. Is it really incompatible, though, with what we know about the biology of the brain? Perhaps not.

Explaining Paul Garner

Most of the comments on Garner’s recovery story are focused on finding fault with it or rejecting it in some fashion. My focus here, though, is trying to explain it. The first thing to look at, in attempting to do that, is at who Paul Garner is.

Garner is an infectious diseases specialist who was one of the original creators of the Cochrane reports. He helps lead a network of over 300 people who synthesize research on tropical infections to inform global, regional, and national policies. He works with the World Health Organization and developing nations across the world. Over the past almost 20 years, he’s co-authored somewhere around 100 publications. In other words, he’s a very successful, hard-working, well-respected professional.

Plus, he’s personally dealt with serious infections like malaria, dengue fever and others. If anyone could calmly wait out an infection – it would be Garner. Not only has he personally experienced a boatload of serious infections, he professionally deals with them all the time. All of this suggests that Garner’s illness couldn’t be the result of an aberrant emotional response – that’s just not who he is.

Yet here he is – being very emotional:

“I became obsessive as the months passed in an attempt to avoid my symptoms. I started unconsciously monitoring signals from my body. I sought precipitating causes. I became paralysed with fear: what if I overdid it? I retreated from life.”

Garner’s illness had him become physically and emotionally discombobulated in a way that none of his other infections had. That’s saying something quite significant about the sheer strength of his illness. It also suggests maybe an emotional destabilization of some sort might have been part of the disease experience.

“A vicious cycle is set up, of dysfunctional autonomic responses being stimulated by our subconscious.”

Many people have objected to this statement above, and I do too, but perhaps for a different reason. Here, Garner suggests that the subconscious is driving the disease experience.

Is it possible, though, that Garner simply had a form of sickness behavior?  That his symptoms were produced by the brain to cause him to conserve his resources and keep an infection from spreading. The sickness behavior response is not just physical – it’s mental and emotional as well. It causes the brain to produce symptoms, thoughts and feelings that lead one to isolate ourselves and spare the community our infection. Could the subconscious impulses Garner referred to be part of this sickness behavior response?

“Sickness behavior is a coordinated set of adaptive behavioral changes that develop in ill individuals during the course of an infection.[1] They usually, but not always,[2] accompany fever and aid survival. Such illness responses include lethargydepressionanxietymalaiseloss of appetite,[3][4] sleepiness,[5]  hyperalgesia,[6] reduction in grooming[1][7] and failure to concentrate.[8] Sickness behavior is a motivational state that reorganizes the organism’s priorities to cope with infectious pathogens.” From Wikipedia

Paul Garner – Earlier in his illness

Look at Garner’s own words: “I retreated from life”. A “retreat from life”, of course, is the essential goal of the sickness behavior response. Until this pandemic came along, we’ve forgotten what a scourge infectious illnesses (bubonic plague, polio, syphilis, malaria, cholera, tuberculosis, HIV/AIDS) have been in our past. They’ve easily caused more death and suffering than any other factor over time. Our bodies are primed to react to them with all means possible – and that means physiological and emotional responses.

In the brain, the autonomic nervous system is also heavily intertwined with organs that regulate emotions. The fact that the brain organs most often implicated in ME/CFSFM are all associated with autonomic nervous system function, emotions and pain and sensory processing, suggests that all three are in play in these diseases.

  • Insula – involved in emotions, motor control, cognitive functioning, pain processing, and the autonomic nervous system, movement.
  • Amygdala – autonomic nervous system regulator, sensory stimuli processor, center of the fear response.
  • Anterior cingulate cortex – autonomic nervous system regulator, stimuli and pain processing, emotional regulation.
  • Prefrontal cortex – coordinates autonomic nervous system, neuroendocrine and behavioral responses to stress, seat of executive functioning.

I should note that when I think of Garner, I’m trying to explain myself as well. I know that along with my autonomic nervous system issues (difficulty settling down, poor sleep, I believe poor energy), have come problems with focus, making decisions, fear, irritability and anger.

For years I’ve asked myself: where this fear and subclinical anxiety comes from? Why is it so difficult to settle down? Why do little things bother me so much and affect me physically so much? My guess is that this is, at least for me, part and parcel of a disease process that affects the two major stress response axes (ANS, HPA axis) , the metabolism, and the immune system. It could all be the result of an ongoing, brain induced sickness behavior response.

Notice, though, that the fact that Garner was living in a state of fear didn’t help at all. If anything, it made everything worse. It amplified his fight/flight response leading to increased pain, depleted energy, poor sleep, and a Th2-based immune response that likely left him less able to fight off pathogens and more susceptible to allergic/mast cell reactions. His parasympathetic rest-digest response was turned down as well- resulting in fewer opportunities to heal.

The Prefrontal Cortex to the Rescue?

“ME/CFS is a stress response disease.” – Nancy Klimas, 2014 Nova Southeastern Conference

Several hypotheses have been put forth in the ME/CFS literature which could, I think, potentially biologically explain how Garner got better.

prefrontal cortex

The prefrontal cortex regulates sympathetic nervous system function, the cardiovascular system, sensory inputs, and the emotions. Could Garner have rehabilitated it?

The Japanese have found that as healthy controls became more fatigued during extended cognitive tasks, the parts of their brains involved in mental processing begin to disengage. Two core regions, in particular, the prefrontal cortex and the anterior cingulate cortex, shut down.

As these regions begin to shut down, they begin to lose control of the autonomic nervous system – in particular, the parasympathetic or “rest and digest” nervous system. One of the main jobs of the PNS (parasympathetic nervous system) is to calm down the sympathetic nervous system and, indeed, studies suggest that the PNS is underactive in ME/CFS.

The Japanese believe the prefrontal cortex (PFC) may be the key. The prefrontal cortex is an amazing, multidimensional brain organ. Not only does it regulate the PNS, but it’s also at the heart of “executive functioning” – which refers to reasoning, planning, judging, etc. It also regulates sensory inputs (physical sensations, over-stimulation), emotions (high emotional lability), attention span, working memory, planning, self-control and decision-making – none of which, at least in my experience, are doing particularly well. Plus, the PFC also appears, via the PNS, to regulate the cardiovascular changes occurring during movement.

The Japanese have found damage to the prefrontal cortex in ME/CFS. They believe that with the inhibitory brake of the prefrontal cortex gone, the sympathetic nervous system has been let loose, causing the brain to react to the slightest stimuli, leaving people with ME/CFS agitated, wired and tried, with distorted immune systems, etc.

Fatigue Explained? Japanese Assert Brain Damage Causes Fatigue in Chronic Fatigue Syndrome

It’s possible that the techniques Garner used helped him rehabilitate his prefrontal cortex. Studies show that meditation and mindfulness can increase prefrontal cortex activity and reduce the activity of other areas of the brain such as the anterior cingulate, which have been implicated in increased pain. The ability of mindfulness techniques to reduce pain is well known. Plus, garner’s decision to stop constantly assessing his symptoms could have taken some load off of his sympathetic nervous system.

Once Garner got his prefrontal cortex back in shape, his sympathetic nervous system may have calmed down, his immune functioning may have returned to balance, the blood flows to his muscles became more normal, etc.

Broken Gates 

A similar idea is that instead of properly filtering out sensory information, broken gates at the brainstem and spinal cord are allowing too much sensory information through, whacking the amygdala, insula, anterior cingulate cortex and other regions of the brain with tremendous streams of stimuli – and leaving them in a state of alarm.

In this scenario, finding ways to  strengthen the prefrontal cortex allows it to calm down the fight/flight response, thus improving the immune response, possibly improving cardiovascular functioning, etc.

Wirth and Scheibenbogen have not endorsed stress reduction techniques, but one part of their hypothesis suggests an overly activated sympathetic nervous system is clamping down on ME/CFS patients’ blood vessels. That stops them from feeding enough blood to the muscles, thus forcing the muscles to rely more on anaerobic energy production. They propose that the body attempts to compensate for that by producing vasodilators such as bradykinin, which cause pain and fatigue.

In this model, finding ways to reduce the stress response could be helpful as well.

Something Wrong

Garner said that the “pure biomedical explanations felt wrong” to him, but there’s something about Garner’s recovery which feels wrong as well. Unlike some, I believe Garner did recover using the means he did, but there was something about it that was all too easy.

Anyone trying to project Garner’s recovery story to all the long-COVID patients and/or ME/CFS community is going to run into some significant problems.

Garner Was Already Getting Well

“You were very lucky. Many, if not most, people with PVFS recover within two years. To extrapolate this to ME is a bit of a stretch… you were already statistically in the group most likely to recover (having been ill less than a year).” – Comment on Garner’s blog.

Some people have pointed out that Garner was in a kind of a recovery sweet spot. He was at a point in his illness when if someone is going to get well, it was probably then. The prevalence of severe fatigue in the Dubbo studies dropped about 30% from six months to 12 months (12%-9%). I believe it dropped to about 5% over two years.

It’s possible, then, that Garner was already getting well and misattributed his recovery to his behavioral approach. It’s also possible that he was slowly getting better and his behavioral approach accelerated that process.

In general, for me, I tend not to put too much faith in coincidences. If someone starts a program and they notice results, I tend to assume that the results are coming from that program. Still, it’s possible that Garner was on the road to recovery and this program accelerated that.

Been there – tried that…

“Yet there are people who have tried the very same things as Paul Garner and not recovered, suggesting it isn’t as simple as he suggests.”

 

“I was initially diagnosed with ME/CFS as a 15 year-old elite athlete. I subscribed to the biopsychosocial model and spent 6 years using various cognitive approaches, and obviously exercise (as a top level footballer), however, nothing worked.”

 

“Many with ME have tried the strategies you vaguely explain, often multiple times, and ended up the same or sicker…”

 

“…suddenly my mind over matter push through didn’t work. I tried multiple times, and stubbornly each time crashed worse than the last until I was mostly disabled and unable to find a path back. I’ve tried various ‘brain retraining’ protocols, herbs, TCM, rx’ed meds, etc.”

 

“One is that variations of this approach have been around for a long time. If this technique led reliably to a recovery, there would by now exist convincing evidence showing this.”

It’s not as if people with ME/CFS avoid the approach Garner took.  Many approaches to ME/CFS focus heavily or partially on mind/body techniques (Amygdala retraining, Lightning Process, Alex Howard, DRNS, ANS Rewire, MBSR, CBT/GET). Many people have tried these techniques and some people do get better (and some people get worse), but there’s no indication that these approaches reliably lead to recovery.

Garner Was Never as Sick as Many of Us

This is certainly true. Many people have comorbidities and complications which Garner didn’t have. Some people have been ill for decades. Many are more functionally impaired. Some may have actual organ or brain damage. Other people have spinal issues, etc. Mindfulness approaches may help with quality of life – a worthy goal for sure – but it’s hard to believe they’re the way out for many.

One of Lenny Jason’s studies suggested that while coping (remaining within one’s energy envelope) did help many, it didn’t make a difference for a subset of patients. They were just too ill to benefit from it.

No Recovery Story Can Speak for Everyone

The many different ME/CFS recovery stories makes drawing any conclusions difficult.

One person got the question right, I thought, when he asked:

“He says that he recovered by listening to people who have recovered from ME/CFS and not to those who are still unwell. But which patients should we listen to? There are individual recovery stories after treatment with Rituximab, laser light, and neck surgery. Should we listen to them?”

Perhaps the most critical fact about any recovery story is that it’s just one of many. Health Rising has 63 recovery stories on its website that run the gamut from antiviral, functional medicine, diet, fecal transplant, hormones, mold avoidance, surgical and yes, mind/body (13 of them). I have 10-15 more recovery stories waiting to be processed which include recoveries due to functional medicine, DNRS, blood volume enhancement, fasting, yoga, ketogenic-meditation-functional medicine, exercise-diet-pacing-mind/body, etc.

Rituximab provides a good example of the complexity facing anyone who believes they have the answer to this disease. Rituximab did trigger recoveries in several people and did well in several small trials, but then failed miserably when fully put to the test.

The many ways people recover – when they recover from ME/CFS – boggles the mind. At this point, all recovery stories can do is point to possible avenues for people to explore.

Garner’s Unfortunate Ending

“I did this by listening to people that have recovered from CFS/ME, not people that are still unwell.”

Garner’s logic is impeccable – of course if you want to recover from something, you focus on people who have recovered. If he had stopped there, things would have been fine but the “not people that are still unwell” comes, whether he meant it or not, as a dig. 

I don’t think Garner was being irresponsible in publishing his story. I believe that Garner’s public stance regarding his illness made it necessary for him to be public when he recovered. It was unfortunate and surprising that as a co-creator of the Cochrane Reports – the gold standard of objectivity regarding treatment success – that he didn’t put his success in context. On the other hand, for me at least, Garner’s suggestion to “spend time seeking joy, happiness, humour, laughter” is well taken. Particularly if you’ve been ill long enough, these things don’t come naturally – they need to be sought out – and can lead to an improved quality of life.

Conclusion

One purpose of this blog was to see if a biological explanation could explain Garner’s recovery. I believe one can, at least, be advanced. Another purpose was to assess Garner’s recovery in the context of other recoveries and in the context of what we know about the kind of approaches he took.

That attempt – aided by the responses to his blog – suggests that Garner’s recovery story is one of so many different recovery stories as to make it impossible to draw any conclusions about them, other than to note that some things work for some people and not for others. Garner’s recovery story is also clouded by the fact that it occurred early in an illness which had a relatively simple and mild presentation. As such, it simply presents a possible approach for those who are inclined to try that route.

Garner’s story and the controversy it has caused simply highlights what a black box both long COVID and ME/CFS are. With no diagnostic tests to tell us if Garner had ME/CFS, or a form of it, or something else leaves us stumbling around trying to figure out what his story means. The big takeaway is that ME/CFS remains a mystery – a mystery that can only be explained by science – and that’s what we need.

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