“Pain is inevitable, suffering is optional.”  Buddhist saying

Something new has become possible with the long-COVID funding. Long sought answers to ME/CFS are not a pipe dream anymore but appear achievable. They will, however, take some time to emerge. Yet many people are suffering now, and some may not make it until those answers emerge. What a tragedy to endure so much and not make until the end. Supporting everyone in “making it” sparked the idea for Health Rising’s “Ending Suffering” project.

Studies indicate that ME/CFS and FM are uncommonly difficult diseases to have.

The Ending Suffering project is dedicated to exploring the rather astounding notion that suffering is optional.

Could it be?

The project will examine ways to reduce suffering and improve the levels of joy, well-being and satisfaction in people with chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and allied disorders.

The studies suggest that these are good diseases to test this “suffering is optional” notion on. If it works in them, it may work anywhere.

People with ME/CFS have been shown to be more functionally impaired than people with heart disease, heart failure, multiple sclerosis and other diseases. Health related quality of life (HRQOL) scores are similarly low. One study found the quality of life in ME/CFS to be “particularly and uniquely disrupted“.

Most people with FM report experiencing moderate to severe disability due to their illness, and high rates of social security disability are present. Rather remarkably, higher levels of psychological distress were found in fibromyalgia than in the dreaded chronic regional pain syndrome (CRPS).

The project also embraces the idea that the suffering in these diseases is largely brain-based and that much of it arises from issues with the central nervous system – most of which seem, but are perhaps not, out of our control.

The neurological basis of suffering has been known for quite some time, and practices that can reduce it have been validated. Back in 2009, Rick Hanson outlined the neurological basis of suffering in his widely lauded book, “Buddha’s Brain: The Practical Neuroscience of Happiness, Love, and Wisdom“. In the 2013 update of his 1990 book “Full Catastrophe Living” that started it all, Jon Kabat-Zinn reported that 1,500 scientific studies and papers in the medical literature examined ways to reduce suffering without drugs.

Over time, of course, the brain organs and pathways associated with suffering have become better and better elucidated. The question this project concerns itself with is whether it’s possible to impact those brain pathways and reduce suffering.

The Brain

It calls for a little evolutionary history. Our brains did not just burst into the world. They were built, piece by piece, over eons of evolutionary time. First came the so-called reptilian brain (hindbrain) centered at the base of our skull. It’s an ancient, powerful, and rather simple regulator of the basic processes (breathing, blood pressure, swallowing) of the body.

Built on top of the hindbrain is the midbrain which regulates movement, processes sights and sounds and the sleep/wake state.

The topmost and largest part of the brain is the forebrain. Several parts of the forebrain (insula, prefrontal cortex, anterior cingulate cortex (ACC), amygdala, cerebellum, periaqueductal gray (PAG)) produce the emotional and mental aspects of pain.

At the very bottom of the forebrain sits the limbic system which used to be known as the “tween brain”. Made up of the amygdala, hippocampus, hypothalamus, nucleus accumbens, etc., the limbic system sits in the very middle of the brain.

A good deal of our emotional life (fear, reward, motivation) derives from this more primitive part of the forebrain.

Surviving In a Dangerous World

In the dangerous world we evolved in, hypervigilance was key.

The overriding need to survive in a dangerous world is the brain’s master theme. Our brains developed in a world where the smallest misstep – the snap of a twig that we didn’t hear, the slight movement in the shadow in the bush that we missed – could mean death.

We survived by being vigilant, and that required putting a premium on processing negative information very quickly, more quickly than positive information. The danger motive also causes us to hold negative information in our memory banks longer than we do positive information, and it makes it more difficult to remove those memories. The negative memories we have, in other words – just stick. As Hanson stated in “Buddha’s Brain”:

“the brain is like Velcro for negative experiences and Teflon for positive ones”.

The Fear Organ 

A chronically activated amygdala has the potential to produce a lot of suffering.

Given the number of negative experiences that people with FM and ME/CFS encounter, it’s no surprise that the amygdala – the primary fear organ in the brain – might be involved. Lying right at the heart of the “suffering response”, the amygdala, a small, almond-shaped organ in the center of the brain, is tasked with adding feelings of fear and unpleasantness to situations.

The amygdala also, interestingly, plays a major role in what we pay attention to, and is a powerful autonomic nervous system regulator.

When activated, the amygdala pings the hypothalamus, which then activates the sympathetic nervous system (SNS) or fight/flight system – a system we know is overly activated in fibromyalgia and chronic fatigue syndrome.

The first sentinel in the danger response, the amygdala has to be lickety-split fast. Once activated, it responds within milliseconds on a pre-conscious level. By the time your conscious registers that a car is coming towards you, your amygdala is already starting to move your body out of the way. The amygdala introduces an important theme that we’ll follow up on in future blogs – that much of what affects us comes from subconscious levels.

A damaged amygdala can be bad news in two ways. First, it can result in a barrage of “excitatory inputs” from the brainstem which send the amygdala into hyperdrive, causing it to slam the great regulator – the prefrontal cortex (PFC) – with danger signals. Too much of that and parts of the prefrontal cortex will fold – giving the limbic system free rein.

The Calming Center –  the Prefrontal Cortex

Sitting at another hub of the emotional response to pain, and playing a dominant role in how much suffering we experience, is the medial prefrontal cortex (mPFC) and the anterior cingulate cortex (ACC).

prefrontal cortex

The prefrontal cortex (red) is tasked with calming the limbic system down. Some studies suggest it may not be operating so well in ME/CFS and FM.

The mPFC inhibits both the sensory and emotional signals generated in the limbic system from getting out of control by reining in the fear behaviors and the fight or flight response produced by the oh-so-twitchy amygdala. How much peace, joy and satisfaction we experience is in part determined by how well the mPFC is able to calm down the amygdala and associated organs.

Studies indicate that simply being in chronic pain impairs the mPFC’s ability to do that. In fact, a back pain study indicated that when acute pain transitions to chronic pain, pain signals get transmitted more and more through the emotional circuits of the brain such as the amygdala. The intensity of the pain signals may not change, but they produce more and more suffering.

Interestingly, transition to a more emotional state of chronic pain was predicted, not by a person’s psychology, but by the strength of the connection between a person’s prefrontal cortex and a brain organ – the nucleus accumbens – associated with the limbic system.

The Gist

  • The Ending Suffering project is dedicated to the Buddhist notion that pain is inevitable, but suffering is optional.
  • It’s dedicated to finding ways to reduce suffering in ME/CFS/FM and provide more opportunities for satisfaction, well-being and joy.
  • It arose out of the concern that breakthroughs are on the horizon, but they will take time to get to, and some are suffering too much to make it.
  • It proposes that dysregulated central nervous system pathways are a major cause of suffering in these diseases, and that they can be manipulated to reduce suffering.
  • It recognizes the fact that the brain is a survival machine which evolved in dangerous times. Its focus on identifying threats and focusing on negative situations simply reflects that fact.
  • The limbic system, in particular, the amygdala, is an ultrafast danger response system that runs below the level of consciousness. When activated, it immediately ramps up the sympathetic nervous system or fight/flight system. That system has been shown to be activated in ME/CFS/FM.
  • Studies in ME/CFS and FM suggest that the primary regulator of the amygdala – the prefrontal cortex – may have been damaged in ME/CFS/FM – possibly giving the amygdala free rein – resulting in an ongoing fight/flight response.
  • Studies also suggest that the more exhausted a person is, the less able their prefrontal cortex is able to rein in the fight/flight response.
  • The Ending Suffering project is focused on exploring ways to strengthen the prefrontal cortex and tone down the threat messages emanating from the limbic system.
  • If successful, those ways should allow for more peace, satisfaction and joy.

The Exhaustion Factor

Being exhausted doesn’t help. In an attempt to simulate the exhaustion typically found in ME/CFS, a Japanese study had healthy people do cognitive tasks until exhaustion set in. fMRIs indicated that as the participants became more and more tired, their prefrontal and anterior cingulate cortices began to shut down. As that happened, their prefrontal cortex failed to activate their “rest and digest” or parasympathetic nervous system, and the activity of their “fight for flight” or sympathetic nervous system spiked.

The Japanese proposed prefrontal cortex damage is causing something similar to happen in ME/CFS. With the inhibitory brake of the prefrontal cortex gone, the sympathetic nervous systems of people with ME/CFS have become hyperactive producing, among other things, suffering.

Fifteen years ago, this group suggested “the prefrontal cortex might be an important element of the neural system that regulates sensations of fatigue.”

Chronic Fatigue Syndrome (ME/CFS)

Several studies in ME/CFS, and more in fibromyalgia, suggest that the prefrontal cortex is indeed impaired.

A small 2008 study found that exercise reduced oxygen delivery to the prefrontal cortex. Unrefreshing sleep was associated with reduced activation of the prefrontal cortex in 2017. Barnden found increased myelination in the prefrontal cortex which he proposed was linked to impaired conduction from the midbrain.

Lower blood flows have been found in the anterior cingulate cortex – a part of the prefrontal cortex – found twice in ME/CFS.

Reduced acetylcarnitine uptake was found in the prefrontal lobe (and other regions of the brain) in ME/CFS. Reduced grey matter in the prefrontal cortex was highly associated with fatigue in ME/CFS. Elevated lactate levels in the prefrontal cortex were associated with impaired cognition in one set of Gulf War Illness (GWI) patients.

Fibromyalgia (FM)

Pain scores were correlated with grey matter issues in the anterior cingulate in FM. Decreased blood oxygen levels in the ACC were associated with pain. A hyperintense connection between the anterior cingulate cortex and insular cortex (another major player in pain) suggested the presence of overactive pain pathways.

The Way Out of Suffering?

There is potentially a way out of the suffering imposed by these dysregulated networks, and it involves using the highest and most recently evolved area of the brain – the prefrontal cortex – to tamp down the activity of the more primitive parts of the brain.

reduce suffering project

Studies indicate that it is possible to significantly reduce suffering – even in people with chronic illnesses.

The project’s goal is to reduce suffering of any kind – physical, emotional, mental – and find ways to introduce more joy, peace of mind and satisfaction back into our lives.

Exploring the many different techniques that have been used to do that is what the Ending Suffering project is all about. It will consist of Zoom interviews with patients and experts who’ve found ways to find peace and joy even in the midst of a chronic illness as well as book, research and treatment reviews.

Suggestions – something to read, someone to interview, subjects to address – as well as blog contributions (we already have our first :)) are welcome. Please let us know via Health Rising’s Contact page.

We’re also looking for short videos from people who’ve found ways to improve their quality of life and experience of joy and satisfaction.

The project’s genesis came from the idea that some people who could benefit from future findings aren’t going to make it, but it’s also a personal exploration for me. As the project proceeds, I hope to learn ways to turn down the suffering and open up new possibilities of joy and satisfaction in my life as well.

I don’t know if I will succeed. I do know that it’s worth a try.


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