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In Pt. II of our 4-part interview on how people with chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) recover, we cover the following topics.

  • I ask what did CFS Unravelled bring that was new – a single explanation 0:00:22
  • Dan challenges the model of healthcare – “forget a cure?” 0:04:24
  • Dan talks about how to define partial & full recovery 0:09:46
  • Dan explains how ANS dysfunction explains the different recovery paths 0:11:26
  • I ask Dan about his experience with recoveries 0:21:46
  • I ask Dan about broad themes in various recoveries 0:34:53

If you have questions for Dan, please add them in the comment section and we can try to cover them in a new interview.

Resources

The Dan Neuffer Interview: Part II

Dan rejects the idea that there is one magic cure because of how many different types of ME/CFS/FM there are. If you look at these diseases from an autonomic nervous system (ANS) dysfunction aspect, that’s not a surprise given how many systems the ANS interacts with.

The nervous system, he proposes, is under an onslaught that’s “just crazy”. With all the problems people with these diseases have with their gut, their cardiovascular systems, etc., their nervous systems are going to get pounded with an overwhelming number of signals and stimuli – causing them to move into high alert – and ultimately, to overreact to everything.

Note that this idea that our nervous system, in particular, is overreacting to stimuli is not new to Dan.

The Dan Neuffer Recovery Interview Series on Health Rising

An Aside

Research has shown that multiple parts of the central nervous system (CNS) are overreacting to pain signals in fibromyalgia. Plus, the pain inhibition system is not kicking in. It’s a CNS on edge.

Wound up, Overheated and Tweaked: A Look at the Fibromyalgia Brain and Nervous System.

The drops in prefrontal cortex oxygen levels seen during exercise in ME/CFS suggest that exercise may result in the loss of control of the limbic system (including the amygdala – the seat of the fight/flight response). An unrestrained amygdala/limbic system – perhaps the fastest-acting system in the body – could be responsible for the enhanced fight/flight response (sometimes called an “amygdala hijack“) seen in ME/CFS.

With the inhibitory brake of the prefrontal cortex gone, the sympathetic nervous systems of people with ME/CFS react to the slightest stimuli, leaving them tired and wired, their blood vessels constricted, their guts cramped up, their heart rate racing, etc. It’s perhaps notable that both the major stress axes of the body, the autonomic nervous system and the HPA axis, are affected in ME/CFS – and both regulate the immune system.

The Japanese take the prefrontal cortex problems one step beyond its well-known association with cognition. They believe that damage to a part of the prefrontal cortex called the dorsolateral prefrontal cortex (DLPFC), which regulates movement, is impairing our ability to recruit muscles during exercise. Because the dorsal lateral prefrontal cortex appears to decide which process – energy enhancement or the induction of fatigue – is going to prevail, the authors hypothesize that metabolic, functional, or structural damage to this part of the brain is key to the development of fatigue in ME/CFS. Their model even proposes to explain why attempting to push through the fatigue makes it worse.

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

Likewise, Jarred Younger believes that the immune cells of the brain – the microglia – are on a hair trigger – and at the slightest sign of stress are telling the nervous system to produce flu-like symptoms such as pain, fatigue, sleep issues, cognitive problems. Michael Van Elzakker’s vagus nerve stimulation hypothesis provides another way for immune issues in the body to amp up the central nervous system.

Either way, you have a situation where the central nervous system is overreacting to signals coming from the body – and amping them up

The Neuroinflammation Man: Jarred Younger on Inflammation, Fibromyalgia and Chronic Fatigue Syndrome

The severe fatigue state found in ME/CFS potentially adds more spice to the mix. In one of the more fascinating – and potentially revealing – studies I can remember, a 2015 study found that as the healthy controls became more fatigued, the parts of their brains involved in mental processing begin to disengage themselves. Two core regions, in particular, the prefrontal cortex and the anterior cingulate cortex, shut down.

As these regions shut down, they begin to lose control of autonomic functioning. In particular, they begin losing the ability to activate the parasympathetic nervous system and tone down the sympathetic nervous system. Since this happened in healthy controls, it appears to be a normal consequence of severe fatigue…

The upshot is that a variety of ways (activated pain production system/inhibited pain inhibition system, underperforming prefrontal cortex/hyped up limbic system, autonomic nervous system dysfunction, activated microglial cells, being severely fatigued) exist that could result in a twitchy central nervous system that’s raring to produce the symptoms found in ME/CFS/FM and related diseases.

Note that this doesn’t mean that problems in the body do not exist and that ME/CFS/FM are solely brain diseases. Problems in the body may very well exist, but their effects are being amplified by the brain – which is, in turn, producing the flu-like symptoms we see during infections.

Dan’s program – which I have not taken – appears to try to take the edge off an overactivated fight/flight system by “retraining the brain” to stop reacting so much. Note that this reaction is not a conscious reaction; instead, it’s a biologically driven process produced by the fastest reactor in the brain – the limbic system.

Back to Dan –  and How He Stopped Counting How Many ME/CFS Recovery Stories He Found

Dan believes that the brain and the autonomic nervous system can be slowly retrained to bring down the reaction, and notes that countless ways of retraining the autonomic nervous system exist.

Dan may have been the first person to actively chart ME/CFS recovery stories. He noted that when he was sick, he didn’t know anyone with ME/CFS – let alone know anyone who had recovered – and indeed, back then, it was rare to hear of people with ME/CFS who recovered. (Now if you look on YouTube, you can find hundreds of recovery stories. (Health Rising has about 70 recovery/recovering stories of all kinds – and we’re about 10 behind).

Once Dan started communicating about recovery, though, the stories started popping up. When I asked Dan how many people he’s spoken to that recovered – he said that “he stopped counting – a long time ago”. Via personal connections – he’s talked to several dozen people, via interviews – about 60, and the people he’s interacted with via social media run into the hundreds.

Not all were 100% recovered – but all were at least 80-90% recovered. The not fully recovered group included some people who were recovered but just didn’t realize it yet, and others who were symptom-free but were not fully recovered. In his mind, being fully recovered means that you can get an infection, not sleep well, be in a stressful situation, etc. – without experiencing a flare-up. Recovery does not mean that someone cannot get ill again. He believes that anyone can get this illness.

He also believes he can actually spot people who recovered – many of whom were never diagnosed with ME/CFS – but all were seriously ill – many of whom were not sure how they actually recovered. One way to find recovered people is to talk to your local naturopath or yoga teachers, and if you talk to enough of them, you’ll find people who ended up in these careers because they got passionate about health.

Dan believes that virtually anything – really anything that stresses the body – whether it’s unmanaged type I diabetes or PTSD or whatever – can trigger ME/CFS/FM. Essentially, a personalized approach is needed. If the ANS Rewired program doesn’t work for someone – he recommends that the participants dig deeper into their biological issues – while continuing on with the program.

Broad Themes to Recovery?

I asked Dan if he’d seen any broad themes in the recovery stories. While he encourages people to be positive when they listen to recovery stories, he also encourages them not to drop their skepticism either.

In his recovery story interviews, he’ll invariably find that people did more things than they first mention. People who recovered using say, functional medicine techniques, will often start relating to their pain or their stress levels differently at some point. As they started feeling better and their worries about getting better receded, that helped them on their recovery journey as well.

Dan noted there are many aspects to pain (anticipation, the meaning we give to pain, etc.). (This is called the “affective” side of pain. Anxiety about pain, feeling hopeless about pain, being upset about pain – all serve to increase the pain experience, in part by activating the fight/flight response). Comprehensive pain management clinics now typically include pain management techniques (essentially neuroplasticity practices) such as meditation, mindfulness, MBSR, acceptance/commitment therapy, etc., to help address the affective side of pain.) As Beth Darnal, the director of the Director of the Stanford Pain Relief Innovations Lab has shown, these practices can be as effective as other therapies at relieving pain.

In any case, Dan favors a multilateral approach that works on multiple levels – fixing what’s going on with the body while retraining the brain at the same time. Sometimes, he said, patients are just missing one or two pieces of the puzzle. Virtually everyone who recovers, though, does a number of things together – and that he believes is the secret to recovery.

  • If you have questions for Dan, please add them in the comment section and we can try to cover them in a new interview.

Resources 

The Dan Neuffer Interview on Recovery From ME/CFS and Fibromyalgia: Pt. I – Dan’s Illness Experience

 

Health Rising is not affiliated in any way nor receives any funding from ANS Rewire

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