I’ve just finished reading Joseph LeDoux’s most recent (2015) book Anxious: The Modern Mind in the Age of Anxiety, in an attempt to get a better handle on why I feel so anxious as I recover from CFS, and what I might be able to do about it.

LeDoux is the neuroscientist whose earlier work inspired Ashok Gupta’s amygdala hypothesis for CFS. Another fun fact about him is that he plays music in a band called The Amygdaloids. I’ve noticed that a lot of highly intelligent and creative people love playing music, even if it’s not their main gig in life. My guess is that it exercises the emotional side of the brain that often gets neglected in our overly analytical western society. Writing books about how emotions work in the brain isn’t the same as actually feeling something.

CFS isn’t mentioned in LeDoux’s books, and I emailed him privately in 2010 after reading his earlier book The Emotional Brain to ask whether he thought Gupta’s amygdala hypothesis could be credible. He replied saying:

From: Joseph LeDoux

Hi, thanks for your note, and sorry you are having problems. I can’t really evaluate the program since I know little about both CFS and the program. I would say that if it seems to work for you that is the important thing. I wish I could be more helpful but I don’t want make statements about things that I am not qualified to talk about.
All the best,
JL

Nevertheless, there are a few interesting clues in his latest book Anxious:

His central premise in this book is that the threat response mechanism in the amygdala that activates the fight-flight mode of the sympathetic nervous system is quite separate to the feeling of fear or anxiety that we are consciously aware of. Apparently scientific studies have demonstrated that it’s possible to be in fight-flight mode without actually feeling anxious. Much of the book goes into great detail to explain how the threat response works, and how conscious awareness of emotional states works, and why they should be treated separately in his opinion.

For LeDoux, fear and anxiety are states of conscious awareness very distinct from what’s going on in our amygdala. I’m not a neuroscientist, I’m a computer systems engineer who happens to have informally studied a lot about how the brain works in order to get mine working better; but for me the absolute separation of the functions of threat response and conscious awareness of anxiety in the brain sounds a bit like splitting hairs.

There’s a lot of discussion in the book about how consciousness works, but it’s clearly not fully understood by science yet. Consciousness appears to me to be a high level function distributed across multiple parts of the brain, and I’m not convinced that the amygdala should be completely omitted from the list of components involved in conscious awareness. Oh well, at least he didn’t attribute consciousness to some pseudoscientific sounding quantum effect.

In support of LeDoux’s distinct separation of powers of church and state, I have had experiences where I noticed my heart racing before consciously realising why. I remember being back-stage in acting class one day waiting for my turn to go on and perform in front of my teacher and a classroom full of students. My heart started racing and when I wondered why, I thought of all the things that could go wrong:

  • What if the students laugh at me? (when I don’t want them to)
  • What if nobody laughs? (when I do)
  • What if the teacher dislikes my work, and says so in front of everyone? (they did that a lot at the particular acting school I was attending at the time)
  • What if everyone ends up hating me, and I have no friends?

I distinctly remember all these catastrophic thoughts happening after I noticed my heart racing, which is consistent with the idea that consciousness is not involved in the amygdala’s threat response. Being a quick and dirty circuit in the brain, it can also picks up false positives like mistaking a stick in the grass for a snake. My life was in no danger as I stepped on stage, although there was a potential social threat if I screwed up badly.

Scientists suspect that other animals experience consciousness, but we can’t know for sure since they lack the language to tell us. LeDoux is rather scathing of researchers that infer animal’s emotions from their behaviour, since he considers emotions states of consciousness which we have no direct access to.

Distinguishing between mechanistic autonomic behavioural responses and consciously driven actions in animals is hard. I suspect even this is splitting hairs to some degree, since we know in humans that sufficient practice can shift a behaviour from conscious competence to unconscious competence. From a systems engineering point of view, even in humans emotionally motivated consciously driven actions could just be considered extremely complicated mechanistic responses.

So I’m not convinced that emotions can accurately be modelled as purely products of conscious awareness. What LeDoux calls “anxiety”, I would call “the conscious awareness of anxiety”. There’s so much interconnection between the areas of the brain that to entirely separate the threat response from the conscious awareness of the threat seems like overkill to me. I can understand a neuroscientist taking a reductionist approach to working out how the brain works by breaking it down into all the component parts, but complex systems have emergent properties that none of the components have on their own. Being overly reductionist seems illogical to me if you want to get a reasonably accurate yet still readily understandable high-level model of the brain to problem-solve with.

Another problem I had with the book is that it doesn’t talk much about the mind/body connection. There are only a few passages where he talks about how the brain responds to internal body signals or states. I get that LeDoux is a brain researcher, but I think this is major problem for western science. He treats the body as something external, connected to the brain via nerve and hormone inputs and outputs; but there are just as many neurons in the central nervous system outside the brain as there are inside the brain, and all these neurons are capable of learning too.

It’s a tricky thing to understand the human brain, as it’s the most complex thing in the known universe; let alone to comprehend the system of the human body that it operates in and with. While it makes sense to break such a complex system down to understand how every element is working, I think we need to maintain a big enough picture view to explain a high level function like consciousness and emotional awareness.

An interesting distinction in the book is the difference between “extinction” and “reconsolidation”.

Extinction is the process by which we unlearn conditioned threat responses. In Pavlovian terms, if you keep ringing the bell long enough without providing food, the dog eventually learns to stop salivating. Scientists believe this mechanism occurs by adding a new memory: the dog learns that the bell doesn’t mean food is arriving, rather than be erasing the old memory that the bell is associated with food.

Reconsolidation, on the other hand, is about rewriting an existing memory, rather than just adding a new one. Each time we access a memory, we have the opportunity to alter it. I believe this how emotion-centred trauma release therapies like somatic experiencing and EMDR work. Each time the memory is accessed, the emotional charge attached to it gets dissipated. While he’s not a therapist, LeDoux mentions EMDR briefly along with relatively new mindfulness based therapies like ACT.

One difference between reconsolidation and extinction is that extinction can wear off after a while. Ring the bell a year later, and the dog will salivate again; though perhaps not for as long. With reconsolidation on the other hand, the memory is really altered. Once the emotional charge attached to a memory is dissipated, it’s gone forever.

I haven’t read the research that led to this conclusion, but I’m not entirely convinced. Both extinction and reconsolidation appear to consistent with the model I use with my clients, that memories have an emotional charge attached, and once the emotion is expressed and released, the power of the memory fades. On the one hand, once they’ve expressed the emotional charge on a painful memory, it’s not painful any more; but it can take a few goes to fully release it, and the process sometimes requires repeating over a period of time. There are “layers to the onion”, so to speak.

While LeDoux doesn’t mention CFS, there are a couple of passages that support Gupta’s amygdala hypothesis. On P221 he notes:

The opportunities for arousal to influence information processing in the brain are manifold. The fact that the amygdala itself is a recipient of neuromodulatory inputs means that its processing is also boosted during arousal. As the amygdala drives arousal and arousal in turn drives the amygdala, a self-sustaining reentrant loop is engaged that helps keep the brain and body revved up as long as the threat remains.

This is the feedback loop that the Stop-Stop-Stop technique, The Lightning Process and DNRS are all trying to break.

LeDoux also briefly mentions Stephen Porges’s work on the vagus nerve, on P299:

The descending vagus nerve is the main pathway by which the brain controls the parasympathetic nervous system and thus counters the sympathetic nervous system (fight-flight system), whereas the ascending vagus nerve carries signals about body states to the brain and is responsible for regulating arousal systems in the brain stem.

This is a red flag to me. Michael VanElzakker’s theory that CFS is caused by an infection of the vagus nerve appears to explain everything: the nervous system overreaction, the weird ass array of bodily symptoms, and the fact that many people come down with CFS after a variety of different types of infection.

I have a friend who developed such severe CFS that she literally couldn’t move her body, and her HHV6 count was extremely high. A blood test of mine detected the glandular fever virus (Epstein Barr virus). A former client had lyme disease before developing CFS. Some viruses, like the endemic HHV6, like to live in nerve tissue. The vagus nerve triggers our sickness response, which would explain why have a constantly runny nose and cough that gets worse when I’m under stress. While I suspect that Ashok Gupta and Phil Parker are correct that an overstimulated amygdala is probably part of the syndrome, I can’t see how that alone would give me a runny nose and persistent cough.

One thing that I notice all treatments I’ve come across for CFS have in common, is that they include components that reduce stress. Whether it’s Amygdala Retraining, Mickel Therapy, The Lightning Process, DNRS, ANS Rewire, CBT, graded exercise (when it doesn’t make things worse), eliminating dietary sensitivities or non-specific treatments like yoga, tai-chi and meditation: all of them reduce stress. People who experience cold sores caused by the Herpes Simplex Virus, know that outbreaks are most likely when they’re under stress. Otherwise the virus lies relatively dormant in the nervous system tissue.

Most people I’ve met with CFS came down with it after a prolonged period of stress. It makes sense to me that if stress suppresses the immune system long enough for an opportunistic infection to attack the vagus nerve, down you go. The hypothesis is difficult to confirm because you can’t easily biopsy your vagus nerve to determine that it’s infected. You’re almost certainly carrying the endemic HHV6 virus, but simply checking that you have it doesn’t prove that it’s living in your vagus nerve.

So, what to do?

If the vagus nerve hypothesis is correct, given the side-effects and limited effectiveness of antiviral drugs, the best treatment currently available for CFS is probably to:

  • Rest when you’re exhausted
  • Deal with your life stressors
  • Eat a reasonably healthy diet that supports your immune system
  • Engage in as meaningful and enjoyable a life as you can

… while your immune system combats the vagus nerve infection. Getting support and guidance in person, from a specialist clinic or from one of the recovery programs available online makes sense too.

Being anxious much of the time is pretty stressful. LeDoux’s book is pretty light on when it comes to practical aspects of dealing with anxiety since he’s a neuroscientist not a therapist. Especially for chronic anxiety not tied to any identifiable threat that can be extinguished or reconsolidated, like feeling ill all the fucking time. It appears that an effective approach for dealing with generalised anxiety is to deal with all the specific anxiety triggers that you do know about; so tackling specific anxieties that you are aware of is probably a good idea.

In LeDoux’s model of the brain, threat response and conscious awareness are separate. Effective psychotherapies involve moving unpleasant emotional states and memories from our unconscious where they are outside our couscous awareness but still affect and control us, into conscious awareness where we can deal with them.

I remember an interview I listened to online a few years back with Dr Mickel of Mickel Therapy, where he said that some of his patients experienced a lot of anxiety as they were recovering. My EMDR psychologist said in our first session: “It may feel worse before it starts to feel better”. If I feel anxious because the exposure of reengaging in life and doing EMDR are shifting the threat response from my amygdala into conscious awareness where I can deal with it, then the anxiety could be a sign that I’m actually recovering. I do seem to have a little more energy most of the time. I’ll talk more about EMDR when I’ve had a few more sessions.

Avoiding going out of the house because you’re afraid that you’ll be too sick to do what you want probably isn’t a good idea; but then going out if you really are too ill and then feeling terrible probably isn’t good either because that’s just going to reinforce the anxiety next time, not extinguish it. I think it’s important to engage in activities that are fun and enjoyable, not just therapeutic. Most forms of medical or alternative treatment for CFS don’t pass this test for me: They’re just not much fun.

So from now on I’ll be spending less time blogging and exploring cures for CFS; and more time playing music. I’m currently studying music full time at college… and loving it! I’ll talk more about that another time too.

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Graham Stoney

I'm a guy in his early 50's, recovering from Chronic Fatigue Syndrome and Severe Obstructive Sleep Apnea.

12 Comments

Daniel · March 1, 2017 at 9:22 PM

Great post Graham, very thought provoking.. I think there is definitely something going on with the nervous system, it’s like it has become highly sensitised, any form of stimulation whether its physical, mental or emotional seems to leave us with symptoms. Some believe we need to reduce our overall stimulation and then slowly expose ourselves to stimulus to gradually desensitise the nervous system. I find mental exertion can be as tiring as physical exertion.. Need to switch off devices and get into nature more..

    Graham · March 5, 2017 at 10:30 AM

    Thanks Daniel. Yes I think you’re absolutely right.

Steven · February 27, 2017 at 5:12 PM

Nice post! Just thought that I would add that you are correct a lot of Cfs and other illnesses are brought on by stress. However, contracting a virus is also a stress on the body and can be the straw that breaks the camels back and sends them into adrenal fatigue/Cfs which has a lowered immunity system leading to chronic cold symptoms.

Elizabeth · February 22, 2017 at 1:51 AM

Interesting and informative post.
Finding what to do about anxiety etc is a long term project in my opinion. I think it has to do with subconsciously and consciously letting go of beliefs. I have had a lot of luck with eft and chakra healing.
Glad to hear you are pursuing your music.

    Graham · February 24, 2017 at 4:08 PM

    Thanks Elizabeth. Yes, I think you’re right.

Sandy · February 21, 2017 at 9:59 PM

Excellent post. Some of what you say reminds me of bits of the book The Power of Habit – where habits are not part of our consciousness. I think the fight- flight response is a habit, in some ways.
The lack of awareness of connection between mind/brain and body baffles me. Did you know that the stomach produces more serotonin than the brain? Serotonin is involved in mood and sleep. The whole body is connected to the brain via the nervous system. When I have seriously overdone it and can hardly move (to me, everything feels stiff and heavy) it’s not because there’s anything ‘wrong’ with my arms and legs, it’s because of my brain and nervous system.

I am so fed up of PTSD and CFS. I have decided to just have more fun in my life, too. I am thrilled to learn you’re doing a music course! Yay! That’s fantastic. I’ve just begun a course called Start Writing Fiction, and I’ve taken up the ukulele. Oh, and we got guinea pigs. I think Guinea Pig Therapy should be a thing. Cuddling these cute little creatures as they chatter away is lovely. They are very nervous little things. I can sometimes even see my own responses in their nervous ways. They were rescued from awful conditions where they had never been handled and lived in the dark. We got them at eight weeks old. They’re now about 12 weeks old and so tame it’s unbelievable. Lots of love and affection has brought them to a far less nervous state. I guess that’s where I see the similarities. Just call me The Guinea Pig Whisperer 😉
I have a son with autism who suffers HUGE anxiety and that’s very difficult to deal with, and I’m sure it doesn’t help my illness, but I’m his mum so I have to be there for him. It does take its toll on me, though, and I’m sure it affects my health, but yes, having more fun is what I’m focusing on, for him and for me.
Bless you, Graham. Great to read that you’re doing ok. Would love to read more about your theories, because I think you’re onto something, and what’s been going on in your life.

    Graham · February 24, 2017 at 4:05 PM

    Oh cool! I learned to play Ukulele over summer using Yousician. It’s heaps of fun. The finger-picking was also great practice for the guitar exercises I’m learning at college. Love and affection sounds like the key, Guinea Pig Whisperer. I hope you find a way to get mutual support with your son. As Joseph Campbell said: “Find a place inside where there’s joy, and the joy will burn out the pain”. Thanks for the encouragement; you’re welcome to continue following me on my main blog.

Michael Mueller · February 21, 2017 at 2:14 PM

Wow thanks for the article, I have been through Mickel Therapy and once things started to clear up for me I started to suffer terrible anxiety, I didn’t know this was a common thing. I went on to anti anxiety medications to deal with it which work but I wonder if they don’t affect my recovery.

    Graham · February 21, 2017 at 4:34 PM

    Hmm… interesting. I wonder how common it is. I certainly don’t blame you for going on anti-anxiety medication; it can be pretty hard-core. I can’t speculate on whether they might adversely affect your recovery. As a general principle I think it’s better to feel and express feelings rather than medicate them away, but when they’re overwhelming you need some way of dealing with it! Cheers, Graham

Sipora · February 21, 2017 at 11:59 AM

I wonder why he isn’t interested in talking about Cfs. I bet a lot of people have tried to talk to him about it. I did years ago. He recommended a psychiatrist to me. Turned out to be an excellent psychiatrist!

    Graham · February 21, 2017 at 4:35 PM

    Just not his area of interest & expertise I guess. Glad you found an excellent psychiatrist though!

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