A Messed up Fight-Flight-Freeze Response? How I made sense of my ME/CFS, and how my explanation may help you too.

When I first read about the idea that ME/CFS was caused by the fight-flight-freeze response being on all the time, my reaction was doubt. There are many, many theories about what causes ME/CFS, was this just another one? Then as I learnt more about the fight-flight-freeze response, I found myself asking ‘How well does this fit with my experience?’ Instead of falling down, as many of the other theories had, I found it did quite a good job of explaining what had gone on for me. Without meaning to, I’d found a useful technique: take a hypothesis and see how it fits with your situation, see what it explains and what it doesn’t. I am hoping that by writing this post, some of you may be inspired to do the same whether with this ME/CFS ‘theory’ or another one.  Shortly, after I first published this post, an article by the ME Association (UK)  on the fight-flight-freeze response was published. It is good background reading to this post.  Summary Review: The Dysfunctional Autonomic Nervous System in ME/CFS.

There were a few things that helped me to be open to the idea that the fight-flight-freeze response was a major factor in ME/CFS. The first one was that the fight-flight-freeze response to a threat is an instinctive one i.e. outside the control of the conscious brain. Like many – if not everybody – with ME/CFS, I knew that ME/CFS wasn’t ‘in my mind’, I knew I wasn’t making it up, I knew ‘just thinking right’ wouldn’t heal me. With an instinctive response, you can’t stop the response; it happens before your conscious mind realises what is going on. The physical responses in the body – the excess of hormones, the tightening of the muscles – are well in place before there’s any possibility of a conscious response to a threat.

The second aspect that I found helpful was when I realised that the fight-flight-freeze response isn’t as simple as it is portrayed in school or on Wikipedia. It’s not just about your heart rate going up and your body going on alert. The effects are broader, subtler and more complex and it is often happening when we are not aware. This is true for everybody not just people with ME/CFS. I also started to realise how broad the definition of ‘threat’ needs to be to cover all the times the fight-flight-freeze response might be triggered: arguments, criticism, embarrassment, driving, starting a new job, relationship difficulties, visiting new places, deadlines, air travel, rushing to get somewhere. The fight-flight-freeze response is also called the stress response and I’d always thought this meant it happens when somebody is really, really stressed but the biological definition of stress is simply a physical, mental, or emotional factor that causes bodily or mental tension.  So even a minor occurrence – if it causes tension in your mind or body – can trigger the fight-flight-freeze response.  When you think of it in that way, the list could go on and on and on and, for somebody with ME/CFS, the list is even more extensive. Scientists are also starting to see that there is a third type of response to a threat: a freeze response where this is the most likely response in today’s world. This fits with how it feels to me.  It has even been suggested by recent research (2019) that our ME/CFS body has gone into the ultimate freeze state of hibernation as a means of survival.  A very interesting concept.

(Since I first wrote this post, the term fight-flight-freeze response has become much more common (rather than the term ‘fight or flight’ which I originally used. I have updated this post to reflect that.)

The third aspect that started to convince me about this concept was the experience of having a  major relapse.

In the weeks that I lay in bed after my major relapse happened, I questioned myself over and over again: ‘How could I have missed what was happening…How could I have got into this mess?’ The four months or so before my relapse began, I was involved with helping my elderly parents move to a much smaller home. I was doing about 10 to 15 % more than I would have normally done – a level I thought I could do – but I didn’t realise that my stress levels were about 500% higher than normal. Having a very upsetting argument with a family member was the last straw. Within a week I was in bed and off work for eight weeks. A few months later, looking back, I realised I just hadn’t understood the devastating impact stress could have on a ME/CFS body. I could see how the fight-flight-freeze response had been on extremely high alert for three or more months. No wonder, when I ‘shocked’ my body with even more of an overload of stress chemicals through having such a stressful argument, my body had had enough.

My whole body felt so stressed and tense that I started to do four or five relaxation practices a day. It was as if I was ‘wired’ much of the time, as if – looking back – my fight-flight-freeze response was on top alert all the time, and whatever I tried, I couldn’t bring it down.

One day, I found a comment about how the fight-flight-freeze response was evolved thousands of years ago to protect humans against the threats a hunter/ gatherer might experience. Reading this view made me think about what the fight-flight-freeze response didn’t consider a threat all those years ago, and whether that continued to be true. An environment of natural light and sound, a ‘world’ of only, say, thirty people who a person had known all their life, simple food, and a world that you can only walk to. Suddenly how much energy I had at the end of my summer holidays made sense: a holiday where I camped and walked, using the car as little as possible, and, limited by language barriers, talked mainly to my partner, surrounded by natural light and sound, cocooned from the modern world.

This also fitted with the knowledge that the sympathetic nervous system (of which the fight-flight-freeze response is part) and the parasympathetic nervous system (which is all about relaxing the body) cannot be both switched on at the same time. Actually my experience is that as one starts to switch on the other lessens, as if they have to share a pie: the parasympathetic system could be 95% on, meaning the sympathetic nervous system is only 5% on, and vice versa. It certainly felt like the only time I managed – even with my regular mindfulness and relaxation practices – to be really, really relaxed was when I was on holiday and this was the time I had the most energy.

It makes sense that the hunters/ gatherers were relaxed most of the time but with the sympathetic nervous system still a little bit on alert, just enough to be ready to respond to dangers.  You only need to start reading up about the health implications of stress to realise that the healthiest way for our body to be is mainly relaxed.  If we think of the sympathetic nervous system as the emergency system, it becomes even clearer.  For the body to be functioning in the way it’s meant to, for it to be achieving balance (homeostasis in biological terms), the fight-flight-freeze response needs to be switched off.

Now that I have recovered from ME/CFS, I can see that a trigger of the fight-flight-freeze response can create immediate physical symptoms in me. When I attended the Breast Cancer Clinic recently to have a routine mammogram, I knew it was going to be uncomfortable and I wasn’t looking forward to it but I didn’t expect to have to sit down for twenty minutes afterwards because I felt ill with exactly the same side symptoms I used to get when I had ME/CFS. My unconscious mind obviously thought the mammogram was more threatening than my conscious mind did!

One of the confusing aspects of ME/CFS is the variety of side symptoms a person can have. But what if they could all be linked to a person’s unique reaction to a messed up fight-flight-freeze response, to what their body sees as a threat and to which physiological systems the fight-flight-freeze response pulls energy from? Some people’s bodies might respond by being sensitive to noise, others to chemicals, others through tension migraines or skin outbreaks etc. Some people with ME/CFS may benefit from supplements (or drugs) that target a particular body system whilst others might not. If that is the case, it’s easy to see how researching into ME/CFS may not bring up clear answers.

I could see how this hypothesis could explain how the fatigue was held in place but none of this explained what causes the ME/CFS in the first place. Why do those with ME/CFS have it when many people with apparently more stressful lives don’t? The only suggestion I came across was in an Eden Energy Medicine (EEM) blog, the alternative therapy that helped me to recover.  In the blog, writing about how EEM practitioners could help those with ME/CFS,  ‘Clinical Approaches to ME/CFS , Prune Harris states:

‘I have yet to work with anyone experiencing ME/CFS who did not have a trauma 1-3 years before the onset of ME/CFS.’

At first, I couldn’t see what my initial trauma might have been but I knew the two times my ME/CFS had dramatically deteriorated were both just after a trauma. One was after a failed fertility treatment and the second time was after a major disagreement with a family member. That fitted and – yes – about three years before my energy started to nosedive, I had been devastated at losing my job. When I first read this idea I thought of trauma as an extreme event, something that not many people experienced, but gradually realised it could be broader than that. It could be anything that you find ‘deeply distressing or disturbing’. All of these situations would fit into this category for me – all of them had a very great effect on my life. All of them took a long time – and quite a bit of anguish to resolve.

I’m not sure how trauma creates fatigue in the body – and I’m sure many scientists would be quite sceptical about a link between trauma and physical disease, though I have found hints of an understanding of the effect of trauma on the body. But I can see it’s possible and – to me – science often lags behind our understanding of everyday life. Science has very strict requirements for proof and in an area like this, where it is very difficult to create a robust research project, it is going to be many years before there is conclusive scientific proof one way or the other.

(Since I wrote this blog, I have found more and more information about the link between trauma and physical illnesses, about the link between adverse childhood experiences and chronic illness. Head over to Veronique Mead’s blog (a doctor recovering from ME/CFS) for much more about this topic.)

In cases like this, it seems to me, we can only go with what makes sense for ourselves in accepting or rejecting a hypothesis. We can ask ourselves questions such as:

How well does this theory explain my experience of ME/CFS? What doesn’t it explain?
Are there any signs that science might support some aspects of it?
If I’m happy with the fit, how can I use this understanding to help me manage my chronic fatigue syndrome?
If I’m looking at different treatments, what is that therapy’s understanding and treatment of ME/CFS? Could I see that treatment working for me?

Certainly – looking back – I can see that of all the actions I took the ones that helped me the most all soothed and calmed my fight-flight-freeze response, and the  treatment that I chose (Eden Energy Medicine) was unusual in its focus – and care – in working with the fight-flight-freeze response.  Keep an eye on my blog if you want to see more posts about how I did this.

When you have ME/CFS, you can feel powerless in so many aspects of your life. Let’s hope this article prompts you on a journey where you end up feeling a little bit more in control whether because you have an idea of how to make your ME/CFS as manageable as possible or because you are exploring options for recovery.

Hope you have found my simple explanation – without any techy words – to be useful and easily understandable!

All the very best!

Ali

If you have found this post interesting, you may want to look at Background reading to ‘A Messed up Fight-Flight-Freeze Response?’.

 

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If you are part of a ME/CFS forum or group – and have found this blog useful, please consider posting a link to my blog and sharing with people you know. I wish I’d known years ago that energy medicine could help me and, I’m guessing that there are other people out there in a similar situation who may be helped by what I’ve written. I hope so!

Also, if there is a topic you would like to see a blog on or if any of the links aren’t working, please email me (via Contact page) or add a comment in the box below.

Thank you.

Ali

 

 

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