Healing from ME/CFS: The Value and Limitation of a Psychosomatic Approach

A few days ago I was describing to a friend of mine what my experience of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been like.  I’ve had ME/CFS since at least 2016, when I had to pull out of a PhD program that I had invested seven years of hard work into — though prior to this I’d already been in a two-year mental burnout in which it was an incredible strain to do things that needed mental focus.  In 2016, I became unable to do anything that required physical exertion as well (such as the karate classes I was taking at the time), and this both physical and mental incapacity became an unchanging reality in the years following.  I said to my friend a few days ago that the best thing for me is being able to challenge myself to push my boundaries, while also being able to pull out of a situation the moment it becomes objectively too difficult for me.  But the problem with most serious things I’ve wanted to do in my life is that they demand commitments — to projects, deadlines, communication with others and generally “showing up”.  Committing myself to structures that I can’t control has consistently been the main cause of setbacks in my journey to health.  The result has been not just more fatigue but an experience of complete physical crisis that is too scary to describe here in just a few words.  But it is also hard to stamp out the flickers of ambition that keep saying “Do something tangible in the world already, don’t just…be!”

I never gave up wanting to complete the PhD, but I never came close to being able to return to it.  In the years since 2016 I have had to give up on a series of projects (including some articles I had written complete drafts of or counseling-related workshops I’d organized) each much more trivial than a PhD dissertation.  It has sometimes been tempting to blame myself for not being passionately committed enough to see those things through to completion: that is, I could have returned to them after my physical agony and exhaustion subsided.  However, it is hard to say where energy ends and passion begins.  In other words, is it possible to have strong passion without strong energy?  Further, is it possible to have strong passion when attempts at doing things repeatedly lead to suffering and to existential questions about how much something is really “worth it”?  On the other hand, it may be true that passion brings energy, which brings one back to the question of whether lack of strong feeling and love for one’s work has been the cause of the inability to do more.  I believe that other ME/CFS sufferers may be familiar with these doubts.

In the conversation I had a few days ago, I told my friend that one of the main things I have been grateful for in my experience of ME/CFS is that it has given me a window into the suffering that so many people with chronic illnesses — especially invisible chronic illnesses — experience.  I said that whenever people describe a person they know as claiming to be ill but probably only imagining it (which is something I hear from time to time), I instinctively believe there is another side to the story.  A side where incapacity can be experienced day in and day out and never be visible to people who do not live with the person or observe them in their private moments.  (In my case, I know I’ve always seemed normal to people, and even quite mentally energetic, because of the surge of adrenaline that comes from being around others, but that the crash comes immediately afterwards and usually in proportion to how physically and mentally active I allowed myself to be).  My friend immediately volunteered that she has been too judgmental herself of people with chronic illness, and mentioned a friend of hers who has been ill with multiple problems in the last several decades, who she has tended to assume was “not challenging herself enough” and in a way wishing herself into an ill state.  I appreciated her admission, but also couldn’t help feeling for her friend who was probably being misunderstood by many of those close to her.

One of the debates in the ME/CFS community is about how helpful and how respectful any explanations of the illness are that treat it as psychosomatic.  I’ve always shared the instinctive aversion to the word “psychosomatic.”  It seems to minimize the reality of the condition.  It also gets doctors off the hook for not having answers for how to treat it, as it’s not their business to treat problems that are caused by the mind rather than a physical disorder.  It also seems to incriminate the patient themselves for obviously not thinking the way normal people do, whatever that is, and for bringing or imagining themselves into a state of illness.  That is, either the person wishes to be ill, and is creating that into a reality, or the person is just so internally distressed that the distress is leading to a state of physical illness.  Yet research shows that most ME/CFS patients do not suffer from depression, and are in fact quite goal-driven people, so sufferers understandably object to being dismissed as psychologically maladapted.

At the same time, anyone who deals with chronic illness cannot be blind to the fact that psychical states impact physical well-being.  This is why guided meditations or even affirmations can positively affect symptoms.  It would be counterproductive to give up using psychosomatically-informed approaches.  But this may hold for all physical illness: for instance, stress levels have been correlated with cancer, which indicates that the psyche and the body do not behave as completely separate systems.  As Joe Dispenza’s book, You Are the Placebo underlines, the existence of the placebo effect is proof that beliefs can have real, measurable effects on physical states.  There is value in learning to harness this power (often called “mind over matter”), as there is likewise value in using the state of the body as a tool by which to read into unaddressed problems of the psyche.  This doesn’t mean, in some facile way, that there is in each person a direct correlation between levels of psychical wellness and levels of physical wellness. But one of the main advantages of experiencing mysterious chronic illness — illness that doctors throw up their hands at — is that it pushes one to discover and explore these intangible, even spiritual dimensions of one’s being, and the multitude of therapeutic approaches that have been put together from studying them. 

One experience that converted me personally to focusing on the psychical-physical connection was a visit to a healer and spiritual guide living in western Crete four years ago. When I described my illness to her, she opened up a large book of hers that contained accounts of many different illnesses and their causes.  She found an entry relating to chronic fatigue syndrome and read it out to me.  I do not know the name of the book, but I still have the recording of her off-the-cuff translation from German to English of the entry.  The entry said I was “building and planning my life with my mind” rather than “living out of my deepest feelings” and rather than “listening to my intuitions”; that I needed to stop seeing myself as something unfortunate or deficient because this “cut me off from the source of life and energy” within me.  Further, I needed to let go of material things and “give myself full of trust to myself.”  The account rang true to me: I had spent the last fifteen years of my life consciously trying to transform myself from being what I saw as ignorant and passive into someone who had mastery of different kinds of knowledge and could be a force to be reckoned with.  I hadn’t admitted to myself that this meant I was losing my authenticity – my authentic sense of rhythm and drive – and holding myself to standards that were external, because they involved comparing myself to others. 

The problem with most attempts to label ME/CFS as psychosomatic may be not so much that it is incorrect, but rather that it wrongly isolates ME/CFS (or other kinds of mysterious chronic illness) in this regard, suggesting that ME/CFS is not also equally physical, and at the same time that regular physical illness does not have a psychosomatic origin. In reality, medical research is needed just as much for ME/CFS as for any other kind of physical illness.  It can be mentioned that the number of people suffering from it is quite vast, and has only grown with the emergence of “long Covid” in tens of millions of people (as “long Covid” cases have a noted overlap with ME/CFS).  But it is simultaneously true that an inquiry into psychical causes, and into the journey of personal development that our illnesses might paradoxically be urging us onward in, may be relevant in some measure for all physical illness.  Only the holistic movement in Western medicine, which treats the person as a whole and not as parts, recognizes this.

Finally, if one is to consider psychosomatic causes for illnesses such as ME/CFS, it is important not to do so in a facile or demeaning way.  For instance, the idea that people with ME/CFS are not doing more with their lives because they secretly enjoy dependence or because they are not goal-driven is probably wildly inaccurate.  From my personal experience, and from what I’ve learned of ME/CFS patient community, the problem is much more likely to be that they are too achievement-oriented and this has over time compromised their health in a decisive way.  But it is probably best of all not to speculate, let alone to lecture to someone, about their inner states and personal journeys, as this will almost always be perceived (and probably rightly) as patronizing.  Maybe the best thing is to encourage ME/CFS sufferers to consult their own intuitions about what the next step is for them, and what the real conditions of healing for them are.

After our talk, my friend did some research online and happened to discover that this very week was ME/CFS Awareness Week, which she immediately mentioned to me, leading me to put together and share these reflections.  I am grateful to her and to all others who have allowed themselves to be curious about this condition, and wanted to be part of the effort to address it.