• Chronic Fatigue Syndrome (CFS) is characterised by extreme tiredness and other unpredictable symptoms

  • CFS specialists Dr Gerald Coakley and Beverly Knops share their insights into the psychological components to the condition

  • We have therapists who specialise in working with chronic fatigue and other chronic illness – find them here

The role of psychological factors in ME/CFS (Chronic Fatigue Syndrome) is one of the most controversial areas in medicine. Many people who have lived with the condition object in the most vociferous terms to the suggestion that psychological factors could have anything to do with it.

Many of them have tried therapy and antidepressants and found they didn’t help, so they reject the idea that psychological factors are involved. Some believe that because many physicians and psychiatrists consider psychological factors to be important in the condition, ME/CFS has been starved of funding for research which would by now have solved the physical basis of the condition and its cure.

Accepting, as we do, that ME/CFS is a very real illness that affects people apparently at random and can be life-changing and persistent, we can understand why many dismiss the role of psychological factors. Indeed, considering the large numbers of people who have ME/CFS, it's striking that major government- or industry-­funded research has been lacking until recently. A significant proportion of the research in the field has been funded by patient groups, which seems tragic, considering that many are unable to work. We accept that it is not beyond the realms of possibility that the popular perception of ME/CFS as a condition with a significant psychological component has contributed to this state of affairs.

At the same time, our experience in clinical practice is that when we see people with ME/CFS, they are often in distress. This is hardly surprising. It’s not hard to imagine the impact of developing a condition that is potentially disabling and which reduces their independence. To learn the condition has no diagnostic test, many people have never heard of it or don’t believe in it, and that the guidelines state there is no treatment or cure can only be devastating.

Many with ME/CFS have a series of entirely rational worries: have doctors missed something? Will I ever be well? Can I hope for a normal life? How will I pay my mortgage? Will I be bed-bound forever? Concerns like these are common and normal. However these rational worries can make ME/CFS worse, contributing to a persistent downturn in sleep and mood.

In fact as clinicians who regularly care for people with ME/CFS, we’re always on the lookout for the presence of significant mood or sleep disturbance as something we can treat. We do this not because the fatigue is imaginary, or that psychological therapy will make the fatigue go away, but because anxiety or insomnia triggered by ME/CFS causes a downward spiral in wellbeing, and very often the development of ‘polysymptomatic distress’ (where multiple physical symptoms develop simultaneously in someone with high levels of generalised anxiety). Such symptoms are usually highly amenable to psychological therapy, which can bring about major improvements quite quickly. When we assess new patients, we try to develop an explanatory model for their situation that makes sense to both patient and clinician. Typically, we consider the ‘Three Ps’:

  • Predisposing factors: things like high levels of stress or mental health challenges in advance of becoming ill, which can increase the likelihood of developing fatigue-related conditions
  • Precipitating factors: some kind of (often viral) infection that acts as a trigger 
  • Perpetuating factors: such as disturbed sleep. This is often an accompaniment of ME/CFS and is a perpetuating factor because it makes the condition worse or makes recovery harder

Disturbed sleep can mean sleeping excessively (some patients sleep for more than 18 hours a day), near-total insomnia, sleeping more during the day than the night, or generally having low-quality sleep. 

Not everyone with ME/CFS has these sleep problems, but for those who do, CBT can make a big difference, both to their sleep efficiency and ultimately to their fatigue. Specifically, for insomnia, CBT is the most effective therapy currently available.

The overall life expectancy of people with the condition is no different from that of the rest of the population, but sadly there is a sixfold increased risk of suicide. Seeking and accepting treatment for associated anxiety and depression can help significantly, even though the fatigue persists.

Dr Gerald Coakley and Beverly Knops are the authors of Living with ME and Chronic Fatigue Syndrome

Further reading

How the right counsellor can help you manage ME/CFS

Revealing the mental health effects of Long Covid

Writing a film about my disability helped me grieve

Chronic Fatigue Syndrome: an invisible illness