Sep 22, 2022
Dr Gerald Coakley Beverly Knops
Sep 22, 2022
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':
Dr Gerald Coakley and Beverly Knops
Dr Gerald Coakley has worked in the NHS for over 30 years. He has been a Consultant Physician and Rheumatologist in South London since 2000 and was a Director of Medical Education for 10 years. Since 2001, he has been involved in the care of people with ME/CFS, and runs a weekly private Fatigue Clinic at Keats House and at The Harley Street Clinic. Beverly Knops Dip COT, MRCOT, MBACME is a Specialist Occupational Therapist with more than thirty years' experience. She has spent the majority of her career working with people experiencing persistent pain and fatigue. She worked in North Bristol NHS Trust NBT for twenty-nine years, starting in the rheumatology service, then moving into the Specialist Pain and ME/CFS services.