I wrote yesterday on stress, abuse & mind-body links that might be relevant for some chronic fatigue syndrome sufferers. There is a good deal of research too on other - possibly linked - vulnerability factors that may predispose some people to later development of fatigue problems - including a number of studies on unhelpful levels/types of perfectionism. See, for example, a series of papers published in 2011 including: "Unraveling the role of perfectionism in chronic fatigue syndrome: is there a distinction between adaptive and maladaptive perfectionism?", "Self-critical perfectionism, stress generation, and stress sensitivity in patients with chronic fatigue syndrome: relationship with severity of depression", "Self-esteem mediates the relationship between maladaptive perfectionism and depression in chronic fatigue syndrome" and "The role of acceptance in chronic fatigue syndrome".

I wrote a little earlier "Is there any evidence that they (CFS sufferers) are particularly stressed? Is there any research showing difficulty with emotions? Could work on emotions speed recovery for those with chronc fatigue syndrome as it did for the postoperative cancer sufferers?" The studies I've cited on childhood abuse and on maladaptive perfectionism certainly highlight some concerning - and in treatment terms, potentially helpful - links. Trudie mentioned a series of six research studies showing that psychological symptoms (particularly depression and anxiety) are considerably more common (by a factor of 2x to more than 7x) in CFS sufferers than in control groups suffering from other major diseases like multiple sclerosis, rheumatoid disorders and so on. There's very interesting work as well showing vicious circles of psychological stress and physical health problems - see, for example - "A longitudinal study of the relationship between psychological distress and recurrence of upper respiratory tract infections in chronic fatigue syndrome" with its conclusion "CFS patients reported more frequent URTIs (upper respiratory tract infections) than healthy controls and these recurrences were preceded by high levels of psychological stress. High levels of stress were also associated with greater subsequent fatigue. Possible explanations of these results are discussed." And there is also an increasing body of work suggesting some CFS sufferers may have difficulty processing emotions. So in the paper "Emotion recognition and emotional theory of mind in chronic fatigue syndrome" the researchers reported "CFS participants were poorer than HCs (healthy controls) at recognising emotion states in the faces of others and at inferring their own emotions. Lower scores on these tasks were associated with poorer self-reported daily and social function." While in "Emotional expression, self-silencing, and distress tolerance in anorexia nervosa and chronic fatigue syndrome" the abstract included the comment "AN (anorexia) and CFS participants were also more likely to judge themselves by external standards, endorse statements reflecting a tendency to put the needs of others before themselves, and present an outwardly socially compliant image of themselves whilst feeling hostile within ... After controlling for differences in age, anxiety, and depression the only significant difference to remain was that observed for the STSS care as self-sacrifice subscale." Rimes & Chalder recently published a paper - "The Beliefs about Emotions Scale: validity, reliability and sensitivity to change" - documenting a questionnaire that they hope will be helpful when working with these issues.

So where does all this leave us? We know that many, many people struggle with severe levels of chronic fatigue that respond only poorly - if at all - to current forms of treatment. It may well be that there are a series of different causes of severe fatigue, so we may need to come up with a series of different improved therapeutic interventions.  Optimal interventions probably vary too with where in the time course of fatigue development one is trying to intervene.  Trudie didn't have the time to go into the relevant slides in much detail but (as often with the development of chronic back pain) initial fear-avoidance following fatigue triggers like glandular fever (or pain triggers like mechanical back strain) may well be a particularly important intervention opportunity in the primary care environment to make a real reduction in the subsequent development of a much harder to treat chronic problem.  In the face of the suffering experienced by fatigue sufferers, the compassionate response is surely to follow up any avenue of potential help that looks as though it might allow at least some people to be better helped.

The great results reported by Andersen et al for cancer and Orth-Gomer et al for heart disease suggest that adding a broad focused lifestyle/stress management group to usual care is worth exploring for fatigues syndromes as well. The findings on increased prevalence of abuse amongst some fatigue sufferers and the ACE research on how this increases likelihood of many debilitating diseases in adulthood makes this an important area to look at too. Finally the sequence of studies showing the commoness of factors like high levels of perfectionism, self-sacrifice, self-silencing and difficulties identifying & expressing emotion makes this too an area to consider. The series of four blog posts on "Our life stories: needs, beliefs & behaviours" gives one map that could be helpful in navigating & suggesting appropriate treatment interventions in this territory. However the disappointing outcomes reported by Tom Borkovec & colleagues last year - "A randomized controlled trial of cognitive-behavioral therapy for generalized anxiety disorder with integrated techniques from emotion-focused and interpersonal therapies" - when following up a parallel set of thoughts for improving treatment of GAD highlights that we will need to be cautious and thoughtful before any claims are made for definite therapeutic value achievable through these new explorations.  Again Trudie didn't have the time to go into possible interventions in much detail, but her slides outlined a proposed "Emotion focused intervention" involving work to a.) improve emotional awareness, b.) reduce emotional avoidance and emotion driven behaviours, and c.) increase tolerance of physical sensations.  There are many research teams exploring this kind of area.  One of my personal favourites is the quite startling work published by Nelis & colleagues - see, for example "Increasing emotional intelligence: (How) is it possible?".  Trudie had a dozen slides (which sadly we didn't get to explore in any detail) on what the emotion focused intervention might involve.  Good stuff.  I wait with fascination to see whether careful research backs up the value of this kind of work.   

Severe fatigue is clearly a very physical disorder with frequently identifiable underlying biochemical abnormalities. The crucial point - hammered home by so many research studies on so many other kinds of physical illness - is that this certainly does NOT mean that psychological & lifestyle interventions aren't likely to be of major benefit. What we all want is that the severe disability & suffering experienced by so many people struggling with horrible chronic fatigue can be helped more successfully - by whatever effective means. It's a therapeutic challenge shared by scientists from many different disciplines and that's very much how it should be.

So the afternoon of Trudie Chalder's very interesting workshop looked at these puzzling, hopeful, gradually emerging findings in this area of chronic fatigue research.  Her presentation gave us more questions than answers.  I talked with her in a coffee break the next day and said I would be very happy to come back to another workshop with her in maybe five years' time.  Hopefully by then we'll begin to have more solid outcome research letting us know whether these mind-body interventions for chronic fatigue syndrome can appreciably improve the therapeutic benefits achievable for at least a significant number of sufferers.  Fingers crossed!  In the meantime, there is enough good data here to give hints to some interested CFS sufferers and their therapists as to what they could try, to build on the worthwhile but very improveable outcomes currently achievable through CBT and GET.