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Leeds BABCP conference: workshop on emotion processing in chronic fatigue syndrome - stress, abuse & mind-body links (3rd post)

I wrote yesterday about current outcomes achievable through using CBT or GET for chronic fatigue syndrome.  The results of the PACE trial  produced something of an outcry in several patient organizations. Chronic fatigue syndrome (CFS), like for example chronic low back pain, is a very genuine disorder with major disabling physical symptoms. It may be that the possible gains achievable through cognitive therapy and/or graded exercise therapy seem to some people to challenge this view. I certainly don't think they do. I personally can't think of a disease process that isn't affected by our physical state, our emotions, our thoughts and our behaviours.  Consider, for example, the two very physical major causes of death in developed countries - cancer & heart disease.  Two recent studies (Andersen et al, 2008; Orth-Gomer et al, 2009) show that adding a broad focused lifestyle/stress management group to standard treatment dramatically improves outcomes for these disorders.  In the Andersen cancer study, at 11 years follow-up, those randomised to the group intervention halved their risk of death compared to those just on usual care. In the Orth-Gomer heart disease study, those given a broad based group intervention reduced their chance of death by almost threefold over 7 years follow-up. 

Part of this potentially extraordinary benefit achievable via lifestyle/psychological/social interventions for very physical disorders is through benefits in the way the mind effects the body.  This is so important for our self-healing ability.  So in research on "Hostile marital interactions, proinflammatory cytokine production, and wound healing" they found slower wound healing for people in more stressed marriages, and in "Postoperative course after papilloma resection: Effects of written disclosure of the experience in subjects with different alexithymia levels", the authors wrote "The aim of the investigation was to assess the effects on postoperative course after bladder papilloma resection of a technique for the written disclosure of traumatic events in interaction with individual differences in alexithymia. Methods: Forty subjects were administered a general questionnaire and the Toronto Alexithymia Scale (TAS-20) the second day after admittance. Twenty subjects were asked to write for 3 days, 20 minutes a day, about their experience of being in the hospital, following instructions developed by J. W. Pennebaker and coworkers. The postoperative course was assessed objectively by the duration of stay in hospital and subjectively by subjects completing the Symptom Check List 90 (SCL-90) the day before leaving the hospital. Results: Subjects who wrote stayed fewer days in hospital and had lower SCL-90 scores. The same effect was shown by low alexithymia levels. Study of interactions showed that the effect of writing was apparent only in subjects high in alexithymia, whereas subjects low in alexithymia showed a favorable course independent of writing. Conclusions: Writing about one's thoughts and feelings about being in hospital for a surgical operation has beneficial effects on postoperative course. This holds particularly true for high alexithymic subjects, who obtain through writing the same outcome as low alexithymic subjects."

So in the first of these two papers, life stresses slowed wound healing. In the second paper it was found that for rate of recovery following cancer surgery, subjects who were more alexithymic - those who had more difficulty understanding, processing or describing emotions - benefited from an intervention that encouraged them to express & process their feelings about their time in hospital. Is this relevant for some people suffering from chronic fatigue syndrome? Is there any evidence that they are particularly stressed? Is there any research showing difficulty with emotions? Could work on emotions speed recovery for those with chronic fatigue syndrome as it did for the postoperative cancer sufferers? This is an area that Trudie talked about in the afternoon.

And yes there is research suggesting that CFS sufferers are stressed and have some difficulties with emotions. There is even some research suggesting that a focus on these issues can encourage recovery. It's early days though and strong evidence that this is a good way to help many CFS sufferers certainly isn't here yet (and may never be so). It seems very likely that CFS is a "mixed bag" which includes people with a variety of different types of fatigue with a variety of different vulnerability, triggering and maintaining factors. It does seem that for a number of CFS sufferers there are significant predisposing vulnerabilities. So the researchers - in the 2009 paper "Childhood trauma and risk for chronic fatigue syndrome: Association with neuroendocrine dysfunction" - wrote "Context: Childhood trauma appears to be a potent risk factor for chronic fatigue syndrome (CFS). Evidence from developmental neuroscience suggests that early experience programs the development of regulatory systems that are implicated in the pathophysiology of CFS, including the hypothalamic-pituitary-adrenal axis. However, the contribution of childhood trauma to neuroendocrine dysfunction in CFS remains obscure. Objectives: To replicate findings on the relationship between childhood trauma and risk for CFS and to evaluate the association between childhood trauma and neuroendocrine dysfunction in CFS. Design, Setting, and Participants: A case-control study of 113 persons with CFS and 124 well control subjects identified from a general population sample of 19,381 adult residents of Georgia. Main Outcome Measures: Self-reported childhood trauma (sexual, physical, and emotional abuse; emotional and physical neglect), psychopathology (depression, anxiety, and posttraumatic stress disorder), and salivary cortisol response to awakening. Results: Individuals with CFS reported significantly higher levels of childhood trauma and psychopathological symptoms than control subjects. Exposure to childhood trauma was associated with a 6-fold increased risk of CFS. Sexual abuse, emotional abuse, and emotional neglect were most effective in discriminating CFS cases from controls. There was a graded relationship between exposure level and CFS risk. The risk of CFS conveyed by childhood trauma further increased with the presence of posttraumatic stress disorder symptoms. Only individuals with CFS and with childhood trauma exposure, but not individuals with CFS without exposure, exhibited decreased salivary cortisol concentrations after awakening compared with control subjects. Conclusions: Our results confirm childhood trauma as an important risk factor of CFS. In addition, neuroendocrine dysfunction, a hallmark feature of CFS, appears to be associated with childhood trauma. This possibly reflects a biological correlate of vulnerability due to early developmental insults. Our findings are critical to inform pathophysiological research and to devise targets for the prevention of CFS."

This kind of research certainly does NOT mean that all CFS sufferers also experienced child abuse (whether emotional, physical or sexual) and it does NOT mean that - for those who did - therapeutic focus on the abuse history will help their current fatigue. It does mean though that this is an area that warrants further exploration to see if it will provide an additional way of helping some people struggling with apparently untreatable fatigue syndromes. And it does make partial sense of the important findings from the 2007 paper "Investigating the active ingredients of cognitive behaviour therapy and counselling for patients with chronic fatigue in primary care: developing a new process measure to assess treatment fidelity and predict outcome" where it was found that - in this trial comparing CBT & counselling for CFS sufferers - "The key predictor of a good fatigue outcome was emotional processing (in both the group receiving CBT and the group receiving counselling), including the expression, acknowledgement and acceptance of emotional distress. Conclusion: A new process measure was developed successfully which now warrants further testing. It was able to assess treatment adherence and unpack, and distinguish the common factor which predicted outcome across therapy modalities. The findings lend preliminary support to the view that the specific techniques associated with particular 'brand names' of therapy are not necessarily the 'active ingredients' that help patient's change within the primary care setting. Emotional processing predicted outcome for patients with chronic fatigue and therefore future research might explore this in more depth, in order to understand better how it can be facilitated." This certainly fits with the finding in the 2009 study quoted earlier that "The risk of CFS conveyed by childhood trauma further increased with the presence of posttraumatic stress disorder symptoms." And it's not controversial to point out that - when deciding on evidence-based psychological treatment for anyone struggling with difficult-to-treat symptoms in adulthood who has a history of childhood trauma - trauma-focused emotional processing work should certainly be seriously considered as a front-running option. To put this in a broader context, see the important ACE (adverse childhood experiences) study with it's multiple papers demonstrating links between childhood trauma and increased illness & premature mortality in adulthood. See too the helpful downloadable "Adverse childhood experiences (ACE) assessment questionnaire" towards the bottom of this website's page on "Life review, traumatic memories & therapeutic writing".  And the blog posts on Marylene Cloitre's fine work in this area highlight current 'state-of-the-art' treatment responses to consider here.

See tomorrow's post for more on emotional processing in chronic fatigue syndrome

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