Below is a letter I submitted to the editor of Cognitive Behaviour Therapist. This journal does not publish letters so I thought it was worth publishing.
Letter to the Editor
Dear Dr Pamela Myles,
From the outset Gerskowitch et al’s paper (2015) presents a model of understanding of CFS as a psychological and behavioural disorder that can be ameliorated by behavioural and psycho-therapy. This expectation from the researchers was not met in the outcomes. Objective measures were not used either. No pre and post structured interview or assessment of symptoms were undertaken. “Only four participants reported improvement in physical symptoms with seven reporting a worsening in physical symptoms (p11).” This aspect was given minimal attention. At no point do we find out what it means to patients who experienced a worsening of symptoms nor was this explained within the context of the researchers’ hypotheses and model of understanding of CFS. Why was more emphasis not made of this vital point, something that has been raised in the literature (Kindlon, 2011) and highlighted many a time by patients and their organisations (AfME, 2008; MEA, 2010; MEA, 2015)? If we conducted trauma focused CBT with clients with PTSD and achieved such an outcome would we realistically continue? Moreover, it seems difficult to weigh up on the one hand that, “participants generally reported a positive experience of treatment (p1)” whilst simultaneously reporting a worsening of symptoms while the researchers appear to conclude that this “appears to be acceptable (p1).” The above patient surveys report a different picture. The possibility of attribution errors and bias such that patients put a positive spin on how they are feeling to please their therapists and researchers was not explored.
Furthermore, the authors accept the much criticised, weak case definition from NICE (2008). CFS, otherwise referred to as myalgic encephalomyelitis (ME), has been classified by the World Health Organisation (WHO) as a neurological disorder since 1969, with CFS added in 1993 (WHO, 2007). The core symptoms of ME are post exertional malaise (PEM) (Jason et al., 2010) and an inability to produce energy on demand (Carruthers et al., 2011), not fatigue. Fatigue is a vague term and can mean anything from a feeling of mild tiredness to an overwhelming need to stop activities and rest or sleep. It is a symptom of pretty much every physical and psychiatric disorder. It is not specific to any one condition. PEM on the other hand includes sensations of overwhelming debility, weakness, inability to generate energy and flu-like malaise after even trivial activity (Carruthers et al., 2011). It perhaps does not help to confuse or conflate the two. This can lead to the minimisation of clients’ difficulties and misunderstandings about their needs and perceived capabilities especially as this post exertional malaise can be demonstrated objectively (VanNess et al, 2010) along with exercise intolerance (Black & McCully, 2005) and the objective inability to produce energy on two consecutive days (VanNess et al 2007).
Perhaps to achieve a meaningful reduction in levels of distress clients need to experience at least minimally Rogers’ necessary and sufficient conditions. The minimisation or psychologisation of client’s symptoms is disrespectful, no matter how subtle or well-meaning (Meares & Hobson, 1977; Goudsmit, 2002), making it unlikely that clients’ would have perceived their therapy as unconditional (Rogers, 1957) making it implausible that distress would be ameliorated – the result which was by in large achieved here. It seems quite possible that meaningful reductions in distress can be achieved when clients’ conditions and the limitations that are imposed by them are respected. I suspect only then can clients truly adapt to their changed circumstances and learn to care and respect themselves with deep compassion (Gilbert, 2010).
References:
Action for ME (2008). ME: What progress? Retrieved 10th December, 2010 from,
http://www.afme.org.uk/res/img/resources/Survey Summary Report 2008.pdf
Black CD & McCully KK (2005). Time course of exercise induced alterations in daily activity in chronic fatigue syndrome.
Dynamic Medicine 28, 4-10.
Carruthers BM, van de Sande MI, De Meirleir KL, Klimas DG, Broderick G, Mitchell T, Staines D, Powles ACP, Speight N, Vallings R, Bateman L, Baumbarten-Austrheim B, Bell DS, Carlo-Stella N, Chia J, Darragh A, Jo D, Lewis D, Light AR, Marshall-Gradisbik S, Mena I, et al. (2011). Myalgic encephalomyelitis: International Consensus Criteria.
Journal of Internal Medicine 270, 327-338.
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf
Gerskowitch C, Norman I, and Rimes AR (2015). Patients with medically unexplained physical symptoms experience of receiving treatment in a primary-care psychological therapies service: A qualitative study.
The Cognitive Behaviour Therapist 8.
Gilbert P (2010).
The compassionate mind. London: Constable & Robinson Ltd.
Goudsmit EM (2002). The psychologisation of illness. In J.Brostoff & S.J. Challacombe (Eds.)
Food allergy and intolerance (pp.685–693). London: W.B.Saunders & Co.
Jason JA, Evans M, Porter N, Brown M, Brown A, Hunnell J, Anderson V, Lerch A, De Meirleir K, Friedberg F (2010). The Development of a Revised Canadian Myalgic Encephalomyelitis Chronic Fatigue Syndrome Case Definition.
American Journal of Biochemistry and Biotechnology 6, 120-135.
Kindlon T (2011). Harms of cognitive behaviour therapy designed to increase activity levels in chronic fatigue syndrome: Questions remain.
Psychotherapy and Psychosomatics 80.
Meares RA & Hobson RF (1977). The persecutory therapist.
British Journal of Medical Psychology 50, 349-359.
ME Association (2010).
Managing my M.E. What people with ME/CFS and their carers want from the UK’s health and social services. Retrieved, 1st December, 2010 from
http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf
ME Association (2015).
ME/CFS illness management survey results “No decisions about me without me.” Retrieved, 20th August, 2015 from
http://www.meassociation.org.uk/wp-...No-decisions-about-me-without-me-30.05.15.pdf
VanNess JM, Snell CR, Stevens SR (2007). Diminished cardiopulmonary capacity during post-exertional malaise.
Journal of Chronic Fatigue Syndrome 14, 77-85.
VanNess JM, Stevens SR, Bateman L, Stiles TL, Snell CR (2010). Postexertional malaise in women with chronic fatigue syndrome.
Journal of Woman’s Health 19, 239-244.
World Health Organisation (2007).
International Classification of Diseases ICD-10. Retrieved, 3rd December, 2008 fromhttp://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933
