ME/CFS and unhelpful beliefs

The Wessely School approach to ME/CFS and MUS hypothesizes a causative role for unhelpful beliefs (H1), deconditioning (H2), and biased attention (H3).

The evidence related to these three hypotheses is reviewed in turn. Here I consider H1: that unhelpful beliefs cause, or exacerbate, the symptoms of ME/CFS and MUS.

Future posts will review the evidence for H2 and H3.

Do unhelpful beliefs cause, or exacerbate, the symptoms of ME/CFS and MUS?

Unhelpful or dysfunctional illness beliefs referred to by the Wessely School include:

  • The belief that ME/CFS symptoms are the result of a physical illness (Note: if ME/CFS actually is a physical illness, the belief would be a true belief, and the only way it could be said to be unhelpful would be for a therapist wanting to claim otherwise)
  • The belief that ME/CFS needs medical treatment (physical treatment only)
  • The belief that exercise or too much activity has “harmful effects” which leads to “fear of exercise” (so-called ‘kinesiophobia’)

There is a huge evidence-base from studies relevant to beliefs, ME/CFS and MUS, which can be estimated to number in the thousands. However not all beliefs are dysfunctional beliefs. Also, as is typical in psychological research, the vast majority consist of cross-sectional studies which carry no evidential weight for or against any causal hypotheses.

Another sizable section of articles consists of narrative reviews, which, like this article, are intended to provide an interpretation of the evidence but do not and cannot provide a definitive case for or against causation. A small section of studies are randomised controlled trials (RCTs) which, if well-designed with appropriate controls and outcome measures, can indicate causal associations between treatments and outcomes.  A small number of prospective, observational studies offer support for the role of beliefs in illness, but not specifically ‘unhelpful beliefs’.

The table presents a set of studies which have been chosen to be representative of the literature.

Table 1. Research on Unhelpful Beliefs, Illness and Interventions

STUDY  DESIGNPUBLICATIONSFUNDINGCONCLUSIONS AND/OR INTERVENTIONS
Cancer prevention and prologation of life    

Narrative review interpreting ‘unsafe’ data
Eysenck, H. J. (1987). Some publications by Hans Eysenck on this topic were deemed ‘unsafe’ by a KCL Enquiry. To date, 86 papers are retracted or flagged for concern (Retraction Watch Database, 2021). However, several dozen of H J Eysenck’s publications based on the same ‘unsafe’ data-sets  remain unretracted and this form part of the scientific literature.None reported. However it has been established that the tobacco industry had secretly contributed large sums towards the project (Buchanan, 2010; Pelosi, 2019).  Hans Eysenck’s conclusion was stated as follows: “A detailed discussion is given of work …on the relationship between psychosocial factors and cancer. including the prophylactic use of behaviour therapy …to make possible the prevention of cancer or the prolongation of life in patients who are incurably ill.”   In spite of the fact that Hans Eysenck’s research on personality and cancer was funded by undeclared tobacco industry sources, the publications remain in the scientific literature. Evidently, the host institution (King’s College London), the journal publishers and editors are all content to allow these grossly misleading publications to remain uncorrected and unretracted in the scientific literature as citable contributions to science and medicine.  
ME/CFS     Narrative reviewWessely, David, Butler, & Chalder (1989)None reported.“You have had an acute illness, probably infectious in origin, which forced you to become inactive for a period of time. Subsequently you have begun to experience fatigue on exertion and as a result you have started to limit or avoid activity of all sorts…This means that you develop symptoms at increasingly lower levels of exercise…When you experience these symptoms, you have also experienced associated thoughts, such as ‘If I carry on I may become worse’, or ‘There must be something seriously wrong with me to make me feel like this’. These symptoms are real, but… you may have incorrectly attributed them to a recurrence of the original infection. This is particularly likely because the symptoms of muscle pain, breathlessness, dizziness, fatigue and others are similar to those experienced initially. This has led to a vicious circle of increasing avoidance, inactivity and fatigue.”  
Coronary heart disease and mortality   Narrative review interpreting ‘unsafe’ dataEysenck, H.J. (1991).   See note above.None reported but the tobacco industry contributed large sums towards the project.“autonomy (i.e., the ability to be independent in one’s thoughts, feelings, and actions, even under stress) is important for survival and is a valuable countermeasure as far as cancer and CHD are concerned.”  
ME/CFS   Psychometric studyMoss-Morris, Petrie & Weinman (1996)Auckland Institute of Technology Interim Research Committee.  “organic CFS  patients  have  distorted  perceptions  of  effort  and sensation which  may  contribute to their  functional  disability”.
Post-traumatic stress disorder   RCT  Marks, I., Lovell, K., Noshirvani, H., Livanou, M., & Thrasher, S. (1998)Wellcome Trust, London, England.  “Patients were taught to spot dysfunctional thoughts and thinking errors, elicit rational alternative thoughts, and reappraise beliefs about themselves, the trauma, and the world.”
Rehabilitation to work   Narrative reviewWaddell & Burton (2004)Department for Work and Pensions, UK  “…symptoms are by definition subjective and therefore at least partly a matter of perceptions.” “Changing dysfunctional perceptions, attitudes and behaviour is central to rehabilitation of many common health problems.”  
ME/CFS   Narrative reviewBrowne &  Chalder (2009) “Two models of understanding CFS, a cognitive behavioural model and a deconditioning model, are then introduced alongside the treatments on which they are based. Both cognitive behavioural therapy and graded exercise therapy have been recommended by the National Institute for Health and Clinical Excellence as they are the treatments for which there is most evidence.” See Figure 3. Note: NICE changed its guidance in 2020 suggesting that GET should be avoided and CBT is less effective than previously assumed.
ME/CFS   Narrative reviewKnoop H, Prins JB, Moss-Morris R, Bleijenberg G (2010).Dutch MS Research Foundation (Stichting MS Research).“Three different cognitive processes may play a role in the perpetuation of CFS symptoms. The first is a general cognitive representation in which fatigue is perceived as something negative and aversive and CFS is seen as an illness that is difficult to influence. The second process involved is the focusing on fatigue. The third element is formed by specific dysfunctional beliefs about activity and fatigue.”
ME/CFS PACE trial   RCT with multiple methodologic-al flawsWhite et al. (2011)  UK Medical Research Council (MRC G0200434 ), the Department of Health for England, the UK Department for Work and Pensions, and the Chief Scientist Office of the Scottish Government Health Directorates.“CBT  and  GET  can  safely  be  added  to  SMC  to  moderately  improve  outcomes  for  chronic  fatigue  syndrome, but APT is not an effective addition.”
Medically unexplained symptoms    Narrative reviewDeary, V., Chalder, T., & Sharpe, M. (2007)None reported“Hotopf (2004) has compared the role of doctors in MUS to that of parents of sick children. Both can reinforce unhelpful illness behaviour and symptom interpretations.” “The links so far found between central nervous system processes, such as the HPA axis, and immunological processes are intriguing but far from conclusive; the causal relationships are unclear”. “High neuroticism may offer an underlying common mechanism for distress sensitivity and intolerance which lowers the threshold for symptom detection (both mental and physical), and leads to increased propensity to conditioned responses, more attention to threat stimuli and more avoidant coping. The neuroticism concept captures many of the factors hypothesised to be at work in MUS.”  
Multiple sclerosis   Cross-sectional studyDennison, L., Moss-Morris, R., Silber, E., Galea, I., & Chalder, T. (2010)UK MS Society. NIHR Biomedical Research Centre, South London and Maudsley NHS Foundation Trust / Institute of Psychiatry King’s College London.“Illness severity factors explained only 2.2% of the variance in distress (p>.05) while cognitive and behavioural variables accounted for 37.1% (p<.001). Unhelpful beliefs about the self were the strongest predictor.”      
Mortality and diabetic foot ulcers   Prospective observational studyVedhara K, et al. (2016).Medical Research Council, UK (MC_U145079313). JNVM receives salary support from the RAND Corporation.“illness beliefs have a significant independent effect on survival in patients with diabetes and foot ulceration.”  
Irritable bowel syndrome    Systematic reviewWindgassen et al. (2017)National Institute of Health Research, HTA 11/69/02. TC  partly funded by the Biomedical Research Centre for the South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry.TC received travel expenses and fees for workshops on irritable bowel syndrome.“change in illness‐specific cognitions is a key process by which psychological treatments may have an effect on the outcomes of symptom severity and QoL.”   The only significant effect related to so-called identity beliefs (‘How much do you experience symptoms?’), not beliefs that are specifically ‘unhelpful’.    
Mortality  and predialysis chronic kidney disease   Prospective observationalstudy  Muscat, P., Weinman, J., Farrugia, E. et al. (2020)None reported.  “CKD patients’ perceptions of treatment control, perceptions of a chronic timeline and perceived illness identity predict survival independently of clinical prognostic factors, including kidney function and co-morbidity. Illness perceptions are important and potentially modifiable risk factors in CKD.” ­­­­­­________________________ The beliefs that were evaluated cannot be specifically classified as ‘unhelpful’.  
Paediatric chronic fatigue syndrome   Cross-sectional study  Loades, M., Crawley, E., Chalder, T., & Flannery, H. (2021)National Institute for Health Research; Department of Health via the NIHR Specialist Biomedical Research Centre for Mental Health award to the South London and Maudsley NHS Foundation Trust and the Institute of Psychiatry at King’s College London.“the Lightning Process, based on Neurolinguistic Programming (NLP), when offered in addition to treatment as usual (TAU), was more clinically and cost effective compared to TAU alone (Crawley et al., 2017).”

Interpretation of the findings

An overall appraisal of the findings suggests that no published study has yet provided any empirical evidence of a causal relationship between unhelpful beliefs and ME/CFS symptoms.

The majority of ME/CFS studies have used a correlational approach, which as noted, has no evidential value in relation to causation. Cross-sectional studies are irrelevant to a causal hypothesis. The difference between correlational and causal relationships is fundamental but often it alludes even seasoned investigators.

Some studies used the Revised Illness Perception Questionnaire (IPQ-R) (Moss-Morris, Weinman, Petrie, Horne, Cameron & Buick, 2002). Although the authors often talk about illness beliefs and illness perceptions, they do not measure ‘unhelpful beliefs’. Studies that do not measure unhelpful beliefs are not relevant to H1. The IPQ-R measures identity, timeline, cyclical timeline, treatment control, personal control, coherence, causes and emotion reaction. None of these factors can be construed as a measure of unhelpful beliefs. For example, illness identity is measured by symptoms in which patients have to report whether they experienced the symptoms and, if so, whether they attributed the symptom to their illness. The number of symptoms attributed to their illness is summed with higher scores indicating increased illness identity. However, the latter score could equally be a measure of illness severity.

Petrie and Weinman (2012) claim that: “Illness perceptions change rapidly in response to diagnostic results and have been associated with emotional distress, recovery, and disability, as well as with treatment-related behaviour such as adherence”. However illness perceptions are not unhelpful beliefs and the only studies reviewed by them that used a prospective design did not measure unhelpful beliefs.

The largest RCT known as the ‘PACE trial’ (White et al., 2011) was in part concerned with the efficacy of CBT to control unhelpful beliefs but owing to a catalogue of methodological errors, the trial has been discredited (Marks, 2017; Wilshire, Kindlon, Matthees & McGrath, 2017; Wiltshire et al., 2018).  Another RCT called the ‘FINE’ trial involving gradually increasing activity designed collaboratively by the patient and the therapist and supportive listening found no evidence of efficacy (Wearden et al., 2006).

Two MUS studies with patients with foot ulcers (Vedhara et al., 2016) and chronic kidney disease (Muscat, Weinman, Farrugia et al., 2020) used a prospective, observational design enabling conclusions about causation. However the beliefs that were measured were not unhelpful beliefs but beliefs related to ‘identity’ (‘How much do you experience symptoms?’) as noted above.  This question can be interpreted as a measure of symptom severity and thus the observed effect on increased risk of mortality may only be attributed to greater symptom severity not to beliefs at all.  

Eysenck and Grossarth-Maticek’s publications on unhelpful beliefs or similar constructs (e.g. helplessness and hopelessness) are retracted, listed with expressions of concern, or regarded by this author as unsafe (see Marks & Buchanan, 2018, for details).

Implications

In the opinion of this author, the hypothesis that unhelpful beliefs cause or exacerbate symptoms of ME/CFS and MUS receives no empirical support in the research literature.

If true, this conclusion has several implications:

  1. As previously suggested, there is a plausible scientific explanation of ME/CFS in terms of a breakdown of homeostasis. If the biological explanation is true then ME/CFS patients’ beliefs that their symptoms are physically real are accurate.

2. The claim by therapists that patients who say they experience physical symptoms are holding unhelpful beliefs is a falsehood.

3. One has a right to ask the question: to whom are the so-called ‘unhelpful beliefs’ unhelpful – patients or therapists?

4. Patients who have CBT and/or GET to change their ‘unhelpful beliefs’ are fighting a losing battle. It is a no win situation. Refuse the therapy and you are being unhelpful (proving the therapist right). Do the therapy and show no improvement and when you say you’re not feeling any better, you’re being unhelpful all over again. A Catch 22 situation.

CBT Therapists out there: If you consider that my interpretation of the evidence is incorrect, please send me full details of the contradicting studies, and I will reconsider my position.

7 thoughts on “ME/CFS and unhelpful beliefs

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