Tag: illness beliefs

Patients with severe ME/CFS deserve better than unproven theories

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Patients with severe ME/CFS deserve better than unproven theories

Dear Editor

Miller et al argue that chronic fatigue conditions are “a dysfunctional biological response orchestrated in the brain, influenced by expectations and conditioned responses,” and as a result, even people with severe ME/CFS can recover by “reframing beliefs about illness, along with specialist rehabilitation.”

Interventions based on this model have been tested in randomised trials in people since the 1990s in people with mild to moderate symptoms. Many of the participants would not have had ME/CFS as currently diagnosed, which carries a higher risk of harm from exertion. [1-3] Even in that easier context, short-term effects have been negligible or modest, without longterm benefits. Harms were not thoroughly studied. [1-3] This does not amount to strong evidence of substantial symptomatic improvement, let alone disease modification or full recovery.

Miller et al offer no direct strong evidence to support their claim that with their approach, “even those with severe ME/CFS can recover.” They cite the experience of a unit in Leeds, based on charts of discharged patients from a quality assurance report, where no patients were rated as “not at all ill” on discharge. [4] This kind of data is not defined as research, intended to be generalisable to other patients. [5] It was a very small group, too: Only six of the patients in that report had the diagnosis ME/CFS.

The weight of the authors’ argument, then, relies on their pathophysiologic rationale, which does not account for the full range of physical impacts of the illness. They point to other literature positing similar hypotheses, but these theories remain unproven. The pathophysiology of ME/CFS remains uncertain, [1-3] and it is not even clear that there is just one type of ME/CFS with the same underlying mechanisms. [6] Heterogeneous results in studies that have attempted to establish a core part of the model – that activity level and biological impairment are related – may be related to varying diagnostic criteria. [7]

Medicine has a long history of ascribing beliefs and/or responses to stress as the cause of diseases that were not yet fully understood. It wasn’t all that long ago that asthma, rheumatoid arthritis, and peptic ulcers fell into this category. [8] It’s been proven wrong so often now, we should be highly skeptical of these theories.

Perhaps part of why psychologically-based rationales for disease can be widely accepted is because the harm this can do is underappreciated. Miller et al argued that their narrative inspires hope, and people with severe ME/CFS deserve that. But when the unproven theory can’t deliver on the claims, what then? In a study Miller et al cited, researchers found that being told the disease was psychosomatic was the most common reason for suicidal thoughts for people with ME/CFS. [9] It’s not the first study to suggest that being told they are effectively to blame for not recovering is a contributing factor to the increased risk of suicidality in people with ME/CFS. [10]

A critical part of hope for people suffering illness is being able to trust that the medical community will work objectively to find better treatments and ways to support them, rather than promote unproven theories. People with ME/CFS deserve better than being told that their minds can overcome what’s the matter with their bodies – if only they try hard enough, for long enough.

References

1. National Institute for Health and Care Excellence. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. 29 Oct 2021. https://www.nice.org.uk/guidance/ng206

2. Chou R, McDonagh M, Griffin JC, Grusing S. Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): An Updated Systematic Evidence Review prepared for Centers for Disease Control and Prevention. 2022. https://stacks.cdc.gov/view/cdc/156092

3. Institute for Quality and Efficiency in Health Care (IQWiG). Current scientific knowledge on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). 2023. https://www.iqwig.de/en/projects/n21-01.html

4. Leeds and York Partnership NHS Foundation Trust. National Inpatient Centre for Psychological Medicine: annual review 2020-21. May 2021. https://www.leedsandyorkpft.nhs.uk/our-services/wp-content/uploads/sites…

5. Health Research Authority. Defining research. October 2022. https://www.hra-decisiontools.org.uk/research/docs/DefiningResearchTable…

6. Bastos VC, Greene KA, Tabachnikova A, et al. Cerebrospinal fluid immune phenotyping reveals distinct immunotypes of myalgic encephalomyelitis/chronic fatigue syndrome. J Immunol 2025;vkaf087. doi:10.1093/jimmun/vkaf087 pmid:40373264

7. Sunnquist M, Jason LA. A reexamination of the cognitive behavioral model of chronic fatigue syndrome. J Clin Psychol 2018;74:7. doi:10.1002/jclp.22593 pmid:29457646

8. Hange D, Bengtsson C, Sundh V, Bjorkelund. The natural history of psychosomatic symptoms and their association with psychological symptoms: Observations from the Population Study of Women in Gothenburg. Eur J Gen Pract 2007;13:2. doi:10.1080/13814780701377497 pmid:17534741

9. König RS, Paris DH, Sollberger M, Tschopp R. Identifying the mental health burden in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patients in Switzerland: A pilot study. Heliyon 2024;10:e27031. doi:10.1016/j.heliyon.2024.e27031 pmid:3843435

10. Chu L, Elliott M, Stein E, Jason LA. Identifying and managing suicidality in Myalgic Encephalitis/Chronic Fatigue Syndrome. Healthcare (Basel) 2021;9:6. doi:10.3390/healthcare9060629 pmid:34070367

Source: Hilda Bastian. BMJ 2025;389:r977 https://www.bmj.com/content/389/bmj.r977/rr-30

Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al

Abstract:

The narrative which is presented by Miller et al. as new, has dominated the field of ME/CFS for the last 35 years. It has been tested by numerous studies and has been found to be ineffective and harmful, as concluded by for example NICE in 2021. Additionally, it does not lead to objective improvement and it has a negative instead of a positive effect on work and disability status.

What has happened over the last 35 years is that severely ill patients have been ridiculed, gaslit and ignored by the medical profession. These patients have lost hope in the part of the medical profession which has been instrumental in doing and promoting that. They have not lost hope to recover and they are all hoping to get effective pharmacological treatments sooner rather than later as changing their mindset does not lead to recovery. And if it does, then the diagnosis of ME/CFS was simply wrong.

Source: Vink, Mark and Vink-Niese, Friso, Reframing beliefs about their illness does not lead to recovery of tube-fed patients with very severe ME/CFS. Analysis of the BMJ article by Miller et al. (June 06, 2025). No., Available at SSRN: https://ssrn.com/abstract=5284667 https://papers.ssrn.com/sol3/papers.cfm?abstract_id=5284667 (Full text available as PDF file)

Illness Beliefs in Chronic Fatigue Syndrome: A Study Involving Affected Adolescents and their Parents

Abstract:

Background: The aim of the study was too investigate the beliefs of young people with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) and their parents, about illness causes and management.

Method: Twenty-one young people with CFS/ME and their parents participated in an open-ended interview.

Results: Infective causes were identified by the majority of respondents, and psychological ones by a minority. Many highlighted reducing activity and resting in symptom management. Positive and negative experiences of psychiatric and psychological treatments were recorded.

Conclusion: Professionals should carefully explore the illness related beliefs of young people with CFS/ME and parental beliefs in order to agree treatment plans.

Source: Richards J, Chaplin R, Starkey C, Turk J. Illness Beliefs in Chronic Fatigue Syndrome: A Study Involving Affected Adolescents and their Parents. Child Adolesc Ment Health. 2006;11(4):198-203. doi:10.1111/j.1475-3588.2006.00409.x https://pubmed.ncbi.nlm.nih.gov/32810979/

Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox

Abstract:

Contemporary medicine distinguishes between illness and disease. Illness refers to a person’s subjective experience of symptoms; disease refers to objective bodily pathology. For many illnesses, medicine has made great progress in finding and treating associated disease. However, not all illnesses are successfully relieved by treating the disease. In some such cases, the patient’s suffering can only be reduced by treatment that is focused on the illness itself. Chronic disabling fatigue is a common symptom of illness, for which disease-focused treatment is often not effective, but for which illness-focused treatments (psychological or behavioural) often are.

In this article, we explore a controversy surrounding illness-focused treatments for fatigue. We do this by contrasting their acceptance by people whose fatigue is associated with a disease (using the example of cancer-related fatigue) with their controversial rejection by some people whose fatigue is not associated with an established disease (chronic fatigue syndrome or CFS, sometimes called ME (myalgic encephalomyelitis)). In order to understand this difference in acceptability we consider the differing moral connotations of illness and disease and then go on to examine the limitations of the concepts of illness and disease themselves.

We conclude that a general acceptance of illness-focused treatments by all who might benefit from them will require a major long-term change in thinking about illness, but that improvements to the care of individual patients can be made today.

© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY. Published by BMJ.

Source: Sharpe M, Greco M. Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox. Med Humanit. 2019 Jun 18. pii: medhum-2018-011598. doi: 10.1136/medhum-2018-011598. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/31213482

A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS

Abstract:

Few studies have compared symptomatology and functional differences experienced by patients with chronic fatigue syndrome (CFS) across cultures. The current study compared patients with CFS from the United States (US) to those from the United Kingdom (UK) across areas of functioning, symptomatology, and illness onset characteristics.

Individuals in each sample met criteria for CFS as defined by Fukuda et al. (1994). These samples were compared on two measures of disability and impairment, the DePaul Symptom Questionnarie (DSQ) and the Medical outcomes study 36-item short-form health survey (SF-36).

Results revealed that the UK sample was significantly more impaired in terms of mental health and role emotional functioning, as well as specific symptoms of pain, neurocognitive difficulties, and immune manifestations. In addition, the UK sample was more likely to be working rather than on disability.

Individuals in the US sample reported more difficulties falling asleep, more frequently reported experiencing a sudden illness onset (within 24 hours), and more often reported that the cause of illness was primarily due to physical causes. These findings suggest that there may be important differences in illness characteristics across individuals with CFS in the US and the UK, and this has implications for the comparability of research findings across these two countries.

 

Source: Zdunek M, Jason LA, Evans M, Jantke R, Newton JL. A Cross Cultural Comparison of Disability and Symptomatology Associated with CFS. Int J Psychol Behav Sci. 2015;5(2):98-107. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4605442/ (Full article)

 

Views on the nature of chronic fatigue syndrome: content analysis

Abstract:

OBJECTIVES: Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), has provoked much controversy and led to arguments between the medical profession and patient organizations. A particular focus for debate is the categorization of the condition as physical or psychological in its nature. The aim of this study was to compare how the written media, patient organizations and medical authorities regard the illness.

DESIGN: Content analysis of newspaper articles, ME patient organization websites, and medical websites and textbooks were assessed by two independent assessors.

SETTING:Three national UK newspapers, UK ME websites, and UK medical websites and textbooks, were accessed during 2010.

PARTICIPANTS: 146 source files were scored from 36 patients’ organizations, 72 media articles and 38 medical authorities.

MAIN OUTCOME MEASURED: The overall opinion of an article or website was rated using a five point Likert scale, from ‘extremely psychological’ (scored as 1), ‘moderately psychological’ (2), ‘both psychological and physical’ (3), ‘moderately physical’ (4) or ‘extremely physical’ (5).

RESULTS: Eighty-nine percent (32 of 36) of ME patient organizations considered the illness to be physical, compared with 58% (42/72) of newspaper articles, and 24% (9/38) of medical authorities. Sixty-three percent (24/38) of medical authorities regarded the illness as both physical and psychological. The inter-group differences of the Likert scores were statistically significant (χ(2) = 27.37, 2 df, P < 0.001).

CONCLUSION: The considerable disagreement, particularly between ME patient organizations and medical authorities, may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.

 

Source: Hossenbaccus Z, White PD. Views on the nature of chronic fatigue syndrome: content analysis. JRSM Short Rep. 2013 Jan;4(1):4. doi: 10.1258/shorts.2012.012051. Epub 2013 Jan 14. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3572659/ (Full articles)

 

Long-term sickness absence among patients with chronic fatigue syndrome

Abstract:

Chronic fatigue syndrome is associated with high levels of occupational disability. Consecutive out-patients at a chronic fatigue syndrome treatment service were studied for associations between occupational status, symptom severity and cognitive and behavioural responses to symptoms. All patients had high symptom levels; however, those on long-term sickness absence had significantly more physical fatigue (β = 0.098, P<0.05) and worse sleep (β = 0.075, P<0.05). Patients with long-term sickness absence also demonstrated more embarrassment avoidance cognitions (β = 0.086, P<0.05) and avoidance resting behavioural responses (β = 0.078, P<0.05). Identifying and addressing avoidance behaviours and cognitions regarding embarrassment in interventions may enhance the chances of individuals returning to work.

 

Source: Knudsen AK, Henderson M, Harvey SB, Chalder T. Long-term sickness absence among patients with chronic fatigue syndrome. Br J Psychiatry. 2011 Nov;199(5):430-1. doi: 10.1192/bjp.bp.110.082974. Epub 2011 Sep 8. http://bjp.rcpsych.org/content/199/5/430.long (Full article)

 

Chronic fatigue syndrome: a qualitative investigation of young patient’s beliefs and coping strategies

Abstract:

PURPOSE: The aim of this pilot study was to explore illness beliefs and coping strategies among adolescent patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), applying a qualitative methodology. Recent studies have explored the illness beliefs and coping strategies of adult patients with CFS/ME as possible contributing factors to the disease aetiology. These studies have mainly used quantitative methods, finding that patients often explain their illness as being due to physical causes, deny psychological causes and make use of passive and avoidant coping strategies.

METHOD:Semi-structured, in-depth interviews were conducted with nine adolescent patients with CFS/ME, thematic analysis was adapted to the material and the results were interpreted in light of theories of attribution and coping.

RESULTS: The qualitative method allowed for more complex and nuanced accounts of illness experience. The findings showed that the adolescents differ from what has previously been reported, applying more varied and flexible illness attributions and coping mechanisms than expected.

CONCLUSIONS: The heterogeneity suggested in the results has implications. We suggest three perspectives should be taken into account, both for further research and in clinical practice: (1) individual differences; (2) a developmental perspective and (3) interactive relational focus.

 

Source: Hareide L, Finset A, Wyller VB. Chronic fatigue syndrome: a qualitative investigation of young patient’s beliefs and coping strategies. Disabil Rehabil. 2011;33(23-24):2255-63. doi: 10.3109/09638288.2011.568663. Epub 2011 Apr 7. https://www.ncbi.nlm.nih.gov/pubmed/21473686

 

Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study.

Abstract:

AIM: To establish what factors are important for patients to engage in a new intervention for chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and make recommendations to general practitioners (GPs) on preparing a patient for referral to such a service.

BACKGROUND: NICE guidelines recommend a prominent role for primary care in the management of patients with CFS/ME, with prompt diagnosis and appropriate referral for evidence-based treatments.

METHODS: A qualitative study nested within a multi-centre randomised controlled trial of two new nurse therapist delivered interventions. Semi-structured interviews carried out with 19 patients who had received pragmatic rehabilitation (PR) in the trial. Interviews were transcribed verbatim and an iterative approach used to develop themes from the data set.

FINDINGS:Factors that influence whether or not a patient engages with PR for CFS/ME are ensuring that the patient feels accepted and believed, that they accept the diagnosis, and that the model implicated by the treatment offered to the patient matches the model of illness held by the patient. If patients hold a clearly incompatible model of their illness, it is unlikely that they will engage with, and successfully complete, therapy. It is vital that the GP elicits and explores such illness beliefs either before making a referral to maximise patient engagement in therapy, or that an initial session with the therapist explores attitudes to the treatment model offered and then works with the patient’s model.

 

Source: Chew-Graham C, Brooks J, Wearden A, Dowrick C, Peters S. Factors influencing engagement of patients in a novel intervention for CFS/ME: a qualitative study. Prim Health Care Res Dev. 2011 Apr;12(2):112-22. doi: 10.1017/S146342361000037X. https://www.ncbi.nlm.nih.gov/pubmed/21457596

 

Pain physiology education improves pain beliefs in patients with chronic fatigue syndrome compared with pacing and self-management education: a double-blind randomized controlled trial

Abstract:

OBJECTIVE: To examine whether pain physiology education was capable of changing pain cognitions and pain thresholds in patients with chronic fatigue syndrome (CFS) and chronic widespread pain.

DESIGN: Double-blind randomized controlled trial.

SETTING: Specialized chronic fatigue clinic in university hospital.

PARTICIPANTS: A random sample of patients (N=48) with CFS patients (8 men, 40 women) experiencing chronic pain, randomly allocated to the control group (n=24) or experimental group (n=24). Two women in the experimental group did not complete the study because of practical issues (lack of time and restricted mobility).

INTERVENTIONS: One individual pain physiology education session (experimental) or 1 pacing and self-management education session (control).

MAIN OUTCOME MEASURES: Algometry, the Neurophysiology of Pain Test, and questionnaires evaluating pain cognitions-the Pain Coping Inventory, the Pain Catastrophizing Scale, and the Tampa Scale for Kinesiophobia-version CFS-were completed immediately before and immediately after the intervention.

RESULTS: After the intervention, the experimental group demonstrated a significantly better understanding of the neurophysiology of pain (P<.001) and a reduction of the Pain Catastrophizing Scale subscale “ruminating” (P=.009) compared with controls. For these variables, moderate to large Cohen d effect sizes were revealed (.79-2.53).

CONCLUSIONS: A 30-minute educational session on pain physiology imparts a better understanding of pain and brings about less rumination in the short term. Pain physiology education can be an important therapeutic modality in the approach of patients with CFS and chronic pain, given the clinical relevance of inappropriate pain cognitions.

Comment in: Educational programs for chronic fatigue syndrome need to take cognizance of the condition’s abnormal response to exercise. [Arch Phys Med Rehabil. 2011]

 

Source: Meeus M, Nijs J, Van Oosterwijck J, Van Alsenoy V, Truijen S. Pain physiology education improves pain beliefs in patients with chronic fatigue syndrome compared with pacing and self-management education: a double-blind randomized controlled trial. Arch Phys Med Rehabil. 2010 Aug;91(8):1153-9. doi: 10.1016/j.apmr.2010.04.020. https://www.ncbi.nlm.nih.gov/pubmed/20684894