medical ethics – American ME and CFS Society

Re-visiting professional ethics in psychotherapy: Reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis / chronic fatigue syndrome and ‘medically unexplained symptoms’

Abstract:

Following years of debate over the effectiveness of cognitive behavioural therapy for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS), public health bodies in the UK and beyond have determined that no psychotherapy is clinically proven for this patient group.

In the field of ME/CFS and the wider arena of ‘medically unexplained symptoms’ (MUS), patient survey data and qualitative research capturing patient experiences and psychotherapist attitudes suggest that therapeutic practice may sometimes fall short of required ethical standards. This raises questions about how psychotherapists can safely support, as opposed to treat, people with these debilitating conditions.

We consider four ethical principles that feature throughout psychotherapists’ codes of practice, those of respect, competence, responsibility, and integrity, and discuss examples of good and poor practice in this arena as evinced by recent empirical literature.

Following this, we offer a variety of suggestions to help strengthen ethical psychotherapy practice among patients with ME/CFS and other MUS. In terms of practitioner education, we recommend greater emphasis on humility and reflexive practice, exploration of personal as well professional ethics, and integration of patient expertise-by-experience, accompanied with latest evidence, into foundational and on-going training.

In terms of practice, we suggest consideration of formalized patient-focused feedback systems and greater transparency visà-vis patient access to clinical notes. Finally, we underline the importance of elevating patients from mere subjects to co-producers of psychotherapy research.

Source: Joanne Hunt, Charlotte Blease. Re-visiting professional ethics in psychotherapy: Reflections on the use of talking therapies as a supportive adjunct for myalgic encephalomyelitis / chronic fatigue syndrome and ‘medically unexplained symptoms.’ OSF preprints. https://osf.io/2m9eb/ (Full text)

Questioning Biomedicine’s Privileging of Disease and Measurability

Abstract:

Within biomedicine, the diagnosis of disease is often privileged over a patient’s experience of illness. Yet up to 30% of primary care visits might be attributable to persistent illness without a diagnosed disease, including functional somatic syndromes like fibromyalgia and chronic fatigue syndrome. When clinicians are unable to diagnose disease or correlate symptoms with measurable changes in biomarkers, patients experiencing such an illness are at increased risk for suspicion, misplaced questioning, or having their motives misinterpreted through damaging social and cultural narratives about gender, race, ethnicity, socioeconomic status, or disability. Adhering strictly to a biomedical model of thinking about disease and diagnosis can prevent clinicians from empathically engaging with patients and helping them navigate their illness experiences.

Source: Kroll C. Questioning Biomedicine’s Privileging of Disease and Measurability. AMA J Ethics. 2021 Jul 1;23(7):E537-541. doi: 10.1001/amajethics.2021.537. PMID: 34351263. https://pubmed.ncbi.nlm.nih.gov/34351263/

A Womanist Approach to Caring for Patients With Empirically Unverifiable Symptoms

Abstract:

Some illnesses and diseases are not apparent to onlookers. Conditions like chronic fatigue syndrome, fibromyalgia, multiple sclerosis, postconcussive syndrome, endometriosis, and many psychiatric illnesses, for example, have symptoms that are not easily or at all measurable. Both clinicians and health care systems, however, tend to focus exclusively on measurability, which can result in evidentiary overreliance and undervaluation of experience narratives and can have clinically, ethically, and socially important consequences for patients with these conditions.

Source: Gatison AM. A Womanist Approach to Caring for Patients With Empirically Unverifiable Symptoms. AMA J Ethics. 2021 Jul 1;23(7):E519-523. doi: 10.1001/amajethics.2021.519. PMID: 34351260. https://pubmed.ncbi.nlm.nih.gov/34351260/

Ethical classification of ME/CFS in the United Kingdom

Abstract:

Few conditions have sparked as much controversy as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Professional consensus has long suggested that the condition should be classified as psychiatric, while patients and advocacy groups have insisted it is a serious biological disease that requires medical care and research to develop it. This longstanding debate shifted in 2015, when U.S. governmental health authorities fully embraced medical classification and management. Given that some globally respected health authorities now insist that ME/CFS is a serious biological disease, this paper asks whether it can be ethical for the U.K. practice guideline now in development to characterize the condition as a mental health disorder.

Following a brief history of ME/CFS controversy, I offer three arguments to show that it would be unethical for the U.K. to now characterize ME/CFS as a mental health condition, considering the relevance of that conclusion for ME/CFS guidelines elsewhere and for other contested conditions.

Source: O’Leary D. Ethical classification of ME/CFS in the United Kingdom. Bioethics. 2019 Feb 8. doi: 10.1111/bioe.12559. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/30734339

To Serve or Not to Serve: Ethical and Policy Implications

Abstract:

The Institute of Medicine (IOM) is one of the nation’s more influential health-related non-profit organizations. It plays a large role in shaping health policy by commissioning panels to develop “white papers” describing research and recommendations on a variety of health topics. These white paper publications are often used to help make policy decisions at the legislative and executive levels. Such a prominent institution might seem like a natural ally for policy-related collaborative efforts. As community psychologists, we strongly endorse efforts to positively influence public policy at the national level. However, while serving on influential panels and commissions like the IOM might seem to be very much part of the ethos of our discipline, there are occasions when such institutions are pursuing a mission that inadvertently has the potential to instigate divisive friction among community activists and organizations.

A case study is presented whereby I describe my decision not to accept an invitation to serve on a controversial IOM panel. I explore the ethical challenges regarding maintaining my independence from this institution and its attempt to redefine chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME), as well as the process of searching for alternative avenues for collaborating with community activists to influence policy related to these debilitating illnesses.

Source: Jason LA. To Serve or Not to Serve: Ethical and Policy Implications. Am J Community Psychol. 2017 Sep 18. doi: 10.1002/ajcp.12181. [Epub ahead of print] https://www.ncbi.nlm.nih.gov/pubmed/28921637

Serotonergic descending inhibition in chronic pain: design, preliminary results and early cessation of a randomized controlled trial

Abstract:

AIM: We examined whether activation of serotonergic descending pathways improves pain inhibition during exercise in patients with chronic fatigue syndrome (CFS) and comorbid fibromyalgia (FM) in comparison with rheumatoid arthritis (RA) and sedentary, healthy controls in a double-blind randomized controlled trial with cross-over design.

PATIENTS AND METHODS: Three female CFS/FM patients, one female RA patient and two healthy women were randomly allocated to the experimental group (2 ml of citalopram intravenously) or the placebo group (2 ml of 0.9% NaCl intravenously). Participants performed a submaximal exercise protocol, preceded and followed by an assessment of endogenous pain inhibition. Seven days later, groups were crossed over.

RESULTS: Significant side-effects were observed in all, but one participant immediately after intravenous administration of citalopram. One CFS/FM patient withdrew because of severe post-exertional malaise.

CONCLUSION: It was decided that proceeding with the study would be unethical. No conclusion could be made regarding pain inhibition during exercise in CFS/FM compared to RA and controls.

Source: Meeus M, Ickmans K, De Clerck LS, Moorkens G, Hans G, Grosemans S, Nijs J. Serotonergic descending inhibition in chronic pain: design, preliminary results and early cessation of a randomized controlled trial. In Vivo. 2011 Nov-Dec;25(6):1019-25. https://www.ncbi.nlm.nih.gov/pubmed/22021700

Chronic fatigue syndrome: la bête noire of the Belgian health care system

Abstract:

The World Health Organization acknowledges Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) to be a medical illness. ME/CFS is characterized by disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways. In 2002, the Belgian government started with the development of CFS “Reference Centers”, which implement a “psychosocial” model. The medical practices of these CFS Centers are defined by the Superior Health Council, e.g. treatment should be based upon Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET); and biological assessments and treatments of ME/CFS should not be employed.

Recently, the Belgian government has evaluated the outcome of the treatments at the CFS Centers. They concluded that a “rehabilitation therapy” with CBT/GET yielded no significant efficacy in the treatment of ME/CFS and that CBT/GET cannot be considered to be curative therapies.

In case reports, we have shown that patients who were “treated” at those CFS centers with CBT/GET in fact suffered from IO&NS disorders, including intracellular inflammation, an increased translocation of gram-negative enterobacteria (leaky gut), autoimmune reactions and damage by O&NS.

Considering the fact that these findings are exemplary for ME/CFS patients and that GET may even be harmful, it means that many patients are maltreated by the Belgian CFS Centers. Notwithstanding the above, the government and the CFS Centers not only continue this unethical and immoral policy, but also reinforce their use of CBT/GET in patients with ME/CFS treated at those Centers.

Source: Maes M, Twisk FN. Chronic fatigue syndrome: la bête noire of the Belgian health care system. Neuro Endocrinol Lett. 2009;30(3):300-11. https://www.ncbi.nlm.nih.gov/pubmed/19855351

The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness

Abstract:

This paper examines the discourse of morality surrounding ‘ME’ as a contested illness, looking at how GPs and ME group members differentiate between the category of ‘genuine ME sufferer’ and the ‘bandwagon’. ‘Jumping on the bandwagon’ is a metaphor commonly used to describe the activity of ‘following the crowd’ in order to gain an advantage. This discursive analysis shows how ‘bandwagon’ categories are constructed in contrast to the category of genuine sufferer.

People who jump on the bandwagon are accused of matching their symptoms to media stereotypes, adopting trendy illnesses (‘fads’), or using ‘tickets’ to avoid facing up to psychological illnesses. Both GPs and ME group members construct a differential moral ordering of physical and psychological illness categories, where the latter assumes a lesser status. The paper concludes that against a background of medical uncertainty and controversy, the ‘bandwagon’ and other derogatory labels function as contrast categories that work to establish the existence of ‘ME’ as a genuine illness.

Source: Horton-Salway M. The ME Bandwagon and other labels: constructing the genuine case in talk about a controversial illness. Br J Soc Psychol. 2007 Dec;46(Pt 4):895-914. https://www.ncbi.nlm.nih.gov/pubmed/17535450

What causes chronic fatigue?

Comment on:

Chronic fatigue syndrome comes out of the closet. [CMAJ. 1998]

Chronic fatigue syndrome or just plain tired? [CMAJ. 1998]

Chronic fatigue syndrome get court’s nod of approval as legitimate disorder. [CMAJ. 1998]

The 3 excellent articles on chronic fatigue syndrome 1–3 reminded me of the desperate need for a discussion of the ethics — or lack thereof — related to independent medical examinations of patients with this condition.

A recent 21-page report from an independent medical examination of one of my patients with chronic fatigue syndrome included 2 pages of error-riddled history and the results of only a cursory physical exam, along with a bold admission that a full physical examination had not been done. The other 19 pages, clearly based on a word-processor template, were peppered with such clichés as “illness-seeking behaviour,” “somatization syndromes” and “preconscious motives.” The fee assessed for this report was $1200.

I used to be asked by insurance companies to perform independent medical examinations (for the standard fee suggested by the Alberta Medical Association), requests that I always accepted. However, when it became known that, in appropriate circumstances, I might support a diagnosis of chronic fatigue syndrome, such requests ceased abruptly.

You can read the rest of this comment here: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1230108/pdf/cmaj_160_5_638.pdf

Source: Voth A. What causes chronic fatigue? CMAJ. 1999 Mar 9;160(5):638. http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1230108/pdf/cmaj_160_5_638.pdf (Full article)