Are ME/CFS Patient Organizations “Militant”?

@article{Blease2018AreMP,
  title={Are ME/CFS Patient Organizations “Militant”?},
  author={Charlotte R Blease and Keith J Geraghty},
  journal={Journal of Bioethical Inquiry},
  year={2018},
  volume={15},
  pages={393-401}
}
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a contested illness category. This paper investigates the common claim that patients with ME/CFS—and by extension, ME/CFS patient organizations (POs)—exhibit “militant” social and political tendencies. The paper opens with a history of the protracted scientific disagreement over ME/CFS. We observe that ME/CFS POs, medical doctors, and medical researchers exhibit clear differences in opinion over how to conceptualize this illness… 
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8 Citations
Background Citations
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8 Citations

The negative impact of the psychiatric model of chronic fatigue syndrome on doctors’ understanding and management of the illness

TLDR
The psychiatric BPS model of ME/CFS may negatively bias how physicians approach the illness, with doctors directed to view patients’ complaints as manifestations of psychological distress, rather than physical symptoms that require medical investigation or intervention.

Legitimizing myalgic encephalomyelitis/chronic fatigue syndrome: indications of change over a decade

  • F. Friedberg
  • Medicine, Psychology
    Fatigue: Biomedicine, Health & Behavior
  • 2020
TLDR
Positive developments in legitimization of myalgic encephalomyelitis/chronic fatigue syndrome are tempered by ongoing illness challenges including patient stigma, absence of diagnostic markers, lack of established treatments, and a dearth of researchers and knowledgeable, interested clinicians.

How and why patients made Long Covid

A role for a leaky gut and the intestinal microbiota in the pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)

TLDR
Investigations are warranted using whole genome sequencing and targeted metabolomics to address the emerging hypotheses in ME/CFS research, with an emphasis on the study of severe, house-bound ME patients.

Predicting GP visits: A multinomial logistic regression investigating GP visits amongst a cohort of UK patients living with Myalgic encephalomyelitis

TLDR
Relationships between ME patients and their GPs are argued to be key to the effective delivery of care to this patient cohort and identifying potential barriers to doctor patient interactions in the context of ME is crucial.

One For All, All For One? Collective Representation in Healthcare Policy

TLDR
Attention is drawn to important ethical, cultural, and social questions, and into the practices, justifications for, and implications of collective representation of patients in healthcare policy.

Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

TLDR
This work identifies four reasons for injustices in the treatment of ME/CFS patients, and discusses the risk of Long Covid following a similar trajectory, and concludes with policy and practice recommendations to help prevent such injustices arising again.

On the multiplicity of lay expertise AN EMPIRICAL AND ANALYTICAL OVERVIEW OF PATIENT ASSOCIATIONS’ ACHIEVEMENTS AND CHALLENGES

References

SHOWING 1-10 OF 48 REFERENCES

Epistemic injustice in healthcare encounters: evidence from chronic fatigue syndrome

TLDR
It is argued that the (often unintentional) marginalisation of many patients is a professional failure that may lead to further ethical and practical consequences both for progressive research into CFS/ME, and for ethical care and delivery of current treatments among individuals suffering from this debilitating illness.

Contesting the psychiatric framing of ME/CFS

TLDR
This paper examines why framing the condition as a psychiatric issue—what it is referred to as ‘psychiatrisation’—has been so heavily contested by patients and activists and argues that this contestation is not simply about stigmatising mental health conditions, as some have suggested, but relates to how people diagnosed with mental illness are treated in society, psychiatry and the law.

Ending the stalemate over CFS/ME

  • F. Godlee
  • Medicine, Psychology
    BMJ : British Medical Journal
  • 2011
“Why can’t chronic fatigue syndrome/myalgic encephalitis be like other common chronic conditions where patients, carers, doctors, and researchers work together to pose research questions, gain…

Views on the nature of chronic fatigue syndrome: content analysis

TLDR
The considerable disagreement in how the written media, patient organizations and medical authorities regard the illness may help to explain the gulf in understanding between doctors and patients and the consequent reluctance of some patients to engage in behavioural treatments.

Elements of rehabilitative strategies associated with negative outcomes in CFS/ME: the need for further investigations

  • Tom Kindlon
  • Medicine, Psychology
    Disability and rehabilitation
  • 2015
TLDR
The authors posit that the level of supervision may explain the results that are less than satisfactory in patient organisation surveys, and the validity of single-item satisfaction measures, such as used in the PACE Trial, is questionable.

Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study

TLDR
Until GPs feel comfortable making the diagnosis of CFS/ME and facilitating initial management, and have appropriate services to refer patients to, there will continue to be delays in confirming the diagnosis and patients presenting in primary care with fatigue may not receive appropriate care.

General practitioners' beliefs, attitudes and reported actions towards chronic fatigue syndrome.

TLDR
There is considerable diversity of opinion between practitioners about CFS, which extends from questioning whether the syndrome even exists to different strategies for diagnosis and management.

The doctor-patient relationship in chronic fatigue syndrome: survey of patient perspectives.

TLDR
The results show that CFS is not addressed well by the medical community, and the failure to diagnose leads to a lack of empathetic care, with consequential loss of the capacity of the doctor to act as a healer.

Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review for a National Institutes of Health Pathways to Prevention Workshop

TLDR
This systematic review evaluates and summarizes research on the benefits and harms of medical and nonmedical treatments for ME/CFS based on trials enrolling patients meeting criteria for ME, CFS, or both and identifies limitations of current studies and needs for future research in this area.

Distinct plasma immune signatures in ME/CFS are present early in the course of illness

TLDR
A stronger correlation of cytokine alterations with illness duration than with measures of illness severity, suggesting that the immunopathology of ME/CFS is not static and has critical implications for discovery of interventional strategies and early diagnosis.