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
Highly Influential Citations
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8 Citations

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

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