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Epistemic Injustice among People with ME/CFS

On the 17th of April, a study exploring the experiences of epistemic injustice in a healthcare setting among people with ME/CFS was published. 

Epistemic injustice is harm done to a person which is related to their own knowledge or personal experience. It is said to be a concept closely related to stigma – sadly,  something commonly experienced by those with ME/CFS.

There are two types of epistemic injustice:

  1. Testimonial injustice:  Where a person who is biased against people of a particular gender or ethnic group – or with a particular diagnosis such as ME/CFS, may unfairly assign lower credibility to the experiences – or testimonies, of the people from those groups.
  2. Hermeneutical injustice: Where there is not enough information for society as a whole to understand a particular experience – for example, poor understanding of ME/CFS, through a lack of large-scale, and high quality research. As a result people with the experience may be ignored, or treated unfairly.

What did the study do?

The researchers recruited 5 participants with self-reported moderate to very severe ME/CFS – all participants were recruited through an advert shared on the social media and website of a UK ME/CFS charity.

All participants took part in an interview – this was done either over the phone, online, or in person.  Audio recordings of the interviews were used to identify themes relating to the participants experiences. 

What did the study find?

Findings were complex but experiences of the participants included:

  • Negative stereotyping and prejudice as a result of their ME/CFS diagnosis.  
  • Healthcare professionals wrongly telling those with ME/CFS  that the disease is psychological in nature, and recommending psychological interventions.
  • Not feeling heard by healthcare professionals.
  • Experiences far removed from patient-centred care – where care decisions are based on the specific health needs, and desired health outcomes of an individual.
    • For example, one participant was discharged from an ME/CFS clinic when she told the staff that travelling to and from the appointments was impacting negatively on her health.
  • New symptoms experienced by one participant were assigned to their ME/CFS without further testing. This means that other – potentially treatable, illnesses may have been missed.
  • Being coerced into undertaking exercise with harmful consequences, and then being labelled as uncooperative when health did not improve.

Importantly, one positive experience stood out. This was where an ME/CFS specialist provided information to those with the disease on coping strategies but welcomed feedback – both positive and negative and, was “willing to learn” from those with the disease. The participant who experienced this stated that he felt “so much more confident” as a result.

Limitations of the study

  • The participants were not representative of all people with ME/CFS.
    • This study had a small sample size of only 5 who were all recruited through social media and website of one UK ME/CFS charity.
    • The sample lacked ethnic diversity – all participants were White.
  • Another potential limitation of the study, and one acknowledged by the authors, is that the lead researcher has ME/CFS. While this is a strength enabling them to facilitate greater sensitivity, and awareness of the disease, it may also mean that the researcher’s own experiences influence how they interpret the results.

What do the findings mean? 

The findings suggest that epistemic injustice experienced by those with ME/CFS in healthcare settings can lead to harm, and warrants further research. Importantly also highlighted in the paper is the need for more research which draws upon more diverse groups of participants using an approach which considers overlapping social identities, and related systems of oppression or discrimination (intersectionality).

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