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• <figure><figcaption class="blocks-gallery-item__caption">Image: Jem Yoshioka [CC BY-SA]</figcaption></figure>

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Imagine being suddenly struck by constant, extreme fatigue that no amount of rest or sleep alleviates. Imagine going from an active, engaged, and healthy life, to having trouble with ordinary daily tasks, being bedridden, living in a feeling of brain fog and body pain, where going out or interacting socially can leave you drained for days. Imagine being dismissed by doctors, frantically seeking medical care and going through test after test with inconclusive results, where nobody seems able to explain what is happening to you and nothing seems to help. This is the lived reality of many people who have been eventually diagnosed with ME/CFS.

In a recent paper “The biopolitics of CFS/ME” published in Studies C Dr Nikos Karfakis of the University of the West of England argues that the diagnosis of CFS/ME is not only a scientific issue nor only contested within the confines of the clinic, but a much broader, biopolitical problem. ME/CFS is still an often misunderstood and stigmatised condition. To gain greater insight into this illness and historical and current issues around its research, diagnosis, and treatment, I spoke to patient and ME/CFS Australia (SA) committee member Penelope McMillan and clinical immunologist Dr Rob Loblay for a BioViews double episode focusing on ME/CFS. 

As mentioned in the discussion, the critically acclaimed 2017 documentary film Unrest, which tells the patient story of Jennifer Brea’s journey with ME/CFS can be found here.

For more information on the controversial PACE study, have a read of this account and a longer discussion of the issues with the trial here.

You can also read more about ME/CFS here. 

Thank you for tuning in to BioViews. You can subscribe to the Bioviews podcast by email, or follow us on Twitter @BioViewsHPS.

Bye for now!