Long Covid at the crossroads: Comparisons and lessons from the treatment of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), by Joanne Hunt, Charlotte Blease, Keith J Geraghty in Journal of Health Psychology, March 2022 [DOI:10.1177/13591053221084494]
Research abstract:
Whilst parallels have been drawn between Long Covid and myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), there is a well-documented history of negative stereotyping and marginalisation of patients with ME/CFS.
A socio-politically oriented comparison of scientific, clinical and societal responses to Long Covid and ME/CFS is thus important to prevent similar harms arising among Long Covid patients. We identify four reasons for injustices in the treatment of ME/CFS patients, and discuss the risk of Long Covid following a similar trajectory.
We conclude with policy and practice recommendations to help prevent such injustices arising again, including consideration of critical reflexivity in medical education.
Conclusion:
We have argued that, to date, people with Long Covid appear not to have experienced the same level of negative stereotyping, discrediting and exclusion from epistemic activities within medicine, compared with people living with ME/CFS. We have proposed that these differences can be traced to various factors, notably:
- prevalence of Long Covid and
- social power of the collective patient voice, with many Long Covid advocates being HCPs (health care professionals) who have fallen victim to lingering symptoms after contracting Covid,
- clearer proximate aetiology and
- high incentive to research pathogenic mechanisms, and
- a notable demonstration of scientific and clinical epistemic humility, combined with desire to learn, in the face of absence of diagnostic biomarkers.
On the other hand, there are indications that Long Covid may be susceptible to a parallel process of politicisation as has been the case in ME/CFS, particularly around the best way to manage and treat patients. Lessons must be learnt from ME/CFS to ensure that Long Covid does not follow the same path.
It is now essential that patient narratives are foregrounded in Long Covid, and that this foregrounding is extended to other illnesses that might be considered medically ‘contested’, including ME/CFS.
Long Covid offers a unique opportunity to work collectively, cohesively, and inclusively for the benefit of people with Long Covid, ME/CFS, and other illnesses with unexplained or medically contested symptoms. Long Covid can be a conduit to progress in these domains.
