Statement: Media Coverage of the Long COVID REGAIN Research Study

Clarifying Long COVID Subsets: The Importance of Differentiation in Media Coverage of the REGAIN Study

As the scientific community delves deeper into understanding Long COVID, it becomes increasingly crucial for the media to accurately differentiate between its subsets. In light of the recent REGAIN study findings, it is imperative that journalists exercise diligence in their reporting to ensure clarity and precision in communicating the nuances of this complex condition.

The REGAIN study, a significant research endeavour focusing on Long COVID, has garnered widespread attention for its insights into rehabilitation options for the condition. However, amidst the wealth of data and analysis, there exists a critical need to delineate between distinct subsets of Long COVID. Failure to do so risks oversimplification and misrepresentation of the study’s findings, potentially leading to misinformation and confusion among the public.

Long COVID is not a monolithic entity; rather, it encompasses a spectrum of symptoms and experiences that can vary widely among individuals. Subsets contain symptoms and characteristics such as post-exertional malaise (PEM), neurological impairment, respiratory complications, and others, that each present unique challenges and implications for patients’ lives. Understanding these nuances is essential for both accurate reporting and informed decision-making regarding treatment and support services.

It is scientifically known that half of Long COVID cases meet the diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome one year after acute viral onset and these patients are, according to the research paper, excluded from the study due to exercise being contraindicated.

‘Dr Emily Fraser, Consultant in Respiratory Medicine, Oxford University Hospitals NHS Foundation Trust, and clinical lead of the Post COVID clinic in Oxford, said: “One thing I would say (and have done previously), is that this study focuses on a post-hospitalised group who are demographically distinct from the community-managed post-Covid patients we see much more commonly.  I think we therefore need to be careful how we extrapolate the findings to community patients – William, mentioned in the case history, was in intensive care with COVID and so we would anticipate there to be prolonged after-effects of critical illness.’

Furthermore, the failure to differentiate between subsets can perpetuate stigma and undermine efforts to address the multifaceted needs of Long COVID (and concurrently M.E./C.F.S. patients). By accurately portraying the complexity of the condition, the media can contribute to greater awareness, empathy, and support for those affected by Long COVID.

In light of these considerations, we urge media outlets to prioritize accuracy and sensitivity in their coverage of the REGAIN study and Long COVID more broadly. By acknowledging and highlighting the diversity of experiences within the Long COVID community, journalists can play a pivotal role in fostering understanding and support for those navigating this challenging condition.

For media inquiries or further information, please contact:

Sally Callow, Managing Director, email – [email protected]

About Stripy Lightbulb CIC

Stripy Lightbulb CIC is dedicated to improving knowledge and reducing stigma related to M.E./C.F.S and post-covid M.E./C.F.S, with a mission to improve the lives of individuals affected by this condition through education, support, and empowerment.

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