ME/CFS San Diego is now a 501c3 public charity!
Many in the Long COVID and ME/CFS communities have raised serious concerns about WIRED’s article, “The Painful Truth About Long COVID,” and the way it presents brain retraining and related biopsychosocial approaches as new and unfairly ignored, despite years of research showing they do not treat Long COVID.
These approaches are not new or neglected. In ME/CFS, related biopsychosocial approaches have already been extensively studied and promoted. The theories used to support these approaches, including false illness beliefs, fear of activity, and deconditioning, have since been discredited in the context of ME/CFS and Long COVID. Research has not shown these approaches treat Long COVID.
The concern is that WIRED presents these ideas as overlooked solutions even though they have already been widely studied and do not treat Long COVID. ME/CFS research and lived experience show actual harms from these ideas, including inappropriate recommendations, delayed access to informed medical care, and the reinforcement of stigma and misconceptions. For Long COVID patients with post-exertional malaise (PEM), promoting activity-based approaches that are not appropriate for their condition can worsen disease severity, reduce functional capacity, and potentially decrease the chance of remission. WIRED’s promotion of these approaches as solutions for Long COVID risks harming patients while also leaving them without appropriate evidence-based care.
The consequences are not academic. Media narratives shape how these illnesses are understood by healthcare providers, insurers, disability systems, legislators, employers, families, caregivers, and newly diagnosed patients. Presenting approaches that do not treat Long COVID as solutions can divert patients away from evidence-based care and reinforce misconceptions about ME/CFS and Long COVID that affect how patients are treated, supported, believed, diagnosed, and accommodated.
WIRED began promoting “The Painful Truth About Long COVID” with the tagline “There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.” After patients, advocates, clinicians, and researchers raised concerns about the article, WIRED continued promoting this framing for more than a week without addressing the evidence that contradicts its framing, the harms patients have experienced, or the consequences of promoting narratives that can stigmatize and misrepresent these illnesses. Nothing prevented WIRED from publishing this article or continuing to promote it to millions of readers. Reputable journalism should accurately represent the evidence and weigh the harms of promoting claims that are not supported by that evidence.
Scott Hugo, Housing Justice Attorney and COVID19 Longhauler, began a WIRED retraction campaign because he was concerned about the harm caused by “The Painful Truth About Long COVID” and the continued harm that could occur while the article remains on WIRED’s website.
After attempting to engage WIRED and Condé Nast about concerns raised by patients, clinicians, and journalists, Scott filed an ethics complaint developed with more than 25 patient advocates and the team at #MEAction. As Laurie Jones, Executive Director of #MEAction, stated “Scott and the patient advocates that developed this are fighting a narrative that has done substantial harm in the past and #MEAction is proud to amplify this effort.”
The ethics complaint asks WIRED to address concerns about the article’s scientific accuracy, ethical standards, and impact on people living with Long COVID and ME/CFS.
Scott Hugo’s LinkedIn post: https://www.linkedin.com/posts/scotthugo_meaction-share-7482540542334091264-t8Xt/
#MEAction-hosted ethics complaint: https://b5886a97-1363-4549-a1d5-52252438e251.usrfiles.com/ugd/b5886a_2ddf8d989fd2497f90d11a0a53a42c54.pdf
Sign the Call for Retraction to WIRED petition: https://c.org/tyJN6VjLph
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