UK Organization Long Covid SOS Endorses Patient-Led Journalism Ethics Complaint Against WIRED
- Long Covid SOS
- 11 minutes ago
- 4 min read
Transatlantic partnership underscores the growing and global movement demanding responsible, ethical reporting on chronic conditions like Long COVID and ME.
Contact: Adriane Tillman, MEAction
Helen Lunt Davies, Long Covid SOS
AUGUST 18, 2026: Today the respected United Kingdom advocacy organization, Long Covid SOS, formally endorsed the patient-led journalism ethics complaint against WIRED for their June 2026 feature article, “The Painful Truth About Long COVID.” Long Covid SOS joins a growing, cross-sectional coalition of patients, physicians, researchers, journalists and allies demanding that WIRED comprehensively address the ethical failures of this feature article. The coalition further seeks to promote responsible, compassionate, and ethical reporting in the future on chronic conditions.
The journalism ethics complaint, cosigned by over 25 patient-advocates and the advocacy organization MEAction in July, was formally submitted to the Society of Professional Journalists and Columbia Journalism School. The team at Long Covid SOS offered a stirring endorsement in support of these efforts:
“We campaign for fair and responsible journalism on Long Covid and other chronic illnesses. People with ‘invisible’ conditions have already faced years of disbelief and misunderstanding. Now, as the COVID-19 pandemic has left millions of people with ongoing illness and disability, many more are experiencing the same stigma. How these conditions are reported has real consequences for how we are perceived, treated and supported.
Reporting should reflect both the growing biomedical evidence and the lived experience of those affected. One person’s experience is not fact, and one anecdote cannot be extrapolated and applied to everyone with Long Covid; yet this is too often present as the case. This can mislead people who have little understanding of how debilitating Long Covid can be and adds to the disbelief and dismissal that many patients already face.
Journalists don’t have to agree with us. They do, however, have a responsibility to get the facts right, to properly represent the evidence and to make clear when something is opinion rather than established fact. This matters because inaccurate or misleading reporting can have a real impact on people’s lives.”
MEAction Executive Director, Laurie Jones, stated: “The press has a responsibility to represent subjects with full contextual accuracy and transparency. The journalist presented anecdotal evidence as scientific consensus, failed to disclose his own bias in his reporting, and painted a deeply flawed picture of Long COVID that only contributes to society dismissing the seriousness of the disease - and current neglect in biomedical research."
The coalition now includes endorsements from respected clinicians and researchers like Dr. David Putrino, Dr. Monica Verduzco-Gutierrez, and Dr. Špela Šalamon; patient-advocates such as Dr. Dona Murphey, Tawanna D. Lee, and Lisa McCorkell; journalists like Helene M. Epstein; and organizations including the Patient-Led Research Collaborative (PLRC).
The journalism ethics complaint joins other existing efforts in response to WIRED’s feature article on Long COVID, including a petition written by a parent caregiver-advocate of two teenage children with Long COVID. The petition calling for retraction now includes over 3100 signatures.
Scott Hugo, a patient with Long COVID and ME who also served as lead author of the ethics complaint, stated:
“I believe in the best of journalism, and that the Fourth Estate is foundational to a thriving democracy. I am a proud subscriber of multiple publications because I believe we must support news organizations doing responsible work to inform the public.
When publications violate the ethical principles laid out by the Society of Professional Journalists, they violate the public trust and cause real and lasting harm. This is especially true for marginalized communities like the disabled, people of color, and those living with chronic illness, who suffer disproportionate harm from these violations. The medical establishment, family and friends are more likely to dismiss our symptoms as psychosomatic when they read articles like “The Painful Truth About Long COVID” that fail to incorporate the growing body of scientific evidence supporting the mechanisms of our complex chronic condition. We deserve better, and we are fighting for the responsible, ethical, compassionate coverage we deserve.”
#MEAction is a national nonprofit organization advocating for people with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS), Long COVID, and related infection-associated chronic conditions.
Long Covid SOS was established in June 2020 during the early months of the pandemic and is staffed entirely by volunteers with lived experience of Long Covid. We are now registered with the Charity Commission and our governance is provided by a board of trustees. We have played a major role in generating awareness of the condition through social media and press campaigning. We work closely with the NHS, RCGP, Dept for Health and Social Care, NICE, ONS, NIHR and the WHO and also collaborate with researchers in order to further our mission of Recognition, Research and Rights for people with Long Covid. Moving forward we aim to continue to be an active voice, providing an informed and lived experience perspective to national and international organisations as well as the research community.
Scott Hugo is the lead author of the journalism ethics complaint against WIRED. He served as a local government public interest attorney for nearly a decade prior to becoming disabled by Long COVID in February 2024. He also taught graduate public policy ethics at Mills College from 2017-2022. He is now a patient-advocate living with diagnoses of Long COVID, ME, POTS, MCAS, hyperlipidemia, anemia, and more. Due to severe cognitive impairment and a diagnosis of Myalgic Encephalomyelitis, Scott can only engage in cognitive work for 15-20 minute bursts on good days.
