Wired Magazine Open Letters from ME/CFS San Diego

Beyond the issues discussed in our letter, we are concerned that the article:

• Gives outsized attention to a few personal recovery stories while underrepresenting decades of established biomedical research.

• Reframes long-standing ideas as if they are newly overlooked, despite decades of research into similar approaches in ME/CFS.

• Understates how extensively these approaches have already been studied and the lack of reliable treatment results from them.

• May give readers a misleading impression of the current state of ME/CFS and Long COVID research.

• Risks reinforcing misinformation that can contribute to stigma, delayed diagnosis, poor medical care, and barriers to disability support and accommodations.

• Does not give enough attention to how these narratives affect patients in real life, including families, schools, workplaces, insurers, and government programs.

• May reinforce misinformation and make it harder for evidence-based biomedical research in ME/CFS and Long COVID to be understood, taken seriously, and supported for funding.

Thu, Jun 4, 2026

Hi,

I am writing regarding your article, "Nothing About Long Covid Adds Up."

I have lived with ME/CFS for more than 40 years and have spent much of that time engaged in patient education and advocacy. Three of my now-adult children have also lived with ME/CFS for more than a decade. Because of that experience, I read your article with great concern, not because it asks difficult questions, but because it presents a highly selective (and not evidence-based) account of a scientific and medical debate that has already been extensively examined.

The article's central implication is that biomedical research into ME/CFS and Long COVID has largely failed while neuroplasticity- and brain-retraining-based explanations have been unfairly marginalized. That framing omits critical historical context.

For decades, governments and research institutions in the United States, United Kingdom, and elsewhere invested heavily in biopsychosocial theories of ME/CFS. These ideas were not ignored. They were studied extensively. Researchers developed hypotheses, conducted trials, published treatment recommendations, and influenced clinical guidelines. The controversy surrounding these approaches exists precisely because many patients, clinicians, and researchers concluded that the evidence did not support the claims being made.

The article also relies heavily on anecdotal recovery stories while giving insufficient attention to one of the most basic principles of medical science: correlation is not causation.

ME/CFS and Long COVID are heterogeneous illnesses with fluctuating courses. Patients improve, relapse, enter remission, and deteriorate for reasons that are often poorly understood. Recovery stories can generate hypotheses, but they do not establish mechanisms. This is especially important when discussing commercial programs that have strong financial incentives to amplify success stories while unsuccessful outcomes, relapses, and non-responders remain largely invisible.

The article further blurs important distinctions between legitimate scientific concepts and commercial claims. Neuroplasticity is real. Cognitive rehabilitation has a role in many neurological conditions. Nervous-system function matters. None of these facts, however, establishes that commercial brain retraining programs reverse the underlying disease processes in ME/CFS or Long COVID. Readers are repeatedly led toward that conclusion without being presented with equivalent scrutiny of the evidence.

I was also troubled by the article's suggestion that the lack of a universally accepted diagnostic biomarker means there are no objective biological findings. Researchers have documented abnormalities involving metabolism, autonomic function, immune signaling, exercise physiology, cerebral blood flow, and other systems in subsets of patients. The challenge is not the absence of biological findings. The challenge is determining which findings are causal, reproducible, and clinically actionable, and then obtaining the resources necessary to move beyond proof-of-concept studies. Translating a promising biomarker into a validated clinical test, or a biological mechanism into an approved treatment, often requires investments that dwarf the cost of the original discovery.

Most concerning is the article's potential impact beyond the patient community. Healthcare professionals, educators, legislators, disability evaluators, insurers, and researchers all consume reporting from publications like Wired. When an article minimizes decades of biomedical research while elevating poorly supported narratives of recovery through attitude change, nervous-system retraining, or symptom reinterpretation, it risks reinforcing misconceptions that have harmed patients for generations.

For adults, those misconceptions can contribute to delayed diagnosis, reduced access to medical care, inappropriate treatment recommendations, denial of disability benefits, loss of employment, social isolation, and the breakdown of family and support networks. In illnesses where post-exertional symptom exacerbation is common, inappropriate recommendations can also contribute to worsening function and, in some cases, long-term disease progression.

For children, the consequences may be even greater. Pediatric patients often present differently than adults and are frequently overlooked, even by clinicians familiar with these illnesses. They may lose critical opportunities for education, social development, play, and normal childhood experiences. Because children are still developing physically, cognitively, and socially, delays in recognition and appropriate management can have lifelong consequences. Many pediatric patients are capable of substantial improvement, but that potential is undermined when their illness is dismissed, misunderstood, or managed in ways that prevent adequate recovery and healing..

Science journalism plays an important role in challenging assumptions and exploring neglected ideas. But it also has a responsibility to accurately represent the state of evidence and the history of the fields it covers. In this case, I believe Wired gave readers a misleading impression of both.

  Sincerely,

  Deborah Holcomb

  ME/CFS patient/caregiver/advocate

  President, ME/CFS San Diego

  https://linktr.ee/mecfssd

Jun 8, 2026, 3:19 AM

Hi,

ME/CFS San Diego is forwarding this correspondence because our concern extends beyond a disagreement over a single article. We believe the article promotes potentially harmful misinformation about ME/CFS and related conditions by relying heavily on anecdotal recovery stories while giving insufficient weight to the broader body of scientific evidence. The result is a portrayal of these illnesses that millions in the ME/CFS community, including patients, researchers, family members, caregivers, clinicians, and supporters.believe is inaccurate and misleading.

These claims do not exist in a vacuum. They have real-world consequences for how patients are treated by doctors, researchers, legislators, charitable organizations, government agencies, employers, friends, and family members. When influential publications amplify disproven claims or give disproportionate weight to fringe viewpoints, they can reinforce stigma, undermine public understanding, and create additional barriers to appropriate care, disability support, accommodations, and research investment. Long COVID and ME/CFS have both been proven to be complex, disabling, multi-systemic diseases with significant biomedical differences from healthy controls. 

Patients have spent decades fighting misconceptions about these illnesses. Many found the article deeply hurtful and offensive because it appears to elevate a few anecdotal accounts over scientific evidence and surveyed patient lived experiences; this risks lending credibility to ideas that have been thoroughly investigated and dismissed because they caused substantial harm to patients in the past.

Given Wired's influence and reputation, we believe it is important that senior editorial leadership be aware of both the concerns raised in the attached correspondence and the potential human cost of reporting that misrepresents the evidence surrounding these diseases. 

  Sincerely,

  Deborah Holcomb

  ME/CFS patient/caregiver/advocate

  President, ME/CFS San Diego

  https://linktr.ee/mecfssd

Jun 19, 2026, 5:11 PM

The Long COVID and ME/CFS community deserves a response.

I wrote to the author regarding this article and later forwarded those concerns to Wired. I received no acknowledgment.

My concern is not that the article explores controversial ideas. My concern is that it presents brain retraining and related biopsychosocial theories as neglected alternatives to biomedical research when the historical record shows the opposite.

For decades, these ideas dominated ME/CFS research, clinical practice, and treatment recommendations. They were studied extensively, funded extensively, and promoted by major institutions. After all that time and investment, researchers still failed to demonstrate that ME/CFS is fundamentally driven by false illness beliefs, fear of activity, deconditioning, or similar biopsychosocial mechanisms.

The same problem exists in the article's treatment of Long COVID. After years of research and billions of dollars in funding, there is still no evidence that Long COVID is primarily a biopsychosocial condition that can be resolved through brain retraining, symptom reinterpretation, or changing illness beliefs. In contrast, researchers have identified a growing body of evidence pointing to Long COVID as a complex, disabling, multisystem disease with measurable biological abnormalities.

Yet readers are left with the impression that these approaches represent a promising path unfairly ignored by researchers and advocates.

The consequences are not academic. Articles like this shape how healthcare workers, insurers, disability evaluators, educators, employers, family members, and newly diagnosed patients understand these diseases. Patients who are desperate for answers may be led toward approaches that have repeatedly failed to demonstrate any significant benefit while overlooking management strategies that can help preserve function, reduce symptom exacerbation, reduce the risk of deterioration, and increase the chance of remission.

ME/CFS and Long COVID patients have spent decades fighting misconceptions that these illnesses persist because of faulty beliefs, fear of activity, or unwillingness to recover. Your article reinforces those misconceptions while giving readers an incomplete picture of the evidence.

ME/CFS patient advocates work with extremely limited energy. The fact that so many continue to raise concerns about this article should indicate the seriousness of the issue.

We are asking for a response.

  Sincerely,

  Deborah Holcomb

  ME/CFS patient/caregiver/advocate

  President, ME/CFS San Diego

  https://linktr.ee/mecfssd