When an illness strikes, most patients and doctors have the same expectation: treat it, recover, and return to normal. But that’s not always what happens. If you know or care about someone who never quite recovered from an illness—or if it’s you—this will sound familiar. Pain that lingers. Disturbed sleep. Constant fatigue. Persistent brain fog. The constellation of symptoms can take hold for months, years, or even decades.
Invisible, complex conditions like fibromyalgia, chronic fatigue syndrome (ME/CFS), and Long COVID are increasingly understood through this lens. Shania Twain has described long-term complications, including vocal damage after a tick bite led to Lyme disease. Cher has said that Epstein-Barr virus triggered her chronic fatigue syndrome, and Gwyneth Paltrow has spoken about living with Long COVID for years. In their cases and millions of others, chronic pain and other lasting symptoms become entrenched after an initial infection the body can’t fully reverse.
Just when these patients need healthcare the most, it can fail them. Instead of receiving informed care, they’re too often dismissed or disbelieved—pushed to the margins by a system biased toward neat-and-tidy recoveries.
Recovery, interrupted
When recovery stops short, patients are left to battle a different kind of illness, one that medicine does not always recognize or manage well. Desperate for relief, they move between providers and repeat their medical histories, trying treatments aimed at individual symptoms rather than the condition as a whole. Over time, the burden compounds: worsening chronic pain, cumulative fatigue, and the mental toll of uncertainty. Some are steered toward therapies that don’t target the underlying condition—including opioids, despite no proven benefit for chronic pain.
Debilitating patterns like this are increasingly recognized as Infection-Associated Chronic Illnesses, or IACIs. Syndromes such as fibromyalgia, ME/CFS, Long Lyme, and Long COVID are now understood to involve nociplastic pain driven by altered brain processing that doesn’t show up on standard tests. Yet even with textbooks, diagnostic codes, and clinical guidelines that address these chronic conditions, too many patients are met with doubt and fragmented care that falls short. Meanwhile, a vicious reinforcing cycle of pain, disturbed sleep, fatigue, and cognitive strain upends patients’ lives and leaves them outcasts from healthcare.
Research and policy increasingly reflect this reality. The National Academies of Sciences (NAS) has prioritized infection-associated chronic illnesses, and the NIH HEAL Initiative is advancing our understanding of these conditions. But that progress has yet to consistently reach patients in the care they receive. Medicine remains largely oriented toward a conventional recovery from infection, leaving many without a clear diagnosis—or the benefit of an informed prognosis that may actually be better than they fear.
Patients need care that can pivot
Illness does not always follow a linear path, and responsive care cannot be built on that premise. Patients with post-infectious conditions need their providers to adjust as symptoms evolve, not default to approaches built for short-term illness. These syndromes should be treated as a primary condition, not an afterthought. Chronic pain, sleep disturbance, fatigue, and brain fog should be addressed as part of the same clinical picture.
Medical education and clinical practice must address the gap between routine care and what’s now understood about post-infectious conditions and pain processing. Diagnostic frameworks that recognize symptom patterns already exist and should be applied sooner, with consistency in everyday practice. Earlier identification could reduce years of uncertainty and limit the progression of symptoms that become harder to treat over time.
Policy and research can help accelerate this shift. Sustained federal investment to study post-infectious syndromes is essential, along with support for integrated care models that move beyond symptom-by-symptom treatment. Development of nonaddictive therapies should remain a priority, targeting what drives these illnesses in the first place. With care that pivots, we can launch a new era in treating chronic conditions and deliver a better future for millions—finally bringing recovery within reach.
Seth Lederman is co-founder, CEO and chairman of Tonix Pharmaceuticals Holding Corp., a biotech company dedicated to developing novel medicines for central nervous system disorders.
