From Body Politic:
In light of recent public conversations about the role of exercise, neural training, and cognitive behavioral therapy in Long COVID recoveries, we at Body Politic want to make clear our stance on certain rehabilitation methods, and the varied paths to Long COVID recovery.
COVID-19 is a novel virus, and there is much we still don’t know about “Long COVID” (the patient-coined term for long-term symptoms following a COVID-19 infection). Researchers and clinicians are actively working to understand what causes long-term symptoms, why some patients develop them, and whether all patients will be able to eventually make a full recovery. Until quality research is completed, it is important that we not rush to conclusions about what Long COVID is or how to treat it. It is also worth noting that while many Long COVID patients have similar symptoms, “Long COVID” still serves as an umbrella term for a variety of experiences.
Because Long COVID symptoms and experiences are diverse, we believe it is dangerous to promote treatments with insufficient evidence, especially when they may be harmful to a subset of patients.
Body Politic prides itself on being historically informed and patient-centered. We believe it is vital to listen to chronic illness and disability communities. Many Long COVID patients have gone on to be diagnosed with other conditions , including Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS). In a recent study conducted by Body Politic’s research partner, the Patient-Led Research Collaborative , an average of 72% of the surveyed patients reported experiencing Post-Exertional Malaise
(PEM) – a common ME/CFS symptom – after month six. Our peers in the ME/CFS community have been vital allies in the fight to understand Long COVID in the context of other post-infectious sequelae and advocate for patients’ needs. Research findings on ME/CFS must be considered when promoting treatments and rehabilitation programs for Long COVID patients who exhibit similar symptoms.
Both Long COVID patients and others with chronic and acute illnesses have reported being psychologized by clinicians and denied care as a result. This phenomenon fits into a much larger history of medical providers prescribing positive thinking and exercise therapies as cures for chronically ill and disabled patients.
Such suggestions place blame on those suffering and are rooted in ableism. In the United Kingdom, people with ME/CFS have often been prescribed Graded Exercise Therapy (GET) along with Cognitive Behavioral Therapy (CBT), despite evidence that contradicts these recommendations and patients’ testimonies that these therapies worsen symptoms. To broadly claim that GET or “brain training” can cure Long COVID puts those living with Long COVID at risk. It also ignores the history of those living with other chronic illnesses.
Each person living with Long COVID has their own unique path to recovery. We do not deny that certain treatment options such as physical rehabilitation, nutritional programs, cognitive exercises, or therapies can be beneficial for some patients, but there is still too little information – and too much potential for harm – to promote these treatments for all.
Those of us who run patient support groups or speak publicly about our experiences have a responsibility to use caution and provide context when promoting therapies or treatments. We believe there is power in community and that we must center patients’ voices. Most importantly, we must consider history and prior research findings and analyses when representing patients’ needs or speaking on their behalf.