In this special episode of TWiV, David Tuller returns to discuss the current state of public health and research, particularly concerning Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID. The conversation critically examines RFK Jr.'s detrimental impact on American public health funding and infectious disease research, highlighting the shortsightedness of deprioritizing conditions often stemming from infections. A significant portion of the discussion is dedicated to dissecting the controversial PACE trial, its methodological flaws, and the persistent, unscientific application of similar "psycho-behavioral" interventions (like graded exercise therapy and cognitive behavioral therapy) to ME/CFS and Long COVID, despite a lack of objective evidence and often below clinically significant outcomes. Tuller also touches on the "Cochrane Mess," the role of "The Sick Times" in chronicling the Long COVID crisis, the search for biomarkers, and how the global Long COVID pandemic has, despite its tragedies, brought unprecedented attention and empathy to ME/CFS and other post-acute infection syndromes, challenging long-standing stigmatizing narratives.
Summarization:
0:00 - 3:51 RFK Jr.'s Detrimental Impact on Public Health: David Tuller, Senior Fellow in Public Health and Journalism at UC Berkeley, discusses the severe cuts to NIH, CDC, and FDA funding under RFK Jr.'s influence, particularly impacting infectious disease research and chronic conditions like ME/CFS and Long COVID. Tuller argues these cuts are shortsighted and devastating to research infrastructure and personnel.
15:37 - 29:05 Critiquing the PACE Trial and its Legacy: Tuller recounts the controversy surrounding the 2011 PACE trial, which promoted graded exercise therapy (GET) and cognitive behavioral therapy (CBT) for ME/CFS. He asserts research misconduct due to altered outcome measures and withheld raw data, which independent re-analyses debunked. The UK's NICE guidelines have since rescinded recommendations for GET and CBT as cures. Tuller notes that the same flawed methodologies and "psychosomatic" assumptions are being applied to Long COVID studies, often yielding only marginal, subjective benefits.
29:05 - 35:09 ME/CFS Origins and Biomarker Challenges: The discussion touches on historical ME/CFS clusters following infections, often misattributed to mass hysteria. Long COVID is presented as a worldwide natural experiment in post-infectious illness. The only current objective biomarker for ME/CFS is the two-day cardiopulmonary exercise test, which is debilitating for patients, and there are no reliable blood tests yet.
35:09 - 41:29 Treatment Failures and Emerging Insights: The failed Rituximab trial for ME/CFS is highlighted as a case where researchers genuinely re-evaluated their assumptions, unlike those promoting psycho-behavioral interventions. Vaccination is noted to reduce Long COVID rates and severity, while Paxlovid's impact on Long COVID prevention is still debated.
41:29 - 49:05 The "Cochrane Mess" and New Journalism: Tuller describes "The Sick Times," a journalist-founded publication dedicated to covering the Long COVID crisis. He also details the "Cochrane Mess," where Cochrane, a UK charity, controversially abandoned an update to its problematic 2019 review on exercise therapy for ME/CFS, despite its inadequacy and reliance on flawed studies like PACE.
49:05 - 56:09 Flawed Long COVID Trials and "Effort Preference": Tuller critiques a Norwegian Long COVID trial, which reported marginal benefits below clinical significance, relying solely on subjective measures. He lambastes the concealment of objective data (e.g., from acttometers) that did not support their claims. He also discusses the insulting "effort preference" concept from an NIH ME/CFS study, which implied an unconscious lack of effort by patients, stemming from a researcher with a known psychosomatic bias.
57:38 - 1:00:08 Long COVID's Impact on ME/CFS Awareness: Despite initial mixed feelings, Long COVID has significantly raised awareness and empathy for ME/CFS and other post-acute infectious syndromes. The widespread impact, particularly on healthcare workers, is challenging the long-standing stigmatizing narratives that blamed patients' symptoms on psychological factors rather than biological illness.