Opinion Initiating Long Covid RECOVERy, 2024, Marrazzo, Gibbons, Koroshetz

SNT Gatchaman · Nov 13, 2024

Initiating Long Covid RECOVERy
Jeanne Marrazzo; Gary H. Gibbons; Walter Koroshetz

The NIH’s RECOVER Initiative aims to ease the suffering of those living with Long Covid.

Link | PDF (Science Translational Medicine) [Open Access]

Hutan · Nov 14, 2024

Jeanne Marrazzo - Director of the National Institute of Allergy and Infectious diseases, NIH
Gary Gibbons - Director of the National Heart, lung, and Blood institute
Walter Koroshetz - Director of the National Institute of Neurological Disorders and Stroke

The symptom complex that characterizes Long Covid resembles that seen in other infection-associated chronic conditions, no- tably overlapping with those of myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS). Overlapping symp- toms include fatigue, unrefreshing sleep, neurocognitive dysfunction characterized by impaired executive func- tion, exercise intolerance, fluctuating heart rate and sense of dizziness particularly in the upright position, and postexertional malaise, a signature symptom of ME/CFS.
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RECOVER has five major components: longitudinal cohort studies, pathobiology studies, electronic health re- cords research, autopsy and tissue pathology studies, and clinical trials (recovercovid.org/research-components). The adult cohort consists of approximately 15,200 indi- viduals, including roughly 2200 pregnant women who were infected with severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). The pediatric cohort is composed of more than 24,000 babies, children, and young adults. These individuals provide clinical data, and all participants undergo the same initial testing (tier 1). Tier 2 and tier 3 testing was devised to delve even deeper into specific symptom clusters with imaging, neurocog- nitive, autonomic, and other testing to complete the clin- ical picture. Thus far, the adult cohort has donated more than 822,000 biospecimens to the RECOVER bioreposi- tory, whereas the pediatric cohort has donated more than 85,000 biospecimens (recovercovid.org/data).
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People affected by Long Covid have been at the center of RECOVER from the very beginning, playing criti- cal roles in designing studies, responding to surveys, serving on governance and publication groups, and guiding the initiative. Patient representatives were inte- gral to the design of the clinical trials and worked close- ly with RECOVER researchers and health care providers to ensure that the trials addressed safety concerns raised by people affected by Long Covid.
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To date, RECOVER has designed a series of five symptom-based clinical trial platforms to launch mul- tiple interventions (trials.recovercovid.org). Four of these platforms were designed for specific symptom clusters that were identified in the RECOVER cohort and con- firmed by people with lived experience as symptoms that are most disabling and burdensome. These include protocols to test interventions in individuals with auto- nomic symptoms, disordered sleep, exercise intolerance or postexertional malaise, and neurocognitive dysfunc- tion. The fifth platform, RECOVER VITAL, was built to test interventions that might treat viral persistence, hy- pothesized as a root cause of Long Covid. A 2022 study reported persistence of SARS-CoV-2 in autopsy cases up to 230 days from initial infection, raising the possi- bility that Long Covid might be due to inadequate clear- ance of virus (4). The first VITAL study is prolonged treatment (up to 28 days) with oral nirmatrelvir/ritonavir to clear the remaining virus.
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RECOVER’s AUTONOMIC protocol is testing intravenous gamma globulin, effective in chronic autoimmune neuropa- thies, and ivabradine, a drug that lowers heart rate. RECOVER NEURO is testing a brain training program, an online goal management program, and noninvasive brain stimulation toward improving cognitive dysfunc- tion symptoms. RECOVER ENERGIZE will examine the effectiveness of cardiopulmonary rehabilitation for exercise intolerance and, for individuals who are experi- encing postexertional malaise, a structured pacing pro- tocol for symptom management. RECOVER SLEEP will test interventions for Long Covid–related changes in sleep patterns. One trial is testing the US Food and Drug Administration–approved neurostimulants modafinil and solriamfetol for hypersomnia, and another is testing interventions such as melatonin and light therapy to im- prove sleep disturbances. Altogether, these five platforms are testing 13 interventions in eight clinical trials simul- taneously and are built to continue testing until solutions are found for those still suffering.
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Although it is gratifying that data show continued recovery of many individuals even after suffering for 2 to 3 years af- ter their acute infection, critical work must continue to ensure that thousands do not progress to a lifelong illness resembling ME/CFS.Infection-associated chronic condi- tions remain complex, challenging, and perhaps one of the least understood areas of medicine. However, there remains hope that the efforts of research participants and scientists, throughout the United States and around the world, to understand and treat Long Covid may yield discoveries that generalize to other infection-associated chronic conditions like ME/CFS.
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Achieving public health success will require rigorous study of the potential culprits by investigators across the country. To this end, NIH and the biomedical commu- nity have begun mounting and coordinating major efforts across multiple scientific disciplines. The field will need to subject compelling hypotheses to rigorous validation studies and then rigorous clinical trials. Like medical mysteries of the past, this one too will be solved by science. How fast that occurs depends on continued attention and robust and rigorous scientific pursuit.
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rvallee · Nov 14, 2024

People affected by Long Covid have been at the center of RECOVER from the very beginning, playing critical roles in designing studies, responding to surveys, serving on governance and publication groups, and guiding the initiative. Patient representatives were integral to the design of the clinical trials and worked closely with RECOVER researchers and health care providers to ensure that the trials addressed safety concerns raised by people affected by Long Covid.
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Every single comment I have seen of this engagement has been extremely negative. I have not seen every comment or mention of every person involved with RECOVER, but 100% of comments that I did see were very negative. Not bit negative, or mostly negative. Frustratingly negative.

Four of these platforms were designed for specific symptom clusters that were identified in the RECOVER cohort and con- firmed by people with lived experience as symptoms that are most disabling and burdensome. These include protocols to test interventions in individuals with auto- nomic symptoms, disordered sleep, exercise intolerance or postexertional malaise, and neurocognitive dysfunction.
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And this first batch of trials was widely condemned as a complete waste and ridiculed as tone deaf. They are utterly useless and simply ignore reality. They were told and ignored all that feedback.

They certainly talk better. They don't seem to walk much. This all feels like being in an abusive relationship with reality. I was initially very demoralized by what next year brings with the change in government, but it barely feels like it will change anything. Almost 5 years in and they're barely getting started on stuff we've been telling them for decades. They waited so long that it's too late for the most part.

So I guess it's on to Long Bird Flu bringing an even bigger cohort. Which they'll surely screw up anyway.

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Opinion Initiating Long Covid RECOVERy, 2024, Marrazzo, Gibbons, Koroshetz

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Opinion Initiating Long Covid RECOVERy, 2024, Marrazzo, Gibbons, Koroshetz

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