The Long Haul COVID-19 Syndrome (LHCS) is an often debilitating syndrome characterized by a multitude of symptoms such as prolonged malaise, headaches, generalized fatigue, sleep difficulties, smell disorder, decreased appetite, painful joints, dyspnea, chest pain and cognitive dysfunction. The incidence of symptoms after COVID-19 varies from as low as 10% to as high as 80%. LHCS is not only seen after the COVID-19 infection but it is being observed in some people that have received vaccines (likely due to monocyte activation by the spike protein from the vaccine). A puzzling feature of the LHCS syndrome is that it is not predicted by initial disease severity; post-COVID-19 frequently affects mild-to-moderate cases and younger adults that did not require respiratory support or intensive care.
The symptom set of LHCS in the majority of cases is very similar to the chronic inflammatory response syndrome (CIRS)/myalgic encephalomyelitis/chronic fatigue syndrome, although in LHCS, symptoms tend to improve slowly in the majority of the cases. Furthermore, the similarity between the mast cell activation syndrome and LHCS has been observed, and many consider post-COVID-19 to be a variant of the mast cell activation syndrome. LHCS is highly heterogenous and likely results from a variety of pathogenetic mechanisms. Furthermore, it is likely that delayed treatment (with ivermectin) in the early symptomatic phase will result in a high viral load, which increases the risk and severity of LHCS.
Although numerous reports describe the epidemiology and clinical features of LHCS, studies evaluating treatment options are glaringly sparse. Indeed, the NICE guideline for managing the long-term effects of COVID-19 provide no specific pharmacologic treatment recommendations.
Given the lack of available treatment recommendations in the setting of large numbers of patients suffering with this disorder globally, the FLCCC developed the I-RECOVER protocol in collaboration with a number of expert clinicians including Dr. Mobeen Syed, Dr. Ram Yogendra, Dr. Bruce Patterson, and Dr. Tina Peers. Although our varied yet often overlapping treatment approaches were initially empiric, while based on both preliminary investigations into and prevailing theoretical pathophysiologic mechanisms of LHCS, the consistently positive clinical responses observed, often profound and sustained, led the collaboration to form the consensus protocol below. As with all FLCCC protocols, we must emphasize that multiple aspects of the protocol may change as scientific data and clinical experience in this condition evolve, thus it is important to check back frequently or join the FLCCC Alliance to receive notification of any protocol changes.