There is growing realisation that the huge amount of research funding that has been poured into trying to find the cause of and an effective treatment for Long Covid over the past three years has not produced any breakthroughs
This comes as no surprise to those of us who have been pointing out the important clinical and pathological overlaps betwen Long Covid ME/CFS since May 2020.
Had the worldwide medical establishment listened to the what we were saying at the start of the pandemic a far more focussed and collaborative research strategy could have been initiated and one which recognised and understood the concept of post viral disease
Having failed to listen and make any breakthroughs in finding either the cause or an effective form of treatment for Long Covid the time has come to adopt a radical new approach to the whole Long Covid research strategy and one that also involves ME/CFS – as the authors of this article correctly point out
Dr Charles Shepherd
Trustee and Hon. Medical Adviser. The ME Association.
by Stephen Phillips and Michelle Williams
The health outlook for Long COVID sufferers is no better today than it was when the condition was first recognized in early 2020. This has been attributed in large measure to the disappointing results of clinical research, particularly when compared to the magnitude of the problem.
Now with hundreds of published results emerging from federally conducted or sponsored research, outraged experts and patient advocates say that there is little to show for it. The critique is that the pace of the work is slow and opaque, and that little has emerged that directly impacts prevention or patient care. The biomedical community has been under steady attack for lack of progress in prevention and treatment underlying a failure to help patients.
There is a lot at stake in getting the U.S.’s Long COVID research strategy right. With a national prevalence of the disease in the range of 5% to 15%, an estimated 10 to 35 million working-age adults have Long COVID, and it may be keeping as many as 4 million people out of work. There is a desperate need for effective treatments to mitigate their devastating frustration, suffering, functional impairment, and disability.
But what if the medical research community spends years and hundreds more millions of dollars digging a dry hole? The answer is not to dig deeper but to dig elsewhere with a more promising outlook and sharper tools.
Before reaching the conclusion that more and better biomedical research is needed, we must address why over three years of research has failed to move the needle. Lessons from the past should influence this calculus, as well as serve as a guide for future return-on-investment and likelihood of success.
We suggest a unifying hypothesis that explains the striking lack of progress in understanding Long COVID through a traditional biomedical and public health lens. Our recent editorial in STAT posits that Long COVID is a new name for an old syndrome. It is virtually indistinguishable from the condition long known in the medical lexicon as post-infectious syndrome or myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)—in colloquial terms known simply as “chronic fatigue syndrome.” Logic and reason dictate that acute SARS-CoV-2 infection causes Long COVID. Or, more accurately, acute COVID-19 triggers ME/CFS in the same way many other infectious agents trigger ME/CFS.
It is true that ME/CFS is still not well-understood and its research has been chronically underfunded. However there are decades of relevant clinical and research experience that should be productively and rapidly applied to Long COVID. The established track-record of ME/CFS research exploring cause and pathogenesis has been singularly unproductive. By analogy, the current research directed at finding diagnostic and mechanistic clues to Long COVID is a resource-intensive, lengthy uncharted process. In the ME/CFS paradigm it will produce further leads for more biomedical research, but with a low ultimate likelihood of helping patients.
Challenging an existing paradigm
Research still has a vital role in the new ME/CFS/Long COVID paradigm. But it should be a different kind of research. The kind that no longer focuses on biomarkers and mechanisms. These are sure to provide “promising” but false leads and divert resources. Focus should be on health services research and on measures that directly impact the welfare of Long COVID sufferers: prevention, improved prognosis, access to empathetic care and quality of life issues. This includes investigation into symptom management, the effectiveness of comprehensive care delivery models, and social science research on actionable solutions applicable to at-risk subgroups (e.g., women, obstetrics and pediatric patients, people of color, underserved populations).
Patients and advocacy groups should be closely involved in every stage of study design and execution, as they will have the major stake in living with the findings and are the ultimate determinants of success.
With Long COVID research now reaching a mature stage, there is a realistic hope that patient and biomedical communities can collaboratively reset the national research agenda to mutual benefit under the umbrella of a new paradigm and sponsor.
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