Methodologic and Policy Efforts to Improve a National Long COVID Study, 2024, Jason, Leonard A.

[SNT Gatchaman]

Methodologic and Policy Efforts to Improve a National Long COVID Study
Jason, Leonard A.

Researching COVID to Enhance Recovery (RECOVER) is a National Institutes of Health initiative to improve our understanding of recovery after SARS-CoV-2 infection and to prevent and treat Long COVID. For almost two years, I worked with a RECOVER Task Force called Commonalities with Other Post Viral Syndromes, whose scope was the overlap of Long COVID symptoms and possible pathways with other post-viral syndromes, including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and other dysautonomias.

In this article, I review how I was selected to be on this Commonalities task force, and my role as chairperson of a subcommittee that accomplished some specific goals, such as being able to introduce ME/CFS-specific symptoms and ways to assess them in the adult and pediatric RECOVER battery. An effort to have a study funded to collect an independent sample of patients diagnosed with ME/CFS before the pandemic was not successful.

This commentary outlines the process of working with this Long COVID task force, including steps such as questionnaire development, protocol design, reviews, and policy initiatives. The outcomes of this task force and subcommittee are reviewed, and lessons learned are presented for those with an interest in working toward policy and structural change.

Link | PDF (COVID) [Open Access]

 

[SNT Gatchaman]

On patient involvement and fore-knowledge from ME/CFS —

Dr. Jerry A. Krishnan was the Principal Investigator for this RECOVER adult HUB at the University of Illinois Hospital and Health Sciences System. In November of 2021, after reading this article about the launch of the Illinois HUB, Billy Hanlon, a Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), and Long COVID activist from Minneapolis contacted me as he had read several research articles I had written on ME/CFS, and he asked if I was connected with this Illinois HUB. I said I was not, and Billy then contacted Dr. Krishnan and encouraged him to involve me with this Illinois HUB. After several meetings with Billy and Dr. Krishnan, I was asked to serve as an ME/CFS expert for the University of Illinois RECOVER Hub. As part of my activities over the next few years, I presented several webinars and workshops to Dr. Krishnan’s RECOVER staff on diagnostics and case definitions for ME/CFS.

 

[EndME]

Well done @Dakota15 !

 

[Dakota15]

Thank you, @EndME

 

[SNT Gatchaman]

In this article, I reviewed some of the successes that our subcommittee was able to achieve, along with several of our recommendations that were either not approved or not funded. We were able to make some improvements in the battery of symptoms measuring ME/CFS, as our group was able to rely on decades of basic research dealing with issues of psychometrics with case definitions in the ME/CFS area.

As with all areas of science, there are several steps that need to occur in defining an illness like ME/CFS, such as specifying symptoms in a domain precisely, developing instruments to reliably assess the symptoms, as well as being able to determine thresholds for whether a symptom should be counted. Having familiarity with these fundamental psychometric issues allowed our subcommittee to make strategic recommendations based on published research in the area of ME/CFS case definitions, which was appreciated by the members of the different committees that needed to consider our recommendations.

However, regarding our recommendations involving the development of a new ME/CFS control group for comparison purposes, we were not provided with the funding to pursue this important objective. This was probably due to the priority for a funding focus on Long COVID, as well as the skepticism among some of the scientists who felt that ME/CFS did not have a clear precipitating onset, which was in contrast to Long COVID.

The large amount of funds that have been allocated to Long COVID is in sharp contrast to the limited funding that had been provided for ME/CFS research. In part, this has been due to COVID having a clear, specific trigger. However, SARS-CoV-2 has continually evolved, resulting in the emergence of several lineages. […] The majority of patients with ME/CFS report infectious illnesses before the onset of ME/CFS, with 30% of cases of ME/CFS being due to infectious mononucleosis caused by EBV. During my deliberations with the RECOVER Task Force’s groups, I pointed out that it was possible to study ME/CFS due to EBV, which has an even more specific type of onset than SARS-CoV-2, given all its variants.