Update: Patient-Reported Treatment Outcomes in ME/CFS and Long COVID

From the Desk of Dr. Danielle Meadows
Vice President of Research Programs & Operations

Professional headshot of Danielle Meadows smiling at the camera.

In the past, I’ve shared some information about the peer-review publication process—the last stage of the research process—and the concept of a preprint. We recognize that the publication process takes a long time, and we want to provide results and helpful information to the community as quickly as we can. So when possible, our research teams try to release preprints of our work.

The image is a flowchart with four stages of the research process: "Study Design, IRB/Ethics Review”,”Recruitment, Data Collection”, “Data Analysis” and “Publication." The fourth stage, "Publication," is highlighted with a teal background, indicating emphasis.

Today I get to share an update on a preprint that we released back in November: the manuscript on the TREATME survey has now been published in a peer-reviewed journal.

The Heart of the Matter

  • OMF’s Computational Research Center for Complex Diseases, in collaboration with a patient-researcher, released a preprint in November 2024 of their work analyzing patient-reported treatment outcomes in ME/CFS and Long COVID.
  • After undergoing the peer-review process, the manuscript was recently published in PNAS.

Update: Patient-Reported Treatment Outcomes in ME/CFS and Long COVID

OMF’s Computational Research Center for Complex Diseases, in collaboration with patient-researcher Martha Eckey, PharmD, released a preprint in November 2024 of their work analyzing patient-reported treatment outcomes in ME/CFS and Long COVID. In the manuscript, the team covers information on more than 150 treatments from over 3,900 patient responses to the TREATME survey, including their perspective on how effective the treatments have been and which symptoms were most affected by each treatment. For a full recap of the paper, check out our summary here.

After releasing the preprint, the manuscript was submitted to Proceedings of the National Academy of Sciences (PNAS). The paper went through peer review, in which the reviewers requested minor revisions to the manuscript. Even though the edits were minor, there were several administrative steps to take even after the paper was accepted that extended the time to publication to over 7 months—a good example of the unpredictability of the timeline for publication.

Read the full publication in PNAS.

Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME / CFS) Post Treatment Lyme Disease Syndrome (PTLDS), Fibromyalgia Leading Research. Delivering Hope.Open Medicine Foundation®

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