Reading and participating in research about Long COVID

from LONG COVID ESSENTIALS
a resources series by The Sick Times x Long COVID Justice

What people with Long COVID should know about reading and participating in research


Medical providers might not know about the latest Long COVID research. Updating medical practices based on research takes a long time: up to 25 years. So, people with chronic diseases often find online information to advocate for their own care. You can read studies to learn about potential treatments, then bring them to doctor’s appointments.

Where to find scientific papers

Determining the type of care you need

Understand the “big picture” of a paper before going into specifics. Papers are often broken down into specific sections. You might read them in this order:

  • Abstract and title: An overview of the study and its findings, summarizing the rest of the paper.
  • Introduction: Identify the research question and how it adds to existing knowledge.
  • Conclusion/discussion: These may be the last sections of the paper. They explain the results of the study, how findings relate to other research, challenges for this study, and potential next steps. This will give you context for the details in the other sections.
  • Results and methods: How data were collected and analyzed. Pay attention to:
    • Horizontal and vertical scales of graphs
    • Symbols and color schemes in graphs
    • Statistical analyses and sample sizes (who and how many people were in the study, and what data was evaluated?)
  • Acknowledgments: Look at funding sources and potential conflicts of interest.
  • References: Find relevant papers that may give you additional information or perspectives.

Understanding peer-reviewed paper vs. pre-prints

  • Peer-reviewed publication: Papers are sent to researchers who work in this area but who were not part of the study team. They give feedback and criticism used to recommend further edits, in order for the study to be approved and published.
    • This does not involve external replication of results.
  • Preprint: The paper has not (or not yet) gone through peer review. These are generally published on arxiv/bioarxiv/medrxiv. The results may be considered less definite or more preliminary.

Resources

Participating in research

If you join in a clinical trial, you may get early access to a potential treatment. Anyone who signs up for a trial will be given an informed consent form, which will detail what the trial is studying, what is required from participants, and possible risks and benefits.

If a study involves one or more treatments, they will be described in the consent form. Some trials compare treatments to a placebo, which is similar to the treatment but does not contain the active ingredients. Look at the study’s name and description, eligibility criteria, who funded the study, potential risks of the treatment, and where the trial is being held.

Finding relevant trials:

Writer: Fayth Tan • Editor: Betsy Ladyzhets • Medical reviewer: Dr. Michelle Haddad

Printable version of this resource page

Additional resources & info

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Notes

  • This series was published in fall 2024; some information may be subject to change.
  • Although each topic has been reviewed by medical professionals, they are informational resources, not medical advice. Always talk to your medical providers before trying treatments or symptom management strategies. 
  • Each resource page offers brief information and is not comprehensive. We know there is much more information on each topic we cover, and that there are additional topics not yet addressed in this series.