• Skip to primary navigation
  • Skip to main content
  • Skip to footer

Susannah Fox

I help people navigate health and technology.

  • Home
  • Rebel Health
  • Blog
    • greatest hits
    • health data
    • peer-to-peer health care
    • public Q&A
  • About me
    • Bio
    • Now
    • Curriculum vitae
  • Events

LongCovid’s citizen scientists

February 1, 2021 By Susannah Fox 9 Comments

LongCovid’s citizen scientists

Amy Dockser Marcus writes with the sensitivity and precision of a scientist, which is why I was thrilled that she recently turned her attention to the patient-led research being conducted by people with LongCovid, which affects an estimated 10-20% of COVID-19 patients.

The Wall Street Journal‘s pay wall may prevent you from reading the full story but do try:

Covid-19 Patients Are Doing Their Own Research: To advance scientific knowledge of the disease, lay people are organizing to generate data about their experiences

Naturally I think this article is yet more proof that patient-led, peer-to-peer health innovation is becoming obvious to everyone.

Let’s start an open thread to discuss the issues raised.

For example:

“The pandemic has created an opening for citizen scientists, because even now clinicians don’t fully understand the virus. Early clinical trial data comes mainly from studies involving hospitalized patients, whose experiences may not apply to those who are suffering but don’t end up in the emergency room.”

– Amy Marcus, Wall Street Journal, Jan. 30, 2021

Or, as Craig Lipset tweeted:

“Patients are at it again!

No longer willing to wait for established research processes to get around to answering the questions most important to them.

Community/Social + Data Sharing = Research Democratized

Go figure?”

– Craig Lipset, Feb. 1, 2021

Marcus talked with a clinician who isn’t so sure:

“I had concerns about the study,” said Adam Gaffney, a pulmonary specialist and instructor at Harvard Medical School. Dr. Gaffney said the decision to include data from people without positive Covid or Covid antibody test results called into question the researchers’ conclusions. “I think the standards and the methods should not be different depending on who is doing the research,” he said.

What happens when the standards are wrong or outdated? What other examples can we cite to show evidence of the need to be more open and flexible, particularly in an emergent and/or deeply mysterious situation?

As I’ve written before, I think patient-led research is a key element of pandemic response. How might we disseminate the tools and lessons learned from this and other citizen-science projects?

Please let me know what you think in the comments below.

Featured image: “Flightplan” by Dan Brickley on Flickr.

Filed Under: participatory research, peer-to-peer health care, research issues, social media Tagged With: Amy Marcus, Emily Sirotich, Eric Topol, Gina Assaf, Helen Burstin, LongCovid, peer-to-peer healthcare, Wall Street Journal

Reader Interactions

Comments

  1. Gilles Frydman says

    February 1, 2021 at 2:57 pm

    One glaring miss in all this talk about citizen science mimics the real world situation. It’s once again mostly about Caucasians talking to Caucasians about their problems. Unless I have missed something no one has yet engaged in doing specific citizen science regarding Covid and long Covid in minority populations since they are so badly impacted by the disease. That’s how we perpetuate health disparities.

    Reply
    • Susannah Fox says

      February 2, 2021 at 7:54 am

      Thank you, Gilles. We need to do better across the board on this, most urgently when it comes to COVID-19.

      Reply
  2. M. C. Collet says

    February 1, 2021 at 5:31 pm

    Another citizen-scientist story from Amy Dockser Marcus vintage 2012.
    Unfortunately people with ALS are still searching.
    https://www.wsj.com/articles/SB10001424052702304818404577345953943484054

    Reply
    • Susannah Fox says

      February 1, 2021 at 6:07 pm

      Thanks so much for making the jump from Twitter to share the link!

      Reply
  3. Sharon Terry says

    February 1, 2021 at 5:43 pm

    We would love to have our data collection platform used for Long Covid research – by and for people. We will waive (the very small) fee for them to set up their studies, connect EHR (to capture data from 700,000 EHR portals – longitudinal data will be critical), and integrate genomics data (we have some very good discounts on WES and WGS). Our IRB stands ready to approve such studies. We’d like to contribute to this very important cause, and per Giles comment above, we have some Black and brown communities who would participate if some of the citizen scientists leading these projects would help them too.

    Reply
    • Sharon Terry says

      February 1, 2021 at 6:13 pm

      And Amy did a story on our work in 2011 – https://www.wsj.com/articles/SB10001424052970204621904577014330551132036

      Reply
      • Susannah Fox says

        February 2, 2021 at 7:55 am

        Thank you! Another great read.

        Reply
  4. Mark says

    February 2, 2021 at 5:37 pm

    Been almost a year. Wanted to add my experience with “the covid fog”. For 10 months I experienced fog (along with many other issues). An extreme amount of stress fell on me to the point where I was overwhelmed, overloaded and probably experienced some sort of break briefly. When I came back in about a day or so I realized the fog left. In the couple months since, there has been no recurrence. I still have other residual issues including other mental impingements but no more covid fog. I wonder if my brain did some some of reboot that removed the fog? And if so if it can be recreated under less extreme circumstances? Time has improved certain things yet not others but this is the only instance of anything I could point to that actually had an effect on my issues.

    Reply
    • Susannah Fox says

      February 3, 2021 at 7:31 am

      Mark, thank you for sharing your experience.

      As Diana Cejas, MD, MPH, wrote on Twitter yesterday:

      My specialist told me “you probably know more about your disease than I do.” Rather than downplaying my experience & research on my rare tumor, he treated me as the expert in the room.

      I wonder how much we’d improve healthcare if we always treated lived experience as expertise.

      Reply

Leave a Reply Cancel reply

Your email address will not be published. Required fields are marked *

Footer

Explore

Don't miss a post

Enter your email address and receive notifications of new posts by email.

Topics

  • Seekers
  • Networkers
  • Solvers
  • Champions
  • Health Data
  • Peer-to-Peer Health Care
  • Public Q&A

Recent Comments

  • Susannah Fox on Jean Nidetch, Rebel Health leader: “Yes! I have enjoyed learning more about her personal story, which is a parable of midcentury feminism. WW was a…” May 9, 10:10
  • barbara figge fox on Jean Nidetch, Rebel Health leader: “Jean Neditch helped so many of us! She changed the landscape for weight reduction by leveraging peer support.” May 9, 08:11
  • Susannah Fox on Public Q&A: “I received scary test results. What questions should I ask my clinician?”: “Thanks, Samantha! I love your signature line/bona fides list — you tick the boxes for “learned and loved experience” described…” May 6, 15:33

Copyright Susannah Fox © 2025 · WordPress · Log in