Building Scientific Confidence Part 0: Introduction
The Long Covid and ME/CFS patient communities have a complicated relationship with biomedical research. Everyone who pays attention to research through social media has probably seen (or participated in) a conversation like this:
Individual scientific papers about Long Covid and ME/CFS can be confusing, and results from different research groups sometimes contradict each other. People try to understand how their medical test results fit in with published research and with the results of other community members. The many theories of what causes these diseases are frequently discussed. Perhaps most importantly, patients discuss clinical trials: we critique trial designs, help each other find trials to participate in, and share disappointment when they fail.
There are several reasons why patients might be hesitant to engage with research, some general and some specific to Long Covid and ME/CFS. Some patients might be comfortable with all of the uncertainty, but people generally find uncertainty in high-stakes situations stressful. People often have a history of struggling with math or science that pushes them away from learning about research. Since research hasn’t yet led to powerful treatment options that work well for most Long Covid and ME/CFS patients, some patients believe (very understandably) that none of it has any value. There are also patients who simply can’t pay attention to research as much as they’d like to because of cognitive issues or PEM. And this isn’t even getting into the ways biased researchers have caused harm, which surely contributes to suspicion and frustration around biomedical research as a whole.
At the same time, there are many reasons for patients to feel motivated to keep up with research. It can be a source of hope, an important psychological resource, and a point of connection with other community members (though it also frequently creates conflict). It also influences how we make decisions that affect us materially as individuals and as a community. Here are some of the ways our understanding of research can affect the decisions we make:
What supplements we take and what medications we try to access, through our doctors or in other legal ways, if we have the means (this post is not medical advice and I’m not encouraging self-experimentation, I’m just recognizing that people do it)
What testing we try to access
What specialists we seek out
What organizations or research projects we donate to, or ask others to donate to
What researchers we encourage on social media or contact to share our thoughts
What clinical trials or studies we participate in, or encourage others to participate in
If we try to change the design of a study or clinical trial
These decisions can have fairly high stakes. Many LC and ME/CFS patients are unable to work and don’t have much money, and want to make the best decisions possible about medical care or donations with limited resources. A lot of research on LC and especially ME/CFS is funded or conducted directly by the community and our allies. Patients have even suggested forming a union to negotiate study and trial designs with scientists-slow study recruitment is a major reason why science can take a long time, and all scientists who do human studies (good or bad) want people to sign up. As patients, we could promise researchers that well-designed trials would be quickly filled, and trials that disrespect and harm us would not be.
Of course, many patients are too severely ill for any of this, are burnt out from trying treatments that didn’t help, or don’t want to do activism. No one is required to be an advocate, even if they are hypothetically well enough! But if we are going to make decisions based on how we understand research, we deserve to do so with as much confidence as possible. That will be the main goal of this newsletter: building scientific literacy and self-confidence to strengthen the Long Covid and ME/CFS communities.
I want patients who are interested in research as an advocacy priority or for personal reasons to have the tools we need to understand it: working knowledge of statistics, experimental design, biology, etc. This includes myself; I hope to build on my existing knowledge as I write these posts. I’m not an expert, but I do have some relevant credentials: I worked in an academic lab doing medical imaging experiments for two years, then had a job where I helped biochemists develop human diagnostic tests for another two years until September 2024. I also have some experience teaching STEM. But credentials aren’t everything; they’re just one factor in how we create meaning from information. I believe all patients with the physical capacity to engage with research in any way should be able to trust their own minds around it.
The next post will be about the two kinds of errors that Long Covid and ME/CFS research (or any scientific research) can contain, and the post after that will be about the role of artificial intelligence in research. As a longer term project, I want to develop a general framework for summarizing papers and identifying important results, connections to other work, and limitations that patients can use. This work will draw on concepts Long Covid and ME/CFS patients and researchers have written about and ideally incorporate feedback from others. I also hope to summarize research for other patients using this framework on request, barring some drastic change in my cognitive capacity. Research helps connect us and influences our advocacy, and we deserve a confident, informed orientation toward it.