When you’ve been in the online support groups for enough time, you’ll eventually realize that most of the information out there is unreliable. Some people are misguided. Some people are grifting. Some people intentionally put out misinformation. So who do you trust? Here’s how you can slowly figure it out:
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I made a list of doctors/researchers/advocates who successfully treated themselves or a loved one. It’s not a perfect filter. But it’s a place to start when you’re trying to figure out the better sources of information. The successful people are a little more reliable.
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Many treatments have already been tried because ME/CFS has been around for decades. Cytokines were tried many years ago. Microclots were so 2022.
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Put in the work. Once I did a lot of reading, I started to figure out that there is plenty of conflicting information out there. One survey claims that 59.7% of long haulers have diarrhea while another survey claims 2.6%. They can’t all be right. On top of that, there’s a ‘everything works’ problem in the scientific literature where it seems that there are multiple magical treatments. In reality, people make stuff up, bend the truth, data mine, or rig their study.
Pay attention to the people who have recovered
In the Treatment Outcomes Survey data, I analyzed the people who had (mostly) recovered versus the people who hadn’t.
The truth is that the non-recovered people introduce a lot of noise into the data… and that noise drowns out important signals about what treatments are helping people recover. But we can simply take the data from people who have recovered because they’ve actually experienced recovery.
I don’t mean to be rude or to put down the people who haven’t recovered. Some of them may really know what they’re talking about and it’s just unfortunate that they still have chronic illness. But when it comes to gathering reliable data, we need to get data from both groups (to adjust for popularity) and to get the potential efficacy signals from the people who have recovered.
Doing that analysis was the major breakthrough in my research. Non-recovered people rate treatments differently and it can lead us in the wrong direction. The data is more reliable when that is taken into account.
The other insight is subtle and hard to understand unless you spend a lot of time conducting survey research. One major challenge in survey research is that people will misinterpret your questions. Because people have wildly different ideas about what it means to be ‘recovered’ (e.g. recovered but still unable to work), it’s better if you ask questions that aren’t subject to wildly different interpretations. It turns out that asking if people are ‘bedbound’ is not a great idea compared to asking about their ability to work, to walk, and about how much suffering they are in where the highest value is the ‘worst suffering imaginable’. I’m kind of getting into the weeds of survey research here. But when researchers are inexperienced in survey research, you get situations like one survey claiming that 59.7% of long haulers have diarrhea while another survey claims 2.6%. This is the kind of thing that you have to do to try to get the most reliable survey data possible. Survey data can still be unreliable but it’s unfortunately the best that we have right now (other than the randomized controlled trial on HBOT).
I wish that other research groups like PLRC (and MEAction) were doing higher quality survey research. Let’s just say that I wasn’t the first person to talk to the PLRC researchers about survey design and that Body Politic was in the process of kicking me off their Slack group. The PLRC paper is the one that claims that 59.7% of long haulers have diarrhea. The paper has 1500+ citations. The level of academic research is not that high because politics get in the way.
What really goes on
The sad reality is that there is plenty of adverse selection in the chronic illness space. The best evidence-based treatments (summarized here) are only mildly sexy. None of the treatments identified so far are magic cures. Unfortunately, magic cures get most of the attention. So, snake oil peddlers end up dominating the chronic illness space.
Currently millions of dollars in research funding is going towards trendy nonsense like microclots, so you see Yale researchers like Akiko Iwasaki promote that nonsense because she got a piece of the Balvi money. (There are different levels of grift; researchers like Akiko and Caroline Dalton are actually some of the more ethical researchers in the space.)
Patients and “advocacy” groups are actually pushing the scientific research in an unhealthy direction. Certain researchers who have chronic illness themselves (e.g. PLRC, Amy Proal) get a piece of the research money. The problem is that they encourage hype around sexy (but bad) ideas because that’s a good strategy to get research funding. Unfortunately, this can cause some patients to get the wrong idea about what the science is and some of them do dangerous stuff like HELP apheresis. And nobody really wants to talk about the vax-injured ME/CFS patient who died from HELP apheresis.
I hope you now understand why I don’t trust people. Chronic illness patients deserve to get their health back but many people get in the way. If your main goal is to get your life back, then you should put in a little work to figure out what’s going on and to figure out the reliable sources of information. I hope this opens your eyes to what’s going on.