Why we keep overlooking effective treatment for chronic illness

As I’ve discussed previously, hyperbaric oxygen therapy (HBOT) is the most proven treatment for Long COVID. Unfortunately, it’s not that sexy. Most people don’t respond to it and a few people get worse while on HBOT. This means that the support groups are filled with mixed reviews, making it very hard to pick out the signal that HBOT, on average, helps.

Because the signal is pretty weak, it tends to get drowned out by doctors and patients who misreport their treatment results. Sometimes the misreporting is dishonest. Sometimes the misreporting is honest as some people are really into that treatment at that point in time. But regardless of why misreporting happens, it drowns out the signal from treatments that work.

To find the signal, we can’t rely on support group anecdotes. Eureka Health has done great work in scraping support groups for data but that method doesn’t find the right signals for treatment. We have to rely on more reliable forms of data collection:

  1. RCTs / randomized controlled trials. This is the most reliable.
  2. Cheaper, less reliable trial designs such as cross-over studies.
  3. Survey data. This is the least reliable but it’s cheap to gather.

The good news is effective treatment exists even if people don’t talk about it much.

Realistic data-driven medicine is not the easiest thing to sell

The data is showing that most patients aren’t getting their lives back - survey data shows that only about 7% are mostly recovered. Some people don’t like to hear that. It’s not as sexy as somebody on the Internet telling you about a quick, easy cure for your health problems.

Currently, the best treatments have some real problems with no good solution:

  • Low response rates, perhaps in the 2-20% range. The best treatments usually don’t work.
  • The treatments that help people recover are generally double-edged swords. Some unlucky people will experience worsening of symptoms from the treatment.
  • Usually there is no doctor or medical professional that will hold your hand.
  • The best treatments can be difficult to access because very few doctors are even aware of them.

It’s not as sexy as somebody on the Internet telling you about a quick, easy cure for your health problems.

Pushing towards real recovery

We don’t need to win a popularity contest to beat chronic illness. We just need reliable science, as unpopular as it may be.

What I’m suggesting is that we’re about to make some real headway in healing people so that they can work again and have minimal suffering from their symptoms. The evidence for HBOT is strong. Survey data shows a signal for 5 other treatments. And if people are willing to try antimicrobials (hopefully the least risky ones), we’ll likely identify more tools to use in the fight against chronic illness.

Don’t squander your time

For patients who need treatment now, the main thing that patients can control is how they spend their time. It takes time to try treatments to see if they push the patient in the right direction, the wrong direction, or neither. It is a limited resource and patients don’t get more of it. So that’s why I write about bad science (e.g. microclots) and questionable treatments - time is precious. Don’t waste it on treatments that people are promoting in bad faith.

There is good science out there, even if not a lot of people are talking about it. I am mostly recovered and I hope that other patients experience survivor’s guilt like I did. It’s a good problem to have.