My hunch/intuition is that some patients may be unintentionally hindering their recovery by trying too many treatments. It is likely the case that treatments are more likely to cause more harm than good. That is the case for most of the experimental drugs that pharma tries.
If that wasn’t the case, then simply trying lots of treatments would improve the chances of recovery… which is the opposite of what the survey data suggests. (Of course, the problem is that surveys have difficulty with the difference between correlation and causation.)
Some (or most?) patients misreport(/misinterpret/misremember) outcomes
On average, there is a bias towards reporting positive outcomes rather than negative outcomes. IF there are more bad treatments than good treatments, then there is a reporting problem coming from some patients. They may be misreporting outcomes for various reasons.
There are also a few people who have a ‘everything works’ reporting style. Almost everything that they tried was reported as helping.
Implications
My concern is that some patients may be accidentally hurting their recovery by continuing to do treatments that are hurting them.
What I suggest is:
- Try treatments one at a time. Then you’ll get a clearer picture of what that treatment does.
- Slowly increase dosing. e.g. start with a 1/16th dose → 1/4th → normal dose.
- Discontinue treatments that go the wrong way. Do not fall into the trap of detox or Herxheimer reactions.
- ? Avoid potentially risky treatments.
We need to place a big emphasis on safety. The information we get about this condition is far less reliable than initial appearances.
- The scientific literature is unreliable and full of junk (like the rat with the giant balls that got past peer review).
- Recovery stories and support group posts are biased.
- Some patients seem to be misreporting outcomes.
We can easily get into trouble when we act on unreliable information. But if we prioritize safety, then we can be more robust against information being wrong.
I’m not happy that patients can’t simply follow in the footsteps of those who have recovered. But if we want to maximize the chances of recovery, then we have to be smarter about acting on unreliable information.