u/glennchan

I finished the data analysis! thank you to the 1456 or so of you who contributed your data! 🤩 

We posted here last month announcing the Treatment Experiences Survey project, a patient-led project that aims to provide the community with critical data about experimental treatments that still don't have clinical evidence.

Many of you formed the 120-respondent pool for our first survey on GLP-1s, and we're excited to announce the results!

The response to these drugs, as expected, was extreme - while a promising 53% reported improvement, 28% worsened, some remaining below their baseline long after their last dose.

Other findings:

(note here that most subgroup analyses were not statistically significant due to small sample sizes, so please take these with a grain of salt)

• GLP-1s take effect fast. Responders noticed improvement within days, some on the first day! On the other hand, patients who felt nothing by 4–6 weeks almost universally ended up as non-responders.
• POTS/dysautonomia patients fared worse than average. This is consistent with GLP-1s known effects on the autonomic nervous system.
• Tirzepatide had a higher proportion of "very much improved" patients. Possibly consistent with the stronger anti-inflammatory effects of dual GIP/GLP-1 agonism.
• Brain fog was the most commonly improved symptom (44%), followed by fatigue (37%) and exercise tolerance (27%).
• Severe (bedbound) patients had the worst results: only 35% improved while 40% worsened, nearly double the overall worsening rate.
• Insomnia in the first few days was an early warning sign for patients who eventually worsened.

Full results, charts, and the anonymized dataset are all at the link above.

Happy to answer questions below, and we're also looking for suggestions on the next treatment to survey!