u/Liface

▲ 175 r/VaxRecoveryGroup+1 crossposts

Excited to present our results from the first-ever patient survey on GLP-1s for Long COVID!

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!

lcmedata.org
u/Liface — 6 days ago

I like to buy bagels a dozen at a time, sliced, pop them in the freezer, and eat a bagel half with cream cheese each morning.

I've been doing this with my go-to, Tompkins Square Bagels, but would like to perhaps expand to diversify my taste (I'm in LES).

Any recommendations? I'm not sure if some shops make bagels that would freeze better than others. I love Pop Up Bagels, for example, but they're meant to be eaten fresh.

reddit.com
u/Liface — 20 days ago
▲ 10 r/cfs

LC/ME Treatment Experience Surveys are run by a group of patients who were fed up with taking experimental treatments without having adequate community data.

Starting with GLP-1s, we're running focused surveys on one treatment at a time, collecting only the most useful information on subtype, dosing, effect duration, and patient differences, and short enough so that even the most severe patients can answer in five minutes on a smartphone.

We then publish the results within weeks, giving the community the information it needs to safely evaluate the treatment.

Our survey is open for just two more days. Help us get as many anecdotes as possible to improve the quality of our data!

u/Liface — 21 days ago