GLP-1s for Long COVID and ME—survey results

Jaybee00

Senior Member (Voting Rights)

  • Polarizing results: 53% improved, 20% no change, 28% worsened
  • Brain fog (44%), fatigue (37%), exercise tolerance (27%) most commonly improved symptoms
  • Top side effects: nausea (30%), constipation (20%), post-dose fatigue (19%)
  • POTS subtypes fared worst: 46% improved, 32% worsened - while GI and MCAS patients both saw 60% improvement
  • Severe patients were the least likely to improve (35% vs 58% for mild) and most likely to worsen (40% vs 25% for mild)
  • Tirzepatide: 3x more “very much improved” outcomes than Semaglutide
  • Most improvements noticed within 1–2 weeks of starting or dose-increasing
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  • Severe patients were the least likely to improve (35% vs 58% for mild) and most likely to worsen (40% vs 25% for mild)

I wonder if this pattern is reproduced in subjective retrospective reporting of other drugs.

Maybe severe people are less likely to be “tricked” into thinking something worked for them because they hit limits much quicker?

Or perhaps high BMI is a pretty big confounder in QOL which can explain the improvement for mild people whilst severe people perhaps the semi “starvation” like state that GLP-1s can create puts stress and leads to pem.
 
It’s helpful to not be hungry.
It’s helpful to have stable blood sugar.
I’d like to see a comparison with pwME living with a personal chef, assistant etc.
My opinion is that the GLP1 benefits (no hunger, no snacking and consequent blood sugar spiking) are closing the “lack of care” gap of the Mild and Moderate types.
 
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