ME/CFS

Has anyone tried Mestinon (pyridostigmine) for ME/CFS?

Started mestinon based on Stanford ME/CFS research. Four months in — cognitive function noticeably better. Still fatigued but the post-exertional crashes seem slightly less severe.…

Has anyone tried graded exercise therapy (GET) for ME/CFS?

My ME was misdiagnosed as depression for years and I did CBT/GET before the correct diagnosis. Significant deterioration. I share this not to scare anyone but because knowing the r…

Has anyone tried graded exercise therapy (GET) for ME/CFS?

GET caused a relapse that I never fully recovered from. Pushed myself, followed the programme, and crashed hard. I went from mildly affected to severe in 6 months. I know this is t…

Has anyone tried strict heart-rate based pacing for ME/CFS?

Pacing helped prevent the worst crashes but the restrictions are so severe I became more housebound than before. I think it's the right approach for the illness — it's not that it …

Has anyone tried strict heart-rate based pacing for ME/CFS?

HR pacing is the most effective intervention I've found in 6 years of ME/CFS. Keeping below my anaerobic threshold (roughly HR 100 for me) stopped the post-exertional crashes almos…

Has anyone tried Low-Dose Naltrexone (LDN)?

No effect for me after six months at various doses. Disappointing. My immunologist wasn't surprised — she said response rates in ME seem quite variable. Moving on to trying mestino…

Has anyone tried Low-Dose Naltrexone (LDN)?

Three months on LDN for ME/CFS. Honestly can't tell if it's doing much. The first few weeks were rough — more fatigue, more malaise — then it levelled out. I'm at 3mg now. Some day…

What does your PEM feel like — and is there anything that reliably helps shorten a crash once it starts?

How long from first symptoms to ME/CFS diagnosis? What did they think it was before that?

What's your current energy envelope like? What can you do on a typical day without triggering PEM — and how long did it take to figure that out?

Pacing is the most important thing I've learned in 7 years of ME. Not the concept — everyone tells you the concept. The actual practice of it. The heart rate monitoring approach (s…

How I explain post-exertional malaise to people who don't get it

I use this analogy now: imagine you have a phone with a battery that only charges to 30%. If you use 30%, the phone works. If you use 31%, the phone doesn't just run slow — it brea…

Cognitive symptoms are the most isolating part

Brain fog isn't forgetting where you put your keys. It's not being able to finish a sentence. It's reading the same paragraph seven times. It's feeling like you're watching yoursel…

Post exertional malaise explained to my family

I showed my mum this analogy and it finally clicked: imagine your body is a phone that only charges to 40% overnight. Everyone else starts at 100%. You start at 40. And exercise do…