ME specialist appointment: what meds to ask about + key questions?
I’ve finally booked a private online appointment with an ME specialist.
So far, I’ve mostly managed this illness alone. My GP has only referred me to rule out other conditions. I was diagnosed by an internist, but haven’t had any follow-up care.
I’m unsure what to get out of this appointment. I’ve read a lot (including here), and know the basics: pacing is key, no cure.
I'm severe/very severe, have been 100% bedbound for 6 months now. I have POTS and treat it with propanolol.
So I’d really appreciate help with two things:
1. Medications worth asking about
I know about:
- Ivabradine vs propanolol?
- LDN (already tried, no effect)
- LDA (low-dose aripiprazole)
What else is commonly used for symptom relief? A short list would really help.
2. What would you ask?
What questions actually made your specialist appointment useful?
Thanks a lot for your help. I don't have the energy for deep dives (or anything really).
Posted Apr 7, 2026, 11:18 AM UTC