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I also have a new doctor who recommended that I get more exercise and drink caffeine in the afternoon when I get tired. I explained to her about pacing, which she assured me she understood, then said she recommends more exercise anyway. :banghead: So, I think I need to find a different new doctor.

Thank you all and especially @Jonathan Edwards for your thoughtful replies. Sometimes when my symptoms are worse I get desperate and start trawling the internet for anything I might not have tried already. I should know better - any evidence-based treatments will likely be in trials for some...

@Jonathan Edwards - thank you for your thorough response. The treatment ideas are under the heading "ME/CFS Treatment Recommendations." I've attached it. Too bad these particular ones don't seem advisable. As usual, I was hopeful to find something that could help.

Thanks @oldtimer ! I was wondering if stimulants would ultimately be a bad idea. I get revved up and do too much then crash if I even have a cup of coffee. I do wonder if a little finesse with the right dose might be helpful for times when I truly have to do something... although it might not...

Also curious what people's experiences have been with these treatments. Clearly, one would have to work closely with an immunologist to determine and receive the appropriate treatment. But I'm really curious. I get sick All. The. Time. I know that recurrent viral infections wipe me out and have...

Merged thread ----------------------- I recently discovered this resources list in the Bateman Horne Center resources website. https://batemanhornecenter.org/education/me-cfs/ Have any of you tried any of the following? What was your experience? Cognitive impairment and fatigue medications...

It's true that many people w/ME aren't able to do anything beyond the basics, and some need help with the activities of daily living. I'm sorry to hear you're in that boat. Still, I was encouraged to read an article, in such a well known publication, discussing the reality of PEM, and...

Thanks @rvallee !

Sorry about that!

https://www.theatlantic.com/health/archive/2024/01/long-covid-exercise-post-exertional-malaise/677242/

So, this seems like a helpful step. But, are they actually planning on doing more research? Ampligen seems like it may actually help, if I understand correctly. It would be so good to have a treatment available clinically, but that seems very far off.

I agree that having a fuller range of narratives in the media would help people understand just how debilitating, and just how invisible, this illness is! I wonder if the representation of the most severe cases is meant (intentionally or unintentionally) to shake up the public, as in: "See...

:cry::banghead::mad:

Jonathan - is this a regional assessment? In my community, the hospital ICUs are full. No kids under 12 are vaccinated. And in many parts of the world the majority of people haven't had the opportunity to be vaccinated yet. How are you determining this "we" that's reaching herd immunity?