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I'm writing on behalf of a friend of mine--an ME patient--who is at risk of starving to death because he is too sick to properly digest food. His BMI is currently 18.5 (that's very low) and the public healthcare system where he is has refused to give him a feeding tube. He's now looking to...

@Sue any updates? Curious what your experience is 1 year out.

I'm been reading Shoemaker and doing bits of his protocol lately, with some (limited) success. One aspect of his theory I've been curious about is his assertion that HLA types can play a role in treatment efficacy if not disease severity. Having believed Amy Yasko back in the day I'm more...

ME stuff is some of the only stuff I share on FB--precisely because it does reach people. But I'm definitely concerned with what they might do with that information. I want to have control over medical information (and, actually, all other information I share on FB). In my opinion facebook...

Fixed the link! I should say I don't know much more than what I read in this article. They talk about one family of viruses that infects bacteria and alters their activity. It sounds like at least some of these viruses might not be bacteriophages because they don't mention these viruses...

In Summary: They're already looking at viruses in feces to see if healthy people have different viral, ah, "loads" than people with cirrhosis of the liver. Scientists wonder if viruses, either by infecting our bodies or our microbiomes, might contribute to IBD or (ME/)CFS. Read more here.

I know, and going to the hospital was pretty much her last choice because of this and of course the noise concerns (she has noise-canceling headphones and silicone earplugs. but she is so sick that they don't help enough). At the same time the squeaky wheel gets the grease, and I want to do all...

Right, but most people can get back to sleep or at least get fitful sleep if they are woken up in the middle of their sleep cycle--that's not the case for some of us like my friend. And the consequences of getting bad sleep--particularly repeated bad sleep--are much more severe for us than they...

And for anyone who is interested, here is her facebook post explaining how she uses resting HR to track her crashes.

A good friend of mine has been hospitalized and could really use some help communicating to the staff 1. That it is not ok for janitors to enter her room to clean the floors or empty waste bins during her normal sleeping hours of 2 am - 10 am and 2. That she needs assistance eating and getting...