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The strong alcohol intolerance symptom isn’t consistently present over time. I had very strong and sudden alcohol intolerance after getting ME, and it remained that way for about 2 years. Immediate vomiting, nausea, strong hangover after drinking just a fraction of a glass of wine. But then it...

There’s a major problem with this approach since many (or most) PwME have comorbidities or other diseases which are autoimmune and/or inflammatory. I also have psoriasis for example, which might significantly contribute to reduced erythrocyte deformability. While they wouldn’t necessarily have...

Thank you for pointing this figure out.

@wigglethemouse have Davis and co said what other chronic inflammatory illnesses they will test for deformability? To test if this is specific to ME/CFS or simply a sign of many chronic inflammatory illnesses? I think others have also expressed concern about the test's potential lack of...

Didn’t one of the main figures in the paper show significant overlap between ME and HC? Everytime there’s a biomarker paper out it always turns out that there is just too much overlap to be useful and biomarker is more or less pointless beyond adding to the research knowledgebase on ME. I think...

Sorry about that, I’ve been in a crash for two days now and one symptom that always gets worse with PEM and much worse during a crash is the ability to read, understand, and interpret text. Writing also takes me much, much longer and I cannot seem to get grammar right. I’m just so tired of my...

For mine I believe they used the word non-specific or unspecified because the white matter hyperintensities are in a number of different areas, so couldnt attribute the pattern and locations to those of known diseases such as MS.

Sorry @Milo if the wording of my post appeared as if I was normalizing these symptoms, that wasn’t what I meant or intended. It’s just my theory based on analysis of my own symptoms, which are definitely not normal. I was trying to describe that during human (and probably all bilateral...

I have them too. I forget the exact terminology on the radiologist’s MRI report, something like “unspecified white matter hyperintensities”

@Hell..hath..no..fury... @Snowdrop @Arnie Pye here’s the evidence Cumulative Use of Strong Anticholinergics and Incident Dementia A Prospective Cohort Study https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/2091745

Sorry @Hell..hath..no..fury... i accidentally gave you medical advice which I shouldn’t have. I’m in the middle of a crash and forgot about that important rule!

I believe ME clinicians should stop prescribing doxylamine. Diphenhydramine (in many OTC sleep or “nighttime” meds) is also powerful anticholinergic. Hydroxyzine is an antihistamine and sleep medication in the same class and has no anticholinergic properties. It’s also generic and very cheap.

Hi @JaimeS - I’ve had some left-sided weakness due to ME. In my first year after onset, when I was still trying to overcome the disease by ignoring it and exercising, my left leg would sometimes give out completely when jogging on the treadmill or when walking after exercising. Still to this...

Anticholinergic medications, when taken for long periods of time, have been shown to seriously increase your risk of getting dementia, Alzheimer’s, etc. Doxylamine is a powerful anticholinergic.

My insurance plans through my employer had always paid for it without any issues. I started taking it when it was still only brand name and Dr. Levine only had to do a simple prior authorization. When it went generic (which it has been for some time now) insurance didn’t even ask for a prior auth.

Hi @Milo, no there are really not. Valganciclovir a prodrug for ganciclovir and gets rapidly converted by esterases in your liver to ganciclovir. Many drugs are like this, primarily to make a drug that has better bioavailability. See on Wikipedia https://en.wikipedia.org/wiki/Valganciclovir...

I took Valcyte for 2 1/2 years. I had suspected infectious onset based on initial fever and symptoms, as well as chronically very high EBV, CMV, HHV-6 antibody titers. Valcyte didn’t have any effect on my ME, though I was working full-time and push-crashing all the time. Valcyte also had this...

One note to add to this interesting paper, is that while they've known that serum NfL isn't a very specific biomarker for Alzheimer's or other neurodegenerative diseases including inflammatory and autoimmune ones, it is a good marker of brain damage occurring due to the disease process. Would...

Thanks @Trish! Everyone a new related poll is up https://www.s4me.info/threads/does-your-me-cause-problems-with-falling-asleep-at-night-at-a-normal-time-without-sleep-meds.7878/

A note for those who use sleep medication to help combat ME sleep issues - this might be more difficult to answer since the body becomes somewhat dependent on medication when taken chronically. If you could try to answer based on your time with ME before you ever took sleep meds or, if that is...