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Frustratingly, the CFS label continues to be used in the US. Many drs here still don’t use or even recognize ME as a diagnosis. Trying to get a diagnosis changed from CFS to ME or ME/CFS can be like climbing Everest. Even my ME/CFS specialist coded my diagnosis as CFS last year even though I...

Interesting quote from Ron Davis in the Medscape article: "It's a potential diagnostic test.... Most of the time, patients hear, 'There's nothing wrong with you.' Our major focus is to say that these patients have something wrong with them," Davis continued. "At this point, whether this tests...

Ditto. It was a real problem since my job was 85% phone calls. I still get a sore throat and swollen glands with PEM flare ups though. In the early stages, when feeling extra poorly (with PEM on PEM, or what I call “rolling PEM”), I used to get a nagging dry cough that lasted for weeks. It...

I used to work as an RN. I am barely in contact with any of my former colleagues, but that is also true for many of my non-workplace friends and acquaintances as well now. I didn’t get the ME/CFS diagnosis until after I had to quit working, but a couple of my colleagues knew what was going on...

My brain is not very sharp right now so apologies that I’m not able to critique the paper specifically. Just wanted to add an anecdote that may illustrate both POTS and chronotropic intolerance (CI) can be present. I had a 2 day CPET that showed “possible” CI and a NASA lean test that met...

“Fiber-starved mice were also meaner and more difficult to handle.” Wonder if this applies to humans, too? If so, can we start sneaking fiber into everyone’s diet for the good of Western society? ;);)

I’ve noticed increased hair shedding in the last year, coinciding with worsening ME. It could be telogen effluvium. In case you don’t want to/can’t read the link, here are some highlights: Telogen effluvium (TE) is probably the second most common form of hair loss dermatologists see. TE...

I get the tiny blisters followed by red/brown speckles on the sides of my fingers, palms, and bottoms of my feet. They always appear as I’m coming out of a crash. After a week or so, the affected areas become slightly scaly and itchy. The first few times the blisters were very tiny so the...

Same for me. Then the LFTs would became elevated again with crashes or relapses. For the last year or so they’ve remained slightly elevated and have been chalked up to presumed NAFLD. @mariovitali thank you for sharing. Will be interested to see what comes of this.

The prescribed form has quite a long list of potential side effects, some very serious such as cardiac and renal issues. Personally, it caused me to gain a lot of unneeded weight and become hypothyroid so I had to stop it. At that point it didn’t seem to be having any positive effects physically...

Glad to hear that you found something that helps. I was prescribed memantine for migraines and had a horrible experience with it. It made me feel disconnected, depersonalized, foggier than usual, and gave me vertigo. I don’t usually have severe reactions to meds so was surprised. I gave it a 6...

@andypants Congratulations!