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Here is my update to this saga: I sent my 2-day CPET order to a local hospital, and they talked to the director of pulmonology (or something). He said that I should go to their pulmonlologist (whom I was scheduled to see on Tuesday). This appointment is extremely high-stakes because I don't...

I'm pretty adverse to the idea of getting the invasive CPET. Also, it won't confirm that I have PEM.

Fourth Covid shot scheduled for Dec 1. Since it's on my mind, I'll give my prior experiences. I tolerated the vaccine perfectly and didn't have an unusual negative side effects. 1st shot: No effect on daily life. Had a sore arm and a tiny amount of joint pain. 2nd shot: Made me feel sick for a...

We should screen people with Fibro for PEM before telling them to exercise because comorbid ME is so common.

"Psychosomatic physician" means they only think they're doctors :rofl:

I know nothing about this drug, but I say, try anything!

This reply to Dr. Davenport's thread resonated with me: Text of the image: A great quote from a study from Stanford University by a Chu et al: "Contrary to come sources which have intimated that patients affected by ME/CFS are reluctant to admit the role of psychological or emotional factors in...

It feels like these scientists are trying to stay relevant by posting this. The tone of BPS researchers regarding ME was always overconfident superiority. Now the tone is one of being left out, and trying to get back in. "Why is the world ignoring us?" That's a positive sign.

It's interesting that Indeed, a company with nothing to do with healthcare, seems concerned about the impact of long Covid. It's now recognized as a big enough health problem (in some circles) that we're not just analyzing the illness, we're analyzing the effects on broader society.

My position is that Dr. Pretious's findings likely represent some actual different in the blood chemistry of pwME vs healthy controls, but is likely a non-specific sign and a downstream effect of other problems rather than a main driver of symptoms. Microclots are interesting, but I don't see...

I didn't know that Dr. Shepherd got ME from chickenpox.

I agree. It's very strange that BPS people don't recognize the existence of cognitive PEM. In fact, my cognitive PEM is far more disabling than physical PEM. If PEM was only physical, I'd be in poor health but still be able to live a normal-ish lifestyle, as I can do my job at home at my desk...

If energy metabolism in the brain is disrupted in ME, the brain's need for different fuels depending on task might explain some of our symptoms.

As someone who personally has tics, I'm not sure how to parse this article. Tourette's is diagnosed from signs and symptoms alone, and the frequency and nature of my tics seem to vary both randomly and with my mental state. For example, I don't have tics when I'm completely engrossed in...

Google Translate link: https://www-aerzteblatt-de.translate.goog/nachrichten/138766/ME-CFS-ist-fuer-die-allermeisten-Betroffenen-eine-schwere-und-chronische-Erkrankung?utm_source=dlvr.it&utm_medium=twitter&_x_tr_sl=auto&_x_tr_tl=en&_x_tr_hl=en-US&_x_tr_pto=wapp It's an interview with Dr. Carmen...

This is an incredibly embarrassing title. I showed it to my mom and she basically facepalmed. It's distressing that some people don't even discuss ME the way they discuss all other illnesses. Recovery is not "homecoming," it's not having symptoms or disability anymore. Addendum: Worse, the...

Sorry, I said this is an expression of shock. Unfortunately, this is all very true. I jotted down a few thoughts while watching the video from start to finish. I've seen many discussions of informed consent healthcare for trans people, but she present this issue in an erudite manner and from a...

Is this a joke? I live in America and there are six clinics within an hour of me where people can get HRT with informed consent. I wouldn't even need to see a mental health professional, just agree to it like any other medication.

I don't live with chronic pain, but I imagine that people who do want most research funding to go towards fixing their pain, not dealing with it.

Quite a novel way to look at ME. It's good to look even if nothing is eventually found.