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Sounds like an interesting read I’m looking forward to what people share. In the meantime, as far as I’m aware, there’s not a universal solution it depends on what you want to look at. Whole Genome Sequencing, eQTL for epigenetics etc.

As a very severe person. Increase of symptoms during PEM happens during the first weeks, while loss of function lasts for months. The loss of function is not due to the increase in symptoms, but due to the threshold for triggering more PEM being lowered [Ie. I can do less without triggering more...

The forum consensus seems to be to define PEM as a worsening of symptoms and function.

Some of these are factually dodgy unfortunately. And I’m getting really tired of describing PEM as only a worsening of symptoms.

I unfortunately dont have the money to donate this time around. Actually I did have 5$ equivalent laying around but apparently Berkeley doesn't take donations under 10 USD. Just wondering, what happens if the goal isn't met? Hopefully we see a last minute increase though.

I definitely relate with what you say about Hashimoto’s though because my mum has it

Do you really think there’s a chance something useful could be found? Because it’s definitely not like we all had the same illness. I’m severe Me/cfs, my mum something that looks like mild me/cfs plus hashimoto’s, my grandma Ankylosing spondylitis and disabling migraines, and great grandma I...

What’s striking in my case is of my direct “ancestors”, (people who contributed genetically to me), its only the women who had autoimmune/autoinflammatory/(ME/CFS, Migraine like illnesses). Literally only the women. It’s my mum’s family. My mum’s mum’s family, and my mum’s mum’s mum’s family...

The idea of a genetic link really does resonate with me though. My mum has an ME/CFS like chronic illness that looks similar to mine when I was really mild (she gets a migraine and has to lay in bed for days after she does too much) although she was diagnosed with hEDS (after lots of...

unfortunately might not tell us much (via environment vs genetics) because pwME may be far more likely to date other pwME.

I think I spent an hour snd a half tryong to understand the frist two pages and gave up when ghe thread balloon to loads of pages. But does sound rather interesting. And I did learn a little about cell metabolism, ROS, interferon, and itaconate. Very mucj appreciate @Hutan 's summary thanks yo...

Ive found its quite variable. I've had periods wjere I was worst in the mornings and would gradually get bettter during the day, now I'm the opposite where I wake up at my best and gradually decline during the day (on an average day) And I've also had periods where I've been fairly stable day...

I get more "agitated" (wired) and confused / mind racing in the evenings after I've overexerted. But i would say it's probably quite distinct from sundowning in practice, even though the descriptions sound somewhat similar. According to a definition I read it includes yelling and pacing around...

It’s the model. Societal failure can never be acknowledged. Self improvement, individual action, therapy is the answer. We must teach people to cope with our society, not make a society designed to you know… meet people’s basic needs. It’s the same reason the rehabilitation model is so popular...

The technique my family does in summer is windows open at night. Closed during the day. Blinds shut when sun hits so we don’t become a super heated greenhouse.

Anyone have suggestions when sound is an issue. I can’t have AC or fans due to noise. Definitely looking into @jnmaciuch ’s suggestion (Thanks :))

they don’t even need to misremember or confuse it. If my doctor diagnoses me with migraines and a survey asks me if I’ve been diagnosed with “Migraine syndrome”, the reflex of pretty much anyone who isn’t super informed or pedantic will be to say yes. I mean you’ll just assume their the same...

I guess they want citations for the strong claims in their abstract, not have people look through the data and debunk their work.

Also lack of access. Since I became very severe and can’t leave my bed, I interact less with the medical system than I did before I got ill, paradoxically. (To be fair I had a knack for getting injured before I got ill ahah. Broke my foot and destroyed my knee in the 6 months before I got ME...

For explaining ME/CFS to friends and family, I find the following combo far more effective than an “official” “neutral” description (Like the Wikipedia or CDC page): https://www.whitneydafoe.com/mecfs/whatismecfs/ for how horrible it is to live with me/cfs And George Monbiot’s article...