Thank you @racheltompa.bsky.social for this excellent article on #ME/CFS and the efforts of Prof. Davis and colleagues to understand the root causes of this awfully disabling and common systemic chronic disease.
And thank you to @stanfordmedicine.bsky.social’s magazine for publishing it.
Some things I've read recently: Australian aboriginals and Long COVID, Medscape on LC and ME/CFS disability claims, Stanford Medicine magazine profile of Ron Davis @croakeynews.bsky.social @melissasweetdr.bsky.social @janetdafoe.bsky.social
virology.ws/2025/12/05/t...
CHIPPING AWAY AT THE MYSTERIES OF #ME/CFS
Renowned geneticist has spent the past 12 years focused on the disease that has taken so much from his son
By Rachel Tompa
In @stanfordmedicine.bsky.social
@whitneydafoe.bsky.social
@janetdafoe.bsky.social
med.stanford.edu/sgtc/researc...
#ME/CFS #ItaconateShunt
@openmedf.bsky.social @janetdafoe.bsky.social
1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish.
They found that these fish swim less and have reduced oxygen consumption.
My Jtube broke and I have to go to the hospital and I’m feeling stressed...
It is so hard seeing the real world and feeling it and then coming back to my room and closing all the doors...
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Yes
Community Symposium on the Molecular Basis of ME/CFS returns Sept 5 on zoom! 8am-1pm PST Attendance limited to 5,000. Registration required and can’t be shared. Registration link: stanford.zoom.us/webinar/regist…
See photo below:
1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome.
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
@lawrenceodonnell.msnbc.com I love your show and I agree with your points but really, you’re kind of ranting for 27 minutes about the White House press corp.
To our European friends: this is what a hamburger looks like, cooked by Ronald Davis! On a very sad Fourth of July.
I’ve done most of my "growing up" here in bed. And lately I’ve realized that "growing up" hasn’t been about figuring out the whole universe, but a process of acceptance of myself not “knowing it all”…
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
I feel like I am in a position where I have to be against the whole world because the whole world is against me…But I don't enjoy that, I didn't choose that. I was put in this position. I love this world.
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
I'm sick of ME/CFS being compared to a never-ending flu. This ain’t no f*ing flu. I feel like every system in my body is broken and in pieces…But even if you have a very severe flu and are bed bound, the never-ending part is a huge deal…
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
There is so much in me begging to get out! I want to work, sweat, toil and exhaust myself working towards dreams and goals and see them become real in front of me!
Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more.
#MECFSAwarenessMonth
I’d love to compare my to do list with Simon Wessely’s. Bring it! 🔥 I mean if Simon insists on reducing people to this kind of “quantified desire for life” theory then how about we see how an ME/CFS patient compares to Simon on his own BS terms. Direct challenge 👊
This is ME/CFS. Unrelenting. Unforgiving. Never ending. You fight and fight for crumbs of life that most muggles throw away. Crumbs that are not even good enough for the dogs.
#MECFS #MECFSAwarenessDay
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
Picture of bare legs with socks just visible. The legs have significant muscle atrophy due to severe ME/CFS.
Will ‘reframing my beliefs’ cure the muscle atrophy that #severeME has caused? Will it help me get downstairs in my home again after 2 years? Will it help Karen Gordon & @whitneydafoe.bsky.social? Why ignore 1000s of studies with irrefutable evidence #MECFS is physiological? @tessamunt.bsky.social
11/
#May12 is #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome Day
&
May is #MECFSawarenessmonth
Please help by reposting and/or liking this 12-minute documentary
which features Whitney Dafoe & others
www.youtube.com/watch?v=9_Hw...
Day11
#PwME #SevereME
#mecfs @janetdafoe.bsky.social
Happy Mother’s Day! So proud to be the mother of these two amazing beings!
New! Clinical Care Guide for #MECFS, Long COVID, & IACCs—a practical, evidence-based guide for healthcare providers drops May 9 by
@batemanhornecenter.bsky.social
Real-world insights from expert clinicians for improving diagnosis & care!
Reserve a copy: batemanhornecenter.org/clinical-care-guide/
Happy Easter! 🐇
Happy Easter week!
Sometimes I feel like a broken machine that I wake up to everyday and just keep desperately trying to make work. I'm tired of trying to make myself work and I'm tired of feeling broken. I want to live in some other dimension where I shine like a being of light.
#MECFS #LongCovid
Breaking news: A new lawsuit seeks to challenge the National Institutes of Health’s decisions to abruptly terminate hundreds of grants, totaling more than $2.4 billion, over the past month. scim.ag/3DZnylL
Tea party with cobalt china tea set that my Uncle Ralph brought back from Germany in WWII for my mom.
I want to announce my new Print Store!
www.whitneydafoe.com/store
I have been working on putting this store together for 2 years now…The images were all taken before I became severe with ME/CFS in 2013…So it is a sort of parallel dimension time capsule of what could have been with my life
