Janet Dafoe
@janetdafoe.bsky.social
ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist.
Reposted by Janet Dafoe
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
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
Discover how Stanford Medicine is breaking the cycle of chronic diseases with innovative prevention, diagnostic and treatment approaches that empower people to thrive despite their chronic illnesses.
stan.md/46QRjAH
stan.md/46QRjAH
Innovations to help chronically ill people thrive
Stanford Medicine experts are developing innovative approaches to preventing, diagnosing and treating chronic diseases so people can live healthier lives.
stan.md
October 15, 2025 at 3:19 PM
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
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
Reposted by Janet Dafoe
Reposted by Janet Dafoe
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.
They found that these fish swim less and have reduced oxygen consumption.
October 18, 2025 at 8:07 AM
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.
They found that these fish swim less and have reduced oxygen consumption.
Reposted by Janet Dafoe
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
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
Remembering What Real Life Is Like
My Jtube broke finally and I have to go to the hospital tomorrow and I’m feeling stressed...It is so hard seeing the real world and really feeling it and then coming back to my room and closing all th...
www.whitneydafoe.com
August 27, 2025 at 3:29 PM
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
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
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August 21, 2025 at 10:53 PM
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:
See photo below:
August 14, 2025 at 5:30 AM
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:
See photo below:
Reposted by Janet Dafoe
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 🧵
The Manhattan plot below shows the genes and chromosomes involved.
Let’s unpack the results 🧵
August 7, 2025 at 8:05 AM
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 🧵
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.
July 9, 2025 at 2:56 AM
@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.
July 5, 2025 at 2:26 AM
To our European friends: this is what a hamburger looks like, cooked by Ronald Davis! On a very sad Fourth of July.
Reposted by Janet Dafoe
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
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Growing Up With ME/CFS
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 - accepting that I don’t have ...
www.whitneydafoe.com
June 11, 2025 at 5:56 PM
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
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Reposted by Janet Dafoe
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=...
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
Dear Healthy People
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 wo...
www.whitneydafoe.com
June 5, 2025 at 3:20 PM
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=...
Read the whole piece on my blog:
www.whitneydafoe.com/mecfs/?post=...
Reposted by Janet Dafoe
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
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
This Ain't No F*ing Flu
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. I am mentally and physically 1% as alive as I used to ...
www.whitneydafoe.com
May 28, 2025 at 2:38 PM
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
www.whitneydafoe.com/mecfs/?post=...
#MECFS #LongCovid
Reposted by Janet Dafoe
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
Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more.
#MECFSAwarenessMonth
May 22, 2025 at 7:54 PM
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
Oh, but I forgot, I don't want any of that, you're right Simon Wessely I love this, please repress me more.
#MECFSAwarenessMonth
Reposted by Janet Dafoe
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 👊
May 22, 2025 at 9:51 PM
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 👊
Reposted by Janet Dafoe
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=...
#MECFS #MECFSAwarenessDay
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
You can also support me using these services:
https://whitneydafoe.com/mecfs/?post=th…
May 9, 2025 at 8:57 PM
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=...
#MECFS #MECFSAwarenessDay
New post on my blog:
www.whitneydafoe.com/mecfs/?post=...
Reposted by Janet Dafoe
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
May 21, 2025 at 4:33 PM
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
Reposted by Janet Dafoe
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
#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
Invisible Illness - Stories of Chronic Fatigue Syndrome
YouTube video by Palo Alto Online
www.youtube.com
May 11, 2025 at 12:36 PM
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
#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!
May 11, 2025 at 7:33 PM
Happy Mother’s Day! So proud to be the mother of these two amazing beings!
Reposted by Janet Dafoe
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/
@batemanhornecenter.bsky.social
Real-world insights from expert clinicians for improving diagnosis & care!
Reserve a copy: batemanhornecenter.org/clinical-care-guide/
batemanhornecenter.org
May 6, 2025 at 11:50 PM
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/
@batemanhornecenter.bsky.social
Real-world insights from expert clinicians for improving diagnosis & care!
Reserve a copy: batemanhornecenter.org/clinical-care-guide/
Reposted by Janet Dafoe
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
#MECFS #LongCovid
April 7, 2025 at 3:49 PM
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
#MECFS #LongCovid
Reposted by Janet Dafoe
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
Lawsuit aims to broadly overturn NIH’s grant terminations
Multiple groups and NIH-funded scientists challenge agency’s decision as arbitrary and capricious
scim.ag
April 2, 2025 at 9:35 PM
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.
March 21, 2025 at 7:39 PM
Tea party with cobalt china tea set that my Uncle Ralph brought back from Germany in WWII for my mom.