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Janet Dafoe

@janetdafoe.bsky.social
4.2K followers 84 following 53 posts

ME/CFS patient advocate and caregiver. Mom to Whitney. Spouse of Ron Davis. Child Psychologist.

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Reposted by Janet Dafoe
valebodi.bsky.social @valebodi.bsky.social · 15/10/2025
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.
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David Tuller @davetuller1.bsky.social · 05/12/2025
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...
virology.ws
Trial By Error: Some Things I've Read Recently--Aboriginals and Long COVID, Tips for Disability Claims, Profile of Ron Davis | Virology Blog
By David Tuller, DrPH Failure to address Long COVID in Australian Aboriginal communities Croakey Health Media is a small but feisty Australian news outlet t ...
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valebodi.bsky.social @valebodi.bsky.social · 15/10/2025
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
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valebodi.bsky.social @valebodi.bsky.social · 10/10/2025
med.stanford.edu/sgtc/researc... #ME/CFS #ItaconateShunt @openmedf.bsky.social @janetdafoe.bsky.social
med.stanford.edu
Research Projects
Publications and Patents of Ron W. Davis, Stanford Genome Technology Center
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ME/CFS Science @mecfsscience.org · 18/10/2025
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.
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Whitney Dafoe @whitneydafoe.bsky.social · 27/08/2025
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
whitneydafoe.com
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...
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Janet Dafoe @janetdafoe.bsky.social · 21/08/2025
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Janet Dafoe @janetdafoe.bsky.social · 21/08/2025
From Ron Davis: m.facebook.com/story.php?st...
m.facebook.com
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See posts, photos and more on Facebook.
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Janet Dafoe @janetdafoe.bsky.social · 14/08/2025
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:
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ME/CFS Science @mecfsscience.org · 07/08/2025
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 🧵
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Janet Dafoe @janetdafoe.bsky.social · 09/07/2025
@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.
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Janet Dafoe @janetdafoe.bsky.social · 05/07/2025
To our European friends: this is what a hamburger looks like, cooked by Ronald Davis! On a very sad Fourth of July.
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Whitney Dafoe @whitneydafoe.bsky.social · 11/06/2025
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
whitneydafoe.com
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 ...
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Whitney Dafoe @whitneydafoe.bsky.social · 05/06/2025
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=...
whitneydafoe.com
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...
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Whitney Dafoe @whitneydafoe.bsky.social · 28/05/2025
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
whitneydafoe.com
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 ...
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Whitney Dafoe @whitneydafoe.bsky.social · 22/05/2025
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
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Whitney Dafoe @whitneydafoe.bsky.social · 22/05/2025
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 👊
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Whitney Dafoe @whitneydafoe.bsky.social · 09/05/2025
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=...
whitneydafoe.com
You can also support me using these services:
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Something Chronic @somethingchronic.bsky.social · 21/05/2025
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
Picture of bare legs with socks just visible. The legs have significant muscle atrophy due to severe ME/CFS.
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Irish ME/CFS Association @irishmecfsassoc.bsky.social · 11/05/2025
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
youtube.com
Invisible Illness - Stories of Chronic Fatigue Syndrome
YouTube video by Palo Alto Online
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Janet Dafoe @janetdafoe.bsky.social · 11/05/2025
Happy Mother’s Day! So proud to be the mother of these two amazing beings!
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Elly Brosius, MS @ellybrosius.bsky.social · 07/05/2025
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.org
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Janet Dafoe @janetdafoe.bsky.social · 21/04/2025
Happy Easter! 🐇
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Janet Dafoe @janetdafoe.bsky.social · 17/04/2025
Happy Easter week!
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Reposted by Janet Dafoe
Whitney Dafoe @whitneydafoe.bsky.social · 07/04/2025
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
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Science Magazine @science.org · 02/04/2025
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
scim.ag
Lawsuit aims to broadly overturn NIH’s grant terminations
Multiple groups and NIH-funded scientists challenge agency’s decision as arbitrary and capricious
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Janet Dafoe @janetdafoe.bsky.social · 21/03/2025
Tea party with cobalt china tea set that my Uncle Ralph brought back from Germany in WWII for my mom.
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Whitney Dafoe @whitneydafoe.bsky.social · 10/03/2025
For more info see my new blog post: www.whitneydafoe.com/mecfs/?post=...
whitneydafoe.com
My New Print Store!
I want to announce my new Print 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 paral...
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Reposted by Janet Dafoe
Whitney Dafoe @whitneydafoe.bsky.social · 10/03/2025
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
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Janet Dafoe @janetdafoe.bsky.social · 08/03/2025
Ron Davis spoke at this demonstration to support science in Palo Alto today.
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Janet Dafoe @janetdafoe.bsky.social · 07/03/2025
@lawrenceodonnell.msnbc.com
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Janet Dafoe @janetdafoe.bsky.social · 06/03/2025
@maddow.msnbc.com Are you aware of the devastation that’s happening to American science? www.washingtonpost.com/science/2025...
washingtonpost.com
NIH reels with fear, uncertainty about future of scientific research
The Trump administration’s orders have created more turmoil and damage at the National Institutes of Health than was previously known.
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Whitney Dafoe @whitneydafoe.bsky.social · 04/03/2025
[Note that I didn’t crash just now, this is something I wrote about how it feels to crash with ME/CFS. ❤️❤️❤️🙏]
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Whitney Dafoe @whitneydafoe.bsky.social · 04/03/2025
Memories tearing like tissue paper, Of all the dreams, I thought might be made real, Tearing into pieces so small, They float away, Into the forever night of ME/CFS… New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid
whitneydafoe.com
The Forever Night Of ME/CFS
Memories tearing like tissue paper, Of all the dreams, I thought might be made real, Tearing into pieces so small, They float away, Into the forever night of ME/CFS…
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Janet Dafoe @janetdafoe.bsky.social · 03/03/2025
STAND We're standing up UP for science— because FOR science is for EVERYONE! SC ENCE March 7th 12:00 - 2:00 PM Lytton Plaza, Palo Alto, CA Not officially affiliated with national AAAS rallies
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Reposted by Janet Dafoe
Maike Osborne @maosbot.bsky.social · 27/02/2025
What a grim but important read
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Mads @blueforpwme.bsky.social · 26/02/2025
‘The influential Wessely managed to spin his intellectually vapid ideas into a knighthood for himself. Indeed, he seemed to be the glue that both inspired and held together all the factions of the UK’s conspiracy to disappear the potentially costly disaster of ME.’
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Janet Dafoe @janetdafoe.bsky.social · 26/02/2025
Great article by the great Hillary Johnson on the history of MECFS in the UK substack.com/@hillaryjohn...
substack.com
Hillary Johnson on Substack
My new piece: What is equivalent to the purchase price of a house in London? It’s the annual investment by the UK government in myalgic encephalomyelitis, a disease afflicting perhaps half a million o...
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Janet Dafoe @janetdafoe.bsky.social · 26/02/2025
Whitney & many of you rely on Medicaid. Congress is voting now to resolve to cut it by over a billion so they can reduce taxes on the rich. Call your congressperson NOW to object! Medicaid hotline: (866) 426-2631 You enter your zipcode. It connects to YOUR rep.
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Janet Dafoe @janetdafoe.bsky.social · 24/02/2025
On this 50th anniversary of the Asilomar Conference on Recombinant DNA, here is Ron Davis presenting on how do you prevent the cloned pieces of DNA that were inserted into the host from escaping into the environment using biological containment.
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Janet Dafoe @janetdafoe.bsky.social · 22/02/2025
Graduate student admissions paused and cut back as universities react to Trump orders on research www.statnews.com/2025/02/19/t...
statnews.com
Graduate student admissions paused and cut back as universities react to Trump orders on research
In response to Trump science policies, universities are accepting fewer graduate students than normal and freezing positions, STAT has learned.
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Janet Dafoe @janetdafoe.bsky.social · 22/02/2025
youtube.com/watch?v=wxSw...
youtube.com
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Janet Dafoe @janetdafoe.bsky.social · 22/02/2025
Disastrous! www.nytimes.com/2025/02/21/s...
nytimes.com
Trump Administration Stalls Scientific Research Despite Court Ruling
Using an arcane law, officials have effectively delayed funding from the National Institutes of Health, leaving medical studies in jeopardy.
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Whitney Dafoe @whitneydafoe.bsky.social · 17/02/2025
I started eating real food again in 2024!…I have now stopped the Peptamen food formula completely, and get all my calories from real food!...And I want to tell you because I want you to hear this story!...what will 2025 bring? #MECFS New post on my blog: www.whitneydafoe.com/mecfs/?post=...
whitneydafoe.com
I Started Eating Food Again in 2024...What Will 2025 Bring?
I started eating real food again in 2024!...I have now stopped the Peptamen food formula completely, and get all my calories from real food!...It has come time that I feel stable enough with this new ...
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B Rob @alpineopen.bsky.social · 16/02/2025
Handy for #MECFS and #LongCovid sufferers
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Janet Dafoe @janetdafoe.bsky.social · 15/02/2025
Horsey, run!
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Janet Dafoe @janetdafoe.bsky.social · 15/02/2025
Happy Valentine’s Day!
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Whitney Dafoe @whitneydafoe.bsky.social · 14/02/2025
Will you take the #2025mecfsValentines Day Challenge and reach out to 2 people you love and tell them you love them and why? You will make their day. And if we all do this, it will have a ripple effect through the entire community. New post on my blog: www.whitneydafoe.com/mecfs/?post=...
whitneydafoe.com
The 2025 ME/CFS Valentine's Day Challenge!
Will you take the 2025 ME/CFS Valentine’s Day Challenge and reach out to 2 people you love and tell them you love them and why? …You will make their day. And if we all do this, it will have a ripple...
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Tom Kindlon @tomkindlon.bsky.social · 10/02/2025
3/ Ron Davis is one of the co-authors of this study @janetdafoe.bsky.social
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Tom Kindlon @tomkindlon.bsky.social · 09/02/2025
2/ "Most Troubling Symptoms" From: "Patient-Reported Treatment Outcomes in ME/CFS and Long COVID" www.medrxiv.org/content/10.1... #MEcfs #LongCovid
Most Troubling Symptoms	ME/CFS	Long COVID
Fatigue or low energy	95.62%	88.28%
Feeling worse after normal exertion (PEM)	89.74%	79.39%
Brain Fog	80.05%	72.33%
Un-refreshing sleep	74.45%	55.28%
Memory problems	54.07%	50.83%
Fast, fluttering or pounding heartbeat	38.49%	47.11%
Feeling of weakness	57.27%	43.61%
Shortness of Breath	31.48%	40.44%
Insomnia	47.29%	40.17%
Headache or Migraine	45.32%	40.06%
Postural Orthostatic Tachycardia (POTS)	41.04%	40.00%
Lightheadedness or dizziness	42.64%	38.50%
Sore/painful muscles	53.69%	34.11%
Chest Pain	17.27%	31.39%
Tinnitus	27.67%	31.11%
Other digestive problems	44.00%	29.06%
Numbness or tingling	25.36%	26.39%
Joint pain or swelling	31.62%	24.44%
Stiff or painful neck	38.45%	24.17%
Cold or discolored hands/feet	28.89%	23.11%
Balance problems or sense of room spinning	26.16%	22.56%
Muscle twitches, spasms, or fasciculations	27.25%	20.39%
External or internal tremors (\vibrations\)	20.71%	20.17%
Nausea and/or Vomiting	25.55%	19.89%
Sore throat, fever or flu-like symptoms	32.94%	19.72%
Shooting, stabbing or burning pain	24.56%	19.06%
Disordered taste / smell	9.04%	15.61%
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