Janet Dafoe @janetdafoe.bsky.social · 11/09/2026Not an OMF symposium. Entirely organized by Ron Favis and Rob Phair. It's the Stanford Working Group on the Molecular Basis of MECFS Community Symposium. 091
Reposted by Janet Dafoevalebodi.bsky.social @valebodi.bsky.social · 15/10/2025Thank 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. 092
Reposted by Janet DafoeDavid Tuller @davetuller1.bsky.social · 05/12/2025Some 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.wsTrial By Error: Some Things I've Read Recently--Aboriginals and Long COVID, Tips for Disability Claims, Profile of Ron Davis | Virology BlogBy David Tuller, DrPH Failure to address Long COVID in Australian Aboriginal communities Croakey Health Media is a small but feisty Australian news outlet t ... 0239
Reposted by Janet Dafoevalebodi.bsky.social @valebodi.bsky.social · 15/10/2025CHIPPING 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 12511
Reposted by Janet Dafoevalebodi.bsky.social @valebodi.bsky.social · 10/10/2025med.stanford.edu/sgtc/researc... #ME/CFS #ItaconateShunt @openmedf.bsky.social @janetdafoe.bsky.socialmed.stanford.eduResearch ProjectsPublications and Patents of Ron W. Davis, Stanford Genome Technology Center 141
Reposted by Janet DafoeME/CFS Science @mecfsscience.org · 18/10/20251) 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. 13310
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 27/08/2025My 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 #LongCovidwhitneydafoe.comRemembering What Real Life Is LikeMy 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... 1447
Janet Dafoe @janetdafoe.bsky.social · 21/08/2025From Ron Davis: m.facebook.com/story.php?st...m.facebook.comLog in or sign up to viewSee posts, photos and more on Facebook. 030
Janet Dafoe @janetdafoe.bsky.social · 14/08/2025Community 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: 23715
Reposted by Janet DafoeME/CFS Science @mecfsscience.org · 07/08/20251) 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 🧵 511738
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. 010
Janet Dafoe @janetdafoe.bsky.social · 05/07/2025To our European friends: this is what a hamburger looks like, cooked by Ronald Davis! On a very sad Fourth of July. 0190
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 11/06/2025I’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 #LongCovidwhitneydafoe.comGrowing Up With ME/CFSI’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 ... 2273
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 05/06/2025I 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.comDear Healthy PeopleI 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... 1279
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 28/05/2025I'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 #LongCovidwhitneydafoe.comThis Ain't No F*ing FluI'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 ... 27121
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 22/05/2025There 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 1477
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 22/05/2025I’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 👊 1224
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 09/05/2025This 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.comYou can also support me using these services: 1298
Reposted by Janet DafoeSomething Chronic @somethingchronic.bsky.social · 21/05/2025Will ‘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 2388
Reposted by Janet DafoeIrish ME/CFS Association @irishmecfsassoc.bsky.social · 11/05/202511/ #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.socialyoutube.comInvisible Illness - Stories of Chronic Fatigue SyndromeYouTube video by Palo Alto Online 11510
Janet Dafoe @janetdafoe.bsky.social · 11/05/2025Happy Mother’s Day! So proud to be the mother of these two amazing beings! 2270
Reposted by Janet DafoeElly Brosius, MS @ellybrosius.bsky.social · 07/05/2025New! 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 2125
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 07/04/2025Sometimes 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 4566
Reposted by Janet DafoeScience Magazine @science.org · 02/04/2025Breaking 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/3DZnylLscim.agLawsuit aims to broadly overturn NIH’s grant terminationsMultiple groups and NIH-funded scientists challenge agency’s decision as arbitrary and capricious 332918814
Janet Dafoe @janetdafoe.bsky.social · 21/03/2025Tea party with cobalt china tea set that my Uncle Ralph brought back from Germany in WWII for my mom. 2140
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 10/03/2025For more info see my new blog post: www.whitneydafoe.com/mecfs/?post=...whitneydafoe.comMy 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... 1193
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 10/03/2025I 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 15918
Janet Dafoe @janetdafoe.bsky.social · 08/03/2025Ron Davis spoke at this demonstration to support science in Palo Alto today. 28213
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.comNIH reels with fear, uncertainty about future of scientific researchThe Trump administration’s orders have created more turmoil and damage at the National Institutes of Health than was previously known. 073
Reposted by Janet DafoeWhitney 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. ❤️❤️❤️🙏] 0173
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 04/03/2025Memories 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 #LongCovidwhitneydafoe.comThe Forever Night Of ME/CFSMemories 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… 75618
Janet Dafoe @janetdafoe.bsky.social · 03/03/2025STAND 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 0242
Reposted by Janet DafoeMaike Osborne @maosbot.bsky.social · 27/02/2025What a grim but important read 0144
Reposted by Janet DafoeMads @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.’ 1145
Janet Dafoe @janetdafoe.bsky.social · 26/02/2025Great article by the great Hillary Johnson on the history of MECFS in the UK substack.com/@hillaryjohn...substack.comHillary Johnson on SubstackMy 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... 14016
Janet Dafoe @janetdafoe.bsky.social · 26/02/2025Whitney & 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. 0242
Janet Dafoe @janetdafoe.bsky.social · 24/02/2025On 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. 3421
Janet Dafoe @janetdafoe.bsky.social · 22/02/2025Graduate student admissions paused and cut back as universities react to Trump orders on research www.statnews.com/2025/02/19/t...statnews.comGraduate student admissions paused and cut back as universities react to Trump orders on researchIn response to Trump science policies, universities are accepting fewer graduate students than normal and freezing positions, STAT has learned. 0130
Janet Dafoe @janetdafoe.bsky.social · 22/02/2025It’s all grants at the NIH. They’ve done a sneaky thing to prevent them from being funded which is to prevent them from posting Council meeting dates in the national register which is required before the council can meet and decide which grants to fund. So no grants can be funded. 1174
Janet Dafoe @janetdafoe.bsky.social · 22/02/2025It’s all grants at the NIH. They’ve done a sneaky thing to prevent them from being funded which is to prevent them from posting Council meeting dates in the national register which is required before the council can meet and decide which grants to fund. So no grants can be funded. 111
Janet Dafoe @janetdafoe.bsky.social · 22/02/2025Disastrous! www.nytimes.com/2025/02/21/s...nytimes.comTrump Administration Stalls Scientific Research Despite Court RulingUsing an arcane law, officials have effectively delayed funding from the National Institutes of Health, leaving medical studies in jeopardy. 3253
Reposted by Janet DafoeWhitney Dafoe @whitneydafoe.bsky.social · 17/02/2025I 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.comI 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 ... 3824238
Reposted by Janet DafoeB Rob @alpineopen.bsky.social · 16/02/2025Handy for #MECFS and #LongCovid sufferers 082