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

From Ron Davis: m.facebook.com/story.php?st...

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=...

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.

For more info see my new blog post: www.whitneydafoe.com/mecfs/?post=...

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

Ron Davis spoke at this demonstration to support science in Palo Alto today.

@maddow.msnbc.com Are you aware of the devastation that’s happening to American science? www.washingtonpost.com/science/2025...

[Note that I didn’t crash just now, this is something I wrote about how it feels to crash with 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… New post on my blog: www.whitneydafoe.com/mecfs/?post=... #MECFS #LongCovid

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

What a grim but important read

‘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.’

Great article by the great Hillary Johnson on the history of MECFS in the UK substack.com/@hillaryjohn...

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.

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.

Graduate student admissions paused and cut back as universities react to Trump orders on research www.statnews.com/2025/02/19/t...

Disastrous! www.nytimes.com/2025/02/21/s...

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=...

Handy for #MECFS and #LongCovid sufferers

Horsey, run!

Happy Valentine’s Day!

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=...

3/ Ron Davis is one of the co-authors of this study @janetdafoe.bsky.social

2/ "Most Troubling Symptoms" From: "Patient-Reported Treatment Outcomes in ME/CFS and Long COVID" www.medrxiv.org/content/10.1... #MEcfs #LongCovid

(Repeat) Most Troubling Symptoms in ME/CFS and Long COVID Patients. The bar graph shows the frequency of symptoms reported by patients with ME/CFS (blue) & #LongCOVID (red) From: "Patient-Reported Treatment Outcomes in ME/CFS and Long COVID" www.medrxiv.org/content/10.1... #MEcfs

I’m sorry, I have to rest. I’m exhausted from taking all the things and doing all the things that are supposed to make it so I don’t have to rest. #MECFS #LongCovid

I can’t wait for this cookbook! I’ve been talking with Rachel all along the way and I know the recipes are going to be so amazing. I just pre-ordered two copies so I can give one to my daughter. It would help Rachel if you pre-ordered a copy. www.healthrising.org/blog/2025/01...

🌟 Struggling with unexplained symptoms after a recent infection or never fully recovered from COVID-19? ✅ Watch the 3rd video in our BASICS series with Clayton Powers, DPT, titled "The BASICS: Diagnosing ME/CFS", and gain insight into this often-misunderstood disease. 🔗 Watch here: bit.ly/4jb1ww8