Janet Dafoe

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...

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...

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.

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 ...

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

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...

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=...

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 ...

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 👊

You can also support me using these services:

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

YouTube video by Palo Alto Online Invisible Illness - Stories of Chronic Fatigue Syndrome

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

Lawsuit aims to broadly overturn NIH’s grant terminations Multiple groups and NIH-funded scientists challenge agency’s decision as arbitrary and capricious

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.

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...

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.

@lawrenceodonnell.msnbc.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.

@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. ❤️❤️❤️🙏]

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…

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