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I had my name + code in the open source software running Whitehouse.gov + countless other major websites 15 years ago. I co-led #Drupal’s Documentation team, mentored others, organised conferences. Now I’m gaslit, medically abandoned, + approved for #MAID. Nobody cares.

Doctors: stop Googling stuff, Google is the worst! Also doctors: Googles my condition right in front of me

Another day, another sanctimonious demonstration that PG has absolutely lost it and should not be presenting anywhere, let alone on a disease he understands absolutely *nothing* about. Definitely the type to take a military-fitness class and then say he was in the army.

Is there ever a good reason to use the word "masticate" instead of just saying "chew"? Welcome to my new Twitter account "deep thoughts with Whitney at 5am" 😂

Whitney Dafoe Simon Wessely Happy to take part if you need a second patient for comparison. And I say this not to be a bully, but to confront the issue like adults, or, ideally, scientists. Over 2.5 years, I went from mild to very severe ME/CFS. I pushed myself relentlessly running a business, chasing

Whitney Dafoe How true. Was thinking the other day we don't really feel 'fatigue' because that feeling is a good one - a reward for effort & a restful peace of recovery of a healthy body. A virtuous circle of work/rest/recover, when our bodies have a vicious circle of effort/damage/worsening.

I wish we got a dollar for research every time one of us said "f*ck this illness". We'd all be cured in no time 😂

I see Tobias trying to self fund SCIG in Germany, cha doing the same for Plex in France. Then you have Katiana. in Greece, and me and so many others in Canada, Australia, the UK, etc. being totally refused treatment and unable to self pay where we live. Immune

Please help Isa out with medical costs and daily expenses 💜

It's my birthday week, and I’m asking for a small favor. If you can spare the cost of a coffee, please consider helping a cause close to my heart. Ror was dealt the unfair hand of MECFS. Every bit helps bring change. #mecfs Please share! gofund.me/aedb490c

Another young #ME sufferer has died, almost certainly from starvation. I’m so terribly sorry. Sad and angry. It’s as though the whole medical profession have been given a gag order to not disclose what they are seeing more and more often now. They must speak up to save lives.

People without legs need to re-think the idea that they have no legs because sitting makes their legs even less absent from their bodies. We have to make them realize they in fact do have legs and make them get up and walk even if it means they die in bed because they in fact

My health improves, I start putting a tiny weeny little life together, as soon as things start coming together or I start building something, my health collapses (not due to me doing to much, just ups and downs of ME/CFS) and it all falls apart again to nothing. Rinse, repeat.

I'm sick of #MECFS 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 be…But even if you have a very severe flu and are bed bound, the *never-ending*

Yesterday was one of those in between days where you aren't numb like a living corpse, you can think enough to have sparks of ideas, but you can feel that if you act on them you will quickly decsend back into hell so you must accept "enjoying" the "view" of your own mind &waiting

Ronald W. Davis, PhD...the Captain of My Dreams-Come-True Team at Open Medicine Foundation...aka The Master Puzzle-Solver...aka Superman to son, Whitney Dafoe, and the rest of the #MECFS and #LongCovid patient communities. Dr. Janet Dafoe is his wife, sidekick, and our lifeline to hope. 🙏🧩💙

Blistering headache on a Friday night with my parents out of town.  Laying in bed with clean feet and socks with warm dry air from my Bed Jet flowing up my naked body under cozy blankets. Very slow jazz playing in my ears with iem's I made. This is chronic bliss. 😍😝🤪 Links ⬇️

Perspective #1: I’m so sick of taking all these damn pills all day. Perspective #2: Thank God I can simply take pills now to get meds and supplements into my body. It’s so easy, I simply swallow the pills. I’m so grateful for pills and for these unexpected and unexplained