SicCanuck

@JanetDafoe Are you currently on a break? I’m signed into the zoom but there’s nothing happening

@benh_mecfs Hugs 💕 this is a familiar story. It’s so sad and unfair

I have now been bedbound from #MECFS for 9 years, and suffered for 13+ years. Ages 24yrs--37yrs gone like *clicks fingers*. Before/after:

I really want to hold out some hope for accountability on those that have caused *such* devastating harm to #MECFS patients. I think self-accountability will clearly never happen, but perhaps the former might, in some form. Incalculable devastation from a handful of egoists.

I wonder how many people have ever experienced their brain physically running out of energy making it so they cannot use their mind and have to lie still, unthinking, unfeeling - merely existing in a body.  This I believe is a torture no one but #MECFS patients understand.

@JanetDafoe Is this particular research being funded by OMF? Sounds like they’re making excellent progress!

Here is a link to a video about Ron Davis and Rob Phair’s recent work on the itaconate shunt with the scientists at the University of Utah. This was a talk we gave at the Bay Area MECFS support group which was recorded over Zoom. drive.google.com/file/d/1rKf1jo…

Iraq’s parliament is about to vote on a law that would make it legal to marry girls as young as nine. Add your name to help protect women and girls in Iraq. share.eko.org/878636147t?ref…

Plastic pollution is harming the planet. Join me and @DavidSuzukiFdn in calling on Canada to limit global plastic production with a new environment treaty. nmshr.io/s/twitter/YR89…

@Bridget_OShea 😢💙

I saw some of the best specialists the US has to offer in March, 2024. It‘s now July, 2024. I’m looking into hospice care. I’m 46 years old. Lack of interest or concern from medical, political and scientific fronts has put me where I am today. #MECFS #MillionsMissing #LongCovid

@chronicsurv1vor It’s a sad world without hugs and friends. Hang in there!!! Sending you love 💔❤️‍🩹💗

#severeME #awareness When you suddenly remember you’ve not seen a friend or had a hug since 2018 & only had one shower this year you fall apart crying devastated 💔😭 WTF. What. The. Fuck. Most of the time I don’t think about it to survive. Wtf. *deep breath* ok back to blocking it all out to cope.

The Centers for Disease Control and Prevention @CDCgov has officially launched their webpage in recognition of ME/CFS International Awareness Day. Explore it here 👉 cdc.gov/me-cfs/resourc… #pwME #MECFS #MECFSAwareness

@JanetDafoe Yikes that’s a lot to deal with. Hoping things improve quickly!

I thought I should tell you that I haven’t been active on here lately because I’ve just discovered I have breast cancer again and I got pneumonia pretty bad. All at the same time. The cancer is small and should end up fine but I’ll have to go through some kind of surgery TBD

@TimoStrotmann So disheartening! It’s such a cruel disease. Hang in there

The urgency of this cause cannot be overstated, and we pledge to continue working tirelessly to honor Lauren’s memory. Lauren’s passing is a profound loss, and we recognize the deep impact she has had on those who knew her and on the broader ME/CFS community.

@RedefiningMECFS Can you pls explain which subset has this phenomena?

We showed that an #ME subset has evidence of autophagy disruption due to chronic activation of mTOR. Rapamycin is an mTOR inhibitor. So we organized a pilot trial to track symptoms & autophagy at the same time! Donate to a bold commitment to treatment! simmaronresearch.com/donate

@JanetDafoe Good luck! Hope everything goes smoothly

Im having a thyroidectomy tomorrow for thyroid cancer. It’ll be fine! ❤️🪶🙏🏼

@Z3R0Gravitas @janejet07 @JanetDafoe Thanks! I just remember the yeast didn’t rise when they changed a gene… Will read the article when my brain isn’t so 🍳

@janejet07 @SicCanuck @JanetDafoe Not really.🙂 The IFNa-itaconate shunt is separate, bigger & more likely than the IDO-tryptophan trap hypothesis. Phair & OMF fairly quietly switched focus since finding experimental evidence against the first trap with preliminary kynurenine trials: omf.ngo/kynurenine-tri… 1/2

#MECFS2023 Rob Phair starting off series of talks about itaconate shunt. Explaining the model, his updates, the evidence. Exciting day.

@JanetDafoe Thanks for all of the updates Janet! Glad to hear it’s going well!

#MECFS2023 The discussion is amazing and productive! So great.

There's a difference between being tired and fatigued. Between not wanting to do something and not being well enough. Between not working by choice and not working due to illness. Between being unreliable and living with an unpredictable illness. There is a difference.