living with ME/CFS in Toronto. love music when I have the energy to listen to it.
Joined September 2012
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SicCanuck retweeted
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.
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/YR89CzfEH…
SicCanuck retweeted
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
SicCanuck retweeted
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/resources/awa…
#pwME #MECFS #MECFSAwareness
SicCanuck retweeted
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.
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SicCanuck retweeted
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
SicCanuck retweeted
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.
SicCanuck retweeted
ID: 'DID YOU KNOW?
MYTH
People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) just need to exercise more.
FACT
Exercise can exacerbate symptoms in people with ME/CFS due to post-exertional malaise (PEM). PEM is one of the hallmark symptoms of ME/CFS. PEM involves a worsening of symptoms following even minor physical or mental exertion. This reaction can occur immediately after the activity or be delayed by hours or days. PEM can last for days, weeks, or even longer in some cases. It's crucial that people with ME/CFS pace themselves and listen to their bodies. Encouraging people with ME/CFS to push themselves is dangerous.
Learn more at omf.ngo'
#MillionsMissing #ScienceNotStigma #MECFS #MyalgicEncephalomyelitis #MyalgicE #MedTwitter
SicCanuck retweeted
#MEawarenessmonth 💙 #severeME pls RT!
People ask me what do I do with my days. Well… the photo below is what I do. Every day. 7 days a week. Every day. I do THIS 👇🏼 , & do my best to get to the toilet daily, twice a week perhaps I text with my close friends, I may have a 5 minute convo with my Mum & on the good days perhaps some casual browsing on YouTube or Twitter. But this is what I do 👇🏼👇🏼. Mainly to try stop as much disease progression as possible. I do this in order to cope with any doctor appointment or any minimal thing like joining Mum in her room sometimes. When I wake up in the morning I brush my teeth in bed, take my meds & go back to this. For couple of hours. Then do something else minor for five mins. Then back to this.
How am I surviving people may wonder? I have no bloody clue most of the time. 🤷🏻♀️. Hope. Self soothing. Talking to myself lovingly. Being my own best friend. Having conversations with… myself lol. Quite interesting ones. Or sheer silence. No thoughts. Just being empty. Transcending the BS of the ego. Connecting with source & my soul. Forgetting & memory loss come in handy when you’re so sick because you forget some of the trauma! I don’t like sharing these things as I’m quite a private person but for ME awareness month, it needs to be shared.
So….What do I do all day?
This 👇🏼👇🏼👇🏼
#MyalgicEncephalomyelitis #MECFS #myalgicE #pwME #millionsmissing #innerstrength #spiritualawakening
International Day for Myalgic Encephalomyelitis (ME). These beds represent the millions of people world wide who are suffering from this devastating neuroimmune disease. No cure, no treatments, minuscule funding. #MECFS #MEAwarenessDay #MyalgicEncephalomyelitis
We are putting the finishing touches on our #MillionsMissing art installation & press conference! Join us in person at the Washington Monument or online at 2 pm ET & throughout the day. Your pillowcases are the perfect final touch. Thank you! millionsmissing.org
#pwME #pwLC
SicCanuck retweeted
Today is May 12th, #MECFSAwarenessDay. "ME/CFS is like a butterfly tied to a stone," as described by a 9-year-old with ME/CFS. Let's stand with the community and work towards finding treatments and a cure. #PwME 💙
15 years for me
May is Myalgic Encephalomyelitis Awareness Month.
If you’ve never heard of it, please look it up. I’ve suffered for 23 years with this illness.
#MyalgicEncephalomyelitis #ME 💙
SicCanuck retweeted
Dr. Anthony Fauci: #longCovid is an ‘insidious’ public health emergency
America’s top disease expert speaks to the Guardian about the dangers of long Covid and urges US Congress to avoid complacency
Read in The Guardian: bit.ly/3yTSdLw
A great way for #PWME to incorporate some gentle movement in a supportive environment with an instructor who “gets it”
I’ve attended classes a few times and it was slow paced, very relaxing and didn’t cause any crash #MECFS #MEAction meaction.net/event/meaction-…
SicCanuck retweeted
I need new tennis shoes, but won't buy @newbalance.
New Balance founder & CEO Jim Davis has donated more than $700,000 to MAGA Republicans Rick Scott, Steve Scalise & @NRSC Senate Republicans, combined, since June.
DEFUND #Fascism. BOYCOTT #NewBalance
bostonglobe.com/metro/2017/0…
This scares me so much.
"Some of those people do not want to die but feel they have few other options amid poverty, disability and a lack of access to resources." bc.ctvnews.ca/outraged-and-d… #cdnpoli #DisabilityRights #DisabledNotDisposable #DisabilityJustice