NEW LEAD OF LONG COVID CANADA FB. Sick w/
#longcovid
since Xmas 2020.
#FBLC
Former competitive swimmer, metalhead, intense living.
#MECFS
#LongCovid
ADVOCATE.
I've written a PEM Guide, from my own experience as a patient & learnings from my specialists. My goal is that even if you are familiar with some of the concepts, that you learn something new, that "AHA!" that helps you tie it all together and practice it better. feedback welcome
Partner tested ++!! I AM FURIOUS! he doesn’t understand why I’m so mad!! I’ve been struggling for 3.5yrs with BAD
#LongCovid
he’s SEEN me almost die a handful of times! FFS! 🤬 I feel so numb right now. I fucking love this man to pieces but I just can’t help but feel betrayed.
A dear friend of mine passed away yesterday after a 3yr fight with Covid. We never met face to face, only online, but we were very supportive of e other. Last I talked to her was literally 3 days ago. Her passing hit me, but she’s not suffering.
#RIP
Lisa, I love you warrior!🖤💔
What angers me to my core “you are obsessed/traumatized by this virus, you need to stop.” Oh, you mean the virus that almost killed me several times? The virus that completely disabled me and stole my ENTIRE life overnight!? Wouldn’t you be traumatized and be warning EVERYONE!?
@dysclinic
If you read the latest research that came out of
@NatureComms
on PEM it tells you one of the MANY reasons why we CANNOT move much. I used to be an athlete, and now I can’t even do light yoga for seniors without crashing. I WISH I could move more, even lightly. And I’m not alone.
@ErinAPN1
There’s no words to describe how much I hate what a lot of people/ society as a whole have become. Complete lack of empathy, understanding and love. It’s horrible. I am so sorry about ur daughter, I don’t know her, but I truly wish her better health. A hug full of light to both.
@CovidSolidarit1
@MeowVT
My friend’s wife’s developed palpitations/irregular HR after her Covid infection. I tried to educate that most likely Covid related and turning to Long Covid, response? “She’s been too stressed at work trying to catch up, that’s it. Stop trying to make everything about covid.
@Yes_IhaveME
@alexandrite113
What type of response is this? If someone has kids with the sole idea that once they’re legal age they can wash their hands off of their kids and “get their life back” then they shouldn’t have kids. Your comment is beyond gaslighting,this is not how to express concern for her mom
@RobWust
@PutrinoLab
@NatureComms
I really can’t thank you enough for this paper. As a former Int. Competitive swimmer, it’s been HELL trying to explain that I am NOT deconditioned, and that this is very different and conplex. Much more research needs to be done on PEM incl. cognitive exertion. But we THANK YOU!!
This needs to be shared far & wide, I’ve requested Canadian Media outlets to cover this story. Whilst this is not the first PEM research article, it’s significant due to the level of exposure and reach
@NatureComms
has. It will undoubtedly trigger further much needed research.
After a long wait, our longitudinal long COVID study is finally published in
@NatureComms
: . We find a skeletal muscle alterations in patients with
#longcovid
, which worsen with exercise. 1/n
@FriedmanJas
And this is why medical people who doesn’t matter how many yrs they’ve been practicing, if they’re not fam w COVID they should NOT have an opinion about it. This is exactly why we are fighting tsunamis of misinformation, because “experts” are talking w-out reading the research.
@ArlettePoolen
Thank you so much! You may be right, these are highly contagious variants…it still feels like maybe he didn’t try enough. I don’t know, I just hate everything right now, I’ve worked SO hard to be at this point in my recovery, going backwards I don’t know I can bear.
@farid__jalali
@Stanford
This crap just gets increasingly more surreal and unbelievable at how senseless and ridiculous things are now. Common sense and logic are dead for most 🤦♀️ so frustrating. 🖤🤘
Day 4 since I tested positive, and I’m having symptoms I haven’t had in over a yr. This is horrible! Still doing everything in the toolbox to keep viral load down, and we’re both on Metformin too. THANK YOU to those who’ve been supportive!! I love you.🖤🤘
#LongCovid
#Maskup
@drseanmullen
I love how my neurologist said “Well, the good news is that there’s no SERIOUS brain damage so you should be fine…” after my MRI 🤦♀️ so there IS damage but we’re both even caring enough to tell me what? How does it affect me? What to do about it? Just ridiculous.
@Silas33
Pacing has really been the biggest help for my ME. It’s helped me go from 100% bedbound to maybe 50%. I can’t do much still, but whatever little I can do it’s stuff I couldn’t do before. I don’t have POTS but have dysautonomia and yeah, nothing for that. Ivabradine semi helps.
@Bhavik0880
@UNGeneva
@mvankerkhove
@WHO
A good fitted N95 or better mask and invest in clean air for indoor spaces. You don’t need to stay home 24/7 just be smart with your precautions, mask, and individual HEPA air purifier and that alone will protect you pretty well. You can do your life as usual, it’s not hard!
@sunsopeningband
Oh PLEASE make them understand!! They’ll believe a respected academic like yourself WAY more than a million patients put together with their tracked data of how PEM destroys us.
@LexsWorld
@Vancity1999
You do realize that masks have been used in hospitals and medical settings for Several DECADES right!? My God people, you are seriously psychologically damaged🤦♀️🤦♀️🤦♀️
Your Support Matters!
It's been nearly six months since we launched the Canadian Covid Society in March, and we’ve made great progress in this short time.From hiring a coordinator and engaging teams of volunteers, to setting key priorities, we've laid the foundation for (1/13)
@unstopable_you
@bhanlon15
WHAT!? With 50% of
#pwLC
who develop ME/CFS you absolutely MUST include it in the conversation, in the research in everything. It would be useless not to. If anything they need to increase the $$$, but at least we have to start somewhere. This is the ONLY way to help everyone.
@MeetJess
As a former athlete I’ll agree w/her statement. We’re programmed to always push thru, keep going no matter what, and ESPECIALLY at the Olympics where it’s a dream come true, even more so.
It’s EXACTLY what NOT to do w Covid, but lack of education brings us here. My 💔 for them.
@TheActualJasonM
Can you take an individual portable HEPA with you? There are some pretty decent ones going for about $50🤷♀️. I am so sorry, I can completely understand your anxiety, maybe also bring a mask for the Dr and kindly ask him to wear one?
Fantastic job
@adriandix
causing stress!
@CovidCanada1
Thank you, I’m still negative, so he’s isolating in the other room and will wear mask on common areas. I don’t want to take off my mask AT ALL, I don’t care if I don’t eat/water. He still has the nerve to tell me he been masking even more and being careful. I just don’t believe.
@LasagneWest
@healingfromlc
You are being rude by gaslighting and downplaying a serious and very hurtful situation. Your comment is not appropriate nor welcome.
@U2Fight_World
PLEASE KEEP RESTING! We’re still here with you guys, we’re not going anywhere. We all know what a crash is, and for the amount of work you did is expected you need to let your bodies, brains and everything rest and heal a little. Please be gentle with yourselves. Healing hugs🖤🤘
Rocking my terrorist look to go get blood work done. At least it’s a bit of a relief I’m not the only one masked, there’s a couple of people with baggies blue, but it’s something?
#represent
#MaskUp
#LongCovid
#CovidIsNotOver
🖤🤘
@CaseyFlux
@dysclinic
@NatureComms
SO incredibly tough. Thru logging I’ve found my energy envelope, it’s SO limited it’s insane. I can only do the basics for myself, but no house chores, barely ANY cooking, showering AND washing my hair is a treat. No wonder muscles and everything go down, in order to avoid PEM.
@lilsistweets
@AlisaValdesRod1
@ChristelJGW
@lizditz
Of course, why would there be any different? Covid hits w/out discrimination of age, and health status. It’s a Russian roulette to develop
#LongCovid
which increases w/ each infection. But the vascular damage and damage to the brain/heart etc after each infection has been proven
International Long Covid Awareness actions and ways for you to get involved!
#LongCovidAwarenessDay
Friday, March 15th, 2024
#LongCovid
groups/orgs/individuals hosting events/actions-- Please add your plan for the day & be sure to share this thread.
THANK YOU!
@alexandrite113
@Yes_IhaveME
I know, I had so many issues w my mom up until recently. Still, some people just shouldn’t be parents, period. I’m sorry you’re experiencing this gaslighting from the one person who’s supposed to protect and care for you. My inbox is always open if you want to chat. 🖤🤘
@AnciraBecky
Thank you🖤 I miss her so much already. It was heartbreaking, she felt like a burden to her family and had no friends left. She was in/out of the hospital constantly, but had the best attitude always. She truly was a warrior. It’s so unfair.
#FuckCovid
#MaskUp
#CovidIsNotOver
@BobundDaisy
Thanks so much! masks are not perfect, but I feel like he may have losen his precautions a bit. I don’t know, I’m really confused/angry. I’m 100% housebound due to my condition other than medical appmts. I was a sitting duck trusting he would keep us safe. You’re right though.
@K_Bishof
All these people mocking you without realizing the millions there are suffering of
#LongCovid
who have never been vaccinated lol 🤦♀️🤦♀️🤦♀️ ridiculous.
@Rockawaytheday
@dockevinmcleod
Why? Because COVID now triggers people?? Other than that, there’s NO controversy, if you’re sick, you don’t spread it, period. ESPECIALLY if it’s Covid, that’s not up for discussion.
Exciting news: we're joining forces with a huge coalition of community organizations to present Vancouver's second annual
#CleanAirFestival
: an immuno-inclusive hybrid event that celebrates clean air and community care 💕
@healingfromlc
As a former intl. competitive swimmer I’m constantly AMAZED at the BS that comes out of so-called “Drs” mouths. Really makes u wonder what on earth are they on to make such claims. What’s worse, these are the ppl we go to for advice, and those who don’t know will actually listen.
@KSchnickelfritz
Definitely angry at PH and the government for lack of proper public education on the hazard of this virus and preventative measures. I’ve been fighting and advocating for the past 3.5yrs.
@LasagneWest
@healingfromlc
Truthfully that means nothing. It’s not “a handful” of people. It’s over 100M in the world rn. There’s SEVERAL studies showing the internal damage a single Covid infection can do, even if you don’t develop
#LongCovid
, let alone 3.
@seekthesun
@PutrinoLab
@ClareWilsonMed
100%. I used to be an international lvl comp swimmer, extremely healthy & active also a BEAST at my job, lived my life to the fullest. It took ONE infection almost 4yrs ago, been completely disabled with a list of damage ever since. I’ve always said it’s hell inside a nightmare.
@MeetJess
I was very surprised to see him the Medley relay Final this morning. He lost steam on the last 50 and that never happens to him. My heart aches for the consequences of pushing that hard while still so fresh w COVID, this is what increases chances of bad PEM later on too💔💔
My hair was mid-back long, washing it took literally all my energy for that day. My scalp’s always in pain from having a bun all the time. So I chopped it all off (well, my partner had fun w that lol) this will be quite the energy saver. What things have you done to save energy?
@LexsWorld
Not wasting my little energy on you, no matter what scientific data anyone shows you, your pride and denial will win. I’ll be seeing you in the
#LongCovid
hell when you join the club. Enjoy your health while you have it.
@Amal4Solutions
This is what baffles me! Masks have been around for DECADES, always seen as a protective tool, not a violation to freedom and “human rights” 🤦♀️🤦♀️ I really do not understand medical professionals suddenly not WANTING to wear masks because of fucking stupid tantrums!
@jackwhitehall
@NetflixUK
I was having a shitty day and your special had me laughing to the point my lungs hurt. This is your best one yet for sure, THANK YOU!! You rule!! Congrats on mini human coming, can’t wait for the stories. Cheers sir🍺🖤🤘
@loscharlos
Until we see trials for
#Longcovid
that considers PEM into their results, I fear that a lot research will be useless, since over 50% of Long Haulers suffer from it and it’s one of the worst things to suffer from.
@beansprouts_mom
This makes me beyond angry because she knows EXACTLY what she’s doing with all that ambiguous word diarrhea, because people don’t want to think, all they see is “ aahh that makes sense…no test = no masks = pretend we’re still normal - hurray!” When they have ZERO clue.
@EthanCh34267924
She had Covid 3yrs ago, left her with a number of lung/heart issues. She was often in/out of the hospital, with oxygen. This last time was in the hospital since April as her lungs were collapsing and was told she didn’t have much to live. She was a warrior and fought to the end.
@CovidSolidarit1
I just want to give up and leave this shitshow of a planet. I’ve worked very hard to try to raise awareness and each day is harder and harder. Plus enduring the hell of
#LongCovid
. Ready to check out and go💔🥺
@beansprouts_mom
I have a small HEPA in my room, I got Vicks defence nose spray and mouthwash with CPC. I’ll be spraying Lysol when I go to the bathroom as he takes off his mask there to blow his nose, brush teeth, etc.
@EmJayNabuurs
I am so sorry, that’s awful! I’d add an anti-histamine as there’s research that shows it helps lower the viral load, & saline nasal rinses on too of the Betadine. I used the NeilMed nasal rinses did them a few times a day. Of course REST and good food. Sending good vibes! 🖤🤘
@dysclinic
@NatureComms
I’m not bedbound or immobile, but I can’t be outside much less drive or be in a car due to neurological issues. I try to move around at home but I can’t do much, and I’d be lucky if I hit 1-1.5K steps on a good day…
@keetmuise
I’m so tired of everyone pretending like nothing is going on, especially the authorities keeping their mouth shut watching people drop like flies. They are dead inside. It’s absurd we cannot trust not only authorities but most experts anymore, and people are blinded by denial.
@luckytran
I know people who keep saying “it’s mild” and yet they keep getting super sick at least once a month, and still can’t connect the dots🤦♀️🤦♀️
@Earl_R_Robinson
@drseanmullen
Avoiding the actual Covid virus is priority
#1
since that’s the cause of all this mayhem, and each reinfection makes things worse. Vaccine or not, if you’re infected by the virus, especially multiple times, you’ll see the same fate as the tens of millions of us, guaranteed.
In bed with my floofs🥰🥰 señorita Miau and my two boys. Look at them! How can you not smile with such adorable little souls, full of light and love? I love them with all my being. 🖤🤘
@SabineG04696236
Thank you, that’s true. I guess what I meant to say was that I’ve found many patients trying medications to target fatigue and a lot of the symptoms that get worse as a result of living outside of their EE, which wouldn’t work well if they keep crashing. I’ll modify that, thanks!
@useless_priest
@LauraLeslieF1
I used to go to SO MANY shows, festivals, etc. and now I don’t think I’ll ever be able to go to one ever again. That’s soul crushing.
For too long, millions of Americans suffering from long COVID have had their symptoms dismissed or ignored – by the medical community, by the media, and by Congress. Unacceptable.
Congress must act now. Yes. It is time for a Long Covid Moonshot.
@alexandrite113
Oh wow!!! This is what I absolutely HATE about this condition, the unpredictability of everything. We are in total darkness on how our bodies will react to previously normal things because it’s all out of whack. I am so sorry to hear this! 🖤🤘
@GhostOfSocrates
@lithohedron
@PennyDaflos
@Northern_Health
@CTVVancouver
And this is EXACTLY why we’re in the chaos we’re in. Her and all other gov/health officials have been picking and choosing what and how to say it, full of contradictions, w/out educating people on the REAL dangers. No wonder no one believes anymore, but it’s ridiculous!!!
@SarahOC_MECFS
I thought it was just me, because I drink A LOT of water. So I stopped drinking water after 7pm and I STILL get up a couple of times during the night. Nice to know it’s part of the
#LongCovid
care package😩😞
@simmian42
@loscharlos
@PlanetEarth_HD
I got sick in Dec2020 my dr told me that if anything to go to the ER. She didn’t know anything about Covid and didn’t want to know anything about it. She later told me I had anxiety& heartburn when my HR would shoot to 200 for no reason and having mini hrt attacks from low O2.
@sunsopeningband
1000% ! But apparently millions of us just suddenly decided to all go crazy paranoid hyper negative with our lives, drop everything and live off of handouts because that’s what’s “In” LOL
Sadly, unless it comes from all experts mouth, we the patients will continue to be lost.
@sthar93
@TheActualJasonM
Novavax unfortunately was JUST approved in Canada, but we don’t know yet when it will be available 😓😓 it sucks because I’ve been holding off getting my booster waiting for Novavax to get here.
@NietzscheKant2
@elisaperego78
The pool depth thing is true, and that particular pool is not known to be as fast as others (I raced there a couple of times and my times weren’t what I expected). BUT Covid absolutely 100% has way more impact and has a lot more weight for the poor performances of the swimmers.
@surf4children
My deepest condolences to you, his family and friends. This illness is living hell inside a nightmare. Thank you & all the researchers around the world working tirelessly trying to help us & understand that give us hope to hang on.
@PutrinoLab
@RobWust
@sunsopeningband
etc 🖤🤘
@TheActualJasonM
@randsco
Terrifying to think they are even considering to replace Dr. Tam with her to run Canada’s health care. We would be completely doomed.
I had a chat w Dr Okonula, she is FANTASTIC and this website is an incredible resource for patients and clinicians alike. Not limited to Canada, and clinicians can get credits for their license while learning science-based reliable information about our hell. CHECK IT OUT!🖤🤘
@I_need_a_razor
I am 100% sure many more than we think are suffering from
#LongCovid
and don’t know it. Either because of lack of awareness, or don’t believe it exists, or feel embarrassed to admit it. I know a few ppl who’ve gotten VERY sick and are convinced it’s something else still pushing.
@Alina_MSN_RN
On phone calls I also verbalize when I am feeling confused and need this to be explained again, or if I forgot something and I describe how I’m feeling at the moment. I make sure to mention how much help I needed to complete the forms and how long it took me.
@adriandix
at lower levels!? You ARE aware that BC has the highest #’s of COVID infections according to waste water data, promoting COVID protection on vaccinations is 100% irresponsible & useless since we know transmission still happens. The virus is AIRBORNE.
#Maskup
#CleanAir
While the peak of the respiratory illness season has passed, the SARS CoV-2 virus continues to circulate at lower levels. As the protection from infection that COVID-19 vaccines provide decreases over time, it’s a good idea to get your spring booster
#BC
.
@b_steve36b
Thank you, yes, I’ll try not to blame him, I know how contagious these variants are for sure. It just hit me hard.
I appreciate the ivermectin suggestion but I won’t take that, too much bad data and negative anecdotes..hopefully I can get Paxlovid and Metformin from my Dr.
What’s behind the post covid sickness surge? The vaccine? Immunity suppression? Long Covid? The answer is there is not one answer. It’s complicated and we have to keep the conversation going. Dr. David Putrino, Dir. of Rehabilitation Innovation of Mt Sinai Health System joins me
I had the honour of sharing my story with this wonderful host. Please follow and support this patient-led initiative to bring awareness to wide spectrum of ppl suffering of this hell that is
#LongCovid
.
#LongCovidAwareness
#MaskUp
#WeNeedAnswers
@janeinvll
@U2Fight_World
It truly is incredible what they have achieved. I really hope that this now historic event not only keeps going as a place for our whole community to be represented, but keep this huge momentum created to keep going and fight united, TOGETHER we are STRONG! THANK YOU guys!
WHY would I or the millions in my condition FAKE this? WHY would we let go such a fulfilling life where we were working HARD on our goals/ dreams? I will never understand what society has turned into. I just try to help all of those in the same hell as I am. We only have e/other.
@poetricus2
Lo siento mucho!! Si pueden hacer gargaras con enjuague bucal que tenga CPC como Crest total care 3-4 veces al dia, usen Enovid o Betadine cold spray nasal 2-3 veces al dia, ayudara a reducir el viral load. Y MUCHO descanso, fisico y cognitivo!
@alexandrite113
@onionstalk
As a precaution, I would clean it thoroughly with peroxide to disinfect anything that may be there, but otherwise, I think you should be ok. ☺️
@JesusIs91940818
Literally what happened to a former colleague of mine. One very close friend of his called me in absolute secrecy to ask me if I thought (because I know the research data) it was related to his 3rd infection. When I sd yes, she cried and said “I knew it, don’t tell anyone!” 😓
@chelseacuzzocr4
Right? I watch episodes of shows and when someone got sick (cold or whatever) and everyone got worried, took precautions and care of themselves. And I think… wtf happened to those times!? It’s absolutely insane!
@peaksandwaves00
@Dakota_150
I feel your pain. I was a competitive swimmer since I was 7 until I got sick 32mo ago… open water swimmer too. It was my therapy, my drug my everything and every day I’m devastated thinking I may never swim again😭
I truly wish you are able to get back to it.
Hey all! Time for a quick
@CanCovSoc
Canadian Covid Society update.
Specifically: introducing our new website!
And boy is it beautiful, and getting to be the resource we are striving for!
1/
@GeoEduOne
I was a high level competitive swimmer up until I got sick. I know when I’m deconditioned…I mean, yes, there’s no doubt I’m completely deconditioned now, but that is NOT the problem. I know my body and there’s 10001 things fucked up that’s never happened before. INCLUDING not