Inspired by actor-activist @jenniferbeals' #WellnessWednesday🚂, @DrDinaGohar runs this& IG: WWTrain to provide research-based #Wellness info & support (NOT Tx)
SO excited for our long-awaited #WWTrain on #Music for #Wellness tm w/ FAB singer-songwriters
I’m grateful I got to know thru inimitable @SaraBareilles,
who’s welcome to join for a bit!😁💙
Research-based resources:https://t.co/dAoVpCBf8C
Collab Playlist:https://t.co/WdpYjIZ8US
In 2022, an HHS report called LongCovid “extremely disruptive, dismantling one’s ability to work, their sense of self, & their entire existence.”
Then, it’s almost like there was a changing of the guard. We got rid of the rest of our data & media/governments began referring to Covid STRICTLY in the past tense. We got a new CDC director (with close ties to Jeff Zients), sought to change the definition of disability, & ended the public health emergency. “Accept Exposure” became our chosen strategy, care of Steven Phillips, formerly of Exxon, now VP Science & Strategy at the Covid Collaborative. These monsters work SOLELY for billionaires and corporations.
“Just a cold!” And we’re infecting & reinfecting all the kids. 🥴
“Many people with LongCovid have a lower health-related quality of life than people with some advanced cancers, research suggests.” https://t.co/jhZ947S5Yx
After we learned 24M Americans have LongCovid & majority struggle to live daily life, the number of US LongCovid patients began dramatically declining. Two years later, we’re told only 25 million Americans have LongCovid now, up from 24 million in 2022. Lies, all lies. We don’t count it for a reason.
Imagine being a badass scientist, MIT Physics, Forbes 30u30, and having millions of followers on multiple social media communicating about sciences. Just married, full of hopes and dreams. Suddenly, this is everyday life for you. This is the reality of @thephysicsgirl and so many others. It can happen to anyone. #LongCovid #NotjustaFlu
Disabled & high risk people can’t “just stay home” from the hospital. We NEED care. Certain disabilities & illnesses make it impossible to mask.
Mask mandates in hospitals during a pandemic should be absolute bare minimum. It should NOT be controversial. We aren’t expendable.
.@netanyahu how can you look into the mirror everyday? Killing civilians, Israelis or Palestinians is wrong….1 life is one too many…..but why you keep going on this path of destroying families and the future of an entire generation of Palestinians? And making Israel less safe? And all the MiddleEast?…Peace is the only way….
@LauraMiers I’m SO sorry. If it makes you feel any better, I’m a Clinical Psychologist who specializes in anxiety, and I know what you have been experiencing cannot be panic attacks. Doctors are so hell-bent on denying Long COVID, I’m told my symptoms are “in my head”, too😞It’s infuriating!
@broadwaybabyto Also, people who suffer from long bouts of clinical depression end up with no friends. People may understand at first, but they tend to put a time limit on how long you are “allowed” to be severely depressed. Or, since they cannot see something physically wrong, don’t even care.
Plus you can help us. We’ve already lost so much. Our health. Our independence. Our agency in many healthcare decisions. Our ability to safely access public spaces. Our friends and family.
We need allies we can count on to be there to support us. Who believe us. /13
I understand why they don’t want to face us. No one wants to face a reality of lifelong chronic illness. But turning away won’t save you. We can HELP protect your health. We can help build better safety nets so if you ever DO become sick you won’t struggle the way we do /12
I worry that Covid has only intensified the loneliness for the vast majority of chronically ill people. Those who are desperate to believe Covid is over NEED us disappeared. We are a constant reminder of the fact that they’re risking their health - and they don’t like it /11
All of these things lead to an isolated and lonely life - one where there’s a lot of longing. I long for someone who will show up for me & help me without judgement. Without dismissing my concerns or insinuating I’m not really “that sick”. I long for safe & loving connection /10
Unfortunately there’s people who seek to tear down the connections you make online - either by invalidating them or by incessant trolling which render it nearly impossible to use the website. This has gotten much worse since Covid. /9
This loneliness drives a lot of people to look for community on social media. It’s an invaluable place to connect because we can find like minded people & engage without ever getting out of bed. We don’t have to shower or try and look “our best”. We just have to show up. /8
The unwillingness of people to confront their own frailty - to consider the possibility that they could lose their health one day - leads them to isolate those of us who are chronically ill. They disappear us so they don’t have to face it. /4
What is PEM and What is NOT PEM?
***From today's presentation by @LBatemanMD
PEM is:
✔️PEM is a distinctive exacerbation of the patient’s symptoms and a further reduction in functioning after physical, cognitive, orthostatic, emotional, or sensory stress.
✔️PEM is diagnostic in ME/CFS* and a similar experience occurs in some with Long COVID.
PEM is NOT:
❌Fatigue. Chronic illness fatigue.
❌Deconditioning.
❌Exercise intolerance due to other chronic illnesses.(heart disease, lung disease, joint pain of osteoarthritis, pain amplification of fibromyalgia)
❌Normal/known consequences of excess physical activity. (Fatigue and sore muscles after vigorous sustained exercise.)
So keep up the fight. Call out injustices when you see them - but then refocus on the message at hand. Covid is airborne. It’s not over. It causes devastating Long Covid. The best way to prevent it is a layered strategy that includes clean air & respirators. We can do this. /end
Like most of us - I’m feeling hurt & betrayed by the knowledge that the WHO quietly upgraded their ventilation & air quality while pushing droplet dogma to the masses. They knew it was airborne & only protected themselves.
A 🧵on science, trust, trauma & how to move forward /1
@dysclinic Agreed, but I'd also look into activated infections that many of us carry asymptomatically. Chief among them, from what I've seen in a few hundred Long Covid patients, has been bartonella.
If I had limited funds for #LongCovid research, I would not have wanted to spend it on studying sleep disturbance, exercise, meditation or other lifestyle measures. Instead, invest in new and repurposed therapies that target neuroinflammation, autoimmunity and mitochondrial dysfunction.
#MedTwitter #LongCovid #MECFS #Dysautonomia