“The reality of the Long Hauler - and of all infection initiated chronically ill persons (#MECFS, #POTS, #ChronicLyme, etc.)…includes an external world that inflicts pain onto our already painful internal one." 🧵 & artwork by BP Vice Pres. Lauren Nichols instagram.com/p/CXpM1gErbxR/
In the medical community, #LongCOVID patients are at times fortunate to find doctors and researchers who validate their symptoms and seek answers, while others dismiss or deny their experiences.
In the general public, #LongCOVID patients and allies share their experiences or are committed to listening, reading, and understanding as well as they can. Meanwhile, others in the public continue to deny COVID’s severity and refuse to practice safety measures.
In the best cases, media & government acknowledge #COVID19 as a global crisis in need of urgent action while sharing facts about #LongCOVID patient experiences. At worst, responses are slow & inadequate or counterproductive, misinformation is spread, & patients are discredited.
“Our sharing is not to elicit fear or panic. It’s the opposite: It’s to help you not to experience what we do daily, with no treatments or cure or known prognosis. The fear felt by living this illness is scarier than the knowledge of this illness.”
"When we share, we do not deserve to be harassed over vaccines or your politics. We deserve the opposite: To be shown respect for exerting our limited energy to help you learn through us instead of becoming one of us.”
“Instead of doubting, harassing, or attacking patients for offering truth and transparency, attempt to listen. They’re trying to help you.”
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“We don’t have to learn to live w/a viral pathogen when we have time, effective public health measures,& a chance at increased medical innovation. The laziest, most inhumane thought is that we have to learn to live w/this virus" BP Vice Pres Lauren Nichols instagram.com/p/CaQcANZLmTE/
"Humanity, we were so close. So close to achieving the endemic stage of COVID. So close to delaying the rate of mutation. So close to better protecting the vulnerable...So close to preventing more cases of #LongCOVID."
"When will we (really) be out of the pandemic?...When the immunocompromised & children have societal supports in places to protect them until endemicity is achieved...When the US doesn’t have over 2,000 COVID deaths…per week."
Graded Exercise Therapy (#GET), once recommended as "treatment" for patients with #MECFS, has been found in multiple studies to instead cause patients *significant* harm. Thread ⬇️ graphics by Body Politic Vice Pres. Lauren Nichols: instagram.com/p/CKl50EyhT84/
In 1989 an erroneous & damaging paper about a “new approach” to chronic fatigue emerged in a British medical journal.
In it, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) was dismissed as psychological. News flash: it isn’t. Not even remotely. It stated that the pain patients felt after exercising was in their heads and that if they exercised enough, their symptoms would subside.
Body Politic & 130+ other disability organizations have responded with a letter to express our horror & disappointment at recent remarks by CDC Director Walensky & outline policy shifts the CDC must make to rebuild trust with the disability community: wearebodypolitic.com/bodytype/2022/…
"People w/4 or more comorbidities are people w/disabilities. People with 4 or more comorbidities are also disproportionately Black people, Indigenous people, Latina/o/x & other people of color, poor people, older people, & people who experience intersecting forms of oppression.."
"...marginalization that create barriers to quality healthcare, stable housing, & more."
"Talking about Omicron (or any variant) resulting in 'milder' illness is careless...It neglects to reflect on #LongCOVID statistically being more likely to occur in mild cases." Repost from BP's Vice President Lauren Nichols (@ LaurenTheMedium on IG: instagram.com/p/CXW0Wa1PAAM/) 🧵⬇️
"Talking about Omicron (or any variant) resulting in 'milder' illness is careless...It continues the spread of misinformation and ignorance surrounding the cause of the largest mass disabling event (Worsening daily) in modern human history."
There are dozens of studies and hundreds of news articles illustrating the growing impact of #LongCOVID, even in people with originally “mild” illness
Today we want to thank all the organizations in the #LongCovid, Covid-19, and disability justice space that we have worked with. We are grateful for the solidarity that exists in this movement + encourage our followers to show the groups listed below some support! 1/25
first up, @patientled: born from our support group, this patient-led, diverse, all-female leadership team was the first to study #LongCovid, with their work recognized by @NIHDirector. All the researchers are people with Long Covid and they emphasize patient privacy. 2/25
next, @MarkedByCovid: as leaders in the grief space, this org provides resources to those who have lost loved ones to Covid-19 and trains their members as advocates. Founded by @kdurquiza, this org centers and is led by those most impacted. 3/25
We are hoping to fill this position quickly with a start date in early September.
Applicants should have experience in graphic design and social media strategy and a passion for community-building.
About us: Our work at Body Politic seeks to destigmatize issues facing the COVID-19 community & people w/ related chronic illnesses & disabilities, by offering alternative narratives that show what it’s like to live with a novel or chronic illness.