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."
"Describing the deaths of people with four or more comorbidities as 'encouraging' because they were 'unwell to begin with' encapsulates the exact problem...The public health response to #COVID19 has treated people with disabilities as disposable."
"The disproportionate deaths our community has faced are the result of systemic failures that we have seen over and over again since the start of this pandemic...The dismissal and devaluation of people with disabilities has been our daily experience throughout this pandemic."
"It is necessary for the public health of our nation that the CDC and other agencies responding to the pandemic take immediate, concrete policy steps to rebuild that trust, protect disabled and high-risk people, and enact an equitable vision of pandemic recovery..."
"We urge you to take the following actions to help rebuild our trust in this critical institution and get our pandemic response on the right track..."
"1) Commit to regular ongoing meetings and consultation with disability stakeholders and CDC Leadership.....
2) Ground isolation guidance in public health evidence and data and in an understanding of their impacts on those most at risk..."
"3)Take action to center people with disabilities—and other communities disproportionately impacted by COVID-19—by ensuring that all CDC COVID-19 guidance and other response efforts are inclusive of the needs of people with disabilities."
Follow the link above to read the full letter, organized with @autselfadvocacy, & more detail about the three steps.
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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.
“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.
"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.
Dr. Jarred Younger is up to talk about imaging techniques for neuroinflammation. He has found a way to visualize elevated temperature in the brain and found that people with ME have pockets of heat across the brain - up to 100.8F!
This is related to overactivated microglia.
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He talks about how we're repeating research in #LongCOVID and how we need to be focused on treatments & clinical trials right now, prioritizing the drugs we think will work, which he says there are a ton of. We can't wait for a perfect biomarker before we start trials.
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