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Jan 22, 2022 10 tweets 4 min read Read on X
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. A hand wearing a glove holds a large trash bag. Flies swarm
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 paper’s authors recommended cognitive behavioral therapy combined with a gradual increase in exercise, even if symptoms got worse....Unlike other diseases like heart failure, pulmonary hypertension, and kidney disease where exercise is tolerated…It’s not with ME/CFS” “To treat ME/CFS, the paper’s authors recommended cognit
One defining characteristic of ME/CFS is that patients feel significantly worse after exertion. This symptom is called Post Exertional malaise (PEM). With ME/CFS, the main energy production system in the body (the aerobic energy system) is broken. “32 years of research (since that damaging paper) has show
ME/CFS is an exertion disease. Problems with simply exerting oneself (physically or mentally) are often so serious that a federal report suggested ME/CFS be renamed “systemic exertional intolerance disorder" (SEID) as a result. “ME/CFS is an exertion disease. Problems with simply exert
Studies indicate that exercise impairs an ME/CFS patient’s ability to produce energy and think. It negatively impacts the functioning of their brain and autonomic nervous gastrointestinal and immune systems. A woman does a squat while holding a weight. Behind her, a s
Exercise produces a burst of inflammation in ME/CFS patients...one study found that walking, due to patients’ reduced ability to utilize oxygen, placed far more of a physiological burden on patients compared to healthy controls. And there are hundreds more studies... “Exercise produces a burst of inflammation in ME/CFS patie
A 2019 study found that GET caused deterioration of physical and mental health, worsening of existing symptoms, and development of new symptoms in ME/CFS patients. The news came years after doctors “treated” patients with GET, inflicting physiological and psychological harm. “In a 2019 Oxford Brookes University study on G.E.T. in ME
Heroin was once a cure for coughs, cocaine was once a cure for tooth pain, and lobotomies were once a cure for mental disorders. The point? What was once used as a treatment is now known to harm.

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More from @itsbodypolitic

Feb 25, 2022
“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/ Horizontal Black and white text on a blue background. White
"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." “Humanity, we were so close. So close to achieving the end
"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." When will we (really) be out of the pandemic? When the natio
Read 8 tweets
Jan 20, 2022
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."
Read 10 tweets
Dec 22, 2021
“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/ A snow globe containing a woman sitting in a chair with her
The external world of the #LongCOVID patient A woman sits inside a black and white snow globe with her ba
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. Four medical professionals wearing scrubs and other protecti
Read 9 tweets
Dec 15, 2021
"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/) 🧵⬇️ A woman with hands covering her eyes and around her throat.
"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." Talking about Omicron (or any variant) resulting in milder i
There are dozens of studies and hundreds of news articles illustrating the growing impact of #LongCOVID, even in people with originally “mild” illness Text that says “there are dozens of studies,” with  screText that says “there are hundreds of news articles,” wi
Read 14 tweets
Sep 26, 2021
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
Read 25 tweets
Aug 20, 2021
📢 Job opening at Body Politic: we are looking for a part-time remote social media manager to help run our IG & Twitter.

Experience with disability justice or chronic illness communities is a plus. BIPOC and LGBTQ+ applicants to the front!

More info: indeed.com/m/viewjob?jk=1…
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.

More: wearebodypolitic.com/about-body-pol…
Read 4 tweets

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