#kidney advocate

[sweetthoughtsbymarie]

Oct 27th

Uncle Mark will be spending his first anniversary without his wife as my auntie Marge passed last year in November. Cody and Mikki my cousin and his wife’s anniversary. My cousin Randy and his wife Toni Sue’s as well. Yesterday was National Pumpkin Day. What can I say as we come to the end of October… I have shared about ADHD, Depression and at least one person that is famous with Spina Bifida…

[townpostin]

Jamshedpur Court Loses Senior Advocate Biswajit Sengupta

Respected lawyer succumbs to kidney ailment at 70 Key Points: • Senior advocate Biswajit Sengupta passes away at 70 • Jamshedpur Bar Association observes mourning • Sengupta was unmarried, battled kidney disease JAMSHEDPUR – The legal community mourns the sudden demise of a respected senior advocate from Jamshedpur Court. Biswajit Sengupta, a 70-year-old senior advocate at Jamshedpur Court and…

[kidneystories2013]

BROADCAST WITH DRE ROUNDTREE

[cyarsk52-20]

When Tina Turner left her first husband - who was also her boss, captor, and brutal tormentor - she snuck out of their Dallas hotel room with a single thought in her mind: "The way out is through the door." From there she fled across the midnight freeway, semi-trucks careening past her, with 36 cents and a Mobil gas card in her pocket. As soon as she decided to walk out that door, she owned nothing else. When she filed for divorce, she made an unusual request. She didn't want anything: not the song rights, not the cars, not the houses, not the money. All she wanted was the stage name he gave her - Tina - and her married name - Turner. This was the name by which the world had come to know her, and keeping it was her only chance to salvage her career. Things could have gone a lot of ways from there. She could have labored in obscurity for decades, maybe making records on small labels to be prized by vinyl connoisseurs in Portland. She could have stayed in Vegas, where she first went to get her chops back up, and worked as a nostalgia act. And, of course, given what she had been through, she might have … not made it. What happened instead is that Tina Turner became the biggest global rock star of the 80s. I'm old enough to barely remember this, but if you aren't, it was like this: The Rolling Stones would headline a stadium one day, and the next day it would be Tina Turner. A middle-aged Black woman - she became a rock star at 42! - sitting atop the 1980s like it was her throne. She managed this because of whatever rare stuff she was made of (this is a woman whose label gave her two weeks to record her solo debut, Private Dancer, which went five times platinum); because she decided to speak publicly about her abusive marriage and forge her own identity, and in doing so give hope and courage to countless women; and also because - in a perhaps unlikely twist for a girl from Nutbush, Tennessee - she had her practice of Soka Gakkai Nichiren Buddhism, to which she credited her survival. She remained devout until the end. Tina's second marriage - to her, her only marriage - was to Edwin Bach, a Swiss music executive 16 years her junior. Of him, she said, "Erwin, who is a force of nature in his own right, has never been the least bit intimidated by my career, my talents, or my fame." In 2016, after a barrage of health problems, Tina's kidneys began to fail. A Swiss citizen by then, she had started preparing for assisted suicide when her husband stepped in. According to Tina, he said, "He didn't want another woman, or another life." He gave her one of his kidneys, buying her the remainder of her time on this earth and perhaps closing a cycle which took her from a man who inflicted injury upon her to a man willing to inflict injury upon himself to save her from harm. Born into a share-cropping family as Anna Mae Bullock in 1939, she died Tina Turner in a palatial Swiss estate: the queen of rock 'n roll; a storm of a performer with a wildcat-fierce voice; a dancer of visceral, spine-tingling potency and ability; a beauty for the ages; a survivor of terrible abuse and an advocate for others in similar situations; an author and actress; a devout Buddhist; a wife and mother; a human being of rare talent and perseverance who, through her transcendent brilliance, became a legend.

Credit: Will Stenberg

[reasonsforhope]

Article | Paywall-Free

"The Environmental Protection Agency finalized a rule Tuesday [October 8, 2024] requiring water utilities to replace all lead pipes within a decade, a move aimed at eliminating a toxic threat that continues to affect tens of thousands of American children each year.

The move, which also tightens the amount of lead allowed in the nation’s drinking water, comes nearly 40 years after Congress determined that lead pipes posed a serious risk to public health and banned them in new construction.

Research has shown that lead, a toxic contaminant that seeps from pipes into the drinking water supply, can cause irreversible developmental delays, difficulty learning and behavioral problems among children. In adults, according to the Centers for Disease Control and Prevention, lead exposure can cause increased blood pressure, heart disease, decreased kidney function and cancer.

But replacing the lead pipes that deliver water to millions of U.S. homes will cost tens of billions of dollars, and the push to eradicate them only gathered momentum after a water crisis in Flint, Mich., a decade ago exposed the extent to which children remain vulnerable to lead poisoning through tap water...

The groundbreaking regulation, called the Lead and Copper Rule Improvements, will establish a national inventory of lead service lines and require that utilities take more aggressive action to remove lead pipes on homeowners’ private property. It also lowers the level of lead contamination that will trigger government enforcement from 15 parts per billion (ppb) to 10 ppb.

The rule also establishes the first-ever national requirement to test for lead in schools that rely on water from public utilities. It mandates thatwater systems screen all elementary and child-care facilities, where those who are the most vulnerable to lead’s effects — young children — are enrolled, and that they offer testing to middle and high schools.

The White House estimates that more than 9 million homes across the country are still supplied by lead pipelines, which are the leading source of lead contamination through drinking water. The EPA has projected that replacing all of them could cost at least $45 billion.

Lead pipes were initially installed in cities decades ago because they were cheaper and more malleable, but the heavy metal can wear down and corrode over time. President Joe Biden has made replacing them one of his top environmental priorities, securing $15 billion to give states over five years through the bipartisan infrastructure law and vowing to rid the country of lead pipes by 2031. The administration has spent $9 billion so far — enough to replace up to 1.7 million lead pipes, the administration said.

On Tuesday, the administration said it was providing an additional $2.6 billion in funding for pipe replacement. Over 367,000 lead pipes have been replaced nationwide since Biden took office, according to White House officials, affecting nearly 1 million people...

Environmental advocates said that former president Donald Trump, who issued much more modest revisions to the lead and copper rule just days before Biden took office, would have a hard time reversing the new standards.

Erik Olson, the senior strategic director for health at the Natural Resources Defense Council, said that the Safe Drinking Water Act has provisions prohibiting weakening the health protections of existing standards...

Olson added that the rule “represents a major victory for public health” and will protect millions of people “whose health is threatened every time they fill a glass from the kitchen sink contaminated by lead.”

“While the rule is imperfect and we still have more to do, this is by far the biggest step towards eliminating lead in tap water in over three decades,” he said."

-via The Washington Post, October 8, 2024

[ratbastarddotfuck]

.

This is maybe the funniest (worst) radfem post I've come across in a while. It was a comment about cis women getting hysterectomies.

Do y'all know how many feminists have been fighting to be allowed to get hysterectomies without a) birthing (often multiple) children or b) a husband's permission? Including many people who have extremely painful and/or dangerous uterus-related conditions, like PCOS or menorrhagia? So many doctors HATE giving hysterectomies specifically because "you really should have kids first".

Also, cis men don't need to "remove their ballsack" to avoid having kids. They get vasectomies. An incredibly simple, routine procedure.

People who are getting hysterectomies are often doing so for reasons not solely related to pregnancy - if it were just about fertility, getting your tubes tied would suffice if you were averse to other forms of birth control. My mum did that after my sister was born, and then went back in for a hysterectomy a few years later because her periods were agonising. My aunty also had a hysto several years back, because not only were her periods agonising, but they would cause flare ups in some of her other conditions.

I just... how are you calling yourself a feminist while advocating for LESS bodily autonomy for women? How can you act like women are being stupid or reckless in their choice to get a hysto and not see the indescribable misogyny you're utilising?

"It's never [cis] men who remove an organ just because they don't want it" yeah, I wonder if that's because they don't have an organ that causes agonising blood loss on a monthly basis? Like... nobody's out here getting kidneys removed for fun. It's a very specific organ only being removed for very specific, personal reasons.

It's my body, not yours. Hands the fuck off.

*This post is authored by a trans person. If you're agreeing with me about this topic while being against trans healthcare, consider that your whole ideology is built in opposition to bodily autonomy for people outside your ideals of gender. Sit with that information.*

[a-b-riddle]

Going back to the idea of 141 protecting accused reader

Check CW in tags

Price collects the names of everyone involved. Who accused you, who took you in, questioned you and anyone who laid their hands on you. Although Kate had nothing to do with it, the Americans, those fucking shadows overstepped. The best Kate can hope for is to avoid a charge with aiding in a war crime. Joining Kyle in interviews to find out the specifics. Who was cruelest? Did anyone touch you sexually? Were you starved? Questions they knew would overwhelm you if prompted.

Once Price’s job is done, Kyle starts to collect all the intel with a simple name. Digging into the lives of everyone responsible for breaking you as well as their loved one. It doesn’t take Kyle long to start planting things to make their lives go nuclear. Evidences of affairs that were AI generated sent to the wives waiting back home with their husbands attached with apology letters from the mistress. Insisting that she didn’t know he was married and to please use this as evidence if she chooses to divorce him.

Simon is the judge, the jury and executioner. Most of the shadows steered clear after everything came to the surface that you were truly innocent. That doesn’t stop him from beating them bloody during sparring. Challenging any one of them. Embarrassing them in front of their peers only to catch them off guard later in the night. Carving their skin, taking their fingernails as trophies. Having to refrain from showing you that he was giving you justice in the only way he knew how.

And then there was Johnny….

Sweet Johnny became your primary care taker. Isn’t phased when you need help bathing or going to the bathroom. Johnny who administered your pain medicine around the clock. Who was your advocate about dealing with the doctors and medical staff when you felt too overwhelmed. Who scheduled your medical appointments for your burns, lacerations and the other injuries and illnesses you sustained. Severed ACL. Upper respiratory infection. Kidney infection. UTIs from lack of hygiene items. Never once making you feel embarrassed. Getting you in touch with a therapist.

All of them doing their part to help you in anyway they can. All of them promising to never let you away from them again.

[jazzcathaven]

When Tina Turner left her first husband - who was also her boss, captor, and brutal tormentor - she snuck out of their Dallas hotel room with a single thought in her mind: "The way out is through the door." From there she fled across the midnight freeway, semi-trucks careening past her, with 36 cents and a Mobil gas card in her pocket. As soon as she decided to walk out that door, she owned nothing else. When she filed for divorce, she made an unusual request. She didn't want anything: not the song rights, not the cars, not the houses, not the money. All she wanted was the stage name he gave her - Tina - and her married name - Turner. This was the name by which the world had come to know her, and keeping it was her only chance to salvage her career.

Things could have gone a lot of ways from there. She could have labored in obscurity for decades, maybe making records on small labels to be prized by vinyl connoisseurs in Portland. She could have stayed in Vegas, where she first went to get her chops back up, and worked as a nostalgia act. And, of course, given what she had been through, she might have ... not made it.

What happened instead is that Tina Turner became the biggest global rock star of the 80s. I'm old enough to barely remember this, but if you aren't, it was like this: The Rolling Stones would headline a stadium one day, and the next day it would be Tina Turner. A middle-aged Black woman - she became a rock star at 42! - sitting atop the 1980s like it was her throne. She managed this because of whatever rare stuff she was made of (this is a woman whose label gave her two weeks to record her solo debut, Private Dancer, which went five times platinum); because she decided to speak publicly about her abusive marriage and forge her own identity, and in doing so give hope and courage to countless women; and also because - in a perhaps unlikely twist for a girl from Nutbush, Tennessee - she had her practice of Soka Gakkai Nichiren Buddhism, to which she credited her survival. She remained devout until the end. Tina's second marriage - to her, her only marriage - was to Edwin Bach, a Swiss music executive 16 years her junior. Of him, she said, "Erwin, who is a force of nature in his own right, has never been the least bit intimidated by my career, my talents, or my fame.

"In 2016, after a barrage of health problems, Tina's kidneys began to fail. A Swiss citizen by then, she had started preparing for assisted suicide when her husband stepped in. According to Tina, he said, "He didn't want another woman, or another life." He gave her one of his kidneys, buying her the remainder of her time on this earth and perhaps closing a cycle which took her from a man who inflicted injury upon her to a man willing to inflict injury upon himself to save her from harm.

Born into a share-cropping family as Anna Mae Bullock in 1939, she died Tina Turner in a palatial Swiss estate: the queen of rock 'n roll; a storm of a performer with a wildcat-fierce voice; a dancer of visceral, spine-tingling potency and ability; a beauty for the ages; a survivor of terrible abuse and an advocate for others in similar situations; an author and actress; a devout Buddhist; a wife and mother; a human being of rare talent and perseverance who, through her transcendent brilliance, became a legend.

Credit: Will Stenberg

[med-fetish]

Hello! Today I started playing with AI, this is what I came up with, I hope you enjoy it !

Isabelle was 26 years old when her life took an unexpected turn. Since childhood, she had always been an active and energetic woman. She loved running in the park, practicing yoga, and spending hours exploring the city with her friends. But everything changed one summer day when she began to feel a persistent pain in her right side. At first, she thought it was just a muscle strain, a consequence of her busy schedule and long hours at the gym.

However, the pain did not go away. After several medical consultations and tests, she received a devastating diagnosis: kidney cancer. The news hit her with overwhelming force. The idea of facing such a serious illness at her age was terrifying. Despite the tears and anguish, Isabelle gathered her courage and prepared for what lay ahead. She knew she had to undergo surgery to remove the affected kidney.

On the day of the operation, Isabelle arrived at the hospital with a mix of nerves and hope. She was greeted by a medical team that reassured her and prepared her for the procedure. In a private cubicle, she changed into a surgical gown, feeling the cold fabric against her skin. Clara, a kind nurse, placed a hair cap on her head and explained the importance of the compression stockings, which were put on her to aid circulation during the surgery. Despite her discomfort, Isabelle felt a bit more at ease.

When it was time for anesthesia, Dr. Martínez placed an intravenous line and explained that she would feel a little dizzy. As the medication took effect, Isabelle felt the world slowly fade away, leaving behind her worries. However, what no one expected was that the surgery would become complicated.

Hours passed, and the medical team realized that something was wrong. As the operation dragged on, a growing fear filled the operating room. Suddenly, alarms began to sound. Isabelle had gone into cardiac arrest. “She’s going into arrest!” shouted a nurse. In an instant, the room became a whirlwind of activity.

Dr. López, the lead surgeon, moved quickly, directing the team with precision. Dr. Martínez adjusted the anesthesia and administered emergency medications. Every second counted as the team fought to stabilize her. After several attempts, they finally managed to restore her pulse. The operating room, once filled with tension, was flooded with a sigh of relief.

With Isabelle’s heart beating again, the team continued the surgery, this time with renewed determination. Finally, after hours of hard work, Dr. López announced that they had finished. Isabelle was transferred to the recovery room, where she began to awaken. Her body felt heavy and confused, but the sound of the monitors reminded her that she had overcome a great battle.

As she regained consciousness, she found herself in a calm silence. When she opened her eyes, she saw a nurse approaching, who explained what had happened and assured her that she was okay. Over time, Isabelle began to understand what she had experienced. Although she had faced an overwhelming challenge, she had come through it.

Her recovery was a gradual process. With each passing day, her strength returned, along with her determination to live fully. She joined support groups, shared her experience on social media, and became a health advocate. Her story resonated with others facing similar situations, inspiring them to keep fighting.

A year after the surgery, Isabelle signed up for a charity 5K run, a goal she had set for herself before her diagnosis. On the morning of the race, she felt a mix of emotions. As she ran, each step reminded her of her struggle and the life she had regained. Crossing the finish line brought tears to her eyes, but this time they were tears of joy and gratitude. She had faced her fear and emerged victorious.

Isabelle had not only survived an illness; she had learned to live again, with a new perspective and a deep appreciation for each day. Her story became a testament to resilience, reminding others that even in the darkest moments, there is always a light at the end of the tunnel.

[jewish-vents]

I wish all the people trying to guilt-trip everyone into constantly engaging with the situation in Gaza at the expense of their mental health because "Palestinians have it worse" would realize that mental health is like bodily autonomy. You don't get to demand someone compromises it, even if they're likey to survive and it's to save the life of someone else. (The whole abortion rights, donate-your-kidney-to-save-cousin-George analogy?) Just like you wouldn't ask someone to give up a piece of their body if "it's to save someone's life, you monster", you shouldn't tell them to just push through meltdown after meltdown in order to advocate for the rights of people on the other side of their globe, even if they PROBABLY won't kill themselves under the pressure. This just isn't how that works.

.

[dreamingamongthestars]

This is such a hard post for me to make. I know Liam Payne was clearly guilty of many awful things, none of which should ever be excused.

When i was a little girl who grew up with 1D (offline and unaware of what was going on behind the scenes with management) and listened to their music, watched their videos, and read about them constantly, Liam was my favourite. I was as in love with him as any innocent naive little girl could be. I wrote stories about us falling in love, stared at pictures of his face. I still have a tshirt of him in my drawer, my 1D poster on my wall, and a bracelet with his name. I made a cringe ass poster to bring to one of their concerts saying "Liam let me kiss you". I lost interest after the breakup and I never knew why the reason behind it, the abuse going on behind the scenes, or Liam's behaviour, until much later when I would see posts about them. By then, I was already put off by his new songs and the things he would say. I knew that he must have been suffering with a lot of mental health issues and drug abuse. It wasn't an excuse, but I also pitied him, and I hoped he would find peace.

Later on, just last week, I was especially disgusted and disappointed when I heard about what he did to Maya Henry. I was content knowing that I've moved on from being his fan, now aware of what he's done. But then I felt so so awful for Maya and angry at him. I hoped that Maya would get justice and find peace herself.

But I can't help but think of his poor son, Bear, and his mother, and even his current girlfriend. I imagine young me would be in shock and grief if I found out. To die like this, intoxicated and clearly not mentally healthy, is such a tragic thing to happen. To see what he has turned into was so very sad. I don't want to speculate if it was suicide, or if he did it on purpose in response to Maya's accusations. Above all, I stand with her. But to watch the culmination of charming young talent, industry exploitation, bad behavior, and such an unfortunate end to someone I loved as a child without truly knowing anything about him has elicited emotions I can't quite name. Pity? Grief? Perhaps towards him, or not towards him now but the person he was, his child, his mother, his family, possibly even his bandmates, who were with him during such difficult times, and the people who grew up loving him?

Certainly I feel this for poor Maya, who will surely be relentlessly abused, harassed, and accused of causing this, which above all she must be protected from.

I pray that they all find peace in this awful situation. I hope there was a time when Liam was happy and healthy, when he wasn't treating others as badly as suspected. I hope Simon Cowell and all those responsible for the exploitation of these boys will be brought to justice.

To all who grew up loving him like I once did: it's okay to feel sad, and to grieve for someone we may have loved - even parasocially - at one point of our lives, just as we felt disappointed and disgusted finding out what he did to Maya. We will condem his wrongdoings and support Maya thoroughly amid this, and move on together.

But I also can't ignore what the media did to this man. To TMZ for getting pictures of his body, probably being how his loved ones found out about his dealth. Nobody deserves that, Liam could never deserve this loss of dignity.

We need to simultaneously advocate for justice for Maya, and against TMZ, the media, and management for what they did to Liam. This is unacceptable.

I still can't help reliving the memory of almost crying, reading about the little boy who would regularly get treatment at the hospital for his kidney complications. Treasure your childhood, hold on to your memories, but always keep a conscious mind and strong sense of justice. I'm sorry it had to end like this

[sweetthoughtsbymarie]

Kidneys makrvsure you take care of them

“Hey, everyone, it is your favorite podcaster, Marie, and I’m here with a message for you from Hurricane in my life. Sorry, I kind of sound like crap right now. The only thing is that I’m pretty sure it’s related to allergies, because I have like literally no other symptoms, except for all symptoms that are common for me, especially with my allergies. So if I sound like crap, I am sorry.…

[covid-safer-hotties]

Also preserved in our archive (Check out all of our long covid resources!)

BY Rhys Richmond

Research reports and detailed case studies from doctors and other providers can tell us a lot about Long COVID. But to understand the full scope of the disease and its impact, we must also listen to the experiences of patients who are suffering.

Today’s post features a contribution from one of our readers, who details his experience with Long COVID and a preexisting illness—in his case, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). As someone who suffers from both ME/CFS and Long COVID, Billy Hanlon—in his role as the director of advocacy and outreach at the Minnesota ME/CFS Alliance—also advocates for advancing research into these conditions.

While researchers and clinicians have noted parallels between ME/CFS and Long COVID, as well as among other post-acute infection syndromes, much more research is needed to fill the knowledge gaps. Some researchers hypothesize that multi-organ damage wreaked by COVID-19 might explain how people with preexisting disease in certain organs (such as the heart, lung, liver, and kidney) might be at higher risk of severe COVID-19 affecting those same organs. Furthermore, research has linked an increased risk of developing post-acute sequelae of COVID-19 (Long COVID) to having a preexisting medical condition prior to SARS-CoV-2 infection

In a sense, we’re beginning to see that COVID-19 infections might take advantage of less-than-perfect health to cause persistent symptoms. While other viruses have exhibited similar opportunistic patterns—for example, influenza has been shown to cause more severe illness and hospitalizations in patients with obesity and heart disease—the long-lasting and poorly understood manifestations of Long COVID merit particular attention. In Hanlon’s account below of his own struggles with ME/CFS and Long COVID, he also details how you may be able to help advocate for more research into both of these conditions.

A patient’s chronicle of life with ME/CFS and Long COVID I’m a resident of Minneapolis, living with ME/CFS and Long COVID.

In 2017, at age 28, I suffered from an acute viral-like illness. Before long, I began experiencing severe neurological complications, such as difficulty with concentration and comprehension, as well as heart palpitations. The newfound, crushing exhaustion was unlike anything I had ever experienced. Physical or mental exertion seemed to exacerbate these complications, a phenomenon called post-exertional malaise (PEM), the cardinal symptom of ME/CFS and now Long COVID. In 2022, following a second COVID-19 infection, my symptoms worsened, leading to a Long COVID diagnosis.

As my personal experience can attest, ME/CFS and Long COVID are multi-systemic diseases involving pathologies of the brain, immune system, autonomic nervous system, and energy metabolism system. Many patients report that the onset of the illness (ME/CFS) is preceded by a viral infection, such as Epstein-Barr virus, H1N1 flu, or SARS-CoV-2.

Despite my best efforts, I have never recovered from ME/CFS and Long COVID. There’s no cure or FDA-approved treatment for these conditions, which affect people of every age and background. Very few American medical schools include ME/CFS and Long COVID care in their curricula, so only a handful of specialists in the country are trained to treat these diseases. As a result, many patients are disbelieved or discredited in medical settings, leaving essentially no system of care to lean on. I learned firsthand about the barriers and inequities faced by patients with ME/CFS and infection-associated chronic illnesses. Care for these conditions is vastly under-resourced, under-funded, under-studied, largely overlooked, and highly marginalized.

I anticipated these formative years of my adulthood to be marked by time spent with friends and family (my wife and nephews), new homes, job promotions, and vacations, but instead I find myself in a twilight world of this medical enigma. My life trajectory was headed one way, then viral illness has completely redirected it. I now spend the majority of my time horizontal, forging ahead as best as my body will permit, advocating with the will that still endures. ME/CFS and Long COVID rob futures and confine lives. Coming to terms with losing my career, my independence, and so many hopes and dreams has been as difficult as the chronic illness.

A lot more could be said about the profound loss I’ve felt professionally, physically, personally, and socially, but I instead want to focus on actionable items that anyone reading this can do to help support future care for this rapidly growing group of people affected by these illnesses.

First, Sen. Bernie Sanders (I-Vt.) recently announced a legislative proposal for The Long COVID Moonshot Act. This proposal is aptly titled as the advancements needed surely warrant a moonshot—the term used when Congress marshals resources across the federal government to expedite progress. These infection-associated chronic illnesses have historically been left at the end of the queue for research funding.

You can reach out to your elected official and ask for their support on this proposal, which will help accelerate and prioritize research, diagnostics, and treatments. This proposal would provide $1 billion in mandatory funding per year for 10 years so that the National Institutes of Health (NIH) can respond to this crisis with the sense of urgency that it demands. Recently, Reps. Ilhan Omar (MN-05) and Ayanna Pressley (MA-07) have also introduced a companion bill for the Long COVID Moonshot in the House of Representatives.

Second, an ME/CFS Research Roadmap Report was approved in May by the National Institute of Neurological Disorders and Stroke (NINDS). This is a step in the right direction toward clinical trials, but now we need the NIH to robustly fund it. You can contact your elected officials and ask that the NIH help make this a reality. These are also efforts that could pay dividends toward an ME/CFS platform clinical trial. This was recently recommended by Senior Investigator and Clinical Director Dr. Avindra Nath following the completion of the NIH ME/CFS Intramural Study. A platform trial or advancements in the Research Roadmap Report could potentially yield a lot of intel for Long COVID treatments and help inform the RECOVER Initiative, a research program by the NIH that aims to understand, diagnose, prevent, and treat Long COVID..

Lastly, Long COVID and ME/CFS were highlighted in May at the Senate Labor, Health and Human Services, Education and Related Agencies Subcommittee FY25 NIH Hearing. During the hearing, NIH Director Dr. Monica Bertagnolli stated, “… I want to say about Long COVID and ME/CFS—we are so grateful for our partnership with the people that are affected by this. They have taught us over the last two years what we needed to do. Now we just need to deliver for them.” Millions of people would agree. A crucial step would be to establish a dedicated Center at the NIH focused on Long COVID, ME/CFS, and infection-associated chronic conditions and illnesses.

Rhys Richmond is an MD candidate at Yale School of Medicine

[kidneystories2013]

[intervex]

Some new, bright variants of the Disability Pride flag (with historic colours)

The diagonal stripe Disability Pride flag design by @capricorn-0mnikorn et al is flexible about the specific colours used for the red, yellow, white, blue, and green stripes - there are a variety of versions ranging from full saturation to reduced saturation.

For fun -- and to lean into my proposal for the stripe colours to be about different models & causes of disability -- I thought I'd make variant versions where the stripe colours come from historic flags and symbols made by disability organizers!

These are intended as supplementary variants of the main versions for circumstances where we want to talk about disability history. (I think the standard, desaturated version is the best general-purpose disability pride flag!)

The versions on the left have a silver grey (#cfd1d0) background from the Eros Recio disability flag. The versions on the right have the original black. The black/grey is to mourn disabled people who have died due to eugenics, violence, neglect, and illness.

Red: disability caused by violence and/or neglect (itself a form of violence). Also models of disability like debility and disabled black feminist theorizing which focus on how disability is used as a tool of violence to enact societal oppression.

The red (#f71d20) comes from the red AIDS ribbons (1991) used to protest the societal neglect of the AIDS pandemic. HIV/AIDS was ignored by governments for years because they either didn't care - or thought it was a good thing - that massive numbers of gay, black & hemophiliac people were dying.

Similar reds are now used by the Millions Missing (2016) campaigns to advocate for research and treatment for ME/CFS, another disease which disproportionately affects disadvantaged groups (mostly women) that has been widely neglected and dismissed.

Yellow: disability caused by natural differences. Models like the affirmative model and evolutionary models which view disability as providing positive benefits to individuals and/or society.

The specific golden yellow (#FDD70A): comes from the intersex flag (2013). Intersex is an umbrella term for natural bodily variations that don't neatly conform to ideas of "male" or "female". As a result we are medicalized when there is nothing actually wrong with us. (We intersex folks also belong to the queer community because of how we threaten binary ideas about sex/gender.)

Gold also appears on the Eros Recio disability flag (2017). More recently (2018), gold has become associated with autism, another natural difference.

White: disability caused by unknown or other factors. Models like the human rights model, which focus on how disabled people - regardless of how or why they are disabled - are deserving of basic human/civil rights and liberties.

The specific white (#FFFFFF) is from the neurodiversity flag. I have been unable to track down the first one from 2005 but a large variety of rainbow infinities on white backgrounds have been used ever since for neurodiversity.

Neurodiversity is a large umbrella category, and can be caused by many factors.

Blue: situational disabilities. Models like the social model and the radical model which posit there is nothing wrong with us. The problem is how society excludes us.

The specific blue (#009ee0) comes from the Deaf flag (2011). Many Deaf people feel there is nothing wrong with being Deaf, the problem is that the rest of society does not use signed languages, provide captions & transcripts, etc.

Green: disability due to natural illness. By "natural" I mean not socially imposed like how how treatable diseases are allowed to persist due to sociopolitical oppression/neglect. This is associated with medical models of disability.

Honestly I struggled for a historical flag for green - seems green is not a colour that disabled organizers seem to have been using until very recently(?). There are a bunch of green awareness ribbons from the 00s such as for kidney cancer, mitochondrial disease, hepatits B, and lyme disease. But I could not find evidence that any of them were made by the people with the relevant disabilities.

If anybody knows of any disability-led designs that prominently feature green that were used before ~2016 please let me know!

Green has been used as a colour for mental illness since at least 2013, and judging from my google image search results for "green ribbon awareness" this has been the most popular green ribbon awareness campaign.

But everything I can find gives me the impression this green ribbon campaign was created by sane people, though some celebrities who have been open about having mental health problems have backed the campaign.

The green sunflower lanyards used to indicate hidden disabilities started in 2016 in the UK, from which I got this green (#1f9a4b).

Purple: disability as a community. Models like the social construction model which focus on how the category of disability is socially constructed and maintained.

The purple (#82609b) is from the mad pride flag (2013). Mad pride has its origin in the psychiatric survivor movement, which has been critical of how psychiatry defines and punishes madness.

Madness in particularly has a long history of being socially constructed. For example, in how sociopolitical oppression can be twisted into individual pathology: black slaves who fled slavery were diagnosed with "drapetomania" rather than for society to understand slavery as oppression. More recently, terms like "climate anxiety" and "climate grief" have been used to individualize the climate crisis.

Including purple in the place of green in the flag is as a means to include mad pride & mutual aid communities when talking disability history. The five colours of the standard disability pride flag are to symbolize all of humanity, being the most common colours used in national flags.

Swapping out the green for purple for talking about disability history kind of represents how we disabled people have been on our own, not really represented by nation-states.

[ittyalfie]

I went in to the hospital unexpectedly for emergency surgery. I nearly did not even ask for medical help because of interoception difficulties, alexythmia, communication and high pain threshold. I am just amazed and so grateful I did the best thing and saught help. They thankfully considered my symptoms and presentation carefully, considered and ruled out appendicitis or kidney stones but it was ovarian torsion. But pain scale is so, so hard for me and I’m sure others, especially autistics could relate. I thought my pains were maybe 7 but it was a lot higher. I just wanted to share. If you try so hard to trust and advocate or assert your need in anyway , I am proud of you. I am proud of my self today. It was such a challenging day on so many levels. I don’t even know how I’m posting this but yay, I felt I really wanted to. I used my autism alert card from Aspect Australia and thank them for their resources. How to get one Link in here only for interest: