#autoinflammatory

[whatiswhump]

Chronic Pain in Whump potentially for post recovery Whumpees

I have a rare autoimmune/ autoinflammatory disease which results in severe joint pain, internal bleeding (mostly in GI tract), nerve spasms/ pain, loss of feeling in limbs from time to time, and other things.

Now I am on chemo to treat it now that we finally diagnosed it. I can describe the surprising side effects of the chemo I didn't expect in another post if anyone is curious.

I used to be an active person so although the progression of the disease was quite slow for a while, when I could no longer ignore it, the decline looked quite abrupt to all those around me. One day I was functioning (although struggling massively) and the next day I was not at all.

Nerve pain- like electricity jabs, I can feel them and their patterns, sometimes I involuntarily twitch from them they’re so strong. I can almost visualize the tree-like paths. Even more often it is like have a piece of glass stuck in my toe or finger that I keep feeling for days or weeks at a time.

A couple of years ago I was so convinced I had glass in my toe after an afternoon with sandals at the pub that when I couldn't get it out at home, we went to the A and E and I asked them to take a scalpel to my foot to get it out. Even though they didn't see anything in the xray I insisted and they did. I kept asking them to dig deeper and deeper becuase I could FEEL it. Eventually they said we had to stop. Years later I found out it is nerve damage. The nerves have been pressed and frayed in ways they aren’t meant to and even if they do heal, they take a Very Long time to heal- so if a whumpee undergoes torture, I’d bet they’ll be feeling those shocks for months or years afterwards if any nerves are compromised.

Joint Pain- Warm, so incredibly warm- my sister can feel the heat radiating off the affected joints when she touches them, my wrist will be hot while forearm cool, elbow- hot. The pain radiates too- dull, blunt, throbbing pain. Coying and filling every sense like a suffocating fog. Not sharp like a knife cut, like nerves, or an initial break of a bone. But no less intense. It feels like the joints will implode from the inside out of the steady but sure pressure that has to go somewhere- surely a body can't hold so much pain. Moving is difficult because you are so stiff, stairs seems almost impossible and in and out of bed is a herculanean task. You fall asleep when exhaustion overrides pain and in a few hours wake up when pain overrides exhaustion, it is a cycle, over and over for months and then years. My previous boyfriend could practically time down to the minute when I’d wake in the night with this schedule. This pain can be so brutal it can bring on nausea too. Surprising for something blunt.

Internal Bleeding- I bled for about a year before anything could be done about it. It hurt so much too but I was a 22 year old woman so it none of the doctors were overly concerned or pressured to figure out why despite such alarming symptoms. My family was shocked.

The first thing is normal iron levels plummeted. They didn't know why until later that it was becuase of the continual significant blood loss (important to keep in mind for characters who lose a lot of blood). It was like I donated a bag of blood every two days or less. I had to sit every week to get a bag of black colored iron infused into my veins to get back to a reasonable amount of iron- my body could make more blood but couldn’t get that much more iron from nowhere. I did that for a few months after the bleeding stopped. When the bleeding stopped, the worsening anemia stopped too.

It actually really does make you pale to bleed internally like that over time. When I saw the hematologist that was the first thing he said about my appearance and soon after the internal bleeding slowed, there was pink under my skin again. Your whumpee really will look visibly different if they can stop the bleeding for a bit. Having enough blood makes you warmer and pinker looking.

I doubt this is very helpful... but I guess this is my way of beginning to write about chronic pain and whump- I'd really like to use it! So this was a first exercise.

[graysongoal]

Not all juvenile arthritis types are autoimmune (as one photo the Arthritis Foundation shared today claims). Systemic JIA, also called Still's Disease, is actually autoinflammatory. That means the dysfunction is in the innate immune system, not the adaptive immune system, signaling possible genetic issues.

There has been a growing debate in the last decade about removing SJIA from the major three JIA types due to its different nature, something that might help push more research and treatments in the right direction.

This is also the type of arthritis that I have had for nearly 30 years now, the one that has nearly killed me a few times, and the one that took my best friend and fellow activist Laura Jayne Kenyon from us in 2012.

That's right - complications from arthritis can be deadly. That's especially true for this specific condition. It can be hard to get under control. Even when you do, Macrophage Activation Syndrome (MAS) can pop up at any time, bringing a host of complications including organ failure and death. MAS is notoriously hard to control and requires quick moves, making the odds of surviving even lower.

Even without MAS, the organ complications are rough. I've had arthritis attack my eyes, my GI system, my chest and heart, and more.

So, when I talk about having arthritis, know that this isn't just bone pain or joint swelling.

[regenhealthsolutions]

COVID-19 Linked to Long-Term Risk for Autoimmune, Autoinflammatory Disease

Long-term monitoring and management of patients is crucial after COVID-19, considering demographic factors, disease severity, and vaccination status, to mitigate these risks. In a population-based study published in JAMA Dermatology, researchers from the Republic of Korea investigated whether having a history of coronavirus disease 2019 (COVID-19) increased the long-term risk of autoimmune and…

[catfirebrand]

I hit the first (since I was very young), because it's true, but we're also pretty sure it was a bout of Rheumatic Fever that triggered the sJIA. So, both?

We ask your questions so you don’t have to! Submit your questions to have them posted anonymously as polls.

[reasonsforhope]

When Swiss cardiologist Thomas F. Lüscher attended an international symposium in Turin, Italy, last summer, he encountered an unusual “attendee:” Suzanne, Chat GPT’s medical “assistant.” Suzanne’s developers were eager to demonstrate to the specialists how well their medical chatbot worked, and they asked the cardiologists to test her. 

An Italian cardiology professor told the chatbot about the case of a 27-year-old patient who was taken to his clinic in unstable condition. The patient had a massive fever and drastically increased inflammation markers. Without hesitation, Suzanne diagnosed adult-onset Still’s disease. “I almost fell off my chair because she was right,” Lüscher remembers. “This is a very rare autoinflammatory disease that even seasoned cardiologists don’t always consider.”

Lüscher — director of research, education and development and consultant cardiologist at the Royal Brompton & Harefield Hospital Trust and Imperial College London and director of the Center for Molecular Cardiology at the University of Zürich, Switzerland — is convinced that artificial intelligence is making cardiovascular medicine more accurate and effective. “AI is not only the future, but it is already here,” he says. “AI and machine learning are particularly accurate in image analysis, and imaging plays an outsize role in cardiology. AI is able to see what we don’t see. That’s impressive.” 

At the Royal Brompton Hospital in London, for instance, his team relies on AI to calculate the volume of heart chambers in MRIs, an indication of heart health. “If you calculate this manually, you need about half an hour,” Lüscher says. “AI does it in a second.” 

AI-Assisted Medicine

Few patients are aware of how significantly AI is already determining their health care. The Washington Post tracks the start of the boom of artificial intelligence in health care to 2018. That’s when the Food and Drug Administration approved the IDx-DR, the first independent AI-based diagnostic tool, which is used to screen for diabetic retinopathy. Today, according to the Post, the FDA has approved nearly 700 artificial intelligence and machine learning-enabled medical devices.

The Mayo Clinic in Rochester, Minnesota, is considered the worldwide leader in implementing AI for cardiovascular care, not least because it can train its algorithms with the (anonymized) data of more than seven million electrocardiograms (ECG). “Every time a patient undergoes an ECG, various algorithms that are based on AI show us on the screen which diagnoses to consider and which further tests are recommended,” says Francisco Lopez-Jimenez, director of the Mayo Clinic’s Cardiovascular Health Clinic. “The AI takes into account all the factors known about the patient, whether his potassium is high, etc. For example, we have an AI-based program that calculates the biological age of a person. If the person in front of me is [calculated to have a biological age] 10 years older than his birth age, I can probe further. Are there stressors that burden him?”

Examples where AI makes a sizable difference at the Mayo Clinic include screening ECGs to detect specific heart diseases, such as ventricular dysfunction or atrial fibrillation, earlier and more reliably than the human eye. These conditions are best treated early, but without AI, the symptoms are largely invisible in ECGs until later, when they have already progressed further...

Antioniades’ team at the University of Oxford’s Radcliffe Department of Medicine analyzed data from over 250,000 patients who underwent cardiac CT scans in eight British hospitals. “Eighty-two percent of the patients who presented with chest pain had CT scans that came back as completely normal and were sent home because doctors saw no indication for a heart disease,” Antioniades says. “Yet two-thirds of them had an increased risk to suffer a heart attack within the next 10 years.” In a world-first pilot, his team developed an AI tool that detects inflammatory changes in the fatty tissues surrounding the arteries. These changes are not visible to the human eye. But after training on thousands of CT scans, AI learned to detect them and predict the risk of heart attacks. “We had a phase where specialists read the scans and we compared their diagnosis with the AI’s,” Antioniades explains. “AI was always right.” These results led to doctors changing the treatment plans for hundreds of patients. “The key is that we can treat the inflammatory changes early and prevent heart attacks,” according to Antioniades. 

The British National Health Service (NHS) has approved the AI tool, and it is now used in five public hospitals. “We hope that it will soon be used everywhere because it can help prevent thousands of heart attacks every year,” Antioniades says. A startup at Oxford University offers a service that enables other clinics to send their CT scans in for analysis with Oxford’s AI tool.

Similarly, physician-scientists at the Smidt Heart Institute and the Division of Artificial Intelligence in Medicine at Cedars-Sinai Medical Center in Los Angeles use AI to analyze echograms. They created an algorithm that can effectively identify and distinguish between two life-threatening heart conditions that are easy to overlook: hypertrophic cardiomyopathy and cardiac amyloidosis. “These two heart conditions are challenging for even expert cardiologists to accurately identify, and so patients often go on for years to decades before receiving a correct diagnosis,” David Ouyang, cardiologist at the Smidt Heart Institute, said in a press release. “This is a machine-beats-man situation. AI makes the sonographer work faster and more efficiently, and it doesn’t change the patient experience. It’s a triple win.”

Current Issues with AI Medicine

However, using artificial intelligence in clinical settings has disadvantages, too. “Suzanne has no empathy,” Lüscher says about his experience with Chat GPT. “Her responses have to be verified by a doctor. She even says that after every diagnosis, and has to, for legal reasons.”

Also, an algorithm is only as accurate as the information with which it was trained. Lüscher and his team cured an AI tool of a massive deficit: Women’s risk for heart attacks wasn’t reliably evaluated because the AI had mainly been fed with data from male patients. “For women, heart attacks are more often fatal than for men,” Lüscher says. “Women also usually come to the clinic later. All these factors have implications.” Therefore, his team developed a more realistic AI prognosis that improves the treatment of female patients. “We adapted it with machine learning and it now works for women and men,” Lüscher explains. “You have to make sure the cohorts are large enough and have been evaluated independently so that the algorithms work for different groups of patients and in different countries.” His team made the improved algorithm available online so other hospitals can use it too...

[Lopez-Jimenez at the Mayo Clinic] tells his colleagues and patients that the reliability of AI tools currently lies at 75 to 93 percent, depending on the specific diagnosis. “Compare that with a mammogram that detects breast tumors with an accuracy of 85 percent,” Lopez-Jimenez says. “But because it’s AI, people expect 100 percent. That simply does not exist in medicine.”

And of course, another challenge is that few people have the resources and good fortune to become patients at the world’s most renowned clinics with state-of-the-art technology.

What Comes Next

“One of my main goals is to make this technology available to millions,” Lopez-Jimenez says. He mentions that Mayo is trying out high-tech stethoscopes to interpret heart signals with AI. “The idea is that a doctor in the Global South can use it to diagnose cardiac insufficiency,” Lopez-Jimenez explains. “It is already being tested in Nigeria, the country with the highest rate of genetic cardiac insufficiency in Africa. The results are impressively accurate.” 

The Mayo Clinic is also working with doctors in Brazil to diagnose Chagas disease with the help of AI reliably and early. “New technology is always more expensive at the beginning,” Lopez-Jimenez cautions, “but in a few years, AI will be everywhere and it will make diagnostics cheaper and more accurate.”

And the Children’s National Hospital in Washington developed a portable AI device that is currently being tested to screen children in Uganda for rheumatic heart disease, which kills about 400,000 people a year worldwide. The new tool reportedly has an accuracy of 90 percent. 

Both Lopez-Jimenez and Lüscher are confident that AI tools will continue to improve. “One advantage is that a computer can analyze images at 6 a.m. just as systematically as after midnight,” Lüscher points out. “A computer doesn’t get tired or have a bad day, whereas sometimes radiologists overlook significant symptoms. AI learns something and never forgets it.”

-via Reasons to Be Cheerful, March 1, 2024. Headers added by me.

--

Note:

Okay, so I'm definitely not saying that everything with AI medicine will go right, and there won't be any major issues. That's definitely not the case (the article talks about some of those issues). But regulation around medicines is generally pretty tight, and

And if it goes right, this could be HUGE for disabled people, chronically ill people, and people with any of the unfortunately many marginalizations that make doctors less likely to listen.

This could shave years off of the time it takes people to get the right diagnosis. It could get answers for so many people struggling with unknown diseases and chronic illness. If we compensate correctly, it could significantly reduce the role of bias in medicine. It could also make testing so much faster.

(There's a bunch of other articles about all of the ways that AI diagnoses are proving more sensitive and more accurate than doctors. This really is the sort of thing that AI is actually good at - data evaluation and science, not art and writing.)

This decade really is, for many different reasons, the beginning of the next revolution in medicine. Luckily, medicine is mostly pretty well-regulated - and of course that means very long testing phases. I think we'll begin to really see the fruits of this revolution in the next 10 to 15 years.

[covid-safer-hotties]

Also preserved in our archive

by Elana Gotkine

COVID-19 is associated with long-term risk for autoimmune and autoinflammatory connective tissue disorders, according to a study published online Nov. 6 in JAMA Dermatology.

Yeon-Woo Heo, M.D., from the Yonsei University Wonju College of Medicine in South Korea, and colleagues conducted a retrospective cohort study to examine the long-term risk for autoimmune and autoinflammatory diseases after COVID-19. The analysis included individuals with confirmed COVID-19 from Oct. 8, 2020, to Dec. 31, 2022 (3,145,388 patients) and controls who participated in the general health examination in 2018 (3,767,039 controls) with an observation period of more than 180 days.

The researchers found that COVID-19 was significantly associated with an increased risk for alopecia areata, alopecia totalis, vitiligo, Behçet disease, Crohn disease, ulcerative colitis, rheumatoid arthritis, systemic lupus erythematosus, Sjögren syndrome, ankylosing spondylitis, and bullous pemphigoid (adjusted hazard ratios, 1.11, 1.24, 1.11, 1.45, 1.35, 1.15, 1.09, 1.14, 1.13, 1.11, and 1.62, respectively). Demographic factors, including male and female sex, age younger than 40 years, and age 40 years and older, showed diverse associations with the risk for autoimmune and autoinflammatory outcomes in subgroup analyses. Higher risk was also seen in association with severe COVID-19 infection requiring intensive care unit admission, the delta period, and not being vaccinated.

"Understanding the specific vulnerabilities and disease patterns among different subgroups is crucial for mitigating the long-term impact of the pandemic on global health," the authors write.

More information: Yeon-Woo Heo et al, Long-Term Risk of Autoimmune and Autoinflammatory Connective Tissue Disorders Following COVID-19, JAMA Dermatology (2024). DOI: 10.1001/jamadermatol.2024.4233 jamanetwork.com/journals/jamadermatology/article-abstract/2825849 (PAYWALLED)

Lisa M. Arkin et al, COVID-19 as a Risk Factor For Autoimmune Skin Disease, JAMA Dermatology (2024). DOI: 10.1001/jamadermatol.2024.4222 jamanetwork.com/journals/jamadermatology/article-abstract/2825853 (PAYWALLED)

[bluejaysandblackbats]

Bruised Figure

Fandom: DC Comics, Batfam

Summary: Jason aspires to become a figure skater despite obstacles in his personal life.

Chapters: 6/?

Characters: Jason Todd, Bruce Wayne, Catherine Todd, Willis Todd, Dick Grayson, Cassandra Cain

Additional Tags: Figure Skater AU, Chronically Ill Jason Todd, Hurt/Comfort

Chapter Six: Promises

After the doctor ran several more tests, Jason lay curled up in his hospital bed, too tired to speak. It wasn't until late afternoon that a new doctor came to explain something to Bruce in private. Dick tried to keep Jason preoccupied, asking him questions about figure skating. "Do you like the costumes?" Dick questioned.

"Dick?" Jason mumbled.

"What's up?" Dick asked.

"I know you're trying to be nice, but my head hurts... And I don't wanna talk right now," Jason explained before pressing his face into the pillow. Dick bit his lip before speaking. He would've taken offense, but Jason was terribly sick. Dick rubbed Jason's back.

Dick glanced at the monitors and saw that Jason's fever had peaked, but everything else seemed normal. Jason hadn't been this ill in a while. It felt like all his symptoms were so much worse, and it was mortifying to experience his illness while trying to seem okay in front of Bruce. The room stayed silent until Bruce returned, and he asked to speak to Jason alone. Jason turned on his side and opened his eyes. "Hey, how's it going, Champ?" Bruce asked. Jason gave Bruce a weak thumb's up. "Yeah, it's been a tough two days, but you're still hanging in there."

"No more small talk... I can't skate anymore, can I?" Jason questioned.

"I've got good news and bad news. What do you want first?" Bruce questioned. Jason gave Bruce a thumb's down. "Well, you've got a hereditary autoinflammatory disorder called familial Mediterranean fever, which requires you to take medication for life."

"Was there really any good news?" Jason questioned.

"Once this flare-up is over, the medication will prevent flare-ups in the future. They say it's extremely effective... And they said we caught it in time before it could cause damage to your organs," Bruce explained as he rubbed circles in Jason's forehead with his thumb.

Jason didn't react. He couldn't until Bruce told him everything. "You can skate as soon as you're better," Bruce whispered, "I know that's what—." Jason embraced Bruce and burst into tears. "Easy... We've still gotta focus on getting you well again." Bruce patted his back before tucking him into bed. "They'll start you on the medicine today."

Jason smiled and shut his eyes despite the pain he felt in his legs and stomach. "I'm gonna make you proud, Bruce. I promise," Jason whispered. Bruce frowned.

"I'm already proud," Bruce whispered, "You've been so patient with everyone. I don't know if I could've done the same in your shoes." Jason giggled. "What?"

"My feet are too swollen for my own shoes," Jason joked. Bruce smiled.

"Dick's making a run to get smoothies, so you'll have something on your stomach... Think you can stomach a smoothie?" Bruce asked. Jason nodded. "No pressure..."

"Hey, Coach?" Jason asked.

"Yes?" Bruce asked.

"I'm gonna place. I know. You said it doesn't matter, but I'll be great. Wait and see," Jason replied. Bruce grinned.

"You know what? I believe you," Bruce smiled.

Dick returned with four smoothies, and he offered Jason the first pick. Jason took small sips and looked up at Dick. "Are you gonna—?" Jason took a breath and shook his head.

He finally managed to keep his smoothie down. Bruce nearly sighed with relief when he took the empty cup from a fast-asleep Jason. Jason started visibly sweating. Bruce pulled the blankets back and patted Jason's forehead dry with a napkin. "I wasn't a good parent to you," Bruce whispered to Dick.

"You still had some growing up to do... And it's nice to see that you grew up in time to be part of Jason's life," Dick whispered. Bruce frowned.

"I wish I could make it up to you—."

"Be good to him... That's how you can make it up to me," Dick interrupted, "And I'm holding you to it. Our relationship is contingent on how you treat this kid."

Jason covered his face with his hand, still asleep, and Bruce rubbed his back. Dick went to sleep shortly after, but Bruce stayed awake well into the night.

Jason woke up in tears, trying to get out of bed in the dark hospital room. Bruce caught him and tucked him back into bed. "Hey, hey... I've got you. It's okay," Bruce whispered.

"I don't wanna stay here—."

"Jason, I know you're scared, but it's almost over. Once your fever breaks, we can go home," Bruce reassured.

"Can you sleep up here?" Jason mumbled. "Just for tonight, Bruce?" Bruce nodded and lay beside Jason in the hospital bed.

"You know I wouldn't let anything happen to you, right?" Bruce questioned. Jason pushed his face into Bruce's side.

"What if you can't help it?" Jason whimpered.

"Then I'll do whatever I can to fix it," Bruce replied. Jason settled into sleep, and Bruce allowed Jason to stay burrowed into his side until morning. Bruce slept soon afterward.

Jason woke up drenched in sweat, and Dick offered to get him something to drink. Jason sat up. "Feeling sick again?" Dick questioned.

Jason shook his head as the nurse entered the room. "Good morning, Sleepyhead. Feel up to taking your medicine?" she asked. Jason nodded as he took a pill and washed it down with juice. "Thank you... Breakfast should be on its way any minute now."

"Thank you," Jason mumbled. The nurse checked his vitals and left him with Dick and Bruce. "How come you stayed?"

"Don't know... Maybe I was curious to see if Bruce was lying," Dick replied, "And then I saw you... And I felt horrible."

Jason finished his juice. "Are you gonna stay to watch me compete?" Jason questioned. Dick nodded.

"I'll come back for your competition... And if you place, I'll get you a cake," Dick replied.

Jason grinned, and Bruce stirred. "Jason?" Bruce whispered. Jason looked over at Bruce. "Still too hot?"

"No," Jason replied, "But I'm still thirsty."

"On it," Dick volunteered.

The room grew silent. Jason yawned. "Do you know why I wanted to coach you?" Bruce asked. Jason shook his head. "You love figure skating. I could tell by the way you skate. You seem like you were born on the ice... That's why I don't care if you place or not. No one can take this away from you." Bruce tapped Jason's chest.

"I love figure skating... But I love you more," Jason whispered. Bruce smiled.

"I love you too, Jason... So much," Bruce replied.

"Thanks for keeping your promise," Jason smiled. Bruce nodded.

"Always... Jason, you can count on me, okay?" Bruce whispered as he dabbed the sweat from Jason's forehead. "Okay?"

"Yes, Coach," Jason answered.

Bruce climbed out of the hospital bed and stretched before tapping the bed. "Can I check to see if the swelling's gone down?" Bruce questioned. Jason nodded and allowed Bruce to roll up the blankets to look at his ankles. Bruce lifted Jason's leg by the ankle. Jason winced. "I'm sorry. How badly does it hurt?"

"Not as bad," Jason answered.

"They're not as red and puffy, so I believe you. When the swelling goes down enough, we can go home," Bruce whispered. Jason lay on his side. "Thank you for being so good about this... And thank you for letting me take you to the hospital."

"Thank you for keeping your promises," Jason replied.

[honey-crypt]

in a weird gender space mood thingy rn so imma rant about it ᕦ(ò_óˇ)ᕤ

i’m non-binary. yes, i lean towards the masculine side of my gender, but at the end of the day?? i’m nonbinary.

i’ve been with people who swing two different ways, people who treat as a cis woman and people who treat me as a trans man. i’m not a trans man and i’m not a cis woman, i’m a non-binary person.

i recently met (and formed a queerplatonic relationship with) another non-binary person and the intimacy of just being seen, to have someone understand your experiences??

of course, our experiences aren’t identical: i’m a fat, medically complex person who can’t go on testosterone to make myself more androgynous because of my autoinflammatory disease while they’re a thin, ablebodied person who is on estrogen and is able to “pass” as androgynous.

we’ve talked about our experiences and it’s interesting to dig into the intersectionality and nuances of it all. their non-binary identity is more respected because they meet the “standards” of what it means to be non-binary: androgynous, gender neutral, pretty but you can’t tell who they are. most non-binary people don’t meet the “standards” of non-binary placed by society and when non-binary people don’t meet that, they get separated by sex assigned at birth, such as women & non-binary only spaces rejecting “non-passing” AMAB non-binary people or dismissing AFAB non-binary people as “fembys” and hopping on the “trend”.

it’s frustrating. we as people always categorize stuff, we implement a black and white system… and the world isn’t black and white. the world is a spectrum, existence is a spectrum! and this applies to all social constructs! disability, race, gender, sex, law, crime, etc. and so forth! we can’t meant to follow or adhere to these binary systems!

at the end of the day, all i gotta say is… i’m trans and non-binary. my non-binary self is beautiful. i’m no man, i’m no woman, i’m me. i exist perfectly as is.

-sincerely an exhausted enby with a 3-in-1 bachelors (related to human existence and society) having a gender 4:34am

[m-e-and-more]

Not all #LongCovid is #myalgicEncephalomyelitis.

While its super important to raise awareness of the simularities of the #millionsMissing with #MECFS and #millionsMore with #LongC it is also essential to recognize that only a subset of #covid #longhaulers meet the criteria for a diagnosis of ME.

ME aka #ChronicFatigueSydnrome is not the same as #chronicFatigue. The defining symptom of ME / #CFS is #PostExertionalMalaise or an exhasurabtion of metabolic, neurological and immune dysfunction symptoms 24-48 hours after exertion.

When you are talking about long covid patients who experience #PEM you should talk about MECFS because that is what these patients have.

When you are talking about long covid patients be clear that only the subset with PEM have MECFS.

It is important for patients with long covid to receive the correct diagnoses, because while there are no FDA approved treatments for ME, many commorbidities do have effective medication options. Management of ME must also be tailored based on a patients commorbidities.

Patients with MECFS and post viral fatigue syndrome must not be prescribed GET or CBT. This includes all long covid patients with PEM.

Long covid patients who experience PEM should be advised to #StopRestPace and informed about the importance of pacing agressively not just to prevent symptoms from fatigue but to prevent PEM in the following days. This is regardless of whether they have PVFS (less than 6 months post covid) or MECFS (more than 6 months)

Because long covid is a broad category that encompasses patients MECFS #MCAS #fibromyalgia #POTS #dysautonomia #autoimmune and #autoinflammatory diseases in many combinations the prognosis for long covid patients is much more variable than that of ME patients and recovery is more likely in early stages of ME, long covid patients who recover should not generalize their experience onto MECFS patients more broadly and should continue to support MECFS research.

MECFS patients have decades of experience with pacing, medical gaslighting, chronic illness, housebound and bedbound life and more. We hope that #covidLonghaulers will #LearnFromME and ally with us to end #postViralIlness

[willowreader]

This prestigious journal has a great article about the autoimmune issues that can happen after COVID.

[jeraliey]

It's still a TERRIBLE idea to let this thing into your body, or to give it to someone else. Keep masking up.

[mongrelmutt]

Ugggh

TMI under the cut

I have HS (an autoinflammatory skin disease. Google with caution because it's gnarly looking), and it is flaring up and super painful. The fibromyalgia makes me less tolerant of pain. This fun combo is making me want to cut off my boob rn 😭

[didanawisgi]

Abstract

Therapeutic applications of synthetic mRNA were proposed more than 30 years ago, and are currently the basis of one of the vaccine platforms used at a massive scale as part of the public health strategy to get COVID-19 under control. To date, there are no published studies on the biodistribution, cellular uptake, endosomal escape, translation rates, functional half-life and inactivation kinetics of synthetic mRNA, rates and duration of vaccine-induced antigen expression in different cell types. Furthermore, despite the assumption that there is no possibility of genomic integration of therapeutic synthetic mRNA, only one recent study has examined interactions between vaccine mRNA and the genome of transfected cells, and reported that an endogenous retrotransposon, LINE-1 is unsilenced following mRNA entry to the cell, leading to reverse transcription of full length vaccine mRNA sequences, and nuclear entry. This finding should be a major safety concern, given the possibility of synthetic mRNA-driven epigenetic and genomic modifications arising. We propose that in susceptible individuals, cytosolic clearance of nucleotide modified synthetic (nms-mRNAs) is impeded. Sustained presence of nms-mRNA in the cytoplasm deregulates and activates endogenous transposable elements (TEs), causing some of the mRNA copies to be reverse transcribed. The cytosolic accumulation of the nms-mRNA and the reverse transcribed cDNA molecules activates RNA and DNA sensory pathways. Their concurrent activation initiates a synchronized innate response against non-self nucleic acids, prompting type-I interferon and pro-inflammatory cytokine production which, if unregulated, leads to autoinflammatory and autoimmune conditions, while activated TEs increase the risk of insertional mutagenesis of the reverse transcribed molecules, which can disrupt coding regions, enhance the risk of mutations in tumour suppressor genes, and lead to sustained DNA damage. Susceptible individuals would then expectedly have an increased risk of DNA damage, chronic autoinflammation, autoimmunity and cancer. In light of the current mass administration of nms-mRNA vaccines, it is essential and urgent to fully understand the intracellular cascades initiated by cellular uptake of synthetic mRNA and the consequences of these molecular events.

[exeggcute]

extremely stupid polychondritis moment whenever I get Pissed Off and the resulting stress is all but guaranteed to set off an attack that turns the cartilage in both of my ears bright beet fucking red like a cartoon character. good-for-nothing autoinflammatory response making a fool of me here.

[sommesick]

Autoimmune Registry adds Long COVID to its List of Diseases

The Autoimmune Registry has determined that biomarkers of immune system activity similar to those seen in many autoimmune and autoinflammatory diseases justify the inclusion of Long COVID on its list of diseases.

High levels of antibodies to the immune-system proteins called type I interferons (IFNs) have been associated with severe COVID-19.   Other studies have shown that severely ill patients tend to have a high concentration of pro-inflammatory cytokines, such as interleukin (IL)-6, compared to those who are moderately ill.

The Autoimmune Registry has decided to include Long COVID in its list of autoimmune diseases to support research into this emerging chronic condition.

[tawus]

Except when you have an autoinflammatory disease, i.e. a defective mutation in your immune response DNA, and that's when your body begins to incinerate itself with high fevers and can't stop. The initial invading virus is long dead and pulverised, and you are to die next.

Fever is a hilarious immune response. Our bodies tell the disease “hey, wanna see which one of us dies of overheating first? No? Too bad.” and honestly they’re not even the winners a decent chunk of the time but it works often enough that we never evolved it away or anything. Fantastic work.