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emilyrj.bsky.social
Emily Johnson
@emilyrj.bsky.social
5K followers 2.3K following 1.5K posts
Design, news/book edits, social media, PR, linguistics. Medical/academic research & data. Disability/accessibility in media. Patient advocate. #FBLC #EDS #pwME Same pic, slightly different handles on X, Substack, Mastadon. #Iowa ♿️🏳️‍🌈📚
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emilyrj.bsky.social
Mast cell disorder patients! If you need financial help, apply for a Super T’s Mast Cell Foundation grant! I was selected in 2024.

Apply on www.supertmastcell.org. Last day to apply is October 31! Any questions, email supertsmcfoundation@gmail.com.

#MCAS #Mastocytosis #HaT
Purple, red and white graphic background depicting a smiling white woman with blonde hair holding a sheet of paper and a smiling white man with brown hair. Text next to a graphic of a megaphone reads [Apply today!]. More text reads: [Don’t miss your opportunity to apply for a 2025 grant on August 1st. Ends October 31st]. Logo of the Super T’s Mast Cell Foundation depicted, with a graphic of a girl in purple wearing a cape flying across the T.
October 16, 2025 at 5:58 PM
emilyrj.bsky.social
PSA: Disabled folks and @moderation.bsky.app: @caitoz.bsky.social just posted a montage of disabled people’s content without context on X (about Long Covid impacts and masks) inciting ableist harassment — far right folks do the same to us, yet Caitlin feels we’re at fault for far right behavior
Caitlin Johnstone @caitoz: One reason young men get recruited to the right is because right wing influencers will tell them they have the power to take control of their lives, something young men often do need to hear, but if you try to say that in leftist circles you'll get accused of doing an ableism. 7:32 PM • 9/18/25 Lost in a Dystopian Hell written by Al... : Are you seriously blaming disabled people for the right wing recruiting? Caitlin Johnstone @caitoz: Obviously not. This is one of those dopey Left Twitter feeding frenzies where everyone flips out and spins what someone said in bad faith in order to have a big ego parade about it. I'm not going to spend any energy on this and this is my final comment on this tweet. Emily Johnson (is on Mastadon and Bs: You are reposting disabled people's content out of context, knowing it will drive harassment to us, and blaming us for far right behavior which is straight up victim blaming considering we are almost constantly targeted by the far right who do the exact same thing to us Caitlin Johnstone @caitoz: One reason young men get recruited to the right is because right wing influencers will tell them they have the power to take control of their lives, something young men often do need to hear, but if you try to say that in leftist circles you'll get accused of doing an ableism. Ne Viola Cenzor @CenzorNe: What? I don't get what your trying to say, accused of doing an ableism Caitlin Johnstone @caitoz: [Posts a video montage of several disabled people discussing Long Covid conditions’ impacts and requesting people mask during the ongoing Covid pandemic; one of my tweets from a big thread with multiple sources cited to back up every point is included in the montage, with sources and context stripped, because the purpose is to belittle and harass disabled people educating others on Long Covid and Covid] Emily Johnson (is on Mastadon and Bsky) @emily_rj: Four of the main conditions in Long Covid, which 25-50% of the population now has depending on where folks live, cause exercise intolerance, exercise induced anaphylaxis and developmental genetic energy processing disabilities where folks are not to exercise as it's dangerous 1/2 Emily Johnson (is on Mastadon and Bsky) @emily_rj: Why did you take one of my tweets educating people on disabilities *I have* to incite harassment of me? Emily Johnson (is on Mastadon and Bsky) @emily_rj: Why did you take one of my tweets educating people on disabilities *I have* to incite harassment of me? Why do you think creating a montage of disabled people's content to direct harassment at us is not ableism? Emily Johnson (is on Mastadon and Bsky) @emily_rj: I'm sick of being mass harassed for educating about Mitochondrial Disease/Dysfunction, MCAS, POTS If you have trouble computing, here's some experts, I hope you learn and delete this, and if you don't, I hope they chew you out, because it's ignorant and gross that you did this [Emily quote tweets David Putrino quote tweeting Amy Proal, two leading Long Covid national experts, discussing mitochondrial damage caused by Covid/Long Covid and other infections and pathogens — Amy’s YouTube presentation is on ways these factors genetically change people’s mitochondria causing lasting energy disabilities, and how viruses like Covid are causing aging of our cells] Putrino Lab @PutrinoLab: Amazing talk by @microbeminded2 about the intersection of persistent pathogens and longevity. Insightful and interesting content as always and let's not forget: every time someone says that mitochondria are the powerhouse of the cell an angel gets its wings Amy Proal @microbeminded2: Here’s the video of my talk: youtu.be/OcwxbzqP8Jc Emily Johnson (is on Mastadon and Bsky) @emily_rj: Another expert: [Emily shares a tweet from another Long Covid expert, Todd Davenport] Idk why you think inciting harassment of disabled people makes you not ableist. But if you're targeting us because you're that fragile our disabilities exist, you may as well learn — and you doing this is indistinguishable from the far right's behavior FWIW. [tweet from Todd Davenport begins] Todd Davenport @sunsopeningband: Nice overview here of normal adaptations in mitochondria as a result of exercise training. We have evidence of key abnormalities of mitochondrial proteins in ME/CFS and Long Covid, which may explain why working out doesn't work in these populations: https://t.co/ow9PsNdt6X Emily Johnson (is on Mastadon and Bsky) @emily_rj: Oh look an organization for one of my conditions (which is prominent in Long Covid too, and extremely common in the general population) explaining how and why exercise induced anaphylaxis occurs. Oh no I hope learning something doesn't make you far right! [Emily shares tweet from Mast Cell Action]: MastCellAction @MastCellAction: Exercise can trigger MCAS reactions, with exercise-induced anaphylaxis impacting some of the MCAS community. Sometimes some alternatives can be safer, working with your medical team to find the best option for you. #mcas #mca #mastcellaction #masties #masto #mastcells #exercise
September 20, 2025 at 6:35 AM
emilyrj.bsky.social
To speak of Kirk as a champion of reasoned discussion is also to ignore his frequent calls for the state suppression of his political opponents. “‘Investigate first, define the crimes later’ should be the order of the day,” Kirk declared in an editorial demanding the legal intimidation of anyone associated with the political left. “And for even the most minor of offenses, the rule should be: no charity, no goodwill, no mercy.” Speaking last year in support of Trump’s plan for mass deportation, Kirk warned that the incoming president would not tolerate dissent or resistance. “Playtime is over. And if a Democrat gets in our way, well, then Matt Gaetz very well might go arrest you,” he said.
September 14, 2025 at 12:55 AM
emilyrj.bsky.social
Staggering how many adults hate kids with post-infectious chronic illnesses/disabilities and punish/harm them, never provide safe accessibility in education

I was one of those kids in the 1990s, epidemics and a pandemic since yet many adults haven’t improved www.newschannel10.com/2025/07/23/s...
One parent, Rebecca Sanchez, disagrees with the new policy. She said her 10-year-old daughter got sick a lot last year. "Between the strep throat and the flu, I can say she missed about 17 days," Sanchez said. If her daughter is absent for even half of that time this coming school year, it will now result in a referral to Lawrence County Juvenile Court for truancy. "I have never been for or against homeschool, but because of this new policy, it has definitely changed my mind," Sanchez said. Under the Lawrence County School System's new attendance policy, doctor's notes will no longer excuse an absence. Students will now just be marked absent or present. The policy states that after just three absences, schools will start intervention. If the student misses school for eight or more days, they will be referred to juvenile court.
July 24, 2025 at 4:22 PM
emilyrj.bsky.social
A must-read story by @juliametraux.bsky.social on disabled people, pregnancy and childbirth

As a disabled person with a 9 times higher maternal mortality via #EDS #EhlersDanlos (nevermind comorbidities that also elevate risk), reproductive disability justice is key to survival
NIH researchers examined records of pregnant women with physical, sensory, and intellectual disabilities, finding that any recorded disability led to an approximately equally elevated chance of preeclampsia, hemorrhage, a C-section without clinical indications that it would be appropriate, and other dangers. The study also found that disabled pregnant people were twice as likely to experience severe preeclampsia and eleven times more likely than non-disabled people to die after giving birth. Those failures of treatment are symptomatic of a system not made to support disabled pregnant people, and which therefore puts their lives at added risk. A survey of one thousand OB-GYNs— the results of which were published in a 2018 Health Equity journal article - found that fewer than one in five received any training about the health care needs of disabled people, and about the same proportion felt adequately prepared to manage the pregnancies of women with disabilities.
July 15, 2025 at 10:01 AM
emilyrj.bsky.social
You can call both but this is delicious
Orange and yellow bag of Reese’s frozen fruit banana slices next to honeygram crackers stacked next to a frozen s’more comprised of a honeygram cracker, jumbo marshmallow and chocolate and peanut butter-covered banana slice, all on a plate.
July 14, 2025 at 9:41 PM
emilyrj.bsky.social
#SaltingTheVibes watching @dysautonomia.bsky.social panels on livestream, IKYK!

Another year of excellent clinician lectures and support for patients with #POTS #OI #MECFS #MCAS #EDS and more

Miss out registering? Get conference recordings: dysautonomiainternational.salsalabs.org/2025conferen...
A picture of an orange bowl of edamame with a glass bowl of soy sauce resting inside of it, next to a .9% sodium chloride IV bag hooked up to a home infusion pump, on top of a brown and blue and orange and cream floral patterned bedsheet.
July 12, 2025 at 8:46 PM
emilyrj.bsky.social
A disabled graphic designer, Marketa, made this to help raise donations for my neurosurgical fundraiser! Please boost this post

Next 2 neurosurgeries in are June, with 1-2 more possible neurosurgeries later if I’m lucky and eligible

Donate here: gofundme.com/f/help-emily-get-medical-care

1/2
A pink, blue and purple pastel graphic with a flower and starts depicts an image of me, a smiling white woman with long brown hair with bangs wearing a black jacket, along with text reading: Save Emily! FUNDRAISER FOR LIFESAVING MEDICAL TREATMENT. Emily Johnson, a dedicated journalist, researcher and mutual aid organiser has battled severe, lifelong, life-threatening disabilities that have kept her from working, driving, living independently. Now 35, she finally has access to critical neurosurgical care - but she urgently needs financial support to afford it. Medicaid and Medicare are currently not meeting the full cost of medical care. Your support will help Emily regain stability and independence. Every donation, share, and kind word makes a difference! Current goal: $6,500. • At least 2 more trips to New York for neurosurgical testing & treatment (possibly more trips if further testing is needed). • Specialist care for spine, brain, and head conditions. • AirBnb, rental car, gas, food costs, and essential medical equipment and supplies. Donate via: gofundme.com/f/help-emily-get-medical-care
May 30, 2025 at 10:07 PM
emilyrj.bsky.social
I spoke with @thesicktimes.bsky.social about my experience getting a tilt table test (3 years after I’d already been diagnosed with POTS) — it worsened conditions that I think clinicians should be screening out for TTTs (and giving us Active Stand Tests instead)

thesicktimes.org/2025/04/08/i...
Patients are further harmed when they undergo multiple PEM-inducing tests in a row. Emily Johnson recalled a week of misery at the Mayo Clinic, with back-to-back autonomic tests. Her "tortuous" TTT caused pain across her body, vertigo, and temporary vision and hearing loss. "Some of the symptoms set in later, which is why it's important clinicians take long-term impacts into account and not just symptoms patients report during the test," Johnson said. She and others also discussed how the test harmed their cervical spines, increasing ME symptoms and pain. Despite these reports, people who are prescribed the TTT generally struggle to get doctors to understand or care about the test's risks. An underlying issue is a lack of ME literacy within the POTS and cardiology communities. People considering the test might also want to advocate for less stressful testing conditions, including spreading out autonomic tests with days of rest in between and lying down before and during appointments. Ultimately, concerned patients might want to look for a specialist willing to diagnose and treat orthostatic intolerance without a TTT. According to Johnson, the TTT may be the "gold standard of tests" but it is inaccessible for many people with PEM or other related conditions. She advocates for clinicians to adopt standing tests as routine practice. "There is an order for certain testing and treatments that finds the best results and is safer for patients."
April 8, 2025 at 5:34 PM
emilyrj.bsky.social
Agents left us at gate right after flight canceled. Relative waited for hotel QR code, didn’t work. 5 hours stranded. No transit to air train, hotel shuttle. AA workers ignored us except 1. Nearly passed out. My 2 head surgeries, no sense from @americanair.bsky.social. At hotel no IV fluids left.
White woman with brown hair shaved on top with two head staples from one head surgery and a neck bandage covering a second head surgery site. Exhausted looking off camera.
February 17, 2025 at 2:50 AM
emilyrj.bsky.social
As an editor this caught my eye — he’s not talking about “his husband,” his wife Sara Anne Willette wrote this, yet she didn’t sign it

“Defending marginalized women in science” falls apart when you go after marginalized women in science’s employers and contact police because they disagree with you
Screenshot of text from part of the email Auriel Willette sent to Joy Henderson’s colleagues and peers reads: 12/28/24 https://x.com/Joyhenderson78/status/18734429565 66487234 - had her blocked, she went inside my locked account to steal my photo and that of my husband (Huh? You give me too much credit for hacking-which by the way IS slander-when I need my 19 year old for tech support) https://x.com/Joyhenderson78/status/18732109825 93622449 - ableist (Is it ableist to point out that only one person is masking?) https://x.com/Joyhenderson78/status/18730533908 81866004 - bigotry, racism, sanism, career slander
January 3, 2025 at 9:36 PM
emilyrj.bsky.social
We aren’t nearly as critical of some health industry executives as we need to be

It’s 2025, ambulatory wheelchair users and invisible chronic illnesses and disabilities exist, ADA travel accessibility legal rights exist
Brian Hudson @BocaHudson on 12/30/2024 says: Typical @SouthwestAir flight to Florida! I counted 30 rough pre-boards needing wheelchair assistance. When we get off the plane 28 of them walk off! @FAANews @FlyTPA @FoxNews@cnnbrk @MarkWilsonTV Brian violates disabled passengers’ privacy by posting a nonconsensual photo of them, most of them elderly, getting off the plane and waiting for transit chairs. Emily Johnson @emily_rj on 1/2/2025 says: Hey Brian, why do you think it's OK to take photos of disabled strangers and speculate on their health? You could've made this post without violating privacy of individuals, is @SouthwestAir (Southwest Airlines) going to protect vulnerable people you're exploiting to make an ignorant point? Emily Johnson (@emily_rj) on 1/2/2025 replies: This is you @BocaHudson? Writing for @AvantHealthcare on patient safety, violence against patients, compassion to patients? And you posted a nonconsensual photo of patients on social media angry they have ADA transit accessibility rights keeping them safe Emily Johnson posts article written by Brian Hudson titled “Top Concerns Chief Nursing Officers Face in 2019” posted to avanthealthcare.com Emily Johnson (@emily_rj) replies: You're right Brian, I want to know what @SouthwestAir @FAANews @FlyTPA @FoxNews@cnnbrk @MarkWilsonTV think of a senior vice president working for @AvantHealthcare blatantly violating patients privacy while decrying safe accessible transit services they're legally entitled to Emily Johnson (@emily_rj) replies: Let's tag @NPRHealth and @forbeshealth since they featured you in recent years too, why not
January 2, 2025 at 7:27 AM
emilyrj.bsky.social
Yet again, disability used as an excuse to defend and legally excuse harm and murder of disabled people — lesser charges argued (and successfully won) by the defense because Neely had disabilities that wouldn’t have killed him in that moment *had his killer not strangled him in a chokehold*
The defense presented its own medical expert who said Neely died of a combination of factors, including a sickling crisis linked to his sickle cell trait, a schizophrenic episode, the struggle and restraint by Penny and K2 intoxication.
December 9, 2024 at 8:53 PM
emilyrj.bsky.social
“COVID and Leukemia: What’s the Connection?” May 2023 review on Covid causing and worsening cancers

Vulnerable people are in public spaces! Wear a high quality mask so you don’t infect cancer patients, survivors and other immunocompromised people web.archive.org/web/20240317...
May 31, 2023 – Once you test negative after a bout with COVID-19, it's a great idea to get a full health screening. This is especially important for people who are at risk for, or have, blood cancers like leukemia. If you have blood cancer, you need to have a clear picture of how strong your immune system is – which is extra important if you have any symptoms of long COVID, experts say. That's because most leukemia treatments lead to some type of immunocompromise, meaning these patients have weakened immune systems and therefore have trouble fighting infections they have at the same time. Several studies have also found a potential link between COVID and leukemia, based on patients having the disease shortly after having COVID.
December 5, 2024 at 7:48 AM
emilyrj.bsky.social
“This is one of those days” because you’re having surgery

You’re literally using being temporarily homebound to defend against your desire to use people who are permanently homebound and isolated at home due to High Risk Covid as an insult

Instead of empathizing with us
Celia discussing how she can’t leave the house today and advocates people who can’t leave the house by wanting to use people who are homebound fulltime and High Risk Covid people who have to stay home as an ableist insult to people she is angry with. She has QTd Mary Jane, a disabled person upset with Celia for being laterally ableist about this, to argue that because other people are mean that Celia should be able to use ableist insults stigmatizing all homebound and Covid cautious people. Same screenshot as posted earlier in the thread
December 4, 2024 at 9:08 PM
emilyrj.bsky.social
This was in response to a QT you made of me, it’s about me Celia, he directly tweeted at me, stop lying!
Same screenshot as shared earlier in thread by me
December 4, 2024 at 8:51 PM
emilyrj.bsky.social
This is why people are upset with you, nice try coming here to pretend you don’t know why people are angry you’re shoveling ableism, eugenics rhetoric and hate speech about and to random disabled strangers online because you said you think should get to do so when people are mean
Celia and Oz Katerji engaging in ableism, eugenics and hate speech towards and at disabled people
December 4, 2024 at 8:27 PM
emilyrj.bsky.social
What actually happened was disabled people asked Celia not to use us homebound people as a insult (“do they ever leave their homes”) when responding to others as it demonizes the rest of us. She QTd me with this about then to me. I told her I’m a High Risk Covid Palliative homebound patient.
Celia and Oz Katerji engaging in hate speech, eugenics and ableism about then later towards disabled people
December 4, 2024 at 8:21 PM
emilyrj.bsky.social
Here’s one from Twitter (but she’s on her too, she RTd you) who QTd me after asked her to please stop using homebound people as an insult to others, that I’m palliative High Risk Covid homebound, and she QTd me then this discussion about and at me
Posts between Celia and Oz Katerji engaging in ableism, hate speech and eugenics about disabled people and later in the conversation towards them
December 4, 2024 at 8:17 PM
emilyrj.bsky.social
Please wear a high-quality mask to be safe instead of sorry

Don’t endanger yourself and others by rejecting and mocking masks (particularly people with #EDS #POTS #MCAD #ME who are high-risk for post-infectious damage, as experts continue to note and study) www.southnassau.org/Uploads/Publ...
News The latest news from the Chiari EDS Program (blue graphic of a brain next to headline) On August 28, 2021, The Chiari Neurosurgical Center adopted a new name: Chiari EDS Center, with the opening of new clinical offices at 242 Merrick Road, Rockville Centre, NY in late January 2022 - led by Dr. Paolo A. Bolognese, M.D. (Surgical Director) and Dr. lene S. Ruhoy, M.D., Ph.D. (Administrative Medical Director). Reflecting the renewed focus of the group, all in close cooperation and with the full support of Mount Sinai South Nassau, our multidisciplinary structure emphasizes the comprehensive treatment, prevention, and clinical research of Chiari, Ehlers-Danlos syndrome, and related disorders, including: • Mast Cell Activation Disorder (MCAD) • Chiari I Malformation • Dysautonomia • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome • Postural Orthostatic Tachycardia Syndrome • Styloid Hypertrophy and Eagle Syndrome • Post-Treatment Lyme Disease Syndrome • Immune Dysfunction • Syringomyelia • Craniocervical Instability • Idiopathic Intracranial Hypertension • Intracranial Hypotension • Tethered Cord • CSF Leaks • Hydrocephalus • Small Fiber Neuropathy • Cervical Instability • Cervical Disc Herniations • Lumbar Instability and Dislocations • Dysmotility • Long Covid Of note, we are increasingly seeing patients in the Chiari/EDS/MCAD spectrum struggling with debilitating long term post-viral issues in the wake of the global SARS-CoV-2 pandemic - a condition now widely referred to as Long Covid. Recognizing its urgency, we are actively expanding our clinical practices towards including a detailed protocol to monitor and treat Long Covid, complete with obtaining tissue samples for genetic analysis of patients. Funding acquisition for this project is underway.
December 3, 2024 at 9:49 PM
emilyrj.bsky.social
The time to take Covid/Long Covid seriously and wear high-quality masks if you have #EDS #POTS or #MCAD was always

We’ve known viruses corrode connective tissue, MCAD corrodes connective tissue, Covid causes/worsens MCAD

Experts know this! Mask up www.southnassau.org/Uploads/Publ...
News The latest news from the Chiari EDS Program (blue graphic of a brain next to headline) On August 28, 2021, The Chiari Neurosurgical Center adopted a new name: Chiari EDS Center, with the opening of new clinical offices at 242 Merrick Road, Rockville Centre, NY in late January 2022 - led by Dr. Paolo A. Bolognese, M.D. (Surgical Director) and Dr. lene S. Ruhoy, M.D., Ph.D. (Administrative Medical Director). Reflecting the renewed focus of the group, all in close cooperation and with the full support of Mount Sinai South Nassau, our multidisciplinary structure emphasizes the comprehensive treatment, prevention, and clinical research of Chiari, Ehlers-Danlos syndrome, and related disorders, including: • Mast Cell Activation Disorder (MCAD) • Chiari I Malformation • Dysautonomia • Myalgic Encephalomyelitis/Chronic Fatigue Syndrome • Postural Orthostatic Tachycardia Syndrome • Styloid Hypertrophy and Eagle Syndrome • Post-Treatment Lyme Disease Syndrome • Immune Dysfunction • Syringomyelia • Craniocervical Instability • Idiopathic Intracranial Hypertension • Intracranial Hypotension • Tethered Cord • CSF Leaks • Hydrocephalus • Small Fiber Neuropathy • Cervical Instability • Cervical Disc Herniations • Lumbar Instability and Dislocations • Dysmotility • Long Covid Of note, we are increasingly seeing patients in the Chiari/EDS/MCAD spectrum struggling with debilitating long term post-viral issues in the wake of the global SARS-CoV-2 pandemic - a condition now widely referred to as Long Covid. Recognizing its urgency, we are actively expanding our clinical practices towards including a detailed protocol to monitor and treat Long Covid, complete with obtaining tissue samples for genetic analysis of patients. Funding acquisition for this project is underway.
December 3, 2024 at 9:49 PM
emilyrj.bsky.social
Posting them here bc DMs won’t let me
We know that dysbiosis and dysautonomia are linked in several ways, and patients with dysbiosis don't do well with ringers lactate Also Dysautonomia and MECFS patients can have acidosis issues including but not limited to increased D-acid intestinal bacteria aka D-lactic acidosis which ringers lactate makes worse Ringers can interfere with antibiotics, diuretics, blood pressure drugs, and heart medications — all stuff patients like us typically need for our comorbidities Ringers can cause hyponatremia (low sodium level in the blood) when dysautonomia patients need high sodium levels — this is especially difficult for patients with cerebral spinal fluid leaks or issues who need high sodium via sodium chloride saline in addition to oral electrolytes in order to improve hypovolemia from dysautonomia to a greater extent to compensate for the extra struggle of improving cerebral spinal fluid flow Many of us develop cerebral spinal fluid issues due to intracranial hypertension, and ringers is not great for patients with IIH and IH (or even just Many of us develop cerebral spinal fluid issues due to intracranial hypertension, and ringers is not great for patients with IIH and IH (or even just hypertension in general, saline is preferred) Ringers is also contradicted in kidney issues which dysautonomia patients are more prone to having because we have to take in so much more fluid and sodium than people without dysautonomias so our kidneys work harder and have to filter more Ringers can also cause hypercalcemia Ringers has a shorter half life than sodium chloride which means some patients have to rely on it more frequently because it wears off faster Like sodium chloride, ringers can worsen edema we already have from EDS and/or MECFS and/or dysautonomia and/or MCAS by increasing fluid retention - those of us who have high lactate in muscles (I'm looking at MECFS patients who have extremely high lactate muscle levels upon physical activity, that is typically only seen in professional athletes or people without MECFS after they do a triathlon, but MECFS patients can Like sodium chloride, ringers can worsen edema we already have from EDS and/or MECFS and/or dysautonomia and/or MCAS by increasing fluid retention - those of us who have high lactate in muscles (I'm looking at MECFS patients who have extremely high lactate muscle levels upon physical activity, that is typically only seen in professional athletes or people without MECFS after they do a triathlon, but MECFS patients can get these levels by doing basic activities like walking for 20 minutes or showering or doing laundry) find ringers can worsen mast cell inflammation and amp lactate in muscles - lactate is already raised in many inflammatory conditions, it's far from just MECFS, and lactate can mess up the body's ability to produce and process energy correctly (which is already permanently impaired in energy disabilities like MECFS and Mito Disease/Dysfunction) and cause immunosuppressive impacts (which is tougher for those already immunocompromised, immunosuppressed, immunodeficient, autoimmune which POTS and MCAS have been tied to in research, immune health not working great) Lactate increase prostaglandins, which isn't great Lactate increase prostaglandins, which isn't great for mast cell disorders Research on lactate and mast cells has been different likely because they haven't identified and separated lactate based on who had mast cell disorders and which type and who doesn't - for some ringers calms mast cells, for others ringers inflames mast cells The side effects of ringers cite that it can cause serious allergic reactions and anaphylaxis - so this is an issue in general with mast cell inflammation not just people with MCAS And yes, some of us have had potassium deficiencies and have to take oral potassium, and having potassium overload from lactated ringers because we need intravenous fluids for certain conditions is a really tricky balance
November 25, 2024 at 7:06 AM
emilyrj.bsky.social
Thank you @lisamccorkell.bsky.social and @patientled.bsky.social for speaking to @statnews.bsky.social to keep Long Covid and patients with infection associated chronic conditions at the front of the science and medicine conversation
www.statnews.com/2024/11/08/t...
Lisa McCorkell, co-founder, Patient-Led Research Collaborative Over 20 million American adults and children have long Covid; millions more have other infection-associated chronic conditions and have been suffering for decades. I have deep concern that existing health care access, safety net access, and research funding issues will be made even worse, resulting in severe consequences to Americans' lives, and that more and more people will join our community if Covid continues to spread unchecked. The Trump administration must prioritize ensuring that people can access quality health care, that a safety net is in place and is robust for those who need it, that people have the right and ability to protect themselves from viruses, and that there is significant research funding for long Covid and other infection-associated chronic conditions to get us to treatments and cures. These issues do not just impact one party — we've seen bipartisan support in Congress, and we'll need additional leaders to step up to address this crisis across government.
November 8, 2024 at 10:30 PM
emilyrj.bsky.social
It’s #DomesticViolenceAwarenessMonth! My friend Nevra isn’t on Bluesky but she recently escaped domestic abuse in Pakistan, please donate so she stays housed and can get medical care

💜 We’re at $1,151.61! We need $3,873.64

🙏🏼 Please share, this is an urgent housing need: paypal.me/SaveLizNevra...
Tweets from Nevra on 9/28/24: “Initial Update: Thanks to your generous donations, I've been safe from domestic violence and neglect for the past five months! This is incredible, as escaping this situation seemed impossible without local help for years. I'm still reaching out to local contacts and charities for assistance with housing and medical care, but many local charities don't cater to my specific disabilities and complex chronic conditions. I want to be clear: I escaped only because of your support! I've been advised to rest while trialling different medications, particularly Mestinon, which my neurologist suspects may help with Myasthenia Gravis symptoms. I had great but short-lived improvements with Mestinon, typical for about a third of patients. However, I've been caught in a cycle of crashes, using my improvements to view potential housing options. Despite estate agents assuring me properties were mould-free, I would often collapse upon visiting due to mould exposure. Tweets from Nevra on 9/28/24: However, I've been caught in a cycle of crashes, using my improvements to view potential housing options. Despite estate agents assuring me properties were mould-free, I would often collapse upon visiting due to mould exposure. These reactions have worsened my health, causing neurological attacks, ptosis, facial drooping, and intermittent paralysis, vision loss, and speech difficulties. After a month, the benefits of Mestinon wore off and it worsened my GERD. Currently, I can't trial more medications or continue house viewings, but l've moved to a cheaper, mould-free hotel! They've kindly provided a discounted rate and have housekeeping staff acting as caregivers, offering wheelchair assistance and other accommodations. My previous hotel cost 644,000 PKR / $2,319 USD / GBP £1,734 per month (excluding food, laundry, and medicines). The current hotel charges 300,000 PKR / $1,080 USD / GBP £807, allowing me more rest! Tweets from Nevra on 9/28/24: One major obstacle in finding stable housing is discrimination. No roommates are willing to sublet to a disabled person, and most landlords won't rent to young disabled females. Being unemployed complicates this further. I need to raise 12 months' rent for a secure, mould-free place, excluding utility bills and basic furniture. I'm continuing to advocate for myself, pushing for a laparoscopy and consultation with a vascular neurosurgeon. I live with daily pain levels between 7-9 and contracted a virus on the 3rd of September, which has further hindered my health. I can't fundraise or take action without your help. A more thorough update will follow soon! recently turned 29 on the 6th of September and would like to organise a birthday watchathon and fundraiser for my laparoscopy and one more month of hotel stay. I continue to experience paralysis for up to 13 hours.
October 5, 2024 at 7:18 PM
emilyrj.bsky.social
Terrible news for #POTS and #OrthostaticIntolerance patients who rely on Normal Saline Lactated Ringers IV fluids to stabilize dysautonomia hypovolemia issues @therealdoctort.bsky.social
Tweet from physician Sayed Tabatabai on October 3, 2024 reading “Good thing I don’t use much Normal Saline or Lactated Ringers…. wait what.” In response to a screenshot of a report reading “Due to significant damage from Hurricane Helene, Baxter's manufacturing site for IV fluids (60% of national volume) is closed to production. Disruptions are expected to continue for several months. While many types of IVF are impacted, the greatest impact is limited supply of Normal Saline and Lactated Ringers. Your help is needed to conserve IV fluids for the most appropriate patients.”
October 3, 2024 at 7:50 PM