Anyone whose handle is @sfdirewolf.bsky.social is a BAMF. I’m proud to have followed this disabled oracle and thankful for the reminder to keep sharing our stories.

My fellow chronic illness & Long Covid sufferers who don’t have the words to describe the mind numbing fatigue - listen to Lance’s description in Nevertheless, Persisting with Amy Blackstone. (starts at 7:15) Normal words cannot be used for abnormal things. open.spotify.com/episode/74CF...

Patricia Lockwood wondered if her Long Covid book was “the book that no one wants to read. This is the time no one wants to read about.” Her friend replied, “Sometimes someone has to come along and put a wreath on the tomb of the time.” Here’s my wreath. To raise awareness. You don’t want LC.

More hope for Long Covid🌈 from Stellenbosch University; “identified the most predictive biomarker combinations, enhancing diagnostic reliability and paving the way for personalized medicine approaches. www.su.ac.za/en/faculties...

Internet Gold! Take this man to Chez Paul. He and his brother would like to dine.

Reverse-LC trial at Univ. Of Minnesota four month visit ☑️ Happy to report as of today there are 110 Long Covid participants over four sites. The goal is 550. The trial coordinator I met with said there is talk of adding 13 more sites for accessibility. Hope 🌈🌈🌈

My conundrum single day with Long Covid ⬇️ “In an attempt to get fit I could do long term damage to my body, and in an attempt to avoid that I could do long term damage to my body.”

“This is the book that no one wants to read, right? This is the time no one wants to read about. This is the thing we were all warned against. And Sally said ‘Sometimes someone has to come along and put a wreath on the tomb of the time.’” @tricialockwood.bsky.social Thank you!

Long Covid is common - ~1 in 5 people have it, and it's on the rise. Reinfections add to the burden. It's the most common chronic condition in children. Actual coverage on this at last from CBC

Perhaps my state & city as well as and our National departments of health will follow Durham County’s lead on educating & spreading awareness of Long Covid. @idph.bsky.social @cdph.bsky.social @hhsofficial.bsky.social @alt-hhs.altgov.info

My Long Covid rehab doc predicted it would take 10 years to have answers. That was five yrs ago. Hope is studies likes this 🌈 “These findings may help explain why females are more susceptible to LC and offer insights into biological pathways that could be targeted in future interventions.”

It still surprises me when someone says “What’s Long Covid?” And it motivates me to keep sharing my story. The more we can put a personal face to the unknown, the more awareness we can raise. Awareness ➡️ research ➡️ treatment a.co/d/gpSIegA

University of Otago said participants told the researchers: 'I've tried over 20 different forms of treatment and therapy'; and 'I almost wish I'd been in a car accident because then at least I would have some support'.” Impossible situation for Long Covid patients when doctors are at loss.

Chills.

This ⬇️ Reason #9,306 to Stop the Stigma of chronic illness. It is not in your head. You are not making it up. Your symptoms are real and valid.

A mask can save you from a lifetime of disability. One infection = five years disabled. You don’t want Long Covid. Let me be your cautionary tale. a.co/d/8N3adEJ

The World Health Network (WHN) is gathering stories to raise awareness about Long COVID. We want to hear from those with lived experience — patients, caregivers, clinicians, and advocates — so we can share your stories and help others understand the impact of Long COVID.

“It’s not all in their heads” was then, and is still now, a dangerous tagline. We who suffer from Long Covid are still fighting to Stop the Stigma with the public and the medical community. We cannot try harder. We are not faking. We are not abusing the system. 1 infection = 5 yrs disabled

“These images clearly portray adaptation, despair, persistence, & quiet revolt of these participants. A rare outing in someone’s new wheelchair. A medical journal documenting continuous pain for dismissive doctors.” Sharing Long Covid stories: awareness & empathy ➡️ research & treatment.

LFG! 🌈🌈🌈🌈

We shouldn’t need a blood test to Stop the Stigma of chronic illness, but I’m grateful one has been discovered. Science is catching up to what those who’s suffer have long known: We can’t try harder. We aren’t faking. We aren’t gaming the system. ME/CFS & Long Covid are real & debilitating.

Hope is a verb 🌈🌈🌈 “Understanding the biological pathways opens the door to developing targeted treatments and identifying which patients might benefit most from specific therapies.”

If my story could be used as a Long Covid cautionary tale, at least something good would come from five long years. I tried to write about energy limitations in such a way that the reader feels the impact and would hopefully say “I never want to be her” and stop rolling the dice. a.co/d/i2cxQcw

Nothing better than randomly picking up @bridgetcrocker.bsky.social book @milkweededitions.bsky.social while visiting Univ of Minn for a Long Covid study and reading our lives intersected in CA. Hubby & I saw the same sign when we rafted here with his buddies while at Edwards AFB. #BookSky

“A sound democratic government owes people the truth about the potential long-term harms of COVID-19. Minimizing COVID-19 is not equitable or inclusive, it’s not democracy and it’s a violation of the centuries old social contract and a reversal of the decades of public health progress.”

Dr. James C. Jackson of Vanderbilt University takeaway from today’s IACC Expert Panel on Long Covid and other chronic conditions: Brain fog is not an accurate term. It needs to be referred to as brain damage. Yup.

Long Covid and Infection Associate Chronic Conditions hope looks like the expert panel at today’s case competition at University of Michigan 🌈🌈🌈 Exciting to hear the great minds committed to researching diagnosis, identification, and treatments

The Long COVID Treatment Trial – Tirzepatide (LoCITT-T) is officially open for enrollment for people with Long COVID in: Alabama, Alaska, California, Florida, Illinois, Indiana, Michigan, Ohio, Pennsylvania, Texas, Utah longcovid.scripps.edu/locitt-t/?ut... 1/16

Covid is not harmless. My Long Covid symptoms mimic Autism - sensitivity to stimuli Stroke - speech & motor delay Both conditions that involve the amygdala. My dedication to awareness in hopes of preventing others from suffering is greater than my embarrassment of the brain damage I’ve incurred.

“We need to bring awareness. I think that’s the biggest thing,” says Dr. Catherine Clark. Educating others about Long Covid involves more than sharing information. For the message to be effective and bring about real change, it’s important to create a personal connection. Share your stories 🌈🌈

I’ve been waiting for Long Covid to be a checkbox on medical forms. This is a start 🙌🙌🙌🙌

Broadcast wide and far: Long Covid declaration Educate doctors, lawmakers, insurance companies, friends & family. longcovidriseup.eu/lc-declarati...

Stop the Stigma of Chronic Illness by sharing your story. I was greatly affected first 2 years of Long Covid & most was self-inflicted because I grew up with: “They” should try harder “They” are faking “They” are milking the system. “They” is me. And no, I’m not. Disability can happen to anyone.

“Findings link intestinal dysbiosis with variant-specific pathogenicity and highlight monitoring gut microbial changes” Research stops the stigma, informs doctors ➡️ insurance covering gut microbiome tests, analysis & treatment. Recovery is hard if you can’t eat or continuously shit your pants.

I just want to make this *abundantly clear*. When “experts” say COVID-19 is mild for kids… THEY HAD, AND HAVE NO IDEA WHAT TEN YEARS WORTH OF INFECTIONS WILL CAUSE.

The IACC Case Competition is happening this Friday! Here is the link to sign up to and virtually. I cannot wait to hear what University of Michigan students came up with to help those who suffer from chronic illness and Long Covid. www.bus.umich.edu/Conferences/...

Sharing our Long Covid stories works! It seems repetitive and tiresome but absolutely necessary. Realizing symptoms have real impacts on people and their families leads to empathy and understanding. Spreading awareness eventually travels up. My story: a.co/d/818zr0q

“It’s almost like Kennedy joined the fight against chronic diseases, but is on the side of the diseases.” @effies.bsky.social on point! Together we can stop the pull yourself up by your bootstraps mentality of healing. “The time for action is now.”

“Long COVID is real. It’s wrecking lives. And it’s not going to stay hidden forever. We deny. We look away. But eventually, the truth gets loud enough. If you’re sick, hold on. The tide is turning. The world will eventually see what you’ve been enduring all along.” Keep sharing your stories!

Insurance disregarding doctors expertise should concern us all. I understand the need for checks and balances but “playing chicken” with someone’s life has gone too far. www.nbcnews.com/health/cance...

Stigma keeps people quiet. When you repeatedly hear…. Chronic illness means you’re weak Chronic fatigue means you’re lazy Dynamically disabled means you’re faking Financial support means you’re milking the system you hesitate to share your story. Time to fight back & speak up. a.co/d/cqEi5Rd

“Pharmacists can “really try to get the message as much as possible to anybody that long COVID exists, that it can look different than in adults, and that you should talk to your pediatrician” to consider evaluation.” Spreading awareness on all fronts!

The “transdiagnostic genetic vulnerability that reaches far beyond FM affecting core neurobiological systems: central nervous system excitability, dopaminergic/serotonergic signaling, neuroimmune stress It is found in ME/CFS, chronic pain conditions, IBS, PTSD, depression” Identifiers ➡️treatment

Change the cultural attitude of success over health. “Perfectionist mentality has a negative side. Inner critic was so strong. Deal with whatever misery until you accomplish the goal.” Jonathan Toews sounds others who’ve been sidelined by Long Covid. youtu.be/eH3EgEsTwXA?...

“And every single step, I do alone. Because most of my colleagues still don’t believe in Long COVID or ME/CFS.
Because there are - no dedicated clinics.
- no institutional support.
- these patients are invisible to the system. This is a collective problem. It requires a collective solution.“

One infection = Disabled for 4.5 years Speech therapist used Parkinson’s exercises Physical therapist used stroke & Parkinson’s exercises Clinical trial for rheumatoid arthritis med I share my stories to spread awareness & let others know they are not alone. a.co/d/fWcmMnk

One infection = Disabled for 4.5 years Speech therapist used Parkinson’s exercises Physical therapist used stroke & Parkinson’s exercises Clinical trial for rheumatoid arthritis med I share my stories to spread awareness & let others know they are not alone. a.co/d/fWcmMnk

Thank you @longcovidcan-co.bsky.social for spreading awareness. The more you know……

Start Here: If you think your child may have Long Covid From @longcovidfam.bsky.social This is where to begin. Our Start Here guide walks you through what to look for, what questions to ask, and how to talk with your child’s clinician or school. hubs.ly/Q03P6mLp0

According to a headline “Long COVID Brain Fog Isn’t ‘All in Your Head.’ Scientists Now Know the Cause,” and while it’s important to note that brain fog isn’t all in your head, it’s also important to remember that Covid’s lasting harms are not limited to your head.