Are you a #pwME / #pwLC / #NEISvoid, desire to be involved in advocacy or community in some capacity, but unsure how to get started or where to go? Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents] #MillionsMissing #MyalgicEncephalomyelitis #LongCOVID

My legs, feet, hands and arms all shake shake. I have it on video. No neurologist seems to give a flying fruit cake.

Yesterdays IV saline has brought some respite to the amplitude and frequency of leg cramps, muscle stiffness and twitching. 🦵 A very welcome side effect.

Auditory hallucinations and Long Covid: Mine happen at night, usually right when I’m about to wake up from an MCAS wake up (every 15 min -1 hour for me). It’s not always, but it’s right after that moment that I transition from lucid dream to wake. However, I did have one in the middle of the day

OMG I FREAKING LOVE IV SALINE. I get my brain back for a few hours. It’s like I’m walking through a clouded mist when I need to find words and then the sky opens and the sun shines brightly and can run find and find words quickly. Sometimes its only hours, sometimes days but HOLY MOLY ITS NICE!

@imanibarbarin.bsky.social just posted a video about why disabled adults need other disabled adult friends. This is why I share my experience with Long Covid/MECFS and how much I appreciate when others candidly do the same. We are stronger together. www.instagram.com/reel/DR7rQHP...

I emailed as well. And a patient union - yes, please!!🙏🏻

We just got published! 🥳 "Brainstem dysfunction as a potential etiology of #MECFS and #LongCovid: A mechanical basis” by Jeff Wood, @thosvarley.bsky.social @hiimjakekthx.bsky.social @artasemita.bsky.social @tessfalor.bsky.social @kaufmanmd.bsky.social www.sciencedirect.com/science/arti... 1/6 🧵

Seems fine, mild even?

With treatments I feel like I’ve made all the wrong choices this year. Nose PRP - drive to Stanford lowered baseline Statin - ended up in ER, lowered baseline Maraviroc - 1.5 months of extreme anxiety - lowered baseline I don’t have much more baseline to give. Now, only focus is rest.

“Instead of telling patients ‘I don’t know what’s wrong,’ we should be saying, ‘This meets the criteria for Long Covid.’” Although the info isn’t groundbreaking, hope looks like the AAMA educating medical assistants on what Long Covid is. Plus offering CEUs. www.aama-ntl.org/docs/default...

"You seem fine to me." Thanks. It's called acting.

Has anyone had luck with any HRT to alleviate some long covid symptoms? Are there any papers on this?

Grateful to these folks (headed up by patient researchers!) for getting the #MESpine / mechanical basis hypothesis for ME into the scientific literature 🙏 I’m currently pursuing CCI treatment & hoping it will help alleviate my ME www.sciencedirect.com/science/arti...

Heat intolerance from dysautonomia means it’s 40 degrees out, yet I have every window open, I’m in a shirt and I’m still sweating 🥵

No sleep at all last night. Stuck in wired phase. Took a lorazepam (I only do this when I’m desperate bc I feel awful as it wears off) and slept for 1.5 hours. Felt a bit better just from that. Did I mention how much I hate Long Covid?

Yale scientists reviewed 100 years of records and found that Long COVID is part of a larger pattern. Viruses like polio, SARS, and EBV have long caused lasting illness in some people, often through immune dysfunction www.cell.com/trends/immun...

This is a creative idea that I think could be incredibly cathartic. Writing letters to loved ones who’ve passed: www.postalserviceforthedead.com

I was diagnosed with COPD two years into my long covid journey. Both the pulmonologist and other docs have said, “ArE YoU SuRe YoU’vE NeVer SmOkED?” But I keep seeing all these damn papers on lung inflammation and COPD post covid. Like are ya’all not keeping up with the literature? 🤨

THIS!

“Long COVID is real. It's wrecking lives.” Continue to share your stories of how Long COVID wrecked your life to keep COVID in the forefront of people’s minds and hopefully stop others from suffering the same fate. My story: www.sueponcin.com

When asked about clinical trial participation, Morris added, “Unless you’ve gone through what I’ve gone through, you don’t understand what it’s like to be willing to try anything once, if it helps. And if it doesn’t, then [you] learn something from it.” I couldn’t agree more!

Pacing is like playing a game of soccer except the goal is invisible and keeps moving.

“Twenty-eight cohorts with a total of 977,434,207 participants... We revealed a 40 % increased risk…of mental disorders in patients with COVID-19 compared with non-exposed individuals” Read that again: A 40% INCREASED RISK OF MENTAL DISORDERS pubmed.ncbi.nlm.nih.gov/41086559/

“Non-disabled people do not expect anger. Loneliness, gratitude, and a quiet resilience are the emotions we are allowed to express. However, as Wong shared, in many tweets, blog posts, essays, and talks, “f— that s—!””

Small sadnesses when being chronically ill come up often from the unexpected. Like, when I see Spotify wrapped coming out which used to be so much fun. Music is a quick way to cause PEM for me so I can’t listen to music at all anymore. Another reminder of what Long Covid exempts me from.

I woke up to a newsletter from a long covid patient who is also a doctor titled, “Chasing the root cause might be setting back your health.” It used words like “hypervigilance” and “reclaiming your life”. What a bunch of bullshit. Doctors cannot seem to shake the paternalistic

I hate how weak my arms are, especially when I’ve over exerted. I use pillows under my arms when typing or on the phone bc they get fatigued so fast 😣

Emory researchers followed 10 rhesus macaques and found that even mild COVID-19 caused months of neuroinflammation and behavioral changes, including impaired memory, taste, and sleep, mimicking long COVID in humans. www.researchsquare.com/article/rs-8...

After a certain amount of days on an antihistamine my body starts to get restless legs at night, making bad sleep worse. So I have to go a day without it to help my system settle, which means I have crazy MCAS sleep full of vivid dreams, night sweats and constant wake ups. My poor body is tired.

😲 this is an astounding statistic

“Individuals with post-COVID condition reported lower work ability than those without the condition, with no meaningful change over the 3 years following infection; a higher proportion of those with post‑COVID condition experienced worsening physical and mental work performance.”

'What surprised them was that 16.3% of those babies received a neurodevelopmental diagnosis by three years, compared with 9.7% of the babies who were not exposed to COVID-19 in utero'. www.propublica.org/article/covi...

www.giftsforme.org New endeavor

Chicago Reader: 'After a diagnosis of long COVID, cellist Joshua Roman builds community around Immunity' 'His Chicago appearance on December 7 at the Arbory..it’s intended first and foremost for audience members living with long COVID and other chronic illnesses' chicagoreader.com/music/concer...

Day 1072—Why does ME/CFS score so low in quality of life? Because it stunts one's ability to perform daily activities. You can't function. You can't attend functions. Try as you might to carefully pace, PEM crashes are inevitable—and severe. So you remain. Alive but not living; barely even here.

Alright - soliciting all opinions on 2 day CPET. Honestly, I just need to talk this out with other sick folks. My goals: I want, on paper, the cognitive and physical abnormalities of this disease. Neuropsych eval, 2 day CPET, neuropsych eval From which I am expecting a horrid crash.

One of my first tells when I’m not doing well is that my voice drops a couple octives and becomes raspy. We were watching a Lil Wayne interview the other day and my spouse goes, “This is exactly what you sound like when you’re crashing.”

Being knowledgeable about Long Covid means that often influencers give away that they might have LC and not know it. Just from this week I’ve seen: “Perimenopause makes my inner ears itch” “Every time I have a short stressor I loose my voice” No one gets covid and emerges unscathed.

West Central Tribune: 'Susan Estrich: The importance of being grateful' 'My daughter has spent the last year searching for answers that don't exist for the collection of syndromes — ME/CFS; POTS; and dysautonomia — that we collectively call long covid' www.wctrib.com/opinion/colu...

This is what I think about when I see “wellness” and “longevity” folks peddling products. I think we’re coming to realize the root of inflammation and resultsnt accelerated aging is infection and chronic pathogens.

Davenport references the International Consensus Criteria (ICC) for ME In the ICC post-exertional malaise (PEM) is called post-exertional neuroimmune exhaustion (PENE). I much prefer the name PENE. Neuroimmune exhaustion matches my experience far better than malaise. 2/

#chronicillness #chroniclife #Spoonies #Spoonie #ChronicallyIll #Disabled #Disability #ChronicPain

About a year into my sickness I sat down with my spouse and said, “I’m giving you permission to leave. I don’t want to ruin your life.” When Phillip Hoover writes I feel like he’s telling mine and so many other’s story as he tells his own. www.nytimes.com/2025/01/31/s...

At the University of Texas, researchers reviewed findings from over 800 MS patients and new mouse studies to propose this. Multiple sclerosis may be driven by T cells attacking the brain after reacting to Epstein-Barr-infected B cells. www.sciencedirect.com/science/arti...

PEP: 'Long COVID: the lingering effect of the pandemic' 'Like many invisible disabilities, Long COVID can lead to isolation, misunderstanding, and invalidation from those unaware of the condition’s severity' 'Long COVID robbed me of the life and the self I once knew' www.pep.ph/lifestyle/he...

The only thing I want to buy this Black Friday is priceless. I want my health back.

The Sick Times: 'You know someone with Long COVID. They need you to ask about it genuinely.' Written by Philip Hoover 'If community-building is a bulwark against autocracy, then asking after one another might be a good place to start.' thesicktimes.org/2025/11/28/y...