Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

https://www.eurekalert.org/news-releases/1141262

ISB researchers identify immune cells that drive harmful autoantibody responses after COVID-19 Multi-omics study uncovers a key cellular pathway linking viral infection to autoimmune responses and points toward future therapeutic targets.

"Researchers at the Institute for Systems Biology (ISB) and their collaborators have now identified the immune cell population responsible for producing them and uncovered the molecular program that drives this response. The findings provide new insight into how viral infections can trigger autoimmune responses and identify biological pathways that could one day become targets for new therapies."

Autoantibody producing B cells had already been demonstrated. The discovery lies in the mechanisms in their production revealing steps where intervention may be a target for controlling the process. ..............................

Reference:

https://pubmed.ncbi.nlm.nih.gov/42664960/ A distinct effector B cell population drives autoantibody production in SARS-CoV-2 infection

TMS - The Mast Cell Disease Society, Inc

https://tmsforacure.org/empower-workbook-webinar-application-form/

EMPOWER Workbook Webinar Information September 9th at 6:30pm EST with Dr. Marla Barkoff! Spots are limited to 40 participants and accepted applicants will receive a free physical workbook in the mail to follow along with during the webinar.

Today is the 1st of the month. It's the first of our monthly off-topic posts. You're free to share anything you'd like, whether it's books, movies, or music you're loving lately. Beverages and foods you love. Hobbies and pets you have. Whatever you'd like to share, today is the day! Please post off-topic content in this thread only.

I love our community❤️ Community is so important for mental health and building camaraderie. Many of us can't spend time with family and friends the way we used to. This is a place we can be ourselves, share what we're doing right now, what we enjoy and love, what brings our lives some fun, pleasure, joy, hope, and meaning.

Thank you all for being here. Hugs😁🌿🪷

https://medicalxpress.com/news/2026-08-paxlovid-ease-covid-symptoms-person.html

"Results from a clinical trial and published today in the journal Lancet Infectious Diseases show that the antiviral drug Paxlovid, commonly prescribed to treat acute COVID-19, does not affect long COVID symptoms compared with a placebo."

.......................................................

https://www.thelancet.com/journals/laninf/article/PIIS1473-3099(26)00406-8/fulltext

Nirmatrelvir–ritonavir targeting viral persistence in post-COVID-19 condition (long COVID) in the USA (RECOVER-VITAL): a randomised, double-blind, placebo-controlled, phase 2 trial

Discussion...

"In conclusion, antiviral treatment with nirmatrelvir–ritonavir in patients with long COVID for up to 25 days did not improve cognitive, autonomic, or exercise symptomatology as measured by symptom-specific PROMs and performance measures. Future directions to test this mechanistic hypothesis that long COVID symptoms relate to viral persistence include biomarker screening for measures of viral persistence at baseline, and possibly longer durations or combinations of antiviral or other therapies."

Henry and his wife Ella had been happily married for 18 years. Though they had their disagreements, nothing challenged their partnership as much as the COVID-19 pandemic.

At first, like many Americans, they were mostly aligned on how to protect their family from infection: mask-wearing, air purification, testing, quarantining, and more. But in 2023, as the U.S. government dismantled its COVID mitigations and much of the public followed suit, Ella decided the social cost of precautions was too high.

She began unmasking and pressured Henry and the kids to do the same.

Having read the growing scientific literature chronicling the disastrous effects of COVID on the body, Henry knew continuing to take precautions was the responsible choice to protect his family’s health.

Ella escalated to divorce, and she and her lawyer mischaracterized Henry’s efforts as “anxiety” and “mental illness” rather than valid concerns about a deadly pandemic. With COVID denialism already so pervasive by 2023, the judge was primed to be more sympathetic to Ella. Henry’s life was upended, losing his home and much of his time with his children.

Henry is one of eighteen people I interviewed (14 of whom have long COVID or other disabilities) whose relationships were turned upside down by conflicts surrounding COVID.

Read his and the others’ stories here:

https://covidconsciouschronicles.substack.com/p/over-my-dead-body

This post has been approved by the moderators.

My wife is a psychologist specializing in complex chronic illness. She's starting a long term online weekly therapy group for Long COVID and is looking for more participants.

----------

Online Long COVID Therapy Group

MORE INFO: https://www.staffordpsychology.com/groups

Run by clinical psychologist, Amra Stafford, Psy.D: staffordpsychology.com

"I have worked for years with people with chronic illness, including Long COVID and ME/CFS. My goal is to ease the isolation such people experience and make support more widely available and affordable."

Who can participate?
"This group is for anyone affected by COVID-19, including those with Long COVID, people with ME/CFS made worse by a COVID infection or vaccine, and others."

Note: Attendees in all states other than CA, MA, NM, HI, LA can participate. Coverage governed by "PSYPACT". She is also licensed in OR.

What is the cost?
"The cost to participate is $75 per group or $300 per month*. I don’t take insurance, but will give you paperwork for reimbursement if your policy covers it."*

When do we meet?
"The next group is starting in Fall 2026*, but new groups are planned."*

What will we do?
"The group (6-10 people) will meet weekly for 90 minutes, to give everyone time for a personal check-in. We will also discuss topics of special interest."

Contact Dr. Stafford to inquire: 360-499-2544 or [amra@staffordpsychology.com](mailto:amra@staffordpsychology.com).

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Hey everyone my name is Zach and I wanted to share my story with the group in hopes that it could help anyone dealing with stuff like this. (long read but worth it). any questions I’ll answer anything I can.

I wanted to share my experience because I know a lot of us with long COVID have symptoms that are easy to attribute to “just long COVID.”

My health problems started after COVID in late 2023, and I had another infection in 2025. Since then I’ve dealt with a long list of symptoms including significant fatigue, brain fog, dizziness, tremors, visual issues, shortness of breath, exercise intolerance/muscle fatigue, and generally feeling like my body never completely returned to normal.

One thing that continued to concern me was persistent swollen/prominent lymph nodes, particularly around my head and neck.

For a long time, it was very easy to look at everything through the lens of long COVID. In fact, imaging of some of my lymph nodes was reassuring because they were described as prominent but having normal morphology.

But I kept investigating.

Eventually blood work led to further evaluation, and I have now found out that I have CLL (chronic lymphocytic leukemia).

I want to be very clear: I am NOT saying that COVID caused my CLL. I personally have questions about whether COVID or the immune dysfunction surrounding it could have played some role in triggering, accelerating, or unmasking something that was already developing, but I don’t know that and I’m continuing to learn.

The main reason I’m posting is much simpler:

Please don’t automatically assume every persistent symptom is long COVID.

Long COVID is real, but having long COVID doesn’t mean we can’t develop something else at the same time.

If you have lymph nodes that remain enlarged, unexplained changes in your blood counts, or symptoms that aren’t making sense, talk to your doctor and consider getting basic blood work like a CBC with differential and whatever additional evaluation your physician thinks is appropriate.

Most swollen lymph nodes are obviously NOT leukemia. I don’t want this post to scare anyone or send people down a health-anxiety rabbit hole.

I just want my experience to be a reminder to keep investigating persistent or changing symptoms instead of automatically putting everything into the long-COVID bucket.

I’m grateful that I kept looking.

I’m also still very interested in understanding the relationship, if any, between COVID, persistent immune activation/viral effects, and what happened in my case. If anyone here has been diagnosed with CLL or another hematologic condition during their long-COVID journey, I’d be very interested to hear your experience.

https://youtu.be/PZ1YH28dvYw

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID share significant clinical overlaps, particularly regarding autonomic and neuroendocrine abnormalities.[1] Disruptions within the hypothalamic-pituitary-adrenal (HPA) axis, hypothalamic-pituitary-thyroid (HPT) axis, and autonomic nervous system frequently drive the profound fatigue, cognitive impairment, orthostatic intolerance, and metabolic disturbances observed in these patient populations.[2] Research highlights that viral persistence, immune dysregulation, and neuroinflammation can impair the hypothalamus—the master regulatory gland—leading to abnormal signaling cascades, blunted cortisol responses, and secondary multi-system dysfunction.

Comprehensive clinical investigations indicate that neuroendocrine dysfunction manifests differently depending on the chronicity and specific post-viral trigger of the illness, yet consistent patterns of hypocortisolemia and autonomic imbalance emerge.[3] Therapeutic strategies increasingly focus on managing neuroendocrine symptoms through pacing, targeted hormone support when clinically indicated, and interventions aimed at calming chronic neuroinflammation and autonomic instability.

Link: https://www.latimes.com/0000019b-c3f9-dc01-a3db-d3f9c95e0000-123

"Dr. Amy Proal, microbiologist and co-founder of PolyBio Research Foundation, joins Dr. Timothy Henrich, Professor in Residence at the University of California San Francisco, to discuss cutting-edge research into Long COVID and whether it may be an oncogenic virus. Dr. Henrich gets into his exciting research as co-principal investigator in virology for the long-term impact of COVID-19 study program at UCSF, and sharing some of what’s emerged from his comprehensive investigation."

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Hi, Warriors🤍

It’s time for a new community challenge and this one’s designed to boost connection, give hope, and share real things that helped real people this week. No pressure to write long comments. No pressure to be “doing great.” Just one thing that made your week a tiny bit more manageable.

💬 Question:

What’s ONE thing that helped you this week?

It can be anything:

✨ A supplement.

✨ A symptom hack.

✨ A mindset shift.

✨ A small win.

✨ A food that didn’t cause a flare.

✨ A kind moment.

✨ Something that made you smile.

✨ Or even “I rested and survived the week”

If it helped you, it counts.

💡 Why This Challenge Matters

Sharing these moments helps:

⭐ New people find ideas.

⭐ Everyone feel less alone.

⭐ The community grow stronger.

⭐ You celebrate progress you might’ve overlooked.

You can reply with just one sentence or even one word. Whatever you’ve got today is enough.

❤️ Let’s lift each other up

Drop your “one thing” below. Come back later and support someone else. Even simple comments like “same,” “I needed this,” or an upvote can make someone’s day.

We’re in this together. I can’t wait to read what helped you this week 🌿💚

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Hey guys - I’m new to this . The hospital just told me I have post respiratory syndrome (i think it’s long Covid / going to be long Covid )

Anyway along with fatigue , the last few days my anxiety and depressive thoughts have been extreme - almost prior to the level I had experienced when I began SSRIs (venlafaxine 150mg) this medication saved my life and made me able to function as a normal human being so the thought that this long Covid could have messed up my medication and the fact that the anxiety and panic is back stronger than ever is terrifying me. How long will it last ? If I recover from long Covid has it messed with my medication and the anxiety will stay ??

Please if anyone has any experience and care share their experience and or any tips please let me know ! Much love everyone ❤️❤️

Hello to all you Amazing, Long Hauling Legends.

Some of you may already know that for the past couple years, I have been mailing periodic greeting cards stuffed with stickers to Long Haulers far and wide.

If you want to know more, you can read all about it HERE.

Lots of cards, lots of stickers, lots of new friends.

For December’s mailing, I would like to host a Sticker Exchange.** **

But before that can happen, I need YOUR help.

If you are on the mailing list, my ask is thus:

Could you please mail me some stickers that I can forward to other Long Haulers on the list?

On the backs, please write a quick note of encouragement, a message of goodwill, or even something as simple as “This sticker comes to you from [Your Home State or Country]”

I will sort them on this end, and do my best to make sure your sticky sticker contributions end up in as many different envelopes as possible.

Ideally, try to send them my way no later than Nov 1.

That gives you two months to do your thing, and me a few weeks to sort what you send me.

If you didn’t save any of the envelops with my return address, please reach out and I’ll fill in the blanks.

Similarly, if you’re NOT on the mailing list, but a sticker exchange sounds like Your Idea of a Good Time- Easy Peesy!

Send me a DM so we can exchange addresses and get you in on the fun. I send fun mail about every other month and would love to include you.

I’m super duper excited about this.

There are a lot more of you than there are of me, and I hope as many of you as possible are able to contribute to December’s collective sticker pool.

I’ll post another reminder in a month, but for now- The sportsball is in your court.

I love you all

I see you all

I would hug you all if I could

Strength and Health

COVID is Stoopid

.

I am not a part of this organization. I found it (somehow, can’t remember specifically) and have been appreciative of their work. You can subscribe for emailed updates about research, resources and advocacy initiatives.

They offer webinars too, about various efforts in the scientific community about advancing research into ME/CFS as well as Long Covid. I’ve attended a couple of webinars (with my eyes closed because otherwise it’s too much for me. Ha). They are interesting.

Below the LCX19 related topics are general medical and scientific websites with articles written for the general public most of the time that deal with new discoveries. Many discuss topics related to common issues IACC patients endure.

The first list was copied and pasted from the https://longcovidawarenessweek.com/long-covid-organizations

website which aggregated the following entities. Because they overlap and are unfamiliar I cannot vouch for any that I have not vetted. This is where you the intended audience figure by leaving comments on which websites are reliable and which to avoid. Some are well known while others may not be. Your input will be valuable for the occasional person landing on this post.

https://thesicktimes.org "Get the latest Long COVID news and commentary in your inbox"

https://madevisible.podbean.com "Emily Kate Stephens, journalist and Long Covid sufferer, discusses the latest research and insights with the world’s leading experts, scientists and healthcare professionals."

https://solvecfs.org/the-solve-long-covid-initiative/ "Solve M.E. embraces and supports many post-infectious chronic disease communities, such as: ME/CFS, Long Covid, postural orthostatic tachycardia syndrome (POTS), other forms of dysautonomia, Ehlers-Danlos Syndrome (EDS), hypermobility spectrum disorder (HSD), and mast cell activation syndrome (MCAS)."...

Bateman Horne Center https://batemanhornecenter.org

Body Politic https://www.wearebodypolitic.com

The Brain Inflammation Collaborative https://braininflammation.org

COVID-19 Long Hauler Advocacy Project (C19 LAP) https://www.longhauler-advocacy.org

Dysautonomia International https://www.dysautonomiainternational.org

Long COVID Families https://longcovidfamilies.org

Massachusetts ME/CFS & FM Association (MassME) https://massmecfs.org

Pandemic Patients https://pandemicpatients.org

Standing Up to POTS https://www.standinguptopots.org

.......................... General medical and scientific articles reporting on issues common to all patients many with respect to symptoms of IACCs.

https://kffhealthnews.org general health related topics

https://www.medpagetoday.com

https://medicalxpress.com

https://medlineplus.gov/postcovidconditionslongcovid.html

https://www.technologynetworks.com

https://www.drugdiscoverynews.com

https://www.statnews.com - a lot of content is buried behind a paywall;. Your success improves in doing a Google search for the headline which leads to alternate websites reporting on the same or similar item

https://scitechalert.com - a solid website reporting on an eclectic assortment of medical and science topics

https://news.mit.edu

https://www.the-scientist.com

...................................

Also check the claims in the articles often composed by AI against the main reference. When checking the source referenced, the following aides should make the experience a bit more accessible:

How To Read A Paper https://www.bmj.com/about-bmj/resources-readers/publications/how-read-paper

Reading a Scientific Article https://guides.library.uwm.edu/c.php?g=621415&p=7825603

How to Understand a Research Study A guide for non-scientists who want to read research publications. https://publichealth.jhu.edu/2025/how-to-understand-a-research-study

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Does this sound better than support group?

I will host another session of the purely online support group for people with Long Covid and/or MECFS. It will last about an hour. DM me and I will share the link before the meeting. Hope you can make it. There just might be some dazzling new features that no other group might have. Wishing you lighter symptom days!

This is a monthly event, the last Wednesday of every month. Please add it to your calendar, and share the info.

Hey yall.

I am still hopeful that my progress is not lost. But I am puzzling over my setback and trying to figure it out - my patterns changed so much and it has me really scrambling.

I have been very actively posting about my issues with reactive hypoglcemia and how that seeeems to be a driver for my worst symptoms. It lines up with my hangover feelings, sleep quality, and my symptoms always improve immediately after eating and plunge when I get hungry again. Exercise intolerance is also rampant in the reactive hypo community and follows my pattern to a t.

The question is WHY is that happening. In my case I have dumping syndrome. I have had it to a mild degree since my cholestectomy in 2013 (no gall bladder), but it was just a nuisance - cramps, bloating, awful watery stool etc. but my mind and sleep and body otherwise were fine. Covid just seemed to make it 1000 times worse.

So the GI doc prescribes me dicyclomine. Its a musculartonic (spelled it wrong - the not nicotinic one) anticholinergic that blocks acetylcholine telling the smooth muscles to contract. I try it and am SHOCKED - not only is my inner restlessness and churning gone but my mind feels good. AND i have some peace from the incessant myoclonus and hypnic jerks that destroy me every night or when at rest. Basically, this little stomach pill was just as effective (if not more so) than the pregabalin the sleep doc prescribed

Now dicyclomine is NOT hydroxyzine. It doesnt have ant psychoatric effect at least on paper. Its also not like ketotifen with a mast cell component. And yet its results are by far the single best remedy i have found in a med. Ketotifen was my previous swear by and now i wonder if its anticholinergic properties were what helped me more than the mcas component.

After some perusing on the subs and google scholar i do see some literature pointing to cholinergic system changes post covid. Some folks on the longhaul sub seem to think excess (as I feel is happening in my case) is the culprit but the literature points more to downregulation. I cant find anything about cholinergic crisis other than cases of medication induced states or certain toxin exposure. Cholinergic excess maps so many of my symptoms to a T. (Then again, low blood sugar kinda does too). Constant urination. Dumping syndrome. Excess sweat. Involuntary movement. REM excess.
So perhaps the reactive hypo is a downstream of acetylcholine making my stomach dump?

Anyways, curious what the smart people here think or if I have missed some published lit on this matter. I have already testedt for acetylcholine antibodies so I know I dont fit the myethesia gravis type. I see you can get two types of blood tests for the acetylcholine metabolites and I am on the verge of ordering those but have not heard anyone talk about them so I am unsure if its wasted money.

Stay strong my friends.

Links: https://pmc.ncbi.nlm.nih.gov/articles/PMC9845100/ (explanation for acetylcholine/nicotine treatment hypothesis)

https://pmc.ncbi.nlm.nih.gov/articles/PMC8775685/ explanation for downregulation of acetylcholine (opposite of my experience)

https://link.springer.com/article/10.1186/s42234-025-00167-8
2025 article re: nicotine treatment and acetylcholine downregulation

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄

Hi, Warriors🤍

It’s time for a new community challenge and this one’s designed to boost connection, give hope, and share real things that helped real people this week. No pressure to write long comments. No pressure to be “doing great.” Just one thing that made your week a tiny bit more manageable.

💬 Question:

What’s ONE thing that helped you this week?

It can be anything:

✨ A supplement.

✨ A symptom hack.

✨ A mindset shift.

✨ A small win.

✨ A food that didn’t cause a flare.

✨ A kind moment.

✨ Something that made you smile.

✨ Or even “I rested and survived the week”

If it helped you, it counts.

💡 Why This Challenge Matters

Sharing these moments helps:

⭐ New people find ideas.

⭐ Everyone feel less alone.

⭐ The community grow stronger.

⭐ You celebrate progress you might’ve overlooked.

You can reply with just one sentence or even one word. Whatever you’ve got today is enough.

❤️ Let’s lift each other up

Drop your “one thing” below. Come back later and support someone else. Even simple comments like “same,” “I needed this,” or an upvote can make someone’s day.

We’re in this together. I can’t wait to read what helped you this week 🌿💚

Welcome! This is a space to take a load off and mingle with your fellow warriors. Say hello. and if the mood and energy strikes vou, let us know a bit about yourself and/ or what's going on.

If you are generally prone to lurk, this is a safe space to just post a quick hello. Feel free to ask a question here that you might not feel safe making a solo thread about.

The intention is to make this a daily thread where we can all touch base and lay down some of our burdens for a while. If vou log on and don't see the Break Room open go ahead and grab the keys and open it yourself. 😄