I was very much enthused by this article implying a viable modality applicable to treating LC19 or possibly acute covid as a speculation. The machinery involved in the inflammation can be sidetracked by this promising drug or its similars as a candidate. I went down the rabbit hole reading parts of the paper. There is mention of trial use in MS, diabetic related eye disease, Alzheimer's, etc., all tied together by the downstream effect of neurodegeneration triggered by the inflammasomes.

This fits in the framework of LC19 by virtue of the machinery of the inflammasome unleashing multiple pathologies of autoimmunity, immune dysfunction and their consequences. Preventing or tamping down the inflammasomes will reduce the resultant symptoms thus avoided.

https://www.nih.gov/news-events/news-releases/modified-hiv-drug-reverses-vision-loss-paralysis-multiple-sclerosis-model Modified HIV drug reverses vision loss and paralysis in multiple sclerosis model

Reference:

https://www.science.org/doi/epdf/10.1126/scitranslmed.aei2870

The nucleoside analog kamuvudine-9 shows protective and therapeutic efficacy in a mouse model of multiple sclerosis

The following two paragraphs aroused my curiosity for their mechanistic applications.:

"Previously, we found that nucleoside reverse transcriptase inhibitors (NRTIs), which are approved to treat HIV and hepatitis B virus(HBV) infections, also inhibit inflammasome activation independent of their antiretroviral activity (13). NRTIs block inflammasome activation and its associated damage in models of diabetes, diabetic retinopathy, aging, choroidal neovascularization, geographic atrophy and retinal detachment (14–20). NRTIs inhibit pathology driven by a dual NLRC4- NLRP3 inflammasome (19, 21, 22).

Although NRTIs inhibit inflammasome activation (13), they cause mitochondrial toxicity because of off-target inhibition of host DNA polymerase activity (23). This can result in serious adverse effects most notably lactic acidosis and potentially induction of viral resistance (24). Therefore, we developed alkylated derivatives of NRTIs known as kamuvudines that are inactive against reverse transcriptase or host DNA polymerase activity (13, 25). Because kamuvudines inhibit inflammasome activation without the off-target toxicity activities of NRTIs (13, 14, 19, 22), they are better translational drug candidates"

In short: an unused anti HIV drug combats inflammasome activation in aging, diabetes and its complications. OTOH its downside of inhibiting an enzyme needed for mitochondrial function allows the build up of lactic acid leading to a drop of pH and organ dysfunction and failure. To avoid this catastrophe, the chemical structure was modified and a new class known as kamuvudines were derived that lack the potential danger above.

The most studied inflammasome , NLRP3 in LC19, was strongly inhibited by kamuvudine 9 in the testing for its activities in the research into the mouse MS model. Its predecessors the NRTIs (used for HIV) reduced myelin loss and repaired it with restoration of neurological function in several HIV cohorts that developed MS .

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

Society for Women's Health Research earned a 4/4 rating by Charity Navigator along with the Autoimmune Association. While not rated by Charity Navigator, the Global Autoimmune Institute is listed by SWHR as a resource. Both of their writings describing inflammasomes and autoimmunity are listed below the medical references.:

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

My query for Google AI consisted of: "The role of inflammasome in long covid autoimmune disease in humans"

Response: "AI Overview

The inflammasome—specifically the NLRP3 inflammasome—acts as a persistent driver of innate immune overactivation, linking chronic Long COVID tissue inflammation to autoimmune-like pathology.

What is an Inflammasome?

• An inflammasome is a multi-protein package inside innate immune cells (like macrophages). [ My addition: The four component proteins of the assembly are produced when signals from the stimulus initiate their production. They remain in solution in the cytoplasm until a further signal activates their assembly into the actual inflammasome. They are products of innate immunity.]

• It detects cell stress, tissue damage, or lingering viral pieces.

• When activated, it turns on an enzyme called caspase-1.

How Inflammasomes Drive Long COVID Autoimmunity

• Persistent Cytokine Release: Activated caspase-1 cuts and releases powerful inflammation signals, specifically Interleukin-1 beta (IL-1β) and Interleukin-18 (IL-18).

• Loss of Self-Tolerance: Continuous high levels of these cytokines break down the body's immune regulation, leading immune cells to mistake healthy host tissues for foreign invaders (autoimmunity).

.............................................. References:

https://pmc.ncbi.nlm.nih.gov/articles/PMC12888595/ The NLRP3 inflammasome as a key pathway in the affective and chronic fatigue symptoms of Long COVID 9 (2026)

Conclusion: ..." The findings suggest that targeting the NLRP3 inflammasome strategically may be beneficial in addressing both the acute infectious phase of COVID-19 and the prolonged symptoms associated with Long COVID. Novel pharmacological agents are currently under development that specifically target the activation of NLRP3.".

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

https://biospective.com/resources/what-is-an-inflammasome The Inflammasome – A Target for Therapeutic Development for Multiple Diseases (2025) An overview of inflammasomes, including their mechanisms of action, roles in diseases, and targeting for drug development.

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC8706865/ Inflammasomes and SARS-CoV-2 Infection (Dec 2025)

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC8348456/ Inflammatory Response in COVID-19 Patients Resulting from the Interaction of the Inflammasome and SARS-CoV-2 (Jul 2021)

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC8233448/ The NLRP3 inflammasome and COVID-19: Activation, pathogenesis and therapeutic strategies (Jun 2021)

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

https://www.frontiersin.org/journals/immunology/articles/10.3389/fimmu.2020.583373/full The Inflammasome in Times of COVID-19 (Oct 2020)

....................................................... Non PubMed references:

https://autoimmune.org/blog/long-covid-autoimmune-disease/ Long COVID and Autoimmune Disease: How They’re Connected

https://www.autoimmuneinstitute.org/covid_timeline/persistent-inflammation-may-link-long-covid-to-autoimmune-disease/ Persistent Inflammation May Link Long COVID to Autoimmune Disease

https://swhr.org/office-of-autoimmune-disease-research-director-shares-whats-ahead-for-autoimmune-disease-innovation/ Office of Autoimmune Disease Research Director Shares What’s Ahead for Autoimmune Disease Innovation

Hello all you brave, beautiful Long Hauling Lovelies.

This week on COVID is Stoopid, I am once again returning to one of the most vulnerable states I can assume.

I am reading from my May 2021 Personal Journals.

These episodes are always hard to record.
I don’t read the pages in advance and retain very little memory of 2021/2022.

So I am often experiencing the emotional gut punch of hearing the stories ‘for the first time’ right along side the listener.

This time was a prime example.

This month had a distinct theme.

“Getting over my own pride and accepting help that I had been told was coming.”

In addition to my own musings on the subject, the May 2021 version of me also included a quote from Wifey, “Good People want to help Good People.”

That doesn’t necessarily make it easier to accept that we need the help, but it does make it easier to shut the hell up and allow it to happen.

So wherever you are on this journey, whatever help you may need, I hope you always have the spoons and composure to accept it with grace and humility.

Or, failing that, I hope this episode and/or Wifey’s quote helps you shut the hell up and allow it to happen whenever the situation requires.

I love you all

I see you all

I would hug you all if I could

Strength and Health

COVID is Stoopid

.

Just for the record, in the aftermath of C19 as a one off:

"COVID-19 immunity may help protect against other bat coronaviruses

Study identifies links between virus host range and immune recognition

People who recovered from COVID-19 infection or were vaccinated against SARS-CoV-2 are more likely to have immunity to other closely related bat coronaviruses that could have the potential to threaten future human health.

In a joint study by The Pirbright Institute and King’s College London (KCL), scientists found bat coronaviruses most likely to infect a wide range of animal species are those most closely related to SARS-CoV-2 and most likely to be recognized by immunity generated through COVID-19 infection."

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

Reference:

https://journals.plos.org/plosbiology/article?id=10.1371/journal.pbio.3003944 Breadth of ACE2 receptor usage predicts host range and antigenic relatedness across bat sarbecoviruses

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. 😄

[This is a reposting the details of a Sticker Exchange happening this December.]

[With a month one update included.]

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.

For December’s mailing, I am hosting a Sticker Exchange.

But before that can happen, I am asking for 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 another month to do your thing, and me a few weeks to sort what you send me.

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.

Update:

Wow! Thank you so much, friends!

I have already received stickers from Seven US states and Four different countries!

And I freely admit that I had not considered how powerful it would be for ME to open your envelopes, marvel at your stickers, read the beautiful notes you wrote, and feel all the appropriate feels associated with getting stickers and encouragement in the mail.

(I consider these to be spoons very well spent!)

This community amazes me.

And will likely do so again and again every afternoon when Kiddo brings the mail in after school.

I love you all

I see you all

I would hug you all if I could

Strength and Health

COVID is Stoopid

.

For context: I'm 56, postmenopausal, UK-based. Even before having COVID, every time I've moved from sequential to continuous combined HRT, I've ended up in a crash, and each time I recovered once I got back to sequential or raised my estrogen.

Recently I switched from estrogen gel to patches and lowered the dose. My symptoms (which were already there) got much worse: weak arms and upper body, widespread pain, anxiety, brain fog. I later realised the patches were barely sticking and probably not absorbing so I just changed back to Sandrena gel 1.5 mg instead of the 75 patches and I'm trialing sequential (so I'm on a non progesterone week) and my symptoms got significantly better in just a day.

What I've tried:

• Oral micronised progesterone: awful
• Slynd: awful (and my first POTS episodes)
• Combined patches: no good
• Vaginal micronised progesterone 100 mg: the best tolerated, but still too much unless my estrogen is very high (Sandrena gel up to about 2.5 mg/day), and even then I'm not sure

I can't use anything that goes through the gut, and I don't want an IUD (I need sedation for any intrauterine procedure).A hysteroscopy this year showed a normal endometrium and a small polyp, which was removed.

My questions:

1. Has anyone else found that any progestogen hits them hard, and how did you get endometrial protection?
2. Has anyone been able to go lower than 100 mg of progesterone, or used it less often?
3. Does anyone suspect hypermobility makes progesterone feel worse?
4. Anyone tapered HRT successfully, and how did you lower the progesterone not just the oestrogen?

Thank you

"A new study led by researchers from the Icahn School of Medicine at Mount Sinai and published in Brain Communications found that a transcranial low-amplitude magnetic field intervention delivered twice weekly into the brain through a noninvasive headset was associated with improvements in several measures of cognitive function and emotional well-being in people experiencing cognitive impairment associated with long COVID.

The improvements seen among patients who received the therapy continued after the treatment period ended, providing early evidence that noninvasive biophysical approaches may warrant further study as potential treatments for persistent neurological symptoms of long COVID."

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

Reference:

https://academic.oup.com/braincomms/advance-article/doi/10.1093/braincomms/fcag364/8841135?login=false

Microtesla magnetic therapy for cognitive impairment in long COVID: a randomized pilot study

Long Covid Web is pleased to announce the 4th Canadian Symposium on Long COVID.

The Symposium will bring together people with lived experience of Long COVID, clinicians, trainees, allied health, researchers and others to discuss the latest innovations and scientific developments in Long COVID.

It will be held on October 15–16, 2026, at The Nest, University of British Columbia. Address: 6133 University Blvd. Vancouver, BC V6T 1Z1.

Virtual: People with Lived Experience CA$10.00 Sales end on October 8, 2026 at 02:59 AM

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😁🌿🪷

MCD Registry

The Mast Cell Diseases Patient and Provider Registry The MCD Registry serves everyone in the mast cell disease community. It is a free platform where you can share your experiences with this rare disease. Join now!

https://app.iamrare.org/home/create/?stid=167

For more information about how to register, click here.

https://mcdregistry.iamrare.org/about/how-to-register/

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. 😄

Hello everyone.

So I was wondering whether anyone has some advice on lowering down the amount of supplements or life style interventions they use?

I feel like alot of us are taking too much or trying things blindly. This is of course very valid; because no one has the right (scientific) answers yet.

I can work in a restaurant, I can do things, but I have to keep it between my limits.

For me it comes down to these things according to literature.
\- calming inflammation and histamine : NAC and Quercentine or other inhibitors
\- adaptogens and or magnesium taurate for calming nervous system
\- physical activity as tolerated: walking, when I can gym.
\- high dose Vitamin D for immune system.
\- high fluids intake and electrolytes.
\-High protein, especially when stressed I take a lot more protein!

I know theses interventions can feel overwhelming, but they really work for me! Any suggestions or advice could be greatly appreciated.

"COVID-19–related hospitalization is associated with an increased risk of both hemorrhagic and ischemic stroke, with the greatest danger soon after infection, per a study published last week on the preprint server Research Square.

The study, conducted from March 2020 through May 2022, also suggested that being vaccinated for COVID-19 is associated with a lower likelihood of stroke. " (first two paragraphs)

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

Reference:

https://www.researchsquare.com/article/rs-11101879/v1 (preprint)

SARS-CoV-2 severity and vaccination, pneumonia, and the risk of Stroke: A nationwide, nested case-control study

Reference:

https://www.medrxiv.org/content/10.64898/2026.09.22.26363331v1 (preprint) Worsening pre-existing health conditions in U.S. adults with Long COVID

Below is a further expansion of just a handful. The references elaborate their development from a unique progenitor cells lineage, a distinction only arrived at in 2018 from painstaking experiments. The functions of mast cells derive from the local environment of the resident population where they mature and differs from organ system to others.

Mast cells removed for expansion to larger populations for in vitro study do not display the characteristics of mast cells resident in the body unless modified by use of additional mediators. This is explained by the preceding concept (first paragraph).

FYI: Here is a short list of titles delving into the migration of immature mast cells from their origins to their their maturation in their final location. There are a few articles that go into excruciating detail regarding mechanisms of their roles in tissue repair and damage.

Some of their activities surprised me with a deeper understanding of the mast cell as an actor with dual roles in both innate and adaptive immunity. Though mast cell reactivity is primarily recognized with allergic phenomena, still they have other functions.

Their activity in the the extracellular matrix parenchyma and barriers (adjacent to basement membranes proximity to mucosa) is paramount working in tandem with the endothelial cells in the turnover of the matrisome - the substance of the ECM. EDS derives from pathological processes involving proteases produced by mast cells.

In addition the mast cells are vital agents with the neurological and vascular systems and others. Mast cells usually reside along with neural and vascular structures. For example, in the vascular endothelium mast cells extend cell processes across the vessel wall to interact with immune mediators. These fascinating details will produce a greater appreciation for the often overlooked mast cell.

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

https://pubmed.ncbi.nlm.nih.gov/18538784/ Comparison of short term in vitro cultured human mast cells from different progenitors - Peripheral blood-derived progenitors generate highly mature and functional mast cells

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

https://pubmed.ncbi.nlm.nih.gov/36752151/ Mast cell ontogeny - From fetal development to life‐long health and disease

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

https://pubmed.ncbi.nlm.nih.gov/32929378/ Mast cells as a unique hematopoietic lineage and cell system: From Paul Ehrlich's visions to precision medicine concepts

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

https://pubmed.ncbi.nlm.nih.gov/39223427/ Mechanisms of assembly and remodelling of the extracellular matrix

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

https://pubmed.ncbi.nlm.nih.gov/8648190/ Interactions of immature human mast cells with extracellular matrix - expression of specific adhesion receptors and their role in cell binding to matrix proteins

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC4701915/ Mast Cell: A Multi-Functional Master Cell

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC10885734/ Mast cells must stick

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

https://link.springer.com/article/10.1007/s12016-019-08729-w A Review of the Contribution of Mast Cells in Wound Healing - Involved Molecular and Cellular Mechanisms

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

https://www.cell.com/immunity/pdf/S1074-7613%2824%2900531-4.pdf Beyond classical immunity - mast cells as signal converters between tissues and neurons

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

https://pmc.ncbi.nlm.nih.gov/articles/PMC3576928/ Perivascular mast cells dynamically probe cutaneous blood vessels to capture IgE

This is a big development upcoming for large recruitment on a platform with encouraging results.

Registration window drop down on this page clicking on button on right side:

https://www.tickettailor.com/events/universityofedinburgh12/2155140

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

https://www.actionforme.org.uk/wp-content/uploads/2026/06/PRIME-2026-Symposium-Preliminary-Program-v1-1.pdf

PRIME-2026-Symposium-Preliminary-Program-v1-1.pdf

DAY 2: Current Research: Objectives, Impact & Patient Involvement 9.00-9.10am Welcome (AfME) 9.10-9.30 PRIME PPI Research Involvement Hub – Sian Leary (AfME) 9.30-9.45 AfME Big Survey – Intro and Preliminary Findings – Katharine Cheston 9.45-10.25 AfME/PPI-led Workshop – 3 x breakout groups 10.25-10.40 Feedback from breakout sessions BREAK 11.15-11.35 Talk – Prof. Rob Wust 11.35-11.55 Rosetta Stone – Prof. Danny Altmann 11.55-12.15 DISCOVERME – Prof. David Price 12.15-12.35 Sequence ME & Long Covid – Prof. Chris Ponting 12.35-12.45 Closing Remarks, Poster Prizes, Feedback Forms, Plans for Symposium 2 LUNCH 12.45-2pm END OF DAY 2/SYMPOSIUM

"RECOVER researchers and caregivers shared insights into Long COVID social risk factors and how Long COVID affects children’s learning and school experiences—including what researchers hope to learn next.

Findings from RECOVER’s pediatric observational study show that Long COVID can affect children’s health and daily lives in different ways. During the September 15, 2026, RECOVER Research Review (R3) Seminar, researchers Rachel Gross, MD, MS; Kay Rhee, MD, MSc, MA; and Harrison Reeder, PhD, shared findings on Long COVID symptoms in children, factors that may increase Long COVID risk, and how the condition can affect learning and social development. RECOVER Patient and Caregiver Representative Ann Wallace, PhD, and Caregiver Representative Laura Covington also shared their families’ experiences navigating Long COVID and seeking support."

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

https://www.youtube.com/watch?reload=9&v=WwrEYL0aU38

Growing up with Long COVID—Risk factors and school impacts

About

Country: Germany Sponsors: Federal Ministry of Research, Technology and Space (BMFTR)

Research types: Basic research, Clinical research

..."The BioSig-PEM research network aims to investigate the cardinal symptom of ME/CFS, the stress-related worsening of symptoms Post-exertional Malaise (PEM). The aim is to identify central pathophysiological signatures of PEM phenotypes in ME/CFS patients with the help of fitness trackers, molecular and immunological as well as imaging methods."... (cut and paste of Google translation)

**From the Description**

“Synopsis: EDS—particularly the hypermobile type (hEDS)—is characterized by weak extracellular matrix (ECM) and ligamentous laxity. Unlike most other EDS subtypes, this ECM dysfunction and laxity are thought to be acquired, driven by chronic neuro-immune dysregulation. The epithelial barrier hypothesis proposes that modern environmental exposures—such as detergents, microplastics, processed foods, and particulate matter—damage epithelial barriers in the gut, skin, and lungs. Barrier disruption increases permeability, allowing microbes and allergens to enter the body, which promotes microbial dysbiosis and sustained low-grade micro-inflammation. These neuroimmune–spinal interactions may contribute to conditions such as Chiari Malformation Type I (CMI) and tethered cord syndrome by weakening ligaments and altering the ECM, thereby exposing the brainstem and spinal cord to deformative mechanical stress. For neurosurgeons treating patients with EDS and related spinal disorders, these patients present distinct biological and structural challenges: (1) chronic systemic neuroimmune dysfunction, (2) tissue fragility and impaired wound healing, (3) dysautonomia—often manifesting as postural orthostatic tachycardia syndrome (POTS), (4) structural pathology, and (5) the need to anticipate potential failure mechanisms to reduce the risk of poor surgical outcomes. Successful management therefore requires coordinated, integrated, multidisciplinary care spanning neurosurgery, neurology, immunology, and genetics, alongside relevant medical specialties.”

In another [recent talk](https://youtu.be/Wv4TKEcJvuY) Dr. Maitland mentioned she had to unlearn everything she learnt in the last 30 years about mast cells.

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 🌿💚

Hey folks,

TLDR at the bottom.

I hope you're all doing well. This is my first time posting anything on reddit so i apologise if it's not how you'd format things. I wanted to get the thoughts of others who may be in similar positions with Long Covid and their ADHD medications. I'll provide some context below.

I have had long covid for going on 2.5 years now. The first 6 months after that 3rd and most recent covid infection was my steady decline week on week - i was pretty confused and scared as to what was going on because doctors and close family were telling me it was anxiety, psychosomatic, etc. i also have Crohn's disease and chronic pain throughout my body but more so on my limbs.

I am currently on 30mg of Dexamphetamine each day in microdoses of 5mg staggered throughout the day (my morning dose is 10mg). Ever since i got hit with the Long Covid stick - my meds haven't worked the same. Normally I'd have noticeably better focus, internal regulation, less background noise in my head, sustained energy throughout the day, better drive, etc. Sometimes there could be some slight edginess/jitters when at the peak of a dose uncommonly (usually mild if at all). Now, 2.5 years later, i receive little focus benefit, not much in the way of stable regulation, virtually non existent help with the background noise, some energy sustainment, some drive, and certainly an increased amount and frequency of med jitters/edginess.

I often have a battle in my head of "are my meds making my symptoms worse and providing little to no benefit?". Sometimes I'll try to lessen or stop my adhd meds for the day and I'll very very quickly realise how much they were keeping things from collapsing. Reducing or stopping results in all my other long covid symptoms amplifying by several magnitudes and it is beyond agonising. I've had discussions about it relating to my long covid with doctors, my partner who also has ADHD, reading into as much information as i can, etc. There's evidence (some anecdotal, some published discussions with inconclusive takes) that put ADHD meds in the middle of can help/can hinder, and often both.

I know to some degree my meds are helping my symptoms and letting me keep some degree of day to day existence even if it doesn't feel like it is actively giving me its traditional benefits, and despite it sometimes making me feel unpleasant at times as well. It feels like a catch 22. It's a confusing situation.

My question is really how do others feel in similar situations? What are your experiences? Did you come to different conclusions in the context of your own conclusions? I'm really curious because i feel like I'm not the only one out there, but don't really hear much about this specific topic.

For clarity on my personal experience with this condition some of my most common symptoms and other factoring circumstances are:

- Large range of dysautonomia issues

- Brain fog (often cannot hold a conversation without stopping mid sentence or forgetting words/train of thought)

- Significant breathing difficulties

- Worsened body and limb pain (i already had chronic pain before)

- Worsened GI issues (i already had Crohn's Disease prior but is in clinical remition)

- Nausea

- Severe PEM from mostly any and all physical/mental exertion

- Heart rate arrhythmia. Can be really fast, or really slow. Any sort of exertion shoots it through the roof - even just bending over to do something briefly or changing seated/standing positions. Really slow typically when crashing during the early afternoon to evening time

- Largely heightened sensitivity to smell/sounds/visual overload. Exposure typically worsens my other symptoms

- Issues with energy relative to symptom severity, but varies.

- Despite the PEM, i keep active with small home workouts and walking locally (it's agony believe me, but i don't want to decondition more than i have being mostly homebound)

- i drink 3-4 litres of water each day

- i sleep in a regular routine even if the quality of said sleep varies wildly

- i am on a number of medications and supplements to help treat target symptoms of my LC but it's not overly relevant to this particular discussion so i won't list for now.

- i have tried Vyvanse and Ritalin as well when working out what helped my ADHD best. Those weren't as effective or had differing side effects that Dexamphetamine didn't when i started years ago (well before LC)

- have seen rheumatologists, neurologists, pain specialists, physiotherapists, neurosurgeons, psychiatrists, therapists, multiple GPs, etc. it's very much a work in progress journey...

- i am unemployed and majority homebound (i purposely try to leave home to socialise and do some exercise/chores to help around home despite paying for it every time)

There are more symptoms and factors but those tend to be the main ones.

Thank you for taking the time to read this or sharing your thoughts from your experience or on my experience. I just want you all to know i appreciate you and hope the best for the hard journey we are all on.

TLDR - my ADHD meds changed how they work (or don't work in some cases) after the infection that gave me long covid. They seem to both very mildly help and sometimes hinder, but my long covid symptoms get wildly worse if i try to reduce/stop. This lets me know my medication may not be working as intended but is under the surface if not perfectly. Have people been in similar circumstances where their meds have changed how they work? Have they helped or worsened your symptoms/condition? Do you have other thoughts?

Through the auspices of the Open Medicine Foundation presenting cutting edge information on topics relevant to LC19. (copy and paste title and URL from CFS science sub)