#mastcells — Public Fediverse posts

DATE: July 28, 2026 at 04:00PM
SOURCE: PSYPOST.ORG

** Research quality varies widely from fantastic to small exploratory studies. Please check research methods when conclusions are very important to you. **
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TITLE: Overactive immune cells might drive nerve pain in long COVID

URL: https://www.psypost.org/how-overactive-immune-cells-might-drive-nerve-pain-in-long-covid/

Millions of people who recover from the initial stages of COVID-19 continue to suffer from lingering nerve pain, fatigue, and cognitive issues. A new academic review proposes that a specific type of overactive immune cell might be responsible for driving this persistent nerve damage. These findings were published in the Journal of Neuropathology & Experimental Neurology.

Long COVID, officially termed post-acute sequelae of SARS-CoV-2 infection, remains a widespread public health issue. Global estimates suggest the condition affects over 60 million individuals. One meta-analysis reviewing a massive sample of over two million confirmed COVID-19 cases estimated a global prevalence of nearly 36 percent. A different review of a massive sample of over 480,000 individuals found that over half of survivors experienced at least one lingering symptom for more than a year.

Despite these high numbers, the underlying biology of Long COVID is not fully understood. Patients report a wide array of symptoms across multiple organ systems. These frequently include extreme fatigue, brain fog, and shortness of breath.

A prominent feature of Long COVID is neuropathy, a general term for damage or dysfunction of the peripheral nervous system. Peripheral nerves connect the brain and spinal cord to the rest of the body. Data from several observational studies indicates that up to 59 percent of Long COVID patients show signs of small-fiber neuropathy.

Small-fiber neuropathy specifically affects the tiny, unmyelinated nerve endings in the skin and organs. These fibers transmit pain and temperature sensations. When damaged, they often cause burning pain, numbness, and tingling in the extremities.

Conventional nerve conduction studies often fail to detect this specific type of damage. Standard medical tests primarily assess large, myelinated nerve fibers responsible for major muscle movements and gross sensation. Because standard diagnostic tools easily miss damage to small nerve fibers, the prevalence of Long COVID neuropathy likely went underreported in the early stages of the pandemic.

These small nerves also help control the autonomic nervous system, which manages involuntary body functions like heart rate and digestion. Autonomic dysfunction is frequently observed in Long COVID patients. Many develop postural orthostatic tachycardia syndrome, a condition where the heart races uncontrollably upon standing.

Zachary L. Morcos and Theoharis C. Theoharides, researchers affiliated with Nova Southeastern University and Tufts University, sought to explore potential cellular mechanisms connecting these varied symptoms. They noticed that many Long COVID complaints closely mirror an immune condition called mast cell activation syndrome. This prompted them to investigate whether mast cells might serve as the biological bridge between a past viral infection and ongoing nerve pain.

Mast cells are specialized immune cells that act as sentinels throughout the body. They are heavily concentrated in tissues that interface with the external environment, such as the skin, lungs, and gut. They also cluster heavily around blood vessels and nerve fibers.

Normally, mast cells help defend against pathogens and play a central role in allergic reactions. When triggered by a virus, an allergen, or physiological stress, they undergo a process called degranulation. During degranulation, the cells split open and dump an arsenal of chemical mediators into the surrounding tissue.

These inflammatory chemicals include histamine, tryptase, and various signaling proteins. While these mediators help orchestrate a defense against immediate threats, chronic release can damage surrounding tissues. Because mast cells are positioned directly next to nerve fibers, their chemical output can easily irritate pain receptors.

Mast cells are well known for their role in asthma and skin hives. However, researchers are increasingly recognizing their ability to modulate both neurovascular and neuroimmune responses. Because they sit at the biological crossroads of the blood supply and the nervous system, any prolonged mast cell hyperactivity can easily disrupt both systems simultaneously.

To evaluate this hypothesis, the researchers conducted a narrative literature review. They gathered and synthesized data from cell cultures, animal models, clinical case reports, and human observational studies. The goal was to build a comprehensive picture of how mast cells interact with the pandemic virus and the human nervous system.

The collected research suggests that the spike protein of the SARS-CoV-2 virus directly binds to specific receptors on the surface of mast cells. These docking points include the angiotensin-converting enzyme 2 and toll-like receptor 4 proteins. This cellular interaction triggers the mast cells to release their inflammatory payload without requiring a traditional allergic trigger. Once released, these harsh chemicals bathe nearby nerve endings, making them overly sensitive to pain.

The prolonged presence of these mediators initiates a localized chain reaction of inflammation. The chemicals degrade the structural integrity of small nerve fibers, leading to the numbness and burning characteristic of neuropathy. In the autonomic nervous system, this localized damage disrupts the normal transmission of signals required to regulate blood pressure and heart rate.

The researchers note that the collateral damage is not limited to peripheral limbs. Inflammatory mediators released by mast cells can travel through the bloodstream and compromise the blood-brain barrier. This barrier is a highly selective membrane designed to keep circulating toxins out of the central nervous system.

When the blood-brain barrier weakens, general immune cells and inflammatory molecules can slip into the brain. Once inside, they may aggravate microglia, the brain’s resident immune cell population. This localized brain inflammation is suspected to be a primary driver of the cognitive dysfunction and extreme fatigue often reported by patients.

Past clinical observations provide associative evidence that mast cells contribute to Long COVID. The review highlights a small study of 21 patients with severe COVID-19 where resting immune markers were abnormally elevated. Autopsy data from deceased patients has also revealed heavy accumulations of mast cells in the lungs and near blocked blood vessels.

In addition to causing direct nerve damage, overactive mast cells might intersect with other theorized Long COVID mechanisms. The chemicals they release can disrupt normal blood clotting, potentially contributing to the microscopic blood clots found in some patients. Their constant signaling might also skew the broader immune system, inducing the autoimmune responses seen long after the virus clears.

If hyperactive mast cells are causing neurological symptoms, targeting them directly might offer symptom relief. The review evaluated several potential therapeutic strategies reported in recent clinical literature. Standard antihistamines, which block the cellular receptors for one of the main chemicals released by mast cells, have provided mixed outcomes.

Some case reports describe patients achieving remission from autonomic nervous system issues after starting antihistamine therapy. However, human mast cells can release up to 390 different inflammatory mediators depending on the trigger. Blocking histamine alone might not be sufficient to completely halt the widespread nerve damage.

The researchers point to other chemical interventions, such as naturally occurring plant compounds called flavonoids. Specifically, natural molecules like luteolin and quercetin appear to stabilize the outer membrane of mast cells. Laboratory studies suggest these compounds prevent the cells from releasing their contents in the first place, rather than just blocking single mediators after they are loose in the tissue.

Another proposed treatment is alpha-lipoic acid, a natural antioxidant involved in cellular energy production. Previous research indicates this compound helps neutralize oxidative stress in biological tissues. It has also shown promise in promoting nerve regeneration and suppressing pain signals traveling along damaged nerve fibers.

While the biological mechanism appears plausible, the researchers outline several caveats to their conclusions. Narrative reviews synthesize existing evidence but do not act as standalone experiments to confirm a hypothesis. Much of the underlying data comes from isolated test tube studies, animal models, and individual patient case reports.

Additionally, blood tests designed to measure mast cell activation are not consistently elevated in all Long COVID patients. Because the results of these tests were not statistically significant across all cohorts, the authors suggest this might be because mast cell activity fluctuates. The inflammation might also be localized inside specific organ tissues rather than circulating through the whole body in high concentrations.

The wide variation in patient responses to immune-modulating treatments indicates that Long COVID is likely an umbrella term for several distinct biological problems. Mast cell dysfunction might be a primary driver for some individuals, while persistent viral fragments or blood clotting issues might dominate in others. These distinct but overlapping biological pathways make diagnosing and treating the condition exceptionally difficult.

The exact sequence of events leading from an initial respiratory infection to chronic nerve pain remains partially theoretical. Addressing this knowledge gap will require prospective clinical trials specifically designed to track mast cell activity over time. Until then, understanding this specific immune response offers a rational foundation for developing targeted therapies to help those suffering from chronic post-viral illness.

The study, “Long COVID neuropathy: The role of mast cells,” was authored by Zachary L. Morcos and Theoharis C. Theoharides.

URL: https://www.psypost.org/how-overactive-immune-cells-might-drive-nerve-pain-in-long-covid/

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#psychology #counseling #socialwork #psychotherapy @psychotherapist @psychotherapists @psychology @socialpsych @socialwork @psychiatry #mentalhealth #psychiatry #healthcare #depression #psychotherapist #LongCOVID #MastCells #Neuropathy #SmallFiberNeuropathy #Neuroinflammation #AutonomicDysfunction #BrainFog #PostCovid #InflammationMedicine #PainManagement

I think salting my food increases my reactivity. It's disappointing, since I don't have a lot of variety in my food or options for seasoning it. However, I went salt-free last night at dinner and I enjoyed it - the onions were still quite good.

Though the focus is often on the sodium in table salt, in this case I think the issue might be chloride, so switching to KCl salt substitute would not help - but perhaps I should try it as a test.

#MCAS #MastCells #allergies

There was an asthma medication that worked well for me.
It was based on sodium cromoglycate / cromolyn / CAS 15826-37-6.

King Pharmaceuticals stopped selling their inhalable mixes of it for the western markets.
The brand name was Intal.

It appears to have gone out of fashion. I read that a Scandinavian didn't like it.

Base chemical looks to be still manufactured in China. But I don't know if it is made as an asthma drug.

It calmed #MastCells.

#Asthma #Intal #SodiumCromoglycate #Cromolyn

Brayden Yellman, MD | Underappreciated Co-Morbidities in ME/CFS
video uploaded Oct. 16, 2025
https://youtu.be/od0epKW19og

[13:03] hydroxyurea used to treat a person with POTS and MCAS

Here's an article on the topic:

Efficacy and toxicity of hydroxyurea in mast cell activation syndrome patients refractory to standard medical therapy: retrospective case series [2022]
https://pmc.ncbi.nlm.nih.gov/articles/PMC9388361/

"First used 60 years ago for chronic myeloproliferative neoplasms, HU is now standard of care in reducing the severity of sickle cell disease (SCD) (McGann and Ware 2015). In this context, it is of interest that in animal models and human subjects with SCD, medications that reduce MC activation decreased bone pain (Vincent et al. 2013, 2016). HU also inhibits replication of human immunodeficiency virus-1 (HIV-1) and has been used in therapy of cyanotic congenital heart disease (Lori and Lisziewicz 2000; Reiss et al. 2007). A theoretic explanation for effectiveness of HU in these diseases include reducing MC activity independent of anti-proliferative effects. HU could decrease activity and ability of GI mucosal MCs that capture HIV-1 and mediate trans-infection of CD4 + T cells (Jiang et al. 2015). Similarly, HU could reduce the activity of the increased numbers of chymase-containing MCs in lung tissue of congenital heart disease patients and, thereby, decrease severity of these pulmonary and cardiac diseases (Hamada et al. 1999)."

The mechanisms are probably quite complex. One facet is that hydroxyurea increases fetal hemoglobin production and RBC membrane flexibility - which could increase O2 perfusion. Hypoxia activates mast cells.

#MECFS #MCAS #POTS #DrugRepurposing #hydroxyurea #MastCells #immunology

the big question is after we've managed to cook the whole house to tolerable formaldehyde/VOCs, how long will it take my #MCAS to stabilize?

It'll probably have been a about year of environmental exposure by the time we finish the cookouts, so I'm guessing the answer is on the longer side.

#mastCellDisease #MastCells

Anyone have tips for off gassing a microwave ? Mine broke with no warning and it’s currently my only cooking method.

Im hangry, dizzy and annoyed since it wasn’t even that old.

If I can find a way to replace it, my concern is the smell and how it’ll impact my mast cells.

Usually I would leave a new appliance to sit for a week or two but this is incredibly urgent.
#mcas #mastcells #offgassing

I don’t want to link to this article as it’s irresponsible but I’m begging journalists to stop cosplaying “normal” at the expense of people’s health

Don’t make a case for social drinking. Ask WHY folks aren’t drinking

MCAS is a common comorbid with Long Covid & can cause severe alcohol intolerance.

If you’re unfamiliar with MCAS, I wrote an introduction article linked 👇🏼

You don’t have to have alcohol intolerance though it is a common symptom. Mast cells can impact any part of your body & you can be allergic to something one day and not the next!

It’s a beast of a disease & hard to diagnose.

https://www.disabledginger.com/p/when-youre-allergic-to-everything

#mcas #longcovid #mastcells #COVIDisAirborne #covidisntover #sarscov2

🧠 Brain Inflammation Colloborative:

Anti-depressants don't work for 30% of people who take them.

This study might have discovered why

#Depression
#MastCells
#Histamine

Influencer Dominique Brown Dies of Food Allergy at 34

Anaphylaxis needs to be taken much more seriously than it is.

Epi is great - but it’s only buying you time. Biphasic reactions can be lethal.

Also - especially if you have MCAS - make sure to learn the various ways anaphylaxis can present.

It doesn’t always involve the airway.

This was (in my opinion) a preventable death. It was an egregious disregard for Dominique’s life to suggest she take photos before going to get medical care.

Even “if” you think your reaction isn’t progressing quickly - it could change in an instant.

You should never delay medical attention

If you’re new to anaphylaxis and/or new to MCAS - I highly recommend learning the various ways it can impact your body.

I didn’t realize I was having anaphylaxis the first time it happened to me. I thought it was the flu.

I had diarrhea & vomiting, sore throat, fever and bone pain.

I finally went to ER after three days of suffering not because I suspected anaphylaxis - but because my throat was so sore I couldn’t keep fluids down.

The triage nurse took one look in my airway, stabbed me with an epi pen and whisked me into a code room.

My “sore throat” was actually swelling

My vomiting and diarrhea was classic GI anaphylaxis - and I was also having significant cardiac symptoms.

Thankfully I got medical care in time - and the team who treated me explained what to look for in the future.

Many of us think of wheezing, hives, hoarseness and throat closure when we picture an anaphylactic reaction.

In reality - it can spare the airway AND the skin. It can impact your gut, your heart and your reproductive organs.

In fact - my doctors can actually tell when I’m going into anaphylaxis by the changes in my EKG (highly recommend reading about Kounis Syndrome if your MCAS causes cardiac issues)

When it comes to anaphylaxis - treat early & get to hospital. Make sure you always have an epi pen (or two) with you and check regularly to make sure they haven’t expired.

If you’re unsure if you’re in anaphylaxis - go to ER to be certain.

Had I waited much longer my throat would have closed

Lastly - take people’s allergies seriously. In MCAS we don’t always know what the trigger will be - but when people do know what they’re allergic to - we need to be cautious and ensure they aren’t exposed

If we took allergies more seriously - Dominique would still be with us

For more on idiopathic anaphylaxis and the unique ways it can impact people with MCAS - check out my introduction to MCAS article: https://www.disabledginger.com/p/when-youre-allergic-to-everything

For more on Dominique’s death: https://www.usmagazine.com/celebrity-news/news/influencer-dominique-brown-dies-of-food-allergy-at-age-34/

#mcas #allergies #foodallergies #airborne #anaphylactic #mastcells #epi #anaphylacticshock #chronicillness

When I was first diagnosed with MCAS I thought “a condition I can control!”

I genuinely believed that since there were clear & obvious triggers - I could put in the work, overhaul my life and be free of attacks.

When a patient plans - mast cells laugh.

I threw myself into research trying to learn how to adopt a low histamine diet, clean my air and change my body care and cleaning products.

I (falsely) assumed that if I made enough changes - sacrificed HARD enough - I wouldn’t have to deal with flare ups.

It was exhausting. Many of the changes DID help. A low histamine diet, cleaner air, a proper med and supplement schedule and non toxic cleaning products all helped to reduce my overall “bucket” so that my symptoms were less severe.

The problem was - I continued having attacks. From minor attacks to full blown anaphylaxis - no matter how much work I put in the attacks didn’t stop.

It was incredibly frustrating - and I began tracking everything I ate, used or did in an effort to find patterns.

In the end I realized that sometimes - there are no answers. “Putting in the work” doesn’t guarantee you won’t have attacks.

It’s a help - and we should do whatever we can to minimize our symptoms - but chronic illness (and especially MCAS) doesn’t care about your plans.

I had to learn to let go. Constantly blaming myself, over analyzing every situation and trying to nail down exact triggers was exhausting me.

It wasn’t helping my physical health and was destroying my mental health

At a certain point - we have to accept that chronic illness can be wildly unpredictable - and flares are NOT our fault.

Setbacks happen - and the best thing you can do is give yourself grace and remember that the pain WILL pass.

This applies to Covid as well. I see far too many people who are covid cautious being blamed for their infections. Being grilled as to what their exact precautions were as people try and exploit a perceived weakness somewhere.

This isn’t helping.

If you’re masking and doing everything you can do to avoid covid - you’re doing a great job. If you got infected anyways - that’s the fault of our institutions and governments who’ve allowed the virus to run rampant and encouraged people NOT to take precautions

Just like we have to let go of trying to find every possible trigger for our chronic illness - we have to let go of the blame when people get infected with Covid.

Blame, shame and guilt aren’t helping anyone - and they aren’t good for your health.

To be clear - “letting go” doesn’t have to mean giving up. It doesn’t mean you stop trying to improve your health or stop mitigating for COVID.

It simply means you stop fighting the reality that you’re sick. You lean IN to the conditions and try and find ways to accommodate

It’s a difficult thing to do. I’m still having to work at it every single day. But it’s worth making the effort.

Society, HCWs and even friends & family can be cruel to those with chronic illness - we don’t need to be cruel to ourselves.

Which brings me to my third and final article in my series on living with MCAS - Learning to Let Go.

This post explains how I learned to be kinder & gentler with myself and accept that setbacks WILL happen and they’re not my fault:

https://www.disabledginger.com/p/learning-to-let-go-how-to-accept

1/2

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #MaskBans #NoMaskBans #MastCellActivationSyndrome #mastcells #histamine #lowhistaminediet #mastocytosis #anaphylaxis

At ER with a POTS flare - heart rate is 180 at triage.

Nurse: “Are you fighting with your boyfriend sweetie?”

Me (somewhat indignant) “I don’t have a boyfriend. I have POTS.”

Doctor: “Single? At your age? How come? You don’t want to be married?”

This is misogyny in medicine. I had a cardiac issue which is clearly documented in my chart/medical history.

I showed up alone - having been brought in by paramedics after fainting from low blood pressure and high heart rate.

There was absolutely no reason to make it about my marital status, boyfriend or lack thereof.

Can you imagine if a man showed up at the ER after passing out and his heart rate was 180? Do you think for a second they would ask if he was fighting with his girlfriend?

It’s a rhetorical question - since studies have shown that men are treated faster and more seriously in healthcare settings.

POTS is particularly challenging because it can make a patient appear anxious. It causes high heart rate, shortness of breath, sweating and dizziness. It’s all too easy for healthcare workers to see those symptoms and psychologize the patient.

That was my reality for YEARS. Going to the ER because I had passed out somewhere - and being treated as though I was simply hysterical. Given IV fluids to placate me but never referred to cardiology and properly worked up.

Even once I finally received a diagnosis (more than a decade later) I would continue to encounter hurdles like the one described above.

We must do better. Patients deserve to have their issues taken seriously and their health protected. If you don’t know what’s wrong - admit it. Refer them to someone else. Don’t slap an “anxiety” label on them and send them on their way.

The amount of times I was either gaslit, misdiagnosed or mistreated in healthcare settings is a huge part of why I decided to start advocating. I want to raise awareness about the conditions I have so that patients might better recognize the symptoms within themselves.

I also want to try and change the culture of medicine. The default should be to believe patients. To protect them. To wear a mask around them during an airborne pandemic. It should NOT be to pry into their personal life, psychologize and dismiss them.

Now that I know and understand what’s wrong - I live my life upside down! Almost all my writing is done horizontally and/or with my legs up the wall - because it’s the only way I get enough blood flow to my brain.

POTS can be incredibly debilitating - but there is hope. Treatments and lifestyle modifications CAN help.

I’ve just finished part one of a three part guide into all things POTS/Dysautonomia. It’s my hope these articles will help patients lean into their condition, adapt and accommodate it so that they will suffer less than I did.

https://www.disabledginger.com/p/living-life-upside-down-an-intro

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells #DysautonomiaAwarenessMonth

Because of my POTS - I find it very difficult to spend time in the kitchen. Standing in general is difficult - but that’s compounded in a big way by the heat and smells generated by cooking.

Fainting while cooking is far more dangerous than fainting in most other scenarios (with the exception of the shower) and I’ve had a few close calls.

One day I was roasting sweet potato in my oven and when I opened the oven door to pull out the baking tray - I lost consciousness. I came to with the oven door still open, the apartment was a sauna and the sweet potato wedges were all over me and the floor.

It’s a miracle I wasn’t badly burned - though my food was well and truly ruined 😂.

Needless to say I do most cooking in my microwave now - or rely on carers to do my food prep for me.

Still - I found I needed to do something to help my brain not associate kitchen with danger. I had to change the narrative somehow.

So I got a high stool that I can sit on and still reach the counter - and I created a little “inspiration corner” that’s visible from all parts of my kitchen.

Two signs with quotes that make me smile - and my favourite New York Grand Central Terminal clock (so that I always know what time it is!)

#pots #dysautonomia #chronicillness #spoonie #longcovid #mcas #mastcells #mecfs #covidisairborne #CovidIsNotOver #disability #ableism #disabilityrights #decor #fainting

Part Two in my Three Part Series on MCAS is out now!

MCAS is a beast of a chronic illness. It is devastating to your quality of life to live under the constant threat of anaphylaxis. It's also poorly recognized and therefore hard to find a doctor to diagnose and properly treat.

The good news is there are many things you can do on your own - outside of the medical system - to decrease symptoms and reduce the number of reactions you have.

This guide focuses on diet - but also the myriad of other things that can be triggers (and how to mitigate them).

There's a steep learning curve when dealing with this illness - but the more we share what works and what doesn't - the easier it'll be for those who come after.

https://www.disabledginger.com/p/mcas-and-histamine-diet-isnt-the

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

I lost two friends in the last 48 hours … and I’m reeling. We experience so much trauma and grief when dealing with chronic illness and disability. Watching our friends die is one of the worst. We often have more friends die (and at younger ages) than our non disabled counterparts - and it’s a difficult thing to be surrounded by so much loss. 

You never get used to it. I want to say it gets easier - but it really doesn’t. You may develop better coping skills or get better at hiding your grief - but the pain never becomes easier to bear. 

Tonight I’m mourning the loss of my friends - but I’m also grieving the loss of basic compassion and decency. 

I was always someone who believed that most people were generally good and kind … and the last 4.5 years has put that belief to the test. 

Witnessing the cruelty of others - watching how few people are willing to do even small things to help another person - it’s left a mark on me. 

Hearing people callously say things like “oh well Covid ONLY impacts the vulnerable” as a means of justifying all kinds of bad behaviour … it’s broken me. It’s as though they don’t realize (or care) that the “vulnerable” are people too. 

We dont want to be cast aside. We didn’t agree to spend our lives by the wayside just so other people could have their “normal” back. 

Perhaps the worst part is that more people are joining our ranks every day. More people are about to learn just how few people remain by your side when you become a “vulnerable”  

We don’t have adequate systems and social supports - and many won’t realize it until they try and access help. 

It’s traumatic when you lose your health, people abandon you AND you realize help is not coming. It’s a HARD adjustment. 

Most days I think I’ve come to terms with it - but then days like today make me question everything.

Please check on the disabled people in your life tonight. Check on those who are struggling with poverty or ill health or isolation. Check on the “vulnerable”. Don’t leave us by the wayside. Ask us if you can support us - it can mean so much. 

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

"You should pray more - your disabilities will get better"

We've probably all heard this. That you can pray away an illness (or pray away the gay).

It's hurtful and far too common.

What I'm not used to is being told my illnesses are a "spanking from God."

Yes someone actually said this to me. They compared it to the way you might spank a child who runs out into traffic - you're training them that their behaviour is dangerous.

Apparently l've done something in my life bad enough to be compared to running into traffic.

I have no idea what it could be - but l've found that people who make these awful remarks generally don't care to get to
KNOW you. They want to preach, judge & blame.

They want to believe disability is a moral failing. A sin. So if you're disabled - you must have been
"bad".

For anyone who needs to hear it - your disability is not your fault (and neither is your sexuality for that matter). We did not choose this.

We've done nothing wrong and we don't need to be "corrected."

If someone suggests you can pray away your illnesses - that person is living in serious denial with a big heap of ableism on the side.

It's ironic that these comments almost always come from religious people who preach compassion and tolerance - while giving us anything but.

They tell themselves they've taken the moral high ground - when in reality they've sunk to the lowest low - blaming someone for something they have absolutely no control over. Making us feel broken and treating us like damaged goods.

It's also predatory to provide false hope that simply praying harder (or trying harder) will "fix you". It won't.

I don't care what religion you ascribe to - it's never ok to tell someone they can simply overcome being disabled. That's not how it works.

If you believe this - keep it to yourself. You're not helping anyone when you make these cruel views public.

Maybe ask yourself this... if you get hit by a car tomorrow and are left permanently disabled ... was God punishing you? What did you do wrong?

Or is it possible that when it happens to you (or your children) you will believe it was simply a random turn of events and expect compassion from others?

If you pray to get better and you don't - will you accept that? Or will you assume you too have been
"bad"?

My ask of people tonight is to consider that anyone can become disabled at any time. Health is not a guarantee and disability is not a punishment or a moral failing. It is a part of life.

We deserve equality, compassion and love the same as everyone else.

It's NOT loving to suggest it's someone's fault ...I don't care what mental gymnastics you've done to justify your remark. I don't care if you're trying to "save" them.

Love is listening, helping where you can & learning about what we're going through. Love is being an ally.

Love is not blame, condescension and moral superiority.

Next time you think about judging someone - try to instead ask them how you can support them. You might be surprised what you can learn by being open and compassionate.

To anyone who's heard similar remarks - stay strong and hold your head high.

Know that it's the person making the remark who's showing themselves to be wanting. Know your illnesses are not your fault.
Know you've got a whole community behind you.

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells #religion

Disabled people are often the canary in the coal mine. Things that will ultimately impact everyone - hit us hardest and first.

I’ve spoken about this before with respect to climate change - and how issues like power outages, floods and heat waves are exceedingly dangerous for people like me.

Medication issues are another one. Over the last few years I’ve noticed an alarming increase in medication errors both in AND out of the hospital.

This is a reminder to check and double check ALL your medications - and if you’re unsure you can put a photo of the pill into google and it will tell you what it is.

Shortages are a whole other issue. They’ve also increased in the last few years. Disabled people are often on MORE meds - and may or may not be on ones that are less common or have fewer alternatives.

If you also have MCAS? Shortages are a nightmare. Is there even an alternative? Is it safe? Will it cause a reaction? Are all the excipients the same? It’s exhausting. Many patients end up faced with having to ration medication in order to last until a med comes back in stock.

I don’t have easy answers. I wish I did. I mainly just want to raise awareness. Just because it’s not impacting you YET doesn’t mean it won’t.

It’s always a good idea to know if your medication has an alternative - and if you have MCAS make sure you know the ingredients in ALL of your meds so you can cross check new ones for reactivity.

Never be afraid to ask for help. Having a good relationship with a pharmacist could literally save your life.

And please - wear a mask. Clean the air. Stay home when you’re sick. Try and break chains of transmission. These issues have been steadily worsening since the beginning of the pandemic - and we will all end up in a heap of trouble if we don’t start calling it out and addressing it. It’s not too late to change course - but it needs to happen NOW.

For more on MCAS you can read part 1 of my three part series on this beast of an illness: https://www.disabledginger.com/p/when-youre-allergic-to-everything

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

If you’re disabled or chronically ill and struggling to set boundaries with people … here’s a good litmus test.

I ask myself if this is a person who will show up for me if I get worse and need help? Have they helped me up until this point? Or will they likely disappear if I become more severe?

The answer may disappoint you - but I refuse to risk by baseline for anyone who won’t help or show up for me in the bad times.

I also remind myself that people who really love and care for me will respect and honour my boundaries - and won’t expect me to risk what little health I have left.

For more on boundaries, gaslighting, loss of friends and family and how to find your tribe:

https://www.disabledginger.com/p/gaslightingforthenewlydisabled

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

Ok let me understand this… the neck and throat are “exposed areas” but your clothes, purse, pocket, the air ALL AROUND YOU is not?

This makes absolutely no sense. If your mask is off in public - you’re exposed. Regardless of where you put said mask.

To be clear - I hate when people wear their masks around their chin and neck and I wouldn’t want to put it back over my mouth after either. But this is simply bad messaging.

Imagine if instead they showed the proper way to Don and doff and explained that respirators like N95s have electrostatic charge to further prevent infection?

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

Is there anything about POTS, MCAS, EDS or chronic illness in general that you’ve always wanted to know? Something that you don’t think gets discussed enough?

I’m building out a series of posts on these difficult conditions - and open to any and all suggestions!

#chronicillness #EDS #POTS #MCAS #Dysautonomia #EhlersDanlosSyndromes #spoonie #mastcells #disabilty

“Your disabilities are your fault! Try harder! Eat better! Do yoga! Don’t mask! Care about health!”

We’ve heard it ALL. You can’t “healthy living” your way out of disabilities. Many are born disabled.

Folks who “don’t do sick” are rejecting reality & their ableism harms us.

More and more I think people say these things because they desperately NEED to believe that their healthy lifestyle will ensure they don’t end up “like us.”

Disabled people are so disliked and mistreated in society - that people fear becoming us and lash out as a result.

More on the “don’t do sick” crowd - including how we’re frequently expected to hide our disabilities so as not to inconvenience others.

Never forget that it’s ok to set (and hold) boundaries. Never apologize for being sick!

https://www.disabledginger.com/p/we-dont-do-sick-if-you-cant-hide

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

I’m not good at asking for help. I never have been. Today I HAD to ask for help - and with a rather delicate task.

I had a serious flare of my POTS and MCAS at the same time. The result was horrendous GI issues … only I couldn’t get myself to the bathroom. I tried, fainted and made a mess.

I find it humiliating to ask for help going to the bathroom. I know I shouldn’t feel that way - but knowing and feeling are two very different things. I’m still working on acceptance - and accepting that I can’t always get to the bathroom (which is only 10 feet from my bed) on my own is HARD.

Thankfully a carer was here helping me with food deliveries - and they helped get me cleaned up and to the bathroom. They also suggested I get a bedside commode.

I’m really struggling with this … having to look at a bedside commode will be a constant reminder of how much health and independence I’ve lost. It will be hard on my mental health. Though it would likely prevent injuries and future accidents.

I share this - red faced and embarrassed - because these are the types of things disabled and chronically ill people struggle with. We’re taught not to talk about them. To “push through” and hide our pain.

I want to change that. I want to find a way to believe it’s OK that I need this additional level of assistance. I don’t want to be embarrassed or ashamed.

The other issue is my bedroom is incredibly small so there’s no room for it except to put it IN the doorway. It’s not practical and I worry could result in a fall or accident in the night. Im also not confident I can empty one myself and/or deal with the smell - though I’m sure there are ways around that.

Appreciate any and all tips!

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

I published my first article on MCAS (mast cell activation syndrome) yesterday. It was a broad overview of the condition as well as the story of my first anaphylactic attack.

My second piece will be a deep dive into diet, food prep and storage, indoor air quality, personal care products, cleaning products and cooking styles/tips.

Is there anything else I’m missing? Outside of medications and supplements (which would easily be its own article)?

I would love to know what people wish they knew about MCAS - or what areas they could use additional support. I think stress reduction and acceptance are also important - because it is an exceedingly hard condition to live with.

Let me know below if there’s anything you want added or covered!

Beginner’s article here: https://www.disabledginger.com/p/when-youre-allergic-to-everything

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

When you’re allergic to everything and nothing all at once…. You may have MCAS.

Suddenly allergic to alcohol? Certain foods making you sick? Unexplained swelling and rashes? You may have MCAS.

Did you know you can experience anaphylaxis without ever having throat or facial swelling? I certainly didn’t! My first episode of anaphylaxis started in my gut and my heart - and I genuinely thought I had the flu.

I suffered for two days with unrelenting nausea and diarrhea, tachycardia, chest pain, shortness of breath and sweating. I lay in my bed desperately trying to force fluids down - but my throat was sore and swallowing had become difficult.

I finally relented and went to the ER - largely due to dehydration. Imagine my shock when the triage nurse took one look at my throat, stabbed me with Epi and whisked me into a code room.

I genuinely had no idea I was experiencing anaphylaxis. The throat issues felt just like strep and/or a bad flu. It happened so slowly that I didn’t even realize.

I wrote this article as a primer into the wild world of mast cell disease. These cells are everywhere in your body - contain over 200 mediators and can wreak havoc in a million different ways.

I hope it will help people better understand the condition - and I plan to write two more pieces which will explore in greater detail how to get diagnosed, how to treat it and (perhaps most importantly) how to learn to live with the constant threat of anaphylaxis.

https://www.disabledginger.com/p/when-youre-allergic-to-everything

#CovidIsAirborne #CovidCautious #CovidIsNotOver #CleanAir #WearaMask #Disability #LongCovid #Ableism #Denial #CleanAir #Pandemic #PublicHealth #InfectionControl #Eugenics #SafeHealthcare #N95 #Respirators #MasksWork #MaskUp #Spoonie #Discrimination #Dysautonomia #mecfs #pots #mcas #communitycare #wearamask #chronicillness #keepmasksinhealthcare #mastcells

PSA for Long Covid folks experiencing mast cell issues for the first time - anaphylaxis is not JUST airway issues. Anaphylaxis can impact all major body symptoms & you can be having an attack with NO skin or airway involvement.

My anaphylaxis is almost always cardiac & GI.

I find that many people (including some HCWs) still associate anaphylaxis with throat closing and hives/rashes. While that may be the typical presentation (especially for food allergies)… patients with MCAS are anything but typical.

My very first anaphylaxis experience started with a sore throat & flushing but no noticeable breathing difficulties. I had terrible diarrhea & stomach cramps, a very low pulse & was pale and woozy. I chalked it up to a bug and tried to rest it off.

I didn’t go to the ER until more than 48 hours later when the sore throat had become so severe I could no longer swallow fluids. At that point I still thought it was strep or tonsillitis & was shocked when triage whisked me into a code room after administering Epi

It turns out I had been in anaphylaxis the whole time - but my body exhibited the cardiac and GI symptoms first. The airway symptoms developed slowly so my body had time to adjust and I didn’t realize how swollen my airway was.

The chart I posted shows all the different ways it can manifest - and it’s important to be educated on the various presentations so you recognize anaphylaxis & can get immediate treatment. Even uterine cramps can be a sign. If respiratory involvement is absent but two other systems are impacted - that meets criteria for anaphylaxis.

I’ve been dealing with MCAS for years and I’m still learning all my triggers as well as the strange early warning signs my body gives me. Lately it’s been a hoarse voice, raised rash on shoulder & severe vomiting. Teeth chattering, violent shaking & slurred speech also common

I share my experiences in an attempt to educate people on the varied nature of MCAS attacks and the fact that anaphylaxis is not always sudden or obvious. Once identified it’s important to treat & be monitored for rebound or biphasic reactions.

Lastly if you have significant cardiac involvement with your MCAS reactions - it’s important to be aware of a relatively rare condition called Kounis syndrome. It’s an acute coronary syndrome caused my mast cells/allergic reactions.

It can cause spasms in the arteries of the heart and possible breaking off of plaques leading to coronary artery blockage. While considered rare - in recent years there’s been speculation it’s more common & simply under diagnosed and/or misdiagnosed.

I keep copies of all my EKG rhythm strips when I need paramedics or the ER for my MCAS reactions. It can be critically important to have them reviewed by an MCAS savvy cardiologist.

If ever in doubt - seek medical attention. Speak to your medical team about carrying an Epi pen and go to hospital if you have to use it. Even if you feel better - rebound reactions can be incredibly severe.

While MCAS can be an absolute beast to manage - medications, lifestyle and dietary changes can make a tremendous difference in quality of life. Patient support groups are an excellent resource for teaching how to identify & and eliminate triggers.

They can also provide emotional support which is critical as MCAS can be isolating & lonely. Remember you’re not alone & reactions aren’t your fault. Even the most careful patient can end up in anaphylaxis & we must give ourselves grace. It’s not our fault - it’s the disease.

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill #LongCOVID

#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine

Heard a quote today that really resonated (unsure who to attribute to)

“If you only have 10% to give and you gave 10% then you’ve given 100%”

For those of us with chronic illness this is so important to remember. Our 100% looks different than other people and that’s OK!

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill

#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine #LongCovid

This time of year is awful for MCAS & POTS patients. While everyone else enjoys the end of a long cold winter - pollen & grasses fill our histamine bucket and warmer weather strains our hearts.

I know it’s Spring when I start having middle of night attacks… my sleep schedule falls apart and I find myself reaching for coping tools. Here’s how I handle those nocturnal attacks.

First of all MCAS isn’t limited to “just” histamine. These pesky cells contain hundreds of mediators that can wreak havoc in your body. Histamine just happens to be the one that’s most well known. It also happens to be the one that loves nighttime parties.

When too much histamine builds up in the body & the brain… it gets released in the early hours of the morning. Many people may never notice this occur - but if you’ve got MCAS you’re likely more than familiar with the aggressive & rude wake up.

It’s not uncommon to wake up tachycardic and feeling panicked - covered in sweat, wheezy, itchy and nauseous. This happened to me every night during spring for YEARS before I made the connection. Now that I know - there’s some things I do to make it slightly more tolerable.

First - natural fibres in bed! I really can’t stress this enough. You want your pajamas and bedding to be a material that breathes. Cotton, bamboo and linen are all good options. A zippered mattress cover that’s designed for allergies will help as well.

When I know I’m at my worst - I sleep with a towel underneath me in bed and a clean towel on the opposite side. I also keep a change of clothes in bed with me. This way if I wake up soaked and I’m too dizzy to get up - I can change in bed & roll onto the dry towel.

Don’t neglect your pillow either! Having a pillow cover that’s designed to keep dust & allergens out will help - and I wash my pillowcases every few days. I also recommend having an air purifier in the bedroom with the best CADR you can get (clean air delivery rate).

You want as much filtered air being circulated while you’re sleeping as possible. I avoided this for the longest time and was really surprised at the difference it made when I finally put a HEPA in my bedroom.

Be prepared for hydration needs! I keep a bottle of water on my nightstand & another (sealed) bottle in bed. When I have a particularly bad attack my already low BP drops further - making sitting up dangerous. A water bottle within reach helps me avoid fainting.

Water is key to flushing out histamine and other mediators - so if possible I drink 500ml before I attempt to go back to bed. I also keep rescue meds on the nightstand - but I make sure they’re portioned out in the exact “safe” dose. This avoids any groggy dosing errors.

If you’re reaching for the Benadryl (as many of us do) be aware of the Benadryl rebound. While it’s a very effective antihistamine for an MCAS flare - it suppresses the histamine without actually removing it from your body. When it wears off the flare CAN come raging back

If I resort to Benadryl I increase my water intake as much as I can tolerate to offset the rebound - but ideally I try to control reactions with a mast cell stabilizer versus an antihistamine. Those are meds like Cromolyn & Ketotifen.

Depending on the flare - I can wake up burning hot or freezing cold. I keep an extra blanket on opposite side of bed for when I’m cold - and an ice pack wrapped in a cooling buff so it’s still frozen if I’m hot. Ice pack to the back of the neck can also help break tachycardia

If I’m extremely tachycardic and the ice pack doesn’t work - I flip myself around in bed and put my legs up the wall/headboard. This helps calm the autonomic nervous system. Deep belly breaths while in this position are very soothing - just don’t fall asleep that way!

Mast cells love to wreak havoc on the bladder & bowels - and unfortunately more often than not an emergency trip to the bathroom ends up being needed. If possible I drink water BEFORE getting up & do as many ankle pumps as I can tolerate. This staves off fainting 50% of time

If you live alone or your bathroom is far from bed… consider a bedside commode. It’s not something we LIKE to think about but it reduces the risk of falls & its easier to get back to sleep if you’re not struggling to walk to the bathroom. Accessibility tools are our friends! 1/2

#ChronicIllness #MCAS #POTS #Dysautonomia #MastCells #Spoonie #chronicallyill

#CovidCautious #sarscov2 #maskup #WearAMask #CleanAir #Pandemic #Disability #accessibility #DisabilityRights #N95s #Ableism #CommunityCare #CovidIsAirborne #CovidIsNotOver #Histamine

Eosinophilic Esophagitis (EoE): Lessons Learned from Medicaid and the UVA EoE Cohort

https://www.youtube.com/live/wt4gW_asI7g?si=m-jNljWnzwM5FH9X

presentation by Dr Emily McGowan at Fralin Biomedical Research Institute, Feb 9, 2024

- EoE incidence increasing [18:28]

- EoE is induced in mouse model with SDS, a detergent used in toothpaste. [21:28]

- even when eosinophils are cleared with anti-IL-5 Ab, symptoms remain [29:00]

comment: I & many others with MCAS have dysphagia. If eosinophils are at the party, it is usually b/c mast cells invited them. Also, MCAS affects women more.

- they usually take more than 5 biopsy samples when trying to diagnose EoE [16:10]

- EoE is IgG4 mediated [44:26]

- EoE associated with high socioeconomic status; Dr McGowan suspects this is due to underdiagnosis in ppl w/ less access to care.

comment: it would be interesting to know of EoE is associated with high PFAS burden, which is higher in ppl w/ higher income. PFAS have surfactant properties, like SDS. Also, there's increasing use of powerful surfactants in herbicides due to development of herbicide resistance.

- the Cytosponge for minimally invasive diagnostic testing [37:56]

#Allergy #Immunology #Gastroeneterology #EosinophilicEsophagitis #Eosinophils #MastCells #MCAS #dysphagia

Do You Have Unpredictable #Allergies? Blame #MastCells
https://www.refinery29.com/en-gb/allergies-mcas-mast-cell-activation-syndrome-women