Catherine w/ MCAS @MCAS_WTF
MCAS = Mast Cell Activation Syndrome MCAS is the equivalent of having an immune system with PTSD Also have ME/CFS & Fibromyalgia Portland, OR Joined November 2022-
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@JGjanegreen The Royal Prince Alfred Hospital's Failsafe project found food chemicals (phenols & amines) affect some peoples' behavior. It's not rare. Mast cell activation disease an underappreciated cause of neurologic and psychiatric symptoms & diseases. ncbi.nlm.nih.gov/m/pubmed/26162…
@ahandvanish We're thrilled for the #LC community! The non-COVID #MyalgicEncephalomyelitis community has long actively supported #pwLC. The complete exclusion of non-COVID M.E. from the name and content of the Act is devastating. Will the LC community demand explicit inclusion of #nonCovidME?
Every. Last. Word. Of. This.
There are words that we should banish & 'restrictions' is one of them. For one thing, most protections are barely if at all restrictive (clean indoor air, vax, testing/treatment, mask in high risk settings), & secondly what's more restrictive than having a debilitating illness?!
@ShaneyWright This is true for many reasons but mast cell-microglial feedback loops are a big one. Mast cells release mediators that trigger microglia and activated microglia trigger mast cells - and round and round it goes. this is one of the mechanisms behind neuroinflammation.
What is the ONE thing people need to know (about management/treatment) if they have #MECFS or #LongCovid? In my opinion this post by @ShaneyWright would be in my top 3 for sure. What is yours?
This post on EVB as a trigger for #MECFS #LongCovid might take a few tries to read in full with our foggy brains but it is worth it as it really ties everything we know to date together. Bookmark and keep coming back to it.
This post on EVB as a trigger for #MECFS #LongCovid might take a few tries to read in full with our foggy brains but it is worth it as it really ties everything we know to date together. Bookmark and keep coming back to it.
#MyalgicEncephalomyelitus can no more be cured by brain retraining, exercise, CBT or acupuncture than can MS, Lupus, or cancer. That’s it, that’s the tweet.
Hi, this is very important information everyone needs to hear. Test on the 4th day of symptoms. “New variants may cause differences in [the] timing of viral load. It may affect the timing of when tests may be the most optimal to detect the virus.” abcnews.go.com/Health/wait-da…
An awfully short window to use "the tools!" If the home test isn't positive until day 4 of symptoms and antivirals must be started within 5 days, what are the chances of timely treatment? If you think these time frames are going to work, you haven't met the US healthcare system.
An awfully short window to use "the tools!" If the home test isn't positive until day 4 of symptoms and antivirals must be started within 5 days, what are the chances of timely treatment? If you think these time frames are going to work, you haven't met the US healthcare system.
SARS-CoV-2 can trigger a cytokine storm. It’s like the fire department going overboard and using so much water that they flood the entire neighborhood, causing more damage than the original fire. It can lead to severe inflammation and organ damage.
🔥Awesome quote from @PutrinoLab
Mast cell–nerve axis with a focus on the human gut doi.org/10.1016/j.bbad… 1/n
@8Eevert @Szyzygy2 Mast cells are considered to be "partners in crime" of neuroglia - literature see in our paper: frontiersin.org/articles/10.33…
More evidence of endothelial dysfunction. Let’s call thrombotic endothelialitis the unifying hypothesis for LongCOVID: viral persistence, organ damage, antibodies, mast cell activation, platelets hyperactivation and microclots all culminate to cause wide-spread endothelialitis.
More evidence of endothelial dysfunction. Let’s call thrombotic endothelialitis the unifying hypothesis for LongCOVID: viral persistence, organ damage, antibodies, mast cell activation, platelets hyperactivation and microclots all culminate to cause wide-spread endothelialitis.
“Once again, long COVID prompts investigations that researchers in ME/CFS have wanted to do for years but lacked the funding for.” I hope they can repeat this study in #MEcfs now
“Once again, long COVID prompts investigations that researchers in ME/CFS have wanted to do for years but lacked the funding for.” I hope they can repeat this study in #MEcfs now
Takeaway: “Whether you have long COVID or not, the coronavirus appears to be having a dramatic long-term effect on the immune system. Even recovered patients still exhibited a striking immune activation several years after they’ve recovered from the virus” healthrising.org/blog/2023/09/1…
"Reservoirs of SARS-CoV-2 and their potential role in Long COVID" 'Specific mechanisms called out by the authors for special consideration include effects on the the vagus nerve, induction of autoimmune responses, and the neurological system' wsws.org/en/articles/20…
COVID-19 virus detected in tears of patients with, without ocular symptoms “SARS-CoV-2 may be transmissible through ocular routes, highlighting the importance of taking precautions during ocular examinations of patients diagnosed with COVID-19” healio.com/news/optometry…
Toaknars @toaknars57018
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@JGjanegreen The Royal Prince Alfred Hospital's Failsafe project found food chemicals (phenols & amines) affect some peoples' behavior. It's not rare. Mast cell activation disease an underappreciated cause of neurologic and psychiatric symptoms & diseases. ncbi.nlm.nih.gov/m/pubmed/26162…
@PedsAllergyDoc So inappropriate activation with systemic disabling symptoms doesn't matter?
@NimatGray @auinappropriate @laurenancona Best wishes to you💜 My child's epilepsy remitted with treatment of the mast cell disease. 18 years of clean EEGs now.
Mast cell activation disease diagnosis can reveal primary immunodeficiency (PI) primaryimmune.org/resources/news… #MCAS
I was thrilled to hear that @SenSanders has proposed $10 Billion in research funding for #LongCovid -- this is a HUGE win for patient organizing. I'm also disappointed that there is no mention of commonly post-viral associated conditions like #MECFS, #Dysautonomia, & #MCAS.
@ahandvanish We're thrilled for the #LC community! The non-COVID #MyalgicEncephalomyelitis community has long actively supported #pwLC. The complete exclusion of non-COVID M.E. from the name and content of the Act is devastating. Will the LC community demand explicit inclusion of #nonCovidME?
Chronic illness sucks in the sense that I’m still the exact same hard working, get after it individual that I always was. That part of me is still inside of me. Yet I’m held back daily by my symptoms.
Many with #LongCovid have a mast cell disease in MCAS: chronically over-activated mast cells. Why then are docs incessantly pushing exercise for Long Covid – a mast cell disease in large part? You don't see exercise being pushed obsessively for Mastocytosis. Unthinking nonsense.
@CasualUfc @chydorina Salicylate intolerance is a thing. Look it up.
@chydorina @MCAS_WTF @CasualUfc For some people, sure. Everyone's allergies are different. The Mast Cell Disease Society declares salicylate intolerance as one of the top problem groups for patients.
@GrandpaSeth2 lol....not everyone has the ability to hunt - especially the chronically ill and bedridden. plus, i simply would not want to kill.
@metejtme i wish I could give you some good feelings today and bring a bit of love and light into your life. i am smiling at you right now. i hope you can feel it. life is fucking hard.
@microbeminded2 This is a mast cell activation phenomenon. Covid worsens latent mast cell disease. This warps th2 immunity. We carry remnants of all viruses we've had, but the immune system keeps them in check. Should the immune system become disrupted, as in Covid, the virus becomes active.
@Craig_A_Spencer Why is it referred to as something from the past? The pandemic is still happening.
@OnlyAnExcuse @VaxxersAnti Research has demonstrated that 1/3 of people have a psychiatric conition after Covid. Surely that explains a lot of the anger and oppositional issues that are so common now.
@PostOpPrincess These phenomena are to be expected. Research shows that 1/3 of Covid patients develop a psychiatric disorder after their infection. That's pretty much every person in the country. 1/3 of all adults. Behavioral outbursts will inevitably occur as a matter of course.
@miriamfrankmac I didn't even realize Evusheld was still being used. I had a good 6 months remission for years ago on Evusheld