Discover and read the best of Twitter Threads about #MCAS

Most recents (24)

I can’t help but wonder if these were some of the same people yelling at disabled people wearing masks circa Feb/March 2020, when huge % of doctors + CDC thought it was a bad idea…
For what it’s worth, > 50% of my closest #mecfs/#MCAS friends have had vaccine side effects ranging from mild to severe, three severe enough that they were advised not to get the second dose. Please don’t call this “vaccine hesitancy.”
Please also consider who does and does not enroll in vaccine trials and in what numbers. Were 20+ patients with these or other complex diagnoses enrolled in trials? Of course not.

Thank you to everyone who is able to get safely vaccinated, on behalf of everyone who cannot.
Read 3 tweets
The #LongCovid community can learn a lot from those suffering with #MECFS. We should welcome their attempts to reach out- it’s in our interest to collaborate. And if #MECFS patients end up getting the recognition & care they deserve due to #LongCovid research- good I say!
I’m not saying the two conditions are identical. LC is heterogenous- however there is a subgroup of LC sufferers with fatigue who exhibit PEM, the cardinal feature of ME. Both conditions can be associated with #MCAS #POTS sensory overload, stimulus hypersensitivity & severe pain
ME suffers have been stigmatised, ignored & abused by the medical profession, media & wider public. The poorly conducted, discredited #PACE trial recommended Graded Exercise Therapy (GET) & CBT- this has harmed and disabled countless sufferers by its inclusion in ME guidelines.
Read 10 tweets
Anyone else think that a big issue with #parents thinking that food is “curing #autism” is the fact that it’s actually treating highly co-morbid #MCAS, and that people are just mistaking the behavioral impact on #MCAS as “an autism thing?”

#ActuallyAutistic #Neurodivergent
- It’s thought that 1 in 10 with #autism have #MCAS

- MCAS triggers can affect you systemically, & the chemical effects on your body cross the blood-brain barrier.

- Removing foods that have these chemical effects = less stress on the body, & the brain 1
- Less stress on the body & 🧠 (as this involves neurochemistry) causes less distress in general, so you see less of the signs of stress in that #autistic individual. You’re not “curing their autism.” 2
Read 10 tweets
Aww, crap...I screwed up.

Reminder for anyone ELSE in the northeast w/severe bug bite reactions...*mosquito season is open.*

If you’re fighting your body on getting those deliveries in, remember that getting them in before dusk/a potential bite is MUCH better.
Of course this happened w/the big delivery (the only water I can drink, until I see if a reverse osmosis system works), when I had to use the hook to keep the door open.

I’ve been so busy thinking of setting up🦟 window netting that I forgot about safe times to open the door🤦🏼‍♀️
@DanDanNoodles78 “ISS SQUITOS”😩
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#NEISvoid, recently found out that Singulair is available in generic form...I had the familiar “it helps but I’m having untenable reactions to fillers” w/the original. Has anyone had issues with the original and found success w/a generic?
This was years ago, before #MCAS set in (especially hardcore). But I still had an issue with fillers.

I need to look up the brand/possible generics, but I REALLY wish I knew what the problematic filler was. Even if Singulair was a different brand, I often react to TEVA meds🧐
I wonder if they (TEVA) often contain something that has a high incidence of reactivity? I’ve seen several people with a TEVA issue. I’d really love to get to the root of it.
#ChronicIllness #Mystery🧐
Read 4 tweets
Body Politic has published an important open letter to the @NIH @NIHDirector urging the prioritization of #LongCOVID research that builds off prior research into #MECFS and related conditions.

👉… by @itsbodypolitic @fi_lowenstein @ItsAngInLA The organization Body Politic has written an Open Letter to
In December, Congress provided $1.15 billion over 4 years for @NIH to “support research into the prolonged health consequences of #COVID19”. With many newcomers to the field there’s cause for concern that experienced #MECFS researchers may be overlooked.… “We are writing today to urge the NIH to prioritize fundin
#LongCovid and #MECFS have much in common and are increasingly joining forces to drive change that might lead to diagnostics, treatments, and a cure. “Long COVID patients share both symptoms and experiences w
Read 10 tweets
@JanetDafoe For years, researchers like Drs. Klimas and Younger have used ME/CFS as comparison groups to leverage funding from other areas. Now that we've used this strategy for advocacy, we delivered the single largest financial opportunity to ME/CFS researchers ever: over $1 BILLION… 1/4
@JanetDafoe $1 BILLION that is now available for ME/CFS researchers to continue their work. And, we have another $100m in the works for medical education, data harmonization, and research regarding disparities and access to care. #LongCOVID is the biggest opportunity for #ME research 2/4
@JanetDafoe At the current rate of NIH funding for ME/CFS, it would take 76+ years to reach $1B. Please watch today's hearing. My heart breaks to see the mistrust, suspicion and in-fighting. Even sadder to see our community attacking others with the same symptoms. 3/4
Read 4 tweets
There have been some really thoughtful comments since we shared our first #longCOVID rehabilitation paper on here and I wanted to take some time to transparently share 5 points about how our team has been tackling this complex and challenging problem - a thread (1/n)
1) Let's start with the "camp problem". Since the beginning we have noted the fact that #longCOVID shares similarities with #POTS, #dysautonomia, #CFSME, #MCAS, various #autoimmune conditions, et al. We are speaking with all of these communities and we are learning (2/n)
from some truly wonderful clinicians and patients, but we are not going to silo #longCOVID into just one of these conditions. In fact, as a group, our working hypothesis is that #longCOVID is unlikely to be one single is probably more like 5-10. (3/n)
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1) The leading doctors of #COVID19 who's cheap life saving protocols have been ignored/dismissed.

'It's astonishing we've had so much pushback. People just don't believe us. People think it's dangerous. It's perplexing as our mortality data proves that it works' #DrPaulMarik
2) "These are very inexpensive drugs, and there are executives flying in their Lear jets who don't like this. Because it's threatening to making money" (#DrPaulMarik MATH+ & iMask Protocols)
3) "When you early adopt something, especially from a group of your peers there is a lot of professional jealousy. It's like the politics that you see everyday. You are seeing same thing in medical field. For proof they want a big trial" (Dr Joe Varon MATH+ & IMASK Protocol)
Read 86 tweets
1/ OK placenta/women's health tweeple, I have a question about the placenta, #SARSCoV2 and #COVID19.

Historically, there's been an association of hyper-histaminemia occurring in specific gestational complications including preeclampsia, spontaneous abortion & preterm labor. 🧵
2/ In 2018, a research group has proven, for the very first time, that DAO is produced by the placenta, which is genetically associated with the baby. This production is down to a specific type of cells, extravillous trophoblasts (EVT). @placentadoc…
3/ These cells are responsible, inter alia, for modifying the blood system in the uterus of pregnant women so that more blood is delivered to the placenta, thereby ensuring that the unborn baby receives sufficient nutrients.
Read 9 tweets
We should take some of the most replicated findings in #MECFS and study them in #longCOVID patients. Some of these findings, if also present in #longCOVID, *could* potentially imply avenues for symptom management or therapeutic treatment.
Here are a few that might be interesting:
1️⃣Low serum carnitine:
2️⃣ Low natural killer cell function:…
3️⃣ Elevated lactate (blood, brain):…
4️⃣ Cerebral hypoperfusion:…
Read 25 tweets
A lot of #EDS patients talk about developing high pain tolerance because of our frequent dislocations. I want to take a second to talk about the assumptions embedded in that phrase because it so often minimizes what were coping with. 1/8
I have severe allergies to most meds, I have no stable pain meds, I have bone pain from #MCAs, and I dislocate daily. I'm in a lot of pain all the time. And claiming I have "high tolerance" is a disservice to what I'm actually coping with. 2/8
I've learned not to cry, not to throw a fit, to keep working through the pain, because I've been told I need to my entire life. I grew up with Drs gaslighting my pain. I became a teen with doctors gaslighting my pain. I entered my 20s in the same way. 3/8
Read 8 tweets
Damn it.

I’m going to assume that “severe allergies” applies to people with Mast Cell Activation Syndrome (MCAS). #NEISvoid
So I’m eager to get a COVID-19 vaccine, but it’s looking like people with #MCAS or severe allergic reaction histories might want to wait until they have time to include people like us in safety trials.

Emergency approval processes apparently allowed for skipping that step:
Bottom line:

The different vaccines have different methods of action and are produced differently.

If you’re healthy without known allergies or immune issues, you’re probably good to go.

But if you have a history of allergies or autoimmune concerns, talk with your physician.
Read 4 tweets
Folks concerned about my advocacy for structural, neurological diagnoses, for #MCAS and connective tissue disorders, or for "#MEspine"––I really do want to understand what is at the heart of this. Frankly, it has been hard.
There is a lot of misinformation floating around (or simply lack of education/awareness––again, it's a lot of different conditions, and I know next to nothing about most of them, other than the ones I happen to have). Image
I see a really big gap between how American patients are responding to this information v. patients in the UK & Europe, and I don't fully understand all of the reasons for that. I think that's worth discussing amicably, if we can.
Read 37 tweets
Going to try to pick up where @ahandvanish left off on live-tweeting today's NIH #LongCovid workshop

"We're really having an epidemic of this chronic critical illness and it deserves attention as well." - Dr. Terri Hough, OSU on pulmonary sequelae of #LongCovid.
GI/liver symptoms in hospitalized patients prevalence:
- Dr. Hashem El-Serag (Baylor)
Read 34 tweets
I am so angry. So much of Jenny’s case should / could have been caught when she was a child or teen, before she ”got sick.” It would not be hard to get this right. We do not need some miraculous feat of science to put into practice what we already know to be true.
Any ME org that is not joining forces with other organizations to educate the ME community on #EDS and #MCAS, that is not talking about comorbidities, is failing patients. I count @MEActNet in that boat. We have got to do better.
Jenny was diagnosed with ME when she fell ill at university, but she was born with #vEDS, which has a genetic marker. She had obvious phenotypical signs, but they were all missed.
Read 4 tweets
Separately, I’m trying to work on a Medium post re: my concerns about people pursuing neurosurgery. My basic position is diagnosis for all, surgery for a few and only after 6-24 months of intense self-education, seeking multiple opinions, and exhausting nonsurgical options.
(Unless your doctor deems your case medically urgent, which is rare.) I am similarly having a hard time writing this piece as it quickly becomes an overly long, overly technical treatise. This topic is so nuanced and complicated, with many unknowns.
So if you have any questions about surgery...please do ask them. It might help me figure out how to frame and focus the piece!
Read 25 tweets
So #thankful to have spent the last many days wandering a deserted island, doing what I haven’t been able to do in a good decade. A woman in a peach windbrea...
I am #thankful for my body, which is fragile but resilient. This year, I spent six months mostly bedbound following #COVID19. In the aftermath, I found myself almost as weak as I was after my neurosurgeries. COVID also worsened my #MCAS to a terrifying degree.
In September, I began a (second? third?) long climb of physical therapy and strength training so that I could stand and walk again.
Read 10 tweets
With many years experience diagnosing and treating Histamine Intolerance and Mast Cell Activation Disorder, I have noted a strong similarity in the symptoms of these conditions and those of Long Covid sufferers. (1/3) #LongCovid #COVID19 #HIT #MCAS
Last week I saw six patients in my clinic who were suffering the symptoms of Long Covid, and they all clearly had undiagnosed HIT and MCAS. I am now treating them and hope to be able to help many more. (2/3) #LongCovid #COVID19 #HIT #MCAS
For more information, please see my website where I have put together a PDF detailing my analysis on this medical theory which could have significant therapeutic and prognostic implications. (3/3) #LongCovid #COVID19 #HIT #MCAS
Read 3 tweets
On the use of mast cell stabilizers in #COVID19 👇 with a list of publications starting to document positive results clinically

Mast Cell Activation #MCAS/ related mechanisms have long been discussed by #COVID19 #LongCovid patients has a potential issue beahind their symptoms
Found this paper on Mast Cell Activation in #COVID19 interesting, at least in theory, because it links #MCAS to the multi-system inflammatory syndrome in children #MISC + blood circulation issues in capillaries

Will read later #LongCovid #apresJ20…
Read 4 tweets
#DysConf2020 Neurogastroenterologist @LauraAPace talking about the multidisciplinary #EDS clinic she helped to set up -- time to dx for the geog area was v long, time to being seen by a clinical geneticist for referred pts was THREE to FIVE YEARS.
Wanted to track comorbid disease burden/syndrome burden. Clinical phenotype was often more severe than the diagnostic label suggested (for hEDS, etc). Need a more comprehensive dx for these patients.
The clinic ultimately didn't work bc, when the clinicians from the specialist EDS clinic recommended patients be followed up with formal screening for potential autonomic dysfunction,& passed on the testing/mgt outline to their primary care physicians...
Read 12 tweets
@satish_r_raj: pharmacological treatment for #POTS. Notes that non-pharm mgt (compression, fluid balance) are generally the foundation of management, even for the many pts who do also require medication as part of their mgt strat. #DysConf2020
Not just about high HR - tilt table cf normal controls, obv the #POTS pts get HRVelevation — BP may not change heaps — but also they feel MISSRABLE, v unwell, presyncope. .@satish_r_raj #DysConf2020
Up to 70% of #POTS pts have low blood volume!! Not heaps of data supporting this historically, but theorised that hypovolemia may increase sympathetic tonicity & trigger hyperadrenergic state. Now have data supporting this in forthcoming study! #DysConf2020
Read 36 tweets
@KylenH @bennessb Yes, I think so. I don’t have the super-soft/delicate/stretchy skin of EDS classic type,, & although I do get atopic dermatitis it seems to be different to the irritation & peeling skin I get from tape. I also get a particular (&, I think, related) skin reaction to anything that
@KylenH @bennessb rubs, including my otherwise-awesome thumb splints. Alsoalso very prone to skin tags in high-friction areas, fwiw. I don’t seem to have full-on #MCAS on anything, but I do wonder if #MastCellsGoneWild could be implicated somehow,
@KylenH @bennessb esp given my recent experiences of simultaneous #multisystemic #autoimmune #chronicillness affecting GI system (#IBD: #crohns but also #GORD), skin (#PyoG), joints (#AnkSpond/#spondylarthropathy/ seronegative #arthritis) & prob aspects of the respiratory system
Read 9 tweets
Would anyone like to participate in an open-minded panel discussion about links between #LongCovid, #MECFS, #Dysautonomia, #PoTS and #MCAS? A friend needs people for a conference. Let me know! 👇
@TilmanAndris Tagging you as we had an interesting chat before.
Also tagging @exceedhergrasp1.
Read 4 tweets

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