Discover and read the best of Twitter Threads about #mcas

Most recents (24)

2 Jahre 4 Monate #LongCovid #MECFS mit #Belastungsintoleranz

Infiziert 6.3.2020, akut erkrankt mit Myokarditis und Pneumonie ab 16.3.2020.
Nicht hospitalisiert.
Diagnose Post-Covid-Syndrom mit Fatigue am 22.6.2021.

#PENE, #POTS, #MCAS #NichtGenesen #NichtBehandelt

Angesteckt am Chorkonzert des Gymnasiums unserer Kinder am 6.3.2020 in Bern. Innenraum, ohne Maske (geschweige FFP2). Schule hatte Spezialbewilligung für Konzert im National Theater. 200 teilweise kranke Jugendliche auf der Bühne. 400 teilweise kranke Zuschauer:innen.

Erste Symptome 4d Kratzen im Hals, etwas schlapp (wie immer bei Erkältung)

Ab 10d Probleme Atmung, Tachykardie, Schmerzen Lunge & Herz, erste Anzeichen Belastungsintoleranz. Abends wusste ich nicht ob ich den Morgen erlebe. Dachte an Herzinfarkt. #NichtHospitalisiert
Read 14 tweets
So, I've seen this coming up a few times recently and I feel like it's really important for #pwME to be aware that episodes of intermittent paralysis or muscle weakness could be cataplexy, which is a symptom of (some) narcolepsy, which in turn can be secondary to MCAS 🧵
If you have #MyalgicEncephalomyelitis and you experience intermittent paralysis or muscle weakness, especially if you also score 10 or higher* on the Epworth Sleepiness Scale, you need to be assessed by a sleep specialist who's familiar with narcolepsy.…
*10 is kind of a borderline score - some clinics will call it mild excessive daytime sleepiness and others will call it high normal daytime sleepiness and put the cutoff at 11
Read 18 tweets
anyway just want to reiterate that my #MCAS gets better every single day now that i have balanced calcium and magnesium. a year ago i HAD to take all my meds immediately upon waking and had to have them kick in before i could go in a public space.
just took my morning meds after 1.5 hours of sitting in starbucks. woke up about 1.5 hours before coming to starbucks. went 3 hours without taking morning meds and experienced no consequences
I glutened myself TWICE yesterday.

Still no consequences.
Read 5 tweets
Today I heard back from a neurosurgeon who diagnosed me with:
- Jugular stenosis via C1
- Styloid hypertrophy
- Craniocervical Instability
- Pending further investigation: a tethered spinal cord

This is not a coincidence.

#longcovid #mcas #pots #mecfs
I do not have a known collagen disorder (genetic tested) nor do I am I hypermobile.
I should add that for the CCI, I’d need to complete invasive traction to fully confirm that dx. However, my measurements, strongly suggest CCI - and would be inline with my symptoms.
Read 12 tweets
This is the kind of paternalistic, unscientific nonsense that #MECFS #Lyme #Fibromyalgia #HSD #POTS #MCAS #Pandas #Pans #EDS #VaccineInjured #FQtoxicity patients have endured for decades. Now it’s the turn of #LongCovid
I’m going to make an offer to our colleague. Hopefully @DrKGregorovic can convey this message as I am blocked. Happy to have a Zoom coffee with both of you. We can examine
-the paper @awgaffney has tweeted & discuss the flaws
-the evidence for biomedical causation in #MECFS & LC
-the evidence for the ‘false sickness beliefs’
-the quality of the studies advocating exercise & talking therapies
-studies looking at the outcome of exercise in #MECFS & #LongCovid populations
-cardiovascular & other outcomes in #LongCovid

I think that is fair? Let me know
Read 6 tweets
@DeenanDpillay ‘living with’ — a major consequence of allowing #covid to circulate: #longcovid

‘Allowing covid to circulate has major & ongoing long term adverse impacts on the way we run society eg over 10k #NHS frontline workers off sick to acute & long consequences’

- enter a countrywide 🌊 *3rd in 6 months* & rising prevalence now 2% in all ages (worryingly high in 50+ maybe as no 2nd booster & >70s more at risk) & 30% sharp rise in hospitalizations in different age groups
— hints of increased severity (int care)

Read 27 tweets
We did the right thing. We followed the science and did what doctors told us. Now the science is abandoning us and doctors are gaslighting us.
#CanWeTalkAboutIt greyscale picture of me, lo...
You all know what we're talking about. Im not going to write it in this thread. The silence is deafening & the abuse is deadly

Im participating in this to support my (new) family; we’re all suffering. If you saw my DMs you would be horrified at what some have & are going through
Many have suffered unspeakable things. Things you couldn't make up if you were writing a horror movie. This is of course not new. But there is an added layer of denial regarding the cause. I've been very lucky in my journey - no denial. This is not the case for most others
Read 18 tweets
Raising a child w #hEDS #MCAS #POTS requires lots of love, reassurance and planning. Inspired by @The_Weed I will attempt to be half as eloquent and helpful as he was in the thread I just retweeted.

How do these kids get #PTSD?
Their symptoms are ignored, they are told...
they need to ignore their symptom, toughen up, work through pain, not act like a baby, stay w/keep up w/ their peers, try harder, etc.
They may have fatigue, pain, discomfort, or an indescribable feeling that something is "wrong" (perhaps a subluxation) $ they need to stop.
The result of this is crushing isolation. They have nowhere to turn. Language has failed them. Asking for help is a vulnerable act, and at their most vulnerable they have been struck down, made to feel weak bc they can't just "toughen up" and been shown that the only people...
Read 14 tweets
1/ #teamGP I have diagnosed 3 cases of postural orthostatic tachycardia syndrome (POTS)in 2 days in a 4500 patient practice. Incidence up due to Covid. It’s so easy to test. If your patient complains of tachycardia, dizziness,fatigue,‘brain fog’-your practice nurse can do a test
2/ it is called the NASA lean test (because astronauts get POTS). Link to test… if pulse goes up > 30bpm in the ten minutes and is sustained and BP doesn’t drop it’s POTS. #POTS
3/ I know everyone is busy and burning out 🙏🏻 If you can learn to test for and diagnose POTS you will make a huge difference to your patients’ lives. Especially consider it in #longcovid and #MECFS. kids get it too! Don’t presume paediatrics will test for it #LongCovidKids
Read 18 tweets
I feel like we should be talking more about the GAO report on #LongCovid that stated, "The full magnitude of health and economic effects [of Long Covid] is unknown but is expected to be significant." a 🧵…
What is the GAO you ask? The US Government Accountability Office is a non-partisan agency that uses data to evaluate how much something is gonna cost us. That's it. Their mandate is to, "improve the performance of government, ensuring transparency and saving money."
After reviewing the data available on #LongCovid, the GAO concluded that it, "has potentially affected up to 23 million Americans, pushing an estimated 1 million people out of work."
Read 11 tweets
1) How I cured my #LongCovid in 3mos after suffering for almost a year. This was my last hope. I researched what #Covid does to the body, came up with a list of "clinically studied" supplements and...
2) took them all. Firstly, I am not a MD. In March 2021 I caught Covid while working as a #frontline #healthcare worker. My symptoms of #brainfog, #fatigue, #jointpain, #muscleweakness, morning #stiffness happened after my recovery. At the time, this #postcovid #syndrome was...
3) was just starting to be discussed online. The the term #Longhauler was coined. Those in the #ME, #CFS, #Lyme #MCAS #community starting speaking out about the similarity of #symptoms with #LC. #Covidclinics started to sprout up, include one at the....
Read 48 tweets
💈On the day the @ons report 26,000 CYP have symptoms for at least a year (⬆️ 3000 from last mth)
we received an email from @10DowningStreet in response to our visit on April 1st
It confirms the concerns of the children⬇️

"We feel ignored"


April 1st - 12 #children living with #LongCovid traveled
to #london to deliver their own letters documenting their #pain, loss of #sight, #mobility, organ damage, diagnosis of #PANS #MECFS #FND #POTS #MCAS and the detrimental impact it has had on their lives.

100+ page guide providing evidence-based information on #LongCovid in CYP from industry experts, research, and statistics from @GOVUK @ONS.
Did anyone read it?
We were assured @BorisJohnson would receive it.

Read 13 tweets
1/14🧵 ⭐️ It’s a little late on a Monday but still time for a public service announcement about MAST CELL ACTIVATION SYNDROME (MCAS) ⭐️ If someone tells you it’s not real it’s because they lack knowledge…
2/ MCAS is when mast cells Ⓜ️ inappropriately release histamine and other chemicals resulting in multi-system symptoms. 🔥sometimes they release too much, sometimes at the wrong time. They get a little confused 😐
3/ we need mast cells- they are our first line of defence (innate immune system) and located in most systems in the body. If you are stung by a bee and it’s red and itchy- that’s histamine release from mast cells Ⓜ️
Read 16 tweets
Ein Thread
Wir alle wünschen uns in die Zeit vor 2019 zurück. Wir wollen uns anderen Themen zuwenden als der Pandemie. Dennoch ist das Thema Langzeitfolgen von Corona immens wichtig.

Bitte schaut, liked und teilt das Video – helft uns endlich Aufmerksamkeit zu erlangen!
Immer mehr Menschen sind von #LongCovid betroffen, auch nach Omikron (BA.1 und BA.2) -Infektion.

Eine „milde“ Erkrankung kann für den Rest des Lebens schwere Beeinträchtigungen bedeuten.
Long Covid ist nicht alleine eine Erkrankung der Lunge. Das Nervensystem, Gefäßsystem und
zahlreiche Organe können betroffen sein. Das Immunsystem nimmt ebenfalls Schaden.

Long Covid ist NICHT nach 2 Wochen vorbei. Viele leiden bereits seit 2 Jahren.

Long Covid trifft NICHT nur Erwachsene. Besonders bedrückend: Auch viele Kinder sind unter den Betroffenen.
Read 13 tweets
Stop doing standard tests on #LongCovid patients and claim that they are physically alright because the results are normal. Medicine & Science have not bothered to develop proper biomarkers for post viral illnesses for decades, ignoring the pleas from patients, including #pwme.1/
The world has not seen a pandemic on the scale of what #COVID19 caused (last was the Spanish flu) and by definition, you have not seen mass disability on the scale of what #LongCovid has been causing. Use your brains and empathy - if you have either of them - & think! 2/
Why would millions of people sit at home, losing their appetites, mobility, health, livelihood (and lives, sadly, in some cases) after contracting Covid without an actual biological/physical cause? They cannot all be depressed, surely? 3/
Read 9 tweets
BIG PROBLEMS with framing of new baseline study of NIH intramural #LongCovid #PASC cohort

lack of abnormalities on ROUTINE tests

no objective abnormalities

It ignores #LongCOVID similarities to #MECFS & advances in research on both, including those funded by NIH!

no evidence found

evidence against


Yes, it's a baseline study. But the pivot to discussions of depression and anxiety when abnormalities weren't easily found is jarring.

This follows the HORRIFYING tendency of medicine to psychologize illness, when physiological abnormalities aren't found.


Read 15 tweets
I haven’t provided much of an update in my #longcovid #mecfs #pots #mcas picture.

So here it goes… 🧵

For reference, I got Covid June ‘20 and spiraled into #longcovid July-Aug

What I’m working towards right now: tethered spinal cord evaluation by 2-3 surgeons.
Between Aug ‘20 - May ‘21 I was dx’d with: POTS, SIBO, MCAS, ME/CFS.

I also was tested for collagen disorders which came back negative.
Between Dec ‘20 and Aug ‘21 I had a workup around my c-spine because of *pulsatile* tinnitus in my left ear - a ‘whooshing’ sound. It can be an indicator of a vascular issue at the cervical junction (compression).

A CT revealed I had jugular compression.
Read 28 tweets
🧵 on repeat infections, negative lateral flow & #PCR tests, and the use of #COVID19 antibody tests. An n=1 experience #OmicronVariant #LongCovid #MedTwitter #TeamGP #psychtwitter #LongCovidKids #COVIDisAirborne #CovidIsNotOver 1/n
I had acute #COViD19 in Nov 2020, PCR +ve. Developed #LongCovid a month after. Had one dose #Pfizer Feb ‘21 which gave me new symptoms. Out of interest I had my anti-spike antibodies done May ‘21- they were above the upper limit the assay could measure 2/n
With the passage of time my antibodies dwindled. I had them rechecked in Dec 2021- both nucleocapsid & spike antibodies were below the protective limit. Therefore I had no protective antibodies. 3/n
Read 18 tweets
#chronicillness Twitter to doctor advocates
-you’re only speaking out because you’re sick yourself
-now you know what it’s like (implication- all of us neglected & psychologised patients before. NOT true- some of us just did our best within a system stacked against us)
-you need to mention ‘x’ disease as well. (We’re learning as fast as we can. Remember we are sick too. Some of us are bed-bound lying in darkened rooms. You know how much energy it takes to speak up)
-don’t dabble in areas you know nothing about. (In my case #Palestine. Being a chronic illness advocate doesn’t make me a one-trick pony. I’ve visited the West Bank & witnessed firsthand the horrors of #IsraeliApartheid. So I will speak up- I’m not here for anyone’s comfort
Read 5 tweets
What I have learned since being unwell myself has destroyed any faith I had in my profession’s leaders. I used to think that deep down most senior clinicians acted because they had the best interests of the patient, their colleagues & society at heart. That illusion is gone. 1/n
Be it the treatment of those with #MECFS #LongCovid #Fibromyalgia #POTS #MCAS #EDS #HSD #PansPandas #Lyme #FQtoxicity #vaccineinjuries & other so-called invisible illnesses; 2/n
the refusal of senior medics to stand up & protect colleagues, the public & schoolchildren from airborne spread of #SARSCoV2 as they are too afraid to displease those in the ivory towers of infection control, @UKHSA & @NHSE management & @UKgovcomms; 3/n
Read 7 tweets
2 yrs ago, to raise awareness for the #MillionsMissing due to #MECFS, I started a 🧵 on how tragic chronic illness has consumed my life

But I was too sick to finish, & shortly after uninstalled Twitter. Trapped by illness, unable to advocate.

2 surgeries later... 🧵, 🎬 2

2017: I was Prof of #Epidemiology @PublicHealthUGA, researching #HIVprevention and #vaccine prep for emerging epidemics. I directed an epi training program @ICI3D. I loved my work & my amazing colleagues!

I was healthy & active 🚴🏄‍♂️ 🥁

Then, I bought a 🏡 and had it renovated. Jan 2018 I moved to the newly built master bedroom addition, I became sick.

⏩ 2 years to 2020. Water burst thru walls on 2 sides of my bed. Revealing walls, subfloor, crawl space filled with mold due to construction defects

Read 22 tweets
Time for a 🧵 about metabolically-led post-exertional symptoms. This is quite possibly the most dangerously misunderstood piece of #LongCovid, #MECFS and infection-associated chronic illness puzzle (including non-viral pathologies that involve mitochondrial damage). (1/n)
First: many things can cause post-exertional symptoms, especially in the case of #LongCovid, where a large % of people have associated #dysautonomia. Understanding this is crucial to maximizing the utility of interventions such as autonomic rehabilitation and pacing (2/n)
without doing more harm than good. However, today is about metabolically-driven #PEM/#PESE. It should be fairly well-established at this point that many people with conditions like #LongCOVID and #MECFS have evidence of mitochondrial dysfunction, oxidative stress and (3/n)
Read 21 tweets
It has been an honour to walk alongside my friend & colleague of 21 years @BinitaKane & her daughter Jasmin on their courageous & inspiring journey. #LongCovid in adults children is real & serious. There are treatments available- sadly only for a fortunate few #TeamClots 1/n
(Everything I say is with the express permission of @BinitaKane). Jasmin is not the only child with #LongCovid who has been shown to have microclots & hyperactivated platelets. They are a consistent finding in kids & adults who have travelled for treatment to Germany & SA 2/n
Globally 100m are affected by this vile illness. In the U.K. alone this figure is estimated to be 1.8m, with 2/3rds reporting an adverse impact on their daily activities. 1% of primary & 2.7% of secondary school children fulfilled the criteria for #LongCovidKids 3/n
Read 17 tweets
Next speaker
Peter Rowe, MD: Lessons from ME/CFS that can inform Lyme disease as well as Long COVID
Professor of Pediatrics @HopkinsMedicine
#LymeDiseaseAwarenessMonth Image
Peter Rowe, MD
Postural Orthostatic Intolerance #POTS is very common in ME/CFS.
#LymeDiseaseAwarenessMonth ImageImage
Peter Rowe, MD
Common forms of orthostatic intolerance. Frequently the heart rate will be above 120 BPM. #POTS #NMH
#LymeDiseaseAwarenessMonth Image
Read 14 tweets

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