Discover and read the best of Twitter Threads about #POTS

Most recents (24)

„Müdigkeit“ (LL)

Symptome: Auswahl:
- Entkräftung bis auf die Knochen
- keine Anstrengung möglich
- eklatantes Herzrasen / besonders bei aufrechten Postiionen
- Blutdruckentgleisungen
- Schwindel
- Atemnot
- Sehstörungen bis hin zu Drop Outs
- Kopfgefässgeräusche zum Bersten
- Tinnitus
- Muskel-, Sehnen-, Nervenschmerzen
- Brennen auf der Haut, in den Schleimhäuten, im Gehirn, in den Augen usw.
- elektro-schockartige Stromstösse
- Lähmunsgerscheinungen
- Muskelschwäche
- Hautveränderungen / Exzeme / Haut platzt auf
- Pins & Needles (überall)
- Haarausfall
- Verlust von Bindegewebe (auch keine Fingerabdrücke mehr)
- nicht fähig zu sitzen, zu stehen, nicht fähig mehr als 5 Schritte zu gehen
- nicht fähig autonom für sich selbst zu sorgen usw.
Read 4 tweets
Argenx cree que podría tener 'uno de los productos biológicos más grandes' de la historia…
El medicamento, conocido como Vyvgart, trata la miastenia grave generalizada, una enfermedad autoinmune que causa debilidad en los músculos esqueléticos.
Pero la portavoz de la compañía, Beth DelGiacco, dice que eso es solo el comienzo para Vyvgart. Vyvgart trata lo que Argenx cree que es la causa subyacente de más de 100 enfermedades autoinmunes.
Read 7 tweets
GPCR Autoantibodies circulating the blood triggering neuroinflammation of the autonomic nervous system and small fiber nerves that control the body’s functions for daily living. Breaching Blood Brain Barrier and Gut Barriers to induce more neuroinflammation and dysfunction.
These same autoantibodies triggering microclots to form in some people. The autonomic dysfunction altered the baroreceptor reflex and now the body compensates by either altering blood pressure or heart rate in order to get blood back to the heart.
The dysfunction leads to narrowing of the small vessels and altered red blood cell shape which causes hypoxic conditions in tissues and without proper oxygen perfusion the body cannot maintain proper aerobic metabolism to make a majority of the body’s energy (ATP).
Read 21 tweets
I never would have thought that one would be left at home, seriously ill, without help.
I would never have thought that children have to suffer in the dark at home, that relatives would be mocked at the same time, instead of doctors providing help.
1/x Image
I never would have thought that #MEcfs sufferers had to fight so much and actually become a political issue.
I never would have thought that the so-called health care system could let people down in such an ignorant way.
I never would have thought that in addition to #MEcfs, devastating illnesses such as #SmallFiber #POTS #MCAS, CranioCervical Instability #CCI #Lyme #PostVac and poisoning by #fluoroquinolones #FQAD would also be swept under the carpet in the so-called healthcare sector.
Read 7 tweets

Nie hätte ich gedacht, dass man schwer krank zuhause liegen gelassen wird.

Nie hätte ich gedacht, dass Kinder zuhause im Dunkeln leiden, Angehörige gleich mit verhöhnt werden anstatt dass Mediziner Hilfe leisten.
Nie hätte ich gedacht, dass #MEcfs Erkrankte soviel kämpfen müssen und regelrecht noch zu einem Politikum werden.

Nie hätte ich gedacht, dass das sogenannte Gesundheitssystem Menschen so derartig im Stich lassen kann.
Nie hätte ich gedacht, dass neben #MEcfs, auch verheerende Erkrankungen wie #SmallFiber #POTS #MCAS, die Craniocervikale Instabilität #CCI #Lyme und die Vergiftung durch #Fluorchinolone im sogenannten Gesundheitswesen gleich mit unter den Teppich gekehrt werden.
Read 6 tweets
So Endothelial dysfunction is the culprit for reduced oxygen perfusion to the tissues which in turn leads to dysfunctional aerobic metabolism and fatigue. Image
The Blood Brain Barrier consists of these Endothelial Cells and has been found breached in Covid Long haulers. ImageImage
What regulates the functions of the endothelium? Partly the GPCR receptors of course. Specifically the Sympathetic nervous system which is part of the ANS. Our small vessels are now narrowed due to the endothelium dysfunction.… ImageImage
Read 7 tweets
#LongCovid es principalmente una vasculitis trombótica inducida por proteína Spike

Un estudio de caso de apoyo
HT/: @angryhacademic

Muy, muy... interesante, lea hasta el final
Agradezco RT-❤
La COVID prolongada es una continuación de la patología que acompaña a la COVID aguda. 

Es importante destacar que no se pode rehabilitar hasta que se trate la patología.
Destacan el papel de los microcoágulos en la oclusión capilar, que los resultados coagulopáticos ocurren después de la covid aguda. Image
Read 20 tweets
I'm so tired of being told : you need to change doctors, find someone who will listen to me etc. Do you know know what it's like in reality ?
First of all. There's no one available. They don't take new patients. Appointments are in months or years. Second money. Third if you
have severe mecfs or very severe you can't go and just find a new doctor. 4. i did that for years. No one listened. No one. Or if one did they had no Idea what to do or put me in danger or sent me to other doctors who treated me like not a human. 5. Each travel to another apptmt
undergoing painful exams being gaslit for years and treated like i wasn't sick it was not enough my pain concerns and words never mattered. 6. The crashes after each apptmt. Physical pain. Suffering. Until being bedbound for weeks and months. 7. The mental toll of all of this and
Read 24 tweets
Latest paper from Dr Robin Kerr & me:
#LongCovid is primarily a Spike protein Induced Thrombotic Vasculitis…
Here we proposed that long covid is primarily a spike protein-induced thrombotic vasculitis, & we use Robin as a supporting case study 🧵
#TeamClots a U-shaped blood vessel. at...
We start by discussing the highly thrombotic nature of acute COVID & how this pathology doesnt cease in those with long COVID. in other words, long COVID is a continuation of the pathology accompanying acute COVID. Importantly, we cant rehabilitate until the pathology is treated
we highlight the role of microclots in capillary occlusion, that coagulopathic outcomes occur after acute covid (e.g. ↑ stroke risk), that there is platelet hyperactivation and endotheliitis, and all this leads to impaired oxygen extraction (and more)
Read 17 tweets
Studie #BC007 und positive Erfahrungen @UK_Muenster 🧵

Vor einiger Zeit bin ich über TW auf dieses Forschungsteam @AlexandrosRovas ⬇️ aufmerksam geworden. Sie untersuchen vaskuläre Langzeitfolgen bei #PostCovid 1/

Aufgrund meiner starken Atemnot habe ich einen Termin in der Pneumologie @UK_Muenster vereinbart.
Dr. Mohr war sehr freundlich und neben seinem medizinischen Wissen wirkte er sehr ehrlich und empathisch!

Es wurden direkt Fragen in Richtung PEM gestellt. 2/
,,Was passiert wenn Sie sich überanstrengen?"
,,Betreiben Sie Pacing?" Das waren Fragen die ich aus einer Uniklinik noch nicht kannte. Und obwohl ich nicht an PEM leide, sondern die autonome Dysfunktion, Schmerzen, Muskelschwäche 24/7 durch #SFN bei mir im Vordergrund stehen, 3/
Read 14 tweets
What I mean is that they saw me before. They saw me sick. They saw me moderate, mild, severe. They heard and witness the dozens of symptoms accumulating for years. They saw it. I didn't know what was happening to me. I checked SO MANY OF the mecfs symptoms for YEARS.
doctors even diagnose me orthostatomic hypotension, orthostatic intolerance, then pots. the raynauds, like a lot of these conditions. But they did nothing about it. "It will disappear" Guess what ? It got worse. i even had a test for an illness that causes red blood cells to not
be able to transport the oxygen through the body. like they all saw that something was wrong but it was "nothing"

Of course they kept blaming the fact that I was sick and getting worse on me. "I wasn't doing enough" while I was overworking and probably in crashes all the time.
Read 7 tweets
My doctor dismissed me, my wordsw my symptoms, for 10 years (20 if you take the rest) then didn't see me for a few years.
Fast forward i'm very severe ME almost dying. He came because i've been almost dying for months. After YEARS.

He did ask me why he hadn't see me these past
few years.
Well I became housebound then completely bedridden, bedbound, because they didn't listen to me.

This was such an insult.

When I gave him (again) the list of symptoms I've been having and complaining about for 10 years, the reply was so insulting.
I was 100% bedridden. For weeks, months. At this point. In the dark. No energy. Difficulty breathing and speaking. Out of breath. Hurting like hell. Lost a lot of weight. Dehydrated.

He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
Read 7 tweets
Protein disulfide isomerase (PDI) inhibition #LongCovid #MECFS #POTS

Ero1p oxidizes protein disulfide isomerase in a pathway for disulfide bond formation in the endoplasmic reticulum

"Loss-of-function experiments indicate that PDI supports angiotensin II-mediated ROS generation and Akt phosphorylation."

Read 10 tweets
Quercetin, Isoquercitrin, Isoquercetin, Rutin, TUDCA (ER stress) #LongCovid #MECFS
ERAP1 and ERP44 in virus antigen processing (eg. #SARSCoV2 S protein) and blood pressure regulation. #POTS #LongCovid

"the IC50 of quercetin, isoquercetin, rutin, and quercetin-3-glucuronide, were >100, 7.1, 6.1, and 5.9 μM, respectively, indicating that these C3 modification in the quercetin derivatives enhanced the anti-PDI activity."

Read 15 tweets
If you do one thing today, listen to cardiologist Dr Rae Duncan on #COVID19 #LongCovid &what Covid could be doing to our children.
It is heartfelt and genuine from someone who has seen the devastating effects of long Covid.
Excerpts below.
via @YouTube
She details that prior to the pandemic the average age of referrals to her cardiology clinic was aged 55-80yrs.
Now it is 16-40yrs
Now at least 50% are long Covid with cardiovascular symptoms.
What she says about these patients is utterly heartbreaking.
It mirrors what I see.
Some cannot stand up due to severe #POTS
Some are in wheelchairs
Some are in bed 23 hours a day with only 15 minutes where they can speak
Read 26 tweets
Versuche gerade Laptop aufzuräumen, brauche Speicherplatz, finde Brief, den ich im Winter 2017/18 verzweifelt hilfesuchend aus einer Klinik an einen Arzt geschrieben habe-da war ich bereits Jahre krank, VOR der Charité Diagnose (Herbst 2018), #MEcfs &Co. kannte ich nicht.
Auszüge des Briefes; Symptome:
„- Ohren/Kopf: unverändert laut, sie schwanken, aber wie bisher von laut bis extrem laut, mal pulsierend im Herzklopf- Rhythmus, dann stolpert mein Herz - Töne setzen aus, (ganze Herzaussetzer, beängstigend)
- Diese eklatante Erschöpfung, es zieht mich vom Körper und Geist (Konzentrationsschwächen, Lücken im Gedächtnis) immer wieder runter und ins Bett, ich fühle mich schwach, als ob mir alles viel zu viel wäre, schon allein ein kurzer Spaziergang ist zu viel für mich,
Read 10 tweets
“One of the big issues with #LongCovid… is that the people who are the most motivated to do something about it have the least amount of energy and ability to cause a scene,” @LisaAMcCorkell said…
“..countless stories of #LongCovid Californians. Recent CDC surveys suggest 5.5% of California adults — roughly 1.5 million people — currently experience the.. debilitating collection of symptoms that make up long COVID. A majority of them, 82%, have limits on their activity.”
“While most of society rushes eagerly back to pre-pandemic life, these patients, known as ‘long haulers,’ have been largely left behind by their communities, doctors and policymakers.”
Read 17 tweets
“A growing trove of research shows that PEM has physiological underpinnings… When ME/CFS patients & those with #LongCovid exercise, David Systrom discovered their veins were not moving blood to the heart efficiently, or ‘priming the pump.’”…
“He also found problems with oxygen exchange by the exercising muscle. Through skin biopsies, he sees nerve damage in most patients he tests. ‘It’s not what we’d expect in pure deconditioning,’ Systrom says.” #LongCovid
“Systrom’s work points to a dysfunctional autonomic nervous system, which controls functions like breathing & circulation.. & moves blood and oxygen through the body during and after exercise…This all impairs the body’s ability to recover.” #LongCovid
Read 24 tweets
1/25 When I was a brand new Mum to @JasmineMarwick my Health Visitor told me to remember that I was the expert of my child and that HCP’s were there to guide and help me.

I often think about those words…..
2/25Aug 20 when Jasmine fell unwell & immediately too tired to attend school or walk up a flight of stairs without collapsing no one mentioned or tested for Covid but I knew it wasn’t the blue light on her phone keeping her awake that made her fatigued as suggested by the Doctor
3/25 So we kept going back…….

In Feb 21 when we finally got to see the Paediatrician I didn’t think it was ‘good news’ as they said after they bent her hand back & said that there was nothing neurologically wrong with Jasmine. I wanted answers.
Read 25 tweets
High salt (sodium chloride) exposure / consumption and autoimmunity #POTS #LongCovid #MECFS
High salt promotes autoimmunity by TET2-induced DNA demethylation and driving the differentiation of Tfh cells

"Among the genes activated by high salt concentrations and involved in T cell differentiation and activation, spn is directly regulated by Tet2, and this relationship may provide a novel treatment for SLE by controlling a high-salt diet"

Read 19 tweets
.@Dysautonomia President Lauren Stiles and other patient advocates are quoted in this article exploring what the @NIH has done with $1.15B in US taxpayer funds allocated to #LongCOVID research. 1/🧵…
Dysautonomia International advocates serve on several RECOVER committees & have been fighting hard to get the NIH to spend these funds on research that is urgently needed to develop more effective treatments for people with #LongCOVID (a majority of whom have #dysautonomia). 2/🧵
While there are some great people involved with RECOVER, RECOVER as a whole has failed to deliver & is hampered by excessive bureaucracy, lack of accountability for decision making, and NIH's failure to put experienced post-viral illness researchers in leadership roles. 3/🧵
Read 8 tweets
THREAD 📣 Vito Russo's 1988 ACT UP speech "Why We Fight" and it's many parallels to the continuing COVID-19 pandemic currently causing 1k+ deaths p/week + mass disability #LongCovid #ME #POTS A black and white photo of ...
1/ Russo delivered "Why We Fight" during an ACT UP Demonstration at the Department of Health and Human Services, D.C. on October 10, 1988.…
2/ "My family thinks two things about my [AIDS diagnosis.] One, they think I'm going to die, & two, they think that my government is doing absolutely everything in their power to stop that & they're wrong on both counts."…
Read 18 tweets
Study discovers T cells in human blood secrete a substance that affects blood pressure and inflammation #POTS #LongCovid……

"Acetylcholine regulates blood flow, but the source of blood acetylcholine has been unclear."…

"Now, researchers at Karolinska Institutet have discovered that certain T cells in human blood can produce acetylcholine, which may help regulate blood pressure and inflammation."
Read 13 tweets
Interesting European study that confirms the US findings: #POTS is the most common autonomic disorder, both after #COVID19 and #covidvaccines. It's important to remember that in the past, the European Medical Agencies rejected the idea that #POTS can follow #HPV vaccination. 1/n
But #Covid #pandemic showed us that jumping to conclusions prematurely and denying reality observed in various countries - which is that #POTS can be triggered by HPV vaccines - serves no purpose in scientific process or #PatientCare. 2/n
The house of cards has fallen. We can all agree now that #POTS is one of the major post-infectious AND post-vaccination adverse events and can finally invest money/resources in studying it and bringing effective therapies to millions of pts with POTS. 3/3…
Read 3 tweets

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