Discover and read the best of Twitter Threads about #PoTS
Most recents (24)
Head-down bed rest impairs vagal baroreflex responses and provokes orthostatic hypotension
journals.physiology.org/doi/abs/10.115…
30 days head down tilt (HDT) caused 4 of 10 healthy participants to faint after standing up for 5 minutes. some interesting stuff going on...
journals.physiology.org/doi/abs/10.115…
30 days head down tilt (HDT) caused 4 of 10 healthy participants to faint after standing up for 5 minutes. some interesting stuff going on...
Heart rate:
Those who did faint, had a much smaller increase in heart rate on standing, just 23 ± 5 bpm, compared to non-fainters 49 ± 10 bpm
This suggests high heart rate is protective of fainting (in these very peculiar conditions)
Those who did faint, had a much smaller increase in heart rate on standing, just 23 ± 5 bpm, compared to non-fainters 49 ± 10 bpm
This suggests high heart rate is protective of fainting (in these very peculiar conditions)
Blood pressure:
Diastolic blood pressure had a similar response for fainters & not fainters, but systolic blood pressure reduced by about 15 mmHg for fainters, with no such change for non-fainters
there was similar plasma volume reduction in both groups
Diastolic blood pressure had a similar response for fainters & not fainters, but systolic blood pressure reduced by about 15 mmHg for fainters, with no such change for non-fainters
there was similar plasma volume reduction in both groups
Cardiovascular Deconditioning (20 Hours Bedrest with -5° Head-Down Tilt (HDT)) in Middle-Aged Healthy Men
sci-hub.se/10.1016/0002-9…
authors suggest during HDT MAIN cause of deconditioning is "an altered distribution of body fluids & intravascular pressures" & shift of fluid to head
sci-hub.se/10.1016/0002-9…
authors suggest during HDT MAIN cause of deconditioning is "an altered distribution of body fluids & intravascular pressures" & shift of fluid to head
this is potentially VERY important for #POTS: it suggests that our dysregulated body water regulation can be a primary source of deconditioning-like cardiovascular issues.
this means: fix the haemostasis problems to improve cardiovascular condition
#MedTwitter
this means: fix the haemostasis problems to improve cardiovascular condition
#MedTwitter
this study was in a very different context to POTS so we can't read too much into it. HDT shifts fluid to the head which is the opposite to POTS. this does trigger a reduction in blood volume, reduction in oxygen consumption, low renin, tachycardia, etc tho, all similar to POTS
1/ Der menschenverachtende und einer Hexenjagd ähnelnde Umgang mit Warnern vor Nebenwirkungen der #Covid19-#Impfstoffe (Prof. Harald #Matthes, Charité und Andreas #Schöfbeck, BKK ProVita) durch Medien, Wissenschaftler und Funktionäre war allem Anschein nach weder eine …
2/ … Premiere noch einmalig in der Geschichte der Entwicklung und Zulassung von neuen #Impfstoffen.
Den Ausführungen von @PGtzsche1 im Buch „Impfen - Für und Wider“ nach zu urteilen, erhält man vielmehr den Eindruck, dass dieses Vorgehen eine bewährte Strategie von …
Den Ausführungen von @PGtzsche1 im Buch „Impfen - Für und Wider“ nach zu urteilen, erhält man vielmehr den Eindruck, dass dieses Vorgehen eine bewährte Strategie von …
3/ … Impfstoff-Herstellern, Zulassungsbehörden, gewissen Medien und vermutlich mit #Interessenskonflikten behafteten Wissenschaftlern u. Ä. darstellt, um Zweifel an der Sicherheit von neuen Vakzinen zu zerstreuen und Warner und Kritiker mundtot zu machen. …
Interessante Studie zu #POTS.
Sie zeigt, was man klinisch oft beobachtet, nämlich dass die kognitive Funktion im Sitzen und Stehen schlechter wird.
Hier waren Aufmerksamkeit und Exekutivfunktion v Kontrollen reduziert.
1/6
link.springer.com/article/10.100…
Sie zeigt, was man klinisch oft beobachtet, nämlich dass die kognitive Funktion im Sitzen und Stehen schlechter wird.
Hier waren Aufmerksamkeit und Exekutivfunktion v Kontrollen reduziert.
1/6
link.springer.com/article/10.100…
Das war nicht die erste Studie dieser Art.
Ähnliche Ergebnisse beim Stehtest gab es schon mal➡️autonomicneuroscience.com/article/S1566-…
Mögliche Ursache ist der reduzierte zerebrale Blutfluss➡️ahajournals.org/doi/full/10.11…
2/6
Ähnliche Ergebnisse beim Stehtest gab es schon mal➡️autonomicneuroscience.com/article/S1566-…
Mögliche Ursache ist der reduzierte zerebrale Blutfluss➡️ahajournals.org/doi/full/10.11…
2/6
Zerebraler Blutfluss ist auch bei #MECFS reduziert, sogar wenn POTS/orthostatische Hypotension nicht gefunden werden ➡️sciencedirect.com/science/articl…
Es ist nur eine kleine Überraschung, dass bei ME/CFS ähnliche kognitive Auffälligkeiten beschrieben wurden➡️…nslational-medicine.biomedcentral.com/articles/10.11…
3/6
Es ist nur eine kleine Überraschung, dass bei ME/CFS ähnliche kognitive Auffälligkeiten beschrieben wurden➡️…nslational-medicine.biomedcentral.com/articles/10.11…
3/6
the autonomic nervous system has a branch that does not use acetylcholine or noradrenaline as transmitters. instead it uses other things, like nitric oxide, ATP, serotonin, neuropeptide-Y, etc
link.springer.com/content/pdf/10…
some thoughts RE #MECFS #LongCovid #teamclots #dysautonomia 🧵
link.springer.com/content/pdf/10…
some thoughts RE #MECFS #LongCovid #teamclots #dysautonomia 🧵
Nitric oxide gets released (depleted?) in ischaemia reperfusion injuries
jnnp.bmj.com/content/67/1/1
Dysmetabolism is commonly reported in #MECFS
ncbi.nlm.nih.gov/pmc/articles/P…
(Circulating) Serotonin may get depleted with platelet activation
portlandpress.com/biochemj/artic…
jnnp.bmj.com/content/67/1/1
Dysmetabolism is commonly reported in #MECFS
ncbi.nlm.nih.gov/pmc/articles/P…
(Circulating) Serotonin may get depleted with platelet activation
portlandpress.com/biochemj/artic…
Appetite gets dysregulated in #LongCovid and ME, often (not always) causing lower appetite. ME may be associated with higher neuropeptide Y
pubmed.ncbi.nlm.nih.gov/21190576/
pubmed.ncbi.nlm.nih.gov/21190576/
Participated in a very interesting multidisciplinary POTS conference at @HopkinsMedicine on the topic of #FND, #syncope and #POTS where we discussed and debated the numerous issues surrounding FND diagnosis in our patient population. 1/🧵
#MedTwitter #NeuroTwitter
#MedTwitter #NeuroTwitter
@HopkinsMedicine After conference, saw a patient who highlighted the issues discussed at conference.
👩🦽30 yo woman with POTS/MCAS/EDS triad with one TTT positive for POTS, but a 2nd TTT negative
❌ A neurologist diagnosed her with FND
💉 She is on allergy shots & many H1/H2 blockers.
2/🧵
👩🦽30 yo woman with POTS/MCAS/EDS triad with one TTT positive for POTS, but a 2nd TTT negative
❌ A neurologist diagnosed her with FND
💉 She is on allergy shots & many H1/H2 blockers.
2/🧵
@HopkinsMedicine 🚫 Neurologist didn't take into consideration neurologic and psychiatric manifestations of SYSTEMIC DISEASE (MCAS)
❌ This is not FND because there is underlying systemic disorder driving symptoms and signs.
🧠 Patient needs to be treated for the SYSTEMIC DISORDER first.
3/🧵
❌ This is not FND because there is underlying systemic disorder driving symptoms and signs.
🧠 Patient needs to be treated for the SYSTEMIC DISORDER first.
3/🧵
Thanks to a very kind collaborator, i have some copeptin (marker of AVP) data, compared to my pre-vaccine measures👇🏻👇🏻👇🏻
Whilst not all samples were taken in ideal conditions, it is clear something funky is (or was) going on with my AVP. some thoughts🧵
#postvac #LongCovid #POTS
Whilst not all samples were taken in ideal conditions, it is clear something funky is (or was) going on with my AVP. some thoughts🧵
#postvac #LongCovid #POTS
First a bit of background about copeptin (AVP)
AVP is part of the HPA ("stress") axis. briefly, high AVP = high ACTH = high cortisol
AVP also regulates hydration: low fluid/high salt = high AVP = kidney reabsorption of water = pee less = stay hydrated
AVP is part of the HPA ("stress") axis. briefly, high AVP = high ACTH = high cortisol
AVP also regulates hydration: low fluid/high salt = high AVP = kidney reabsorption of water = pee less = stay hydrated
1. What i find MOST interesting is that under the most controlled conditions (9am, no fluid), my copeptin was much lower than pre-vaccine on the same day my cortisol came back much lower than pre-vaccine
„Erschöpfungskrankheit“
„Erschöpfungssyndrome“
„Müdigkeit“ (LL)
Symptome: Auswahl:
- Entkräftung bis auf die Knochen
- keine Anstrengung möglich
- eklatantes Herzrasen / besonders bei aufrechten Postiionen
- Blutdruckentgleisungen
- Schwindel
- Atemnot
1/x
„Erschöpfungssyndrome“
„Müdigkeit“ (LL)
Symptome: Auswahl:
- Entkräftung bis auf die Knochen
- keine Anstrengung möglich
- eklatantes Herzrasen / besonders bei aufrechten Postiionen
- Blutdruckentgleisungen
- Schwindel
- Atemnot
1/x
- 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
2/x
- 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
2/x
- 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.
3/x
- 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.
3/x
Argenx cree que podría tener 'uno de los productos biológicos más grandes' de la historia
investors.com/research/the-n…
investors.com/research/the-n…
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.
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).
#NeverWouldHaveThought
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
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
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.
2/x
I never would have thought that the so-called health care system could let people down in such an ignorant way.
2/x
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.
3/x
3/x
#NieHätteIchGedacht
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.
1/x
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.
1/x
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.
2/x
Nie hätte ich gedacht, dass das sogenannte Gesundheitssystem Menschen so derartig im Stich lassen kann.
2/x
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.
3/x
3/x
So Endothelial dysfunction is the culprit for reduced oxygen perfusion to the tissues which in turn leads to dysfunctional aerobic metabolism and fatigue.
The Blood Brain Barrier consists of these Endothelial Cells and has been found breached in Covid Long haulers.
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. news-medical.net/whitepaper/201…
#LongCovid es principalmente una vasculitis trombótica inducida por proteína Spike
Un estudio de caso de apoyo
#Guthilo🧵
#preprints
#MedTwitter
HT/: @angryhacademic
Muy, muy... interesante, lea hasta el final
Agradezco RT-❤
Un estudio de caso de apoyo
#Guthilo🧵
#preprints
#MedTwitter
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.
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.
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
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
Latest paper from Dr Robin Kerr & me:
#LongCovid is primarily a Spike protein Induced Thrombotic Vasculitis
researchsquare.com/article/rs-293…
Here we proposed that long covid is primarily a spike protein-induced thrombotic vasculitis, & we use Robin as a supporting case study 🧵
#TeamClots
#LongCovid is primarily a Spike protein Induced Thrombotic Vasculitis
researchsquare.com/article/rs-293…
Here we proposed that long covid is primarily a spike protein-induced thrombotic vasculitis, & we use Robin as a supporting case study 🧵
#TeamClots
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)
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/
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/
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/
,,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/
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.
#meawareness
#meawareness
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.
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.
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
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.
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,
He SIGHED. At my list of symptoms. Said that this was "a lot" like I was exagerating, inventing,
- PDI
Ero1p oxidizes protein disulfide isomerase in a pathway for disulfide bond formation in the endoplasmic reticulum
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."
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."
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
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.
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
#LongCovid
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
#LongCovid
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.
🧵1/x
🧵1/x
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)
2/x
„- 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)
2/x
- 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,
3/x
3/x
“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 calmatters.org/health/coronav…
“..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.”
