Marco (with Long Covid)
@etzsepp.bsky.social
#LongCovid patient
#UniteToFight2024
#UniteToFight2024
Pinned
Donate to Supporting Long COVID Research for a Healthier Future, organized by Marco Wetzel
Dear friends, family, and compassionate supporters,
I am reachi… Marco Wetzel needs your support for Supporting Long COVID Research for a Healthier Future
gofund.me
I have started a birthday fundraiser for long COVID biomedical research and clinical trials. All donations will go to organizations actively involved in research activities 🔬 👩⚕️
Please share it widely 🙏
Link: gofund.me/be1b090d
Please share it widely 🙏
Link: gofund.me/be1b090d
Reposted by Marco (with Long Covid)
I want to remind everyone that this summit is open to the public and free! You could even design an interprofessional event on #MECFS or #LongCOVID that gets funded.
REGISTRATION DEADLINE IS TOMORROW, early, so register today if you're interested!
REGISTRATION DEADLINE IS TOMORROW, early, so register today if you're interested!
This Networking Summit at Quinnipiac is an intro to #MECFS for clinicians, nurses, social workers, PTs/OTs & more.
Design your own interprofessional event-- it might get funded!
In person & virtual; open to the public.
✨REGISTER BY THIS FRIDAY, APRIL 4!✨
➡️ tinyurl.com/mrn4p2ft
Design your own interprofessional event-- it might get funded!
In person & virtual; open to the public.
✨REGISTER BY THIS FRIDAY, APRIL 4!✨
➡️ tinyurl.com/mrn4p2ft
April 3, 2025 at 7:15 PM
I want to remind everyone that this summit is open to the public and free! You could even design an interprofessional event on #MECFS or #LongCOVID that gets funded.
REGISTRATION DEADLINE IS TOMORROW, early, so register today if you're interested!
REGISTRATION DEADLINE IS TOMORROW, early, so register today if you're interested!
Reposted by Marco (with Long Covid)
Some have asked so..Here's a list of the meds/supplements/other treatments that have helped us go from severe #MECFS to moderate (housebound) as at 2024. Long list. No magic cure. ymwv.
We’ve kept everything that helps a bit. If we stop any, we get worse again. 5 yrs to get to this point.
1/6
We’ve kept everything that helps a bit. If we stop any, we get worse again. 5 yrs to get to this point.
1/6
November 15, 2024 at 4:07 AM
Some have asked so..Here's a list of the meds/supplements/other treatments that have helped us go from severe #MECFS to moderate (housebound) as at 2024. Long list. No magic cure. ymwv.
We’ve kept everything that helps a bit. If we stop any, we get worse again. 5 yrs to get to this point.
1/6
We’ve kept everything that helps a bit. If we stop any, we get worse again. 5 yrs to get to this point.
1/6
Reposted by Marco (with Long Covid)
Professor Dr. med. Hans-Christoph Diener, emeritierter Professor für Neurologie in Essen und einer der prominentesten Neurologen im deutschsprachigen Raum, hat eben im Streamed-up explizit betont, dass Long Covid NICHT psychosomatisch, sondern ORGANISCH ist. 🧠
January 16, 2025 at 6:11 PM
Professor Dr. med. Hans-Christoph Diener, emeritierter Professor für Neurologie in Essen und einer der prominentesten Neurologen im deutschsprachigen Raum, hat eben im Streamed-up explizit betont, dass Long Covid NICHT psychosomatisch, sondern ORGANISCH ist. 🧠
Reposted by Marco (with Long Covid)
Sometimes I'm not symptomatic at all...
And other times I'm awake.
And other times I'm awake.
January 16, 2025 at 4:01 PM
Sometimes I'm not symptomatic at all...
And other times I'm awake.
And other times I'm awake.
Reposted by Marco (with Long Covid)
On the #NIH advocacy call right now.
Koroshetz on, discussing the new Vernon et al. paper distinguishing between #pwME post-COVID versus those we cannot PROVE had COVID.
~ 0.9% in those we can't prove had COVID
vs
~4.5% in those who were in the post-COVID group
met dx criteria for #MECFS. 🧪🧵
Koroshetz on, discussing the new Vernon et al. paper distinguishing between #pwME post-COVID versus those we cannot PROVE had COVID.
~ 0.9% in those we can't prove had COVID
vs
~4.5% in those who were in the post-COVID group
met dx criteria for #MECFS. 🧪🧵
January 14, 2025 at 7:43 PM
Reposted by Marco (with Long Covid)
“Imagine you go to an emergency department, you wait 13 or 14 hours, your condition actually deteriorates, and then you’re told, ‘Hey, good news, everything is normal” ....
Excellent article about mistreatment of #Longcovid similar to what has happened to #MECFS patients for decades.
#medsky
Excellent article about mistreatment of #Longcovid similar to what has happened to #MECFS patients for decades.
#medsky
Dismissed and Disbelieved, Some Long COVID Patients Are Pushed Into Psychiatric Wards
The chronic illnesses that make doctors doubt their patients often start after what “should” be a short-lived sickness—like COVID-19.
time.com
January 14, 2025 at 7:59 PM
“Imagine you go to an emergency department, you wait 13 or 14 hours, your condition actually deteriorates, and then you’re told, ‘Hey, good news, everything is normal” ....
Excellent article about mistreatment of #Longcovid similar to what has happened to #MECFS patients for decades.
#medsky
Excellent article about mistreatment of #Longcovid similar to what has happened to #MECFS patients for decades.
#medsky
Hi @exceedhergrasp1.bsky.social
How could we get in touch ?
I want to discuss some ME developments #MDC002 #MITODICURE
How could we get in touch ?
I want to discuss some ME developments #MDC002 #MITODICURE
January 13, 2025 at 5:06 PM
Hi @exceedhergrasp1.bsky.social
How could we get in touch ?
I want to discuss some ME developments #MDC002 #MITODICURE
How could we get in touch ?
I want to discuss some ME developments #MDC002 #MITODICURE
Reposted by Marco (with Long Covid)
We finally managed to move all our Swiss long covid and myalgic encephalomyelitis advocacy accounts away from hell. You find patient organisation Long Covid Switzerland under @longcovidch.bsky.social and Long Covid Kids Switzerland and their families under @swisslc-kids.bsky.social.
January 11, 2025 at 1:08 PM
We finally managed to move all our Swiss long covid and myalgic encephalomyelitis advocacy accounts away from hell. You find patient organisation Long Covid Switzerland under @longcovidch.bsky.social and Long Covid Kids Switzerland and their families under @swisslc-kids.bsky.social.
Reposted by Marco (with Long Covid)
Long COVID Labs (@longcovidlabs.bsky.social) announced on X a case series study testing
⭐PAXLOVID + PEMGARDA⭐
to treat #LongCOVID!
Long COVID Labs is using DeSci trials.
Patients & researchers upvote possible treatments for trial.
I'm working with them.
x.com/longcovidlab...
#medsky #IDsky 🛟😷 🧪
⭐PAXLOVID + PEMGARDA⭐
to treat #LongCOVID!
Long COVID Labs is using DeSci trials.
Patients & researchers upvote possible treatments for trial.
I'm working with them.
x.com/longcovidlab...
#medsky #IDsky 🛟😷 🧪
January 4, 2025 at 8:17 PM
Long COVID Labs (@longcovidlabs.bsky.social) announced on X a case series study testing
⭐PAXLOVID + PEMGARDA⭐
to treat #LongCOVID!
Long COVID Labs is using DeSci trials.
Patients & researchers upvote possible treatments for trial.
I'm working with them.
x.com/longcovidlab...
#medsky #IDsky 🛟😷 🧪
⭐PAXLOVID + PEMGARDA⭐
to treat #LongCOVID!
Long COVID Labs is using DeSci trials.
Patients & researchers upvote possible treatments for trial.
I'm working with them.
x.com/longcovidlab...
#medsky #IDsky 🛟😷 🧪
Reposted by Marco (with Long Covid)
ANNOUNCEMENT: international (hybrid) workshop on POSTVIRAL ETHICS
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Postviral Ethics - RCPS & PCNN | Radboud University
Workshop for Post-COVID patients and organisations concerned with Post-COVID.
www.ru.nl
January 6, 2025 at 1:14 PM
ANNOUNCEMENT: international (hybrid) workshop on POSTVIRAL ETHICS
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Date: 3 February 2025
Place: Radboud University
Workshop details and the programme can be found here:
www.ru.nl/en/about-us/...
Registration here:
forms.office.com/pages/respon...
#LongCovid #AIDS #MECFS #Lyme #Qfever #HIV #Ethics
Oh no! I am lost 😩
January 6, 2025 at 2:28 PM
Oh no! I am lost 😩
I have started a birthday fundraiser for long COVID biomedical research and clinical trials. All donations will go to organizations actively involved in research activities 🔬 👩⚕️
Please share it widely 🙏
Link: gofund.me/be1b090d
Please share it widely 🙏
Link: gofund.me/be1b090d
Donate to Supporting Long COVID Research for a Healthier Future, organized by Marco Wetzel
Dear friends, family, and compassionate supporters,
I am reachi… Marco Wetzel needs your support for Supporting Long COVID Research for a Healthier Future
gofund.me
January 4, 2025 at 2:03 PM
I have started a birthday fundraiser for long COVID biomedical research and clinical trials. All donations will go to organizations actively involved in research activities 🔬 👩⚕️
Please share it widely 🙏
Link: gofund.me/be1b090d
Please share it widely 🙏
Link: gofund.me/be1b090d
Reposted by Marco (with Long Covid)
#Maraviroc after-effects just keep on giving. Last night, out of nowhere when I was walked inside my house I just suddenly collapsed on the floor. Crazy sh**. No idea what all of this is. #LongCovid
January 4, 2025 at 9:57 AM
#Maraviroc after-effects just keep on giving. Last night, out of nowhere when I was walked inside my house I just suddenly collapsed on the floor. Crazy sh**. No idea what all of this is. #LongCovid
Reposted by Marco (with Long Covid)
Been taking low dose rapamycine for 4 full weeks now. Haven't finished the experiment but 3 things so far stand out:
1/
1/
December 6, 2024 at 11:37 AM
Been taking low dose rapamycine for 4 full weeks now. Haven't finished the experiment but 3 things so far stand out:
1/
1/
Reposted by Marco (with Long Covid)
Gentle reminder that the patients that are suffering the most are locked out of clinical trials. You need to be moderate to mild to be 'healthy' enough to enroll.
December 27, 2024 at 2:24 PM
Gentle reminder that the patients that are suffering the most are locked out of clinical trials. You need to be moderate to mild to be 'healthy' enough to enroll.
Reposted by Marco (with Long Covid)
Published today!
Carmen Scheibenbogen, Klaus J. Wirth: Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence
doi.org/10.1002/jcsm...
Carmen Scheibenbogen, Klaus J. Wirth: Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence
doi.org/10.1002/jcsm...
Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence
Background Recent studies provide strong evidence for a key role of skeletal muscle pathophysiology in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In a 2021 review article on the pa...
doi.org
December 27, 2024 at 12:07 PM
Published today!
Carmen Scheibenbogen, Klaus J. Wirth: Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence
doi.org/10.1002/jcsm...
Carmen Scheibenbogen, Klaus J. Wirth: Key Pathophysiological Role of Skeletal Muscle Disturbance in Post COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Accumulated Evidence
doi.org/10.1002/jcsm...
Reposted by Marco (with Long Covid)
I was asked this question on the other, less pleasant, platform. Basically: what drugs to I recommend for mitochondrial dysfunction. Here is my response (🧵): 1/
December 22, 2024 at 1:40 PM
I was asked this question on the other, less pleasant, platform. Basically: what drugs to I recommend for mitochondrial dysfunction. Here is my response (🧵): 1/
Reposted by Marco (with Long Covid)
Kostenübernahme inträvenöser Immunglobuline bei immunvermittelter Small-Fiber-Neuropathie:
Nachdem die Krankenkasse ihren Antrag zuerst abgelehnt hat, kommt sie jetzt doch für einen befristeten Therapieversuch auf.
#SFN #IVIG #LongCovid #MECFS #PostVac
www.schwaebische.de/regional/sig...
Nachdem die Krankenkasse ihren Antrag zuerst abgelehnt hat, kommt sie jetzt doch für einen befristeten Therapieversuch auf.
#SFN #IVIG #LongCovid #MECFS #PostVac
www.schwaebische.de/regional/sig...
Ihr großer Kampf wird belohnt: Hannah Stoll bekommt die Behandlung
Im Mai erhielt Hannah Stoll zum ersten Mal eine Diagnose für ihre Erkrankung. Dennoch wollte ihre Krankenkasse nicht für die Behandlung zahlen. Aber die 26-Jährige gibt nicht auf.
www.schwaebische.de
December 12, 2024 at 5:08 PM
Kostenübernahme inträvenöser Immunglobuline bei immunvermittelter Small-Fiber-Neuropathie:
Nachdem die Krankenkasse ihren Antrag zuerst abgelehnt hat, kommt sie jetzt doch für einen befristeten Therapieversuch auf.
#SFN #IVIG #LongCovid #MECFS #PostVac
www.schwaebische.de/regional/sig...
Nachdem die Krankenkasse ihren Antrag zuerst abgelehnt hat, kommt sie jetzt doch für einen befristeten Therapieversuch auf.
#SFN #IVIG #LongCovid #MECFS #PostVac
www.schwaebische.de/regional/sig...
Reposted by Marco (with Long Covid)
Ein junger #MECFS -Patient hat um #Sterbehilfe gebeten.
Die Eltern flehen mich an zu helfen - damit ihr Sohn überlebt.
Der Sohn fleht mich an eine Stellungnahme zu schreiben und ihn in seinem Vorhaben sein unsägliches Leiden zu beenden zu unterstützen.
Die Eltern flehen mich an zu helfen - damit ihr Sohn überlebt.
Der Sohn fleht mich an eine Stellungnahme zu schreiben und ihn in seinem Vorhaben sein unsägliches Leiden zu beenden zu unterstützen.
December 11, 2024 at 6:49 PM
Ein junger #MECFS -Patient hat um #Sterbehilfe gebeten.
Die Eltern flehen mich an zu helfen - damit ihr Sohn überlebt.
Der Sohn fleht mich an eine Stellungnahme zu schreiben und ihn in seinem Vorhaben sein unsägliches Leiden zu beenden zu unterstützen.
Die Eltern flehen mich an zu helfen - damit ihr Sohn überlebt.
Der Sohn fleht mich an eine Stellungnahme zu schreiben und ihn in seinem Vorhaben sein unsägliches Leiden zu beenden zu unterstützen.
Reposted by Marco (with Long Covid)
I have not heard of this for long covid but I could be mistaken. Long acting monoclonals are being trialed for LC
But here is an example where repeated vaccination treated post infection illness from flu. It is a fascinating account if you have not heard of it.
www.healthrising.org/blog/2015/11...
But here is an example where repeated vaccination treated post infection illness from flu. It is a fascinating account if you have not heard of it.
www.healthrising.org/blog/2015/11...
Carl-Gerhard Gottfries: A Swedish Chronic Fatigue Syndrome Vaccine Treatment Success Story - Health Rising
How Dr Carl-Gerhard Gottfries cure for his chronic fatigue syndrome disappeared before his eyes....
www.healthrising.org
December 11, 2024 at 4:19 PM
I have not heard of this for long covid but I could be mistaken. Long acting monoclonals are being trialed for LC
But here is an example where repeated vaccination treated post infection illness from flu. It is a fascinating account if you have not heard of it.
www.healthrising.org/blog/2015/11...
But here is an example where repeated vaccination treated post infection illness from flu. It is a fascinating account if you have not heard of it.
www.healthrising.org/blog/2015/11...
Reposted by Marco (with Long Covid)
Moderatorin leidet unter #LongCovid:
"Wenn ich fit genug bin, gehe ich zweimal im Monat spazieren"
www.t-online.de/region/berli...
"Wenn ich fit genug bin, gehe ich zweimal im Monat spazieren"
www.t-online.de/region/berli...
"Hat mich verzweifeln lassen": Visa Vie über Long Covid – und ihren größten Wunsch
Während Corona für die meisten Menschen mit dem Ende der Pandemie verschwunden ist, kämpfen andere mit den Folgen der Erkrankung. Eine von ihnen ist die Podcasterin Lottie, die vielen als Visa Vie bek...
www.t-online.de
December 10, 2024 at 8:57 PM
Moderatorin leidet unter #LongCovid:
"Wenn ich fit genug bin, gehe ich zweimal im Monat spazieren"
www.t-online.de/region/berli...
"Wenn ich fit genug bin, gehe ich zweimal im Monat spazieren"
www.t-online.de/region/berli...
Reposted by Marco (with Long Covid)
Categorization of #LongCovid into 4 subtypes based on symptoms, with further evidence of the increased risk from multiple infections and reduced risk by vaccination and boosters.
www.thelancet.com/journals/ebi...
www.thelancet.com/journals/ebi...
December 11, 2024 at 2:39 PM
Categorization of #LongCovid into 4 subtypes based on symptoms, with further evidence of the increased risk from multiple infections and reduced risk by vaccination and boosters.
www.thelancet.com/journals/ebi...
www.thelancet.com/journals/ebi...
Reposted by Marco (with Long Covid)
🍋 #LemonChallengeMECFS 🍋
Da ich den Beitrag noch nicht synchronisieren konnte, gibt es zumindest schonmal ein Outtake 😂
#MECFSResearchFoundation
#MECFS
Da ich den Beitrag noch nicht synchronisieren konnte, gibt es zumindest schonmal ein Outtake 😂
#MECFSResearchFoundation
#MECFS
December 9, 2024 at 4:20 PM
🍋 #LemonChallengeMECFS 🍋
Da ich den Beitrag noch nicht synchronisieren konnte, gibt es zumindest schonmal ein Outtake 😂
#MECFSResearchFoundation
#MECFS
Da ich den Beitrag noch nicht synchronisieren konnte, gibt es zumindest schonmal ein Outtake 😂
#MECFSResearchFoundation
#MECFS
Reposted by Marco (with Long Covid)
Huji Xu recognized by Nature as a top 10 who shaped science in 2024
Off-the-shelf CAR-T cells (CD-19 directed) for treating severe refractory autoimmune diseases.
www.cell.com/cell/fulltex...
www.nature.com/articles/d41...
Off-the-shelf CAR-T cells (CD-19 directed) for treating severe refractory autoimmune diseases.
www.cell.com/cell/fulltex...
www.nature.com/articles/d41...
December 9, 2024 at 4:48 PM
Huji Xu recognized by Nature as a top 10 who shaped science in 2024
Off-the-shelf CAR-T cells (CD-19 directed) for treating severe refractory autoimmune diseases.
www.cell.com/cell/fulltex...
www.nature.com/articles/d41...
Off-the-shelf CAR-T cells (CD-19 directed) for treating severe refractory autoimmune diseases.
www.cell.com/cell/fulltex...
www.nature.com/articles/d41...
Reposted by Marco (with Long Covid)
#LemonChallengeMECFS der ME/CFS Research Foundation, inspiriert von der ALS 🧊 Bucket Challenge. Beiß in eine 🍋- als Zeichen für den Schock, den ME/CFS für Betroffene bedeutet.
Awareness & Spenden für die biomedizinische Forschung!
lemonchallengemecfs.org
Ich nominiere @molbaas.bsky.social
Awareness & Spenden für die biomedizinische Forschung!
lemonchallengemecfs.org
Ich nominiere @molbaas.bsky.social
December 9, 2024 at 11:25 AM
#LemonChallengeMECFS der ME/CFS Research Foundation, inspiriert von der ALS 🧊 Bucket Challenge. Beiß in eine 🍋- als Zeichen für den Schock, den ME/CFS für Betroffene bedeutet.
Awareness & Spenden für die biomedizinische Forschung!
lemonchallengemecfs.org
Ich nominiere @molbaas.bsky.social
Awareness & Spenden für die biomedizinische Forschung!
lemonchallengemecfs.org
Ich nominiere @molbaas.bsky.social