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#LongCovid

132 posts97 participants16 posts today
Public
Science for ME

Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of April 21 - 27.

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research

s4me.info/threads/news-in-brie

@mecfs

Science for MENews in Brief - April 2025This thread has a Science for ME 'News in Brief' post for each week in April 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman....
Continued thread
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PöbelHörnchen

Short version for non-German speakers:

Had great success with an experimental intervention for #LongCovid / #MECFS, using small continuous doses of transdermal nicotine (i.e. nicotine patches). There's some science behind it, and #ItWorkedForMe 🤷🏻

Read more here: docs.google.com/document/d/1j6

for context: improved my Bell Score from 20-40 to 40-60 (SIGNIFICANT quality of life improvement from "near suicidal" to "I could deal with this") and stayed improved after discontinuation of wearing patches.

Google DocsFAQs for TheNicotineTest#TheNicotineTest FAQs Thursday, 06.03.2025 (Version 4.0) Doubts? Tag @TheNicotineTest or email TheNicotineTest@gmail.com. Frequently Asked Questions (FAQs) for Nicotine Patch Testers This document will be updated as we get more responses from Dr. Marco Leitzke and when data trends start ap...
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PöbelHörnchen

Meine #MECFS-peepz, horchet!

Ich habe mich mal wieder heldenhaft in ein n=1 Experiment geworfen und was soll ich sagen… es wirkt [bei mir, bei weiteren Bekannten, n=1 mal X Menschen] über den Placebo-Effekt hinaus.

Und nicht nur sofort, ab der kleinsten Dosis (0,583… mg auf 16 h), ungefähr linear besser werdend mit höherer Dosis, sondern es hält auch nach dem (unfreiwillig plötzlichen) Absetzen an.

WTF. (color me impressed)

#Nikotin transdermal gegen #LongCovid: docs.google.com/document/d/1j6

Google DocsFAQs for TheNicotineTest#TheNicotineTest FAQs Thursday, 06.03.2025 (Version 4.0) Doubts? Tag @TheNicotineTest or email TheNicotineTest@gmail.com. Frequently Asked Questions (FAQs) for Nicotine Patch Testers This document will be updated as we get more responses from Dr. Marco Leitzke and when data trends start ap...
Replied in thread
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Bernd Paysan R.I.P Natenom 🕯️

@rotnroll666 @ennopark Mich erinnert das alles an meine Zivi-Zeit, während der sich binnen weniger Monate die Erkenntnis durchsetzte, dass Magengeschwüre durch Helicobacter pylori (de.wikipedia.org/wiki/Helicoba) erzeugt werden, und allenfalls schwach mit Stress korreliert waren. Die Veröffentlichung dazu war da schon einige Jahre alt, aber die Mediziner sind träge, und halten gern an etabliertem „Wissen“ fest.

ME/CFS ist eine chronische Entzündung des Gehirns, keine psychische Erkrankung, sondern eine organische (ja, das Gehirn ist auch ein Organ!), und die Schwierigkeiten bei #LongCOVID liegen wohl insbesondere darin, dass das sowohl selbst das Hirn persistent infizieren kann, als auch durch Schwächung des Immunsystems anderen bereits persistenten Viren (z.B. aus der Herpes-Familie) ermöglicht, dort ihr Unwesen zu treiben.

de.wikipedia.orgHelicobacter pylori – Wikipedia
Continued thread
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Anti. 🐘

Büsser: "Bei der Anti-Weidel-Demo gab es einen krassen Widerspruch. Die Linken demonstrieren gegen eine Person aus der LGBTQ-Community, die Rechten für sie. Noch dazu für eine Ausländerin. Eine Traum-Prämisse für Comedy. [...]
Speziell daran war, dass hier Figuren aus der Corona-Zeit auftauchten, die eine ganz spezielle [sic] Form von #LongCOVID haben. Die leben immer noch in jener Zeit, haben nicht damit abgeschlossen.
[...]
Das ist der Brainfog, die sind noch drin gefangen."

Witz komm raus

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Maggie Maybe

I remember seeing people pushing brain retraining on #MECFS patients on some platform years ago.

I guess I shouldn’t be surprised to see this scam is back targeted at long Covid patients. It’s garbage, just like GET.

#BrainRetraining Scams are ramping up in recent months - Sisters and Brothers in Long Haul please remain Vigilant : r/covidlonghaulers reddit.com/r/covidlonghaulers/

#LongCovid
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MedSciPol

cbc.ca/news/canada/hamilton/ha
"Researchers at McMaster University say they've created Canada's first-ever comprehensive guidelines for diagnosing, managing, preventing, and treating post COVID-19 condition (PCC), more commonly known as long COVID."

canpcc.ca/home/

mit Infos für
Die Öffentlichkeit:
canpcc.ca/resources/#tab-conte

Medizinisches Fachpersonal:
canpcc.ca/resources/#tab-conte

Und für Menschen in politischer Entscheidungsverantwortung:
canpcc.ca/resources/policymake

CBCMcMaster University researchers create guidelines to help COVID-19 longhaulers | CBC NewsResearchers at McMaster University say they’ve created Canada’s first-ever comprehensive guidelines for diagnosing, managing, preventing, and treating post COVID-19 condition (PCC), more commonly known as long COVID.
#LongCovid#PostCovidCondition
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Broadwaybabyto

When you’re healthy you believe you’ll always be healthy. That if you get sick it’ll be a temporary slow down & you will be back to normal after a few days.

When you learn that isn’t true, when you come face to face with the reality of how quickly you can lose your health, you become cautious.

This caution is part of protecting your baseline, and it’s a necessary survival skill when chronically ill.

disabledginger.com/p/maintaini

The Disabled Ginger · Maintaining a Baseline Means Everything When You're Chronically IllBy Broadwaybabyto
#chronicillness#spoonie#longcovid
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Broadwaybabyto

When you’re chronically ill, your baseline means everything.

Non disabled people struggle to understand how easily we can lose function, as well as how hard it is to gain it back.

It’s one of the reasons many chronically ill people are still masking. We don’t have the luxury of denial. We know we won’t be “fine” if we get covid. We know what we’re risking.

My latest is all about how to maintain a baseline, as well as tips and tricks for family & friends to help us save precious energy:

disabledginger.com/p/maintaini

The Disabled Ginger · Maintaining a Baseline Means Everything When You're Chronically IllBy Broadwaybabyto
#chronicillness#disability#longcovid
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genXcrone (she/her)

Among other things I have ME/CFS, and I'm currently crashing. I'm sleeping far more than I'm willing, am groggy and cogfoggy, and it's basically not a treat.

A friend said: I wish I could sleep all day.

sigh
They were emotionally going through it so I let it go.

What I wanted to say was:

If you really want to sleep all day, then do it. You get to make that choice for yourself.

For me and people with ME/CFS it is not a choice. When our bodies shut down and sleep that's it. Did you know it's actually recommended to not move us when we crash?

I also wanted to say:

You don't mean that you want to sleep all day. You mean that you want to stay in bed and hide from the world all day.

I'm not hiding from the world when ME/CFS makes me crash. I'm losing the world.

And:

You don't want to sleep all day, you want to rest.

ME/CFS sleep is not restful.

#MECFS#LongCovid
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