Just to be clear (I ran out of space for more precise wording) - I know that I (with fatigue but no PEM) don't have MECFS
Additional info for the plots: violet is the sleep score (I can't seem to get rid of its display), green is balanced HRV and orange is unbalanced
Can anyone explain why multiple anonymous allegedly-British accounts that contain “MECFS” in their bio are openly attacking me for not supporting digital ID & all of this bullshit? It’s a weird pattern. Lots of bizarre overlap.
2
18
Sammlung von Informationen zu COVID-19 und MECFS retweeted
Für die am schwersten an #MECFS erkrankten Patienten stellt sich nicht mehr die Frage,
OB sie an dieser Horror-Krankheit sterben,
sondern nur noch WANN.
3
24
132
1,503
Before we get into #AnimeMonday come watch a lil #lgbtqiaplusHistory!🌈
S1E1 of the #BigFreediaQueenofBounce series just started in the #ChronicLoaf stream 💃🏽🕺🏿
mzelo.com/app/rooms/chronicl…
#PrideMonth #spoonie #NEISvoid #ForTinu #mecfs #chronicpain #lgbtqiaplusrepresentation 🏳️🌈
7
2
5
7/8 Nach meiner Einschätzung würden Rückkopplung und Rechenschaft zu einer "angemessenen" Betroffenenbeteiligung wesentlich beitragen, die nicht zuletzt vor dem Hintergrund der #MECFS-Geschichte wichtige Sicherheits- und Qualitätsfunktionen hat und dem Aufbau von Vertrauen dient.
1
3
16
1/8 Die erste BMFTR-Förderrichtlinie zur Nationalen Dekade gegen PAIS verlangt grundsätzlich Betroffenenbeteiligung "in angemessener Weise". Das ist ein sehr guter und zentraler Punkt, der aber meiner Meinung nach noch näherer Aufmerksamkeit bedarf.
#MECFS #PAIS #LongCOVID
Jun 2
Mehr Rückenwind für Therapien: Das BMFTR fördert klinische Studien zu postinfektiösen Erkrankungen und setzt damit zentrale Maßnahmen der Nationalen Dekade gegen Postinfektiöse Erkrankungen um.
Mehr dazu: bmftr.bund.de/klinische-stud….
1
1
3
40
5
Elke Asen retweeted
Das war der 1. Schwammerling-Trail
8.930 Euro für Menschen mit #MECFS erlaufen
meinbezirk.at/perg/c-sport/8…
6
11
155
Anyone else with #MECFS have parasympathetic overactivation? Bradycardia, slow or lack of automatic breathing, sleepy fatigue, overly relaxed muscles, inability to feel pain. Could this be from damage to the vagus nerve?
1
10
I don’t find good guidance in the mecfs groups. I never bought the label (only used in last few yrs). My 100% approach has been nutrients & still took > 13 yrs to turn the corner. Best guides from science based patient forums with narrow focus on a single nutrient cofactors.
8
Wir brauchen wirksame Medikamente, keine Erlaubnis zum Selbstmord. #BC007 #Ampligen #MECFS #LongCovid #PostVAC
3
Yes. “normal” labs, many meet mecfs criteria, as I, are “just” deficient. Not dx’d, nor properly treated. I used right nutrients but only improve w new forms & doses. 13 yrs. No doc helped. If I believed that mecfs is hopeless, I would “have” mecfs & never improve. Many like me
1
6
Ich brauche eure Hilfe! Und es ist verdammt schwer das zuzugeben und über meinen Stolz zu springen! Aber es ist meine letzte Chance! 🙏🙏❤️❤️ #MECFS #Longcovid #Pots
@ABrokenBattery @NichtGenesen
@FrauXausNRW @1goodtern
@Lisathefirst20 @BMG_Bund
gofundme.com/f/unterstutzung…
1
2
13
Register for a webinar hosted by @BrainInflCollab "#LongCovid Research Updates & Hispanic Community Impact," feat. Solve Ramsay Research Grant winner & co-director of @StanfordHealth #MECFS & Long Covid Clinics, Dr. Hector Bonilla. 6/25 @ 12 pm PT.
zoom.us/webinar/register/WN_…
35
Unser Beileid an Familie und Freunde möge es endlich einen Aufschrei geben, diese Kathastrophe muss ein Ende haben. SOVIELE Menschen mussten ihr Leben aufgrund von MECFS hergeben.
Anna kämpft noch ,versucht zu ertragen ,aber wir spüren wie die Zeit unser größter Feind ist.
1
16
42m
Sounds like you don’t have ME but Vitamin B deficiency (or at least had one additionally) -
Which is known to cause Symptoms severe enough to even be misdiagnosed as ME.
An „mecfs group“ could have told you to check for that…
Regardless, I hope you get better or even recover!
2
7
Vicky James retweeted
Thank MECFS "allies" who have fully stolen everything from pwLC - who saturate NIH RECOVER diverting $$$ & focus away from LONG COVID.
They invented the term PCFS, which stands for Post-COVID Fatigue Syndrome.
A flipping useless LDN trial, too. 😡🤬
9 Sep 2025
Welp, @NIH RECOVER just renamed subset of Long Covid to PCFS, which stands for Post-COVID Fatigue Symdrome
"Essentially, it is the equivalent to the 2015 Institute of Medicine criteria for MECFS with two main exceptions. The Sx have to have started after a SARS-CoV-2 infection & Sx have to last only 3 months, not 6." -Hiten Niak
He's running the adult "Long Covid" (aka: MECFS) LDN trial. Don't meet MECFS criteria? You don't fucking count.
2
6
12
259
To everyone with pre-pandemic MECFS: I am sorry to tell you, but the chance for a medical recovery/improvement is now even further out of reach.
It’s a political game and you were used. Instead of fighting to prevent this, you were unfortunately misled.
RIP Long Covid and ME.
I've just been made aware of this, from here in NZ. I am beyond horrified!
"So, new cases of "Long Covid" will likely now have to be classified as ME/CFS."
What about the antivirals..... ???
FYI: @AlbaDocherty @cb_grl @DarainChains @trishorwen @PunkyBrewstuh @_VFK_DAA
2
11
32
1,573