Xesca Verd

Em dedico al que puc, quan puc, les estones que puc. Aprenc cada dia a viure amb fibromiàlgia, encefalomielitis miàlgica i disautonomia.

[Xesca Verd @boirina]

Com que ens esperen dies d’estar a casa, he decidit compartir els meus dos llibres de mandales.

Els podeu descarregar aquí:

Mandalas para la armonía interior: https://t.co/sIdmqhPvO9

Mandalas para los animales:
https://t.co/vXgvREvnOX

Feu-ne difusió!

[Xesca Verd @boirina]

@Neinei_rescue Te doy toda la razón, de mamá gata a mamá gata. A mí acoger me da vida y salud mental. Catorce gatitos han pasado por esta casa en el último año. Dos se han quedado definitivamente y cuatro venían muy mal y no sobrevivieron. Eso duele, pero los otros diez compensan. Abrazo.

[Neurologist Mom @NeurologistMom]

“Death should never become easier to access than treatment.”

[ME Research UK @MEResearchUK]

A team of researchers recently published a manuscript highlighting that muscle abnormalities in long COVID and ME/CFS.

Press release highlighting the importance of their findings: https://t.co/IB6ks6fA4Y

ME Research UK is acknowledged as one of the funders.

[Neurologist Mom @NeurologistMom]

"Sorry. We Can't Help You Live. But We Can Help You Die." https://t.co/3Niszkg9kq

[Carole Bruce @CaroleBruce17]

Helpful graphic on #ME severity scale and activity due to available energy.
Thanks to @TomKindlon

[Carole Bruce @CaroleBruce17]

From #ThereForME on how we need to change our advocacy. So far decades of advocacy have not changed the lives of -#ME patients one bit. What now? @KarenLHargrave has some thoughts.
https://t.co/OlHX2yqZZR

[Brian Fog @useless_priest]

"And yet, like if you look at the amount of funding for this condition, it’s absolutely pathetic for two reasons. One, it primarily affects women, so of course you get less funding. Second, while it completely disables you, it usually doesn’t kill you."

[MECFS, MCAS and PTSD @FatigueMe92484]

So basicly if you have inflammation that leads to mitochondrial dysfunction, the dysfunctional mitochondria turn on more inflammatory genes. You get "stuck" in a never-ending loop!

[Xesca Verd @boirina]

@portia2day @RosaBvll @guifre2053 @mantincelcatala I trobar-ne que parlin educadament a qui parla en català també és complicat?
Pels que diuen que son pràctiques, això que explica Rosa Maria seria una pràctica d'atenció al client ben suspesa. Dic això després de quinze anys de treballar amb alumnes de CFGS de restauració.

[Danilo.Buonsenso_Surf4Children @surf4children]

🚨‼️ME/CFS COMMUNITY🚨‼️
I am planning to apply for a grant call of the WE&ME.
As we want the highest patient engagement, I kindly ask you to
- view our current idea
- comment to improve it
- co sign the project if you like to support it

Of course the proposal body is based on something we can realistically do in 24 months with the amount available, and we can’t make completely different things.

thanks for your help please join and share widely

https://t.co/dHn9xwtOpC

[Adam @ABrokenBattery]

“Very ill person lives here. Please do not knock.”

Rosalind Amor has had #ME since the age of 8. Aged 25, she could not tolerate much light or noise, could not get out of bed, was partly fed by tube and could only speak in a whisper. (Clip from 2017.) #MECFS

[Adam @ABrokenBattery]

"This is not rare. This is one of life's worst diseases."

Professor Chris Ponting speaking about harm from graded exercise therapy and hospital care, and how patients have been let down for decades because #MECFS was wrongly thought to be psychological. (Clip from 2024)

[Laura vs M.E. 🏳️‍🌈♿ @LauraCayuela7]

Very promising preliminary findings from Amatica!

As a bedbound patient in Spain, I'm so happy to be part of this cohort and have the opportunity to contribute to meaningful research, especially since we're always excluded from the very few ME studies happening in my country.

[RarasNoInvisibles @NoInvisibles]

La Dra. Elisa Oltra de @UCV_svm coordina en 🇪🇸, el proyecto europeo de investigación #DISCOVER_ME, dentro del programa @HorizonEU para impulsar diagnósticos personalizados y estrategias de tratamiento de las personas con #EncefalomielitisMiálgica
El proyecto, financiado por la @EU_Commission con 7,5 millones de € y dirigido por la Prof. Eva Untersmayr de la @MedUni_Wien y biobanco #ME de @weandmecfs, con un consorcio internacional de veinte universidades e institutos de investigación
@EUROMEALL está involucrada como representante de los pacientes, que participarán a lo largo de todo el proyecto.
Como dice la Dra. Eva Martin @SFCencuentro: “el trabajo de @Invest_in_ME da sus frutos, feliz de que la #EMSfc empiece a tomarse en serio.”
Info en @asociacionruvid👇
https://t.co/RpWTWoBDdv

[Danielle Beckman @DaniBeckman]

One more nail in the coffin of the "it's just deconditioning" hypothesis.

60 days of strict bed rest ≠ #LongCOVID or #MECFS.

@RobWust group shows that while exercise capacity may be similarly reduced, the underlying skeletal muscle biology is VERY different.
More than time to move beyond outdated assumptions.

Join us at the inaugural @ISLCPAIS conference in Amsterdam next month, where Rob will be our host :)

[Rob Wüst @RobWust]

1/10 I am incredibly proud to share our latest study, published today in @NatureComms, a follow-up to our 2024 paper on skeletal muscle abnormalities in long COVID. Open access:
https://t.co/llYaZq6dJR
#LongCOVID #MECFS

[Jack | amatica health @JackHadfield14]

A new ME/CFS study used patterns of small molecules and fats in blood to distinguish people with ME/CFS from healthy controls with 90.9% accuracy in its own dataset. The work explores a possible route towards objective measurement. A simplified breakdown below.

[Christina Koch @CK65375]

Sommer 2026. Drei Jahre schwer krank. 90 % haus- und bettgebunden. Mit 43.

Für Gesunde unvorstellbar. Für viele mit komplexen chronischen Erkrankungen trotzdem nichts. Manche sind seit Jahrzehnten krank.
Manche können seit über fünf, manche seit über zehn Jahren nicht mehr ihr Bett verlassen. Unter den schwer Erkrankten auch viele Kinder.

Was mich wirklich fertig macht: In diesen drei Jahren meiner eigenen Erkrankung hat sich an der mangelhaften bis nicht vorhandenen Versorgung faktisch nichts geändert.
Trotz Medien, Aufklärung, Demos, Protesten, Karten, Briefen, Hilferufen über soziale Medien, Gesprächen mit Politiker*innen, Todesfällen und (assistierten) Suiziden.

Wir bleiben abgeschnitten von einer menschenwürdigen Versorgung.
In einem der reichsten Länder der Welt. Und kaum jemanden juckt's.

Dabei waren wir alle mal ein Teil dieser Gesellschaft. Aber die Erinnerungen daran verblassen.

#MEcfs #LongCovid #Postvac #POTS #MCAS #CCI #SFN #hEDS #Marfan #Lyme #FQAD #care4complex #longlist #longtragedy #chronischignoriert

[LUCIΞN | DARKTIMES @LucienDorman]

There needs to be a worldwide crisis response team for the very sickest people with ME/CFS, for when things become hell on earth and their baseline starts rapidly declining with no clear way out.

I’ve recently experienced dramatic baseline losses, and my 63-year-old mother is the only person keeping me alive.

The fact that we can’t call on a specialised team of doctors who can come to our home, perform in-home testing, thoroughly analyse the case, coordinate additional investigations, review the evidence, consult experts, and help identify the safest experimental or compassionate treatment options is unimaginable.

Instead, the sickest patients and their families are left to navigate one of the most devastating illnesses alone. We have almost no support. It is profoundly inhumane that people this severely ill are left without even the most basic standard of coordinated medical care.

We deserve better. Help us 😔

@SecKennedy @DrJBhattacharya @NIH @HHSGov @SenCapito @SenatorCollins @Robert_Aderholt @TomColeOK04

#MECFS #LongCovid

[Xesca Verd @boirina]

@sunsopeningband This would only make sense if they made a follow up of their PEM.