Trude Schei

Architect with ME, patient advocate, ass.gen.sek i ME-foreningen, always exhausted

[Hannah Davis @ahandvanish]

This is such an incredible thing - though it should be the default in care and available everywhere, it is almost unfathomable to see its existence and the scope of understanding from medical providers! #pwme #longcovid

[Julia Marie @julia_doubleday]

@AlanLevinovitz Can you imagine having any other illness- MS, cancer, a severe autoimmune disease, and a reporter writing a long form article about how that illness is “totally real” but they interviewed a guy who says he was cured by envisioning himself getting better so maybe that will work

[World ME Alliance @WorldMEAlliance]

When ME/CFS patients are denied the care they deserve, the consequences are significant:

=> delayed diagnoses
=> harmful or inappropriate treatments
=> repeated experiences of stigma and disbelief
=> patients not warned of the risks of Post-Exertional Malaise (PEM)

#EducateME

[PwME 4 bioMEdical research @ValeBodi]

NEW DOCTORATE
ME/CFS: From mitochondria to blood signature
Fredrik Hoel will defend his PhD degree at the University of Bergen on June 5, 2026 with the thesis "A study on signatures of bioenergetic dysfunction in Myalgic Encephalomyelitis #MECFS”. https://t.co/1m4mDfzg7d

[Trude Schei @t_schei]

Kompetansetjenesten for CFS/ME har ikke bidratt til å bedre pasientenes situasjon. Mye er faktisk verre i dag enn i 2012 da tjenesten ble opprettet. Her bruker vi funn fra brukerundersøkelser som mål på endring.
@jcvestre
https://t.co/K19JjoiJQq

[Trude Schei @t_schei]

@TomKindlon You shared an older PEM video from the Norwegian ME association - here is a newer version.

[Trude Schei @t_schei]

Trying to explain how it is to live with PEM in a short animation.
Norwegian version on Youtube: https://t.co/ABdjIZC8LG

[Rob Wüst @RobWust]

ABSTRACT DEADLINE EXTENDED UNTIL 28TH MAY!
We have received over 125 abstracts related to #LongCOVID and Post-Acute Infection Syndromes (#PAIS) for the ISLC-PAIS Conference 2026 (26-29 August) in Amsterdam. Register at https://t.co/SHD33RV9dR for the largest PAIS conference?!

[Trude Schei @t_schei]

Deler igjen på ME - dagen

[Trude Schei @t_schei]

Hvem har ansvaret for at de sykeste ME-pasientene får hjelp som kan hjelpe dem å bli bedre? Hvor går skjæringspunktet mellom retten til forsvarlige helsetjenester, og kommunenes selvråderett? 1/3

https://t.co/8ppNGDB0ER

[Trude Schei @t_schei]

I share this again today.

[Trude Schei @t_schei]

The report from the European ME Alliance survey was published today, and can be downloaded for free.
11200 persons with ME answered questions about their course of illness, and about support from health care and other institutions.
https://t.co/L2AExgplTd

[Rob Wüst @RobWust]

Abstract submission for the 2026 Amsterdam ISLC-PAIS Conference is entering its final week! Submit your abstracts before 15 May.
https://t.co/aV7FAZ3NOy
The conference (26–29 Aug in Amsterdam) brings together interational PAIS experts, with a summer School and network events.

[Trude Schei @t_schei]

@marjoneaw @RobWust A reduced price would be very welcome for patient organisations with a very limited budget. Patient participation is important for impact 😀

[ME Research UK - Researcher Zone @MEresearchzone]

International ME/CFS Conference 2026 Starts tomorrow

Info: https://t.co/gPH7pxpNGP

Registration still open: https://t.co/4BRhEjfEr3

Speakers include Prof. Chris Ponting, and Prof. Carmen Scheibenbogen, both of whom have received research funding from @MEResearchUK

[Marit Hjelsvold @memhj]

I denne ytringen av professor Karl Johan Tronstad, overlege og professor Øystein Fluge, tidligere klinikkdirektør og professor emeritus Olav Mella, rettmessig setter fokus på et altfor svakt kunnskapsgrunnlag i høringsforslaget til Helsedirektoratet.

https://t.co/OaPH2Uco5R

[Prof. Akiko Iwasaki @VirusesImmunity]

The #LongCovidAwarenessDay (today) is important because in many countries and regions around the world, long COVID is not discussed and people are suffering in isolation. Awareness is needed to improve diagnosis, medical care, research, and support of patients 💙

[ME Research UK @MEResearchUK]

For International Women's Day (IWD) ME Research UK has written about the delay in ME/CFS research due to systemic prejudice against women, known as 'medical misogyny'.

Read more: https://t.co/b9AlptVVOG

#IWD2026

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Some doctors claim that the diagnosis #MECFS is controversial. Did you know that the illness is recognized by the World Health Organisation since 1969 (ICD-8), and that it was confirmed in ICD-9 and ICD-10? The code for ME/CFS in ICD-11 is 8E49. #MEAwarenessHour

[Trude Schei @t_schei]

@PutrinoLab I enjoy coffee and tea (particularly "builders tea" or a really good Assam or Darjeeling... Or a Lapsang... ) too much to do anything else to get my caffeine! There is so much comfort in a cuppa...

[Rob Wüst @RobWust]

PAIS conditions affect millions worldwide, with major consequences for individuals, healthcare, and societies. This meeting aims to move the field forward , together.
More details on speakers, program & registration coming soon. Follow updates here: https://t.co/bjoOLc994u

[Bateman Horne Center @BatemanHorne]

New research from Griffith University found altered brain connectivity in people with ME/CFS and Long COVID during demanding mental tasks, helping explain brain fog and cognitive exhaustion.
This adds to growing evidence of real neurological impacts.
🔗 https://t.co/21NDWPsGU2