Trude Schei

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

@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

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

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”. uib.no/nye-doktorgrad…

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 me-foreningen.no/har-kompetanse…

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

Trying to explain how it is to live with PEM in a short animation. Norwegian version on Youtube: @norgesmyalgiskencefalopati5764" target="_blank" rel="nofollow noopener">youtube.com/@norgesmyalgis…

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 islc-pais.org for the largest PAIS conference?!

Deler igjen på ME - dagen

I share this again today.

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

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

@RobWust In the content of patient involvement, have you considered offering reduced registration fees for representatives of patient organisations?

International ME/CFS Conference 2026 Starts tomorrow Info: events.mecfs-research.org/en/events/conf… Registration still open: cloud.seatable.io/dtable/forms/c… Speakers include Prof. Chris Ponting, and Prof. Carmen Scheibenbogen, both of whom have received research funding from @MEResearchUK

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. aftenposten.no/meninger/debat…

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 💙

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: tinyurl.com/y2f5f4jx #IWD2026

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

@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...

Trying out a new caffeine delivery system today (pouches) so everyone pray for my team as I become “more productive”…folks with #LongCOVID, #MECFS and other infection-associated chronic illnesses who can tolerate caffeine for energy: have you tried pouches? Any feedback? 👀

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: whn-pais.org

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. 🔗 news.griffith.edu.au/2026/01/28/alt…