Irma has lived with ME/CFS for over 70 years. At 86, she's still thinking about the people who come after her. "Even modest contributions, when directed thoughtfully, can help move research and understanding forward." 🔗 Learn how you can support OMF: https://www.omf.ngo/ways-to-donate/

www.nettavisen.no/norsk-debatt...

Steigan misbruker forskningen min

Jeg kan ikke sitte stille og se på at forskningen min brukes til å fremme feil narrativ.

nettavisen.no

Would this have happened to a white resident? Asking for the First Nations.

Have you wondered how you can help a caregiver in your life? If you’re a caregiver, have you ever had a friend say, “Let me know how I can help,” and your mind just goes blank? Check out Supporting Family Caregivers by Caregiver Wisdom: www.caregiverwisdom.net/post/support... #Caregiver

Supporting Family Caregivers: 25 Heartwarming Ways You Can Make a Difference

Have you wondered how you can help a caregiver in your life - specific, actionable ways you can help? Here are 25 thoughtful ways you can provide meaningful support to family caregivers.

caregiverwisdom.net

"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...

No Evidence Supports Using Graded Exercise for ME/CFS

Studies examining the effects of activity-based interventions haven’t required post-exertional malaise as a core criterion for the now-termed ‘myalgic encephalomyelitis/chronic fatigue syndrome.’

medscape.com

ok, først litt fakta: 1. syke har rett til og behov for hjelp 2. BPA er rimeligere og mer effektivt enn andre løsninger Men kommunen nekter. Resultat? 1. Den syke blir sykere 2. Pårørende faller ut av jobb 3. Kommunen svikter sine kjerneoppgaver og sparer IKKE penger

ME-syke Ingrid (23) i Stjørdal har mistet den brukerstyrte personlige assistenten

Målet er å bli frisk og studere, men nå har ME-syke Ingrid mistet assistenten og blitt sykere.

nrk.no

1) 🇳🇴 A new Norwegian study looked at the health and economic impact on caregivers of people with ME/CFS. ME/CFS strengthening traditional gender roles: female caregivers worked less and males more. All caregiver groups experienced increased personal health problems.

Ny artikkel fra Tjenesten og MEg. Fafo/Sintef ser på pårørende til ME-syke. Økonomi og helse link.springer.com/article/10.1...

The health and economic burden on family caregivers of persons with me/cfs diagnosis: a register data study from Norway - Discover Public Health

Background Myalgic encephalomyelitis is an illness that affects the labor capability and need for services among those affected. Interventions and services for comparable illnesses are either inaccess...

link.springer.com

puh.

Det er lite jeg er enig med Anne-Kari Bratten om, men her treffer hun spikeren på hodet. Noe sier meg at «gutta» kommer til å slite når de får sånne som meg som leder. www.dn.no/ledelse/lede...

Guttastemning på arbeidsplassen

«Guttastemning» skal møte voksne kvinnelige ledere som meg. Lykke til.

dn.no

Biomedisinsk forskning på ME gjorde Christian frisk. Tenk om vi kunne bevilge mer penger til disse forskerne, så kanskje gåten løses? Ny studie på kreftmedisin trenger finansiering. www.nrk.no/nordland/xl/...

Christian vil inn på Stortinget: – Det meste i livet handler om flaks

Christian Torset vil ta igjen det tapte etter 15 år på sofaen. Derfor kjemper han nå om en plass på Stortinget.

nrk.no

Late singer Kara Jane's family has released her album "In Limbo" posthumously on #SevereMEday 💙. Read more about Kara, the album, and the impact of severe ME in this wonderful article by @naomiwhitt.bsky.social in @thesicktimes.org. thesicktimes.org/2025/08/08/p...

Posthumous album of singer Kara Jane released on Severe ME Awareness Day - The Sick Times

This month, on August 8, the posthumous album of a young singer was released to mark Severe ME Awareness Day. Kara Jane, from Derbyshire in the U.K., had myalgic encephalomyelitis (ME) for most of her...

thesicktimes.org

1) The DecodeME study compared DNA of ca. 15,000 ME/CFS patients and 250,000 controls and found significant differences in 8 regions of our genome. The Manhattan plot below shows the genes and chromosomes involved. Let’s unpack the results 🧵

Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...

Possible genetic clues to ME/chronic fatigue syndrome identified in massive study

DNA analysis of more than 15,500 people with the debilitating condition identifies eight tentative “genetic signals”

science.org

(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk

Scientists find link between genes and ME/chronic fatigue syndrome www.theguardian.com/society/2025...

Scientists find link between genes and ME/chronic fatigue syndrome

Large study suggests people’s genetics could ‘tip the balance’ on whether they would develop the illness

theguardian.com

People with ME have key genetic differences to other people, study finds The DecodeME study is described the largest of its kind in the world. #MECFS www.standard.co.uk/news/health/...

People with ME have key genetic differences to other people, study finds

The DecodeME study is described the largest of its kind in the world.

standard.co.uk

de har funnet noe genetisk! www.research.ed.ac.uk/en/publicati...

Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome

research.ed.ac.uk

Younger har faktisk funnet betennelse i hjernen til ME-syke. youtu.be/wuzmYJxM-r0

067 - New results: The ME/CFS brain is inflamed

YouTube video by Jarred Younger, PhD

youtu.be

Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration. New post at Absolutely Maybe .... 1/2 absolutelymaybe.plos.org/2025/07/31/s... #MECFS

Six Months Later: What Their Response on ME/CFS Tells Us About the Cochrane Collaboration - Absolutely Maybe

Six months ago, I wrote a post called “When journal, scientific society, and community values clash.” I recounted the tale of the…

absolutelymaybe.plos.org

🧵 Extract from a new short blogpost of mine: "3 basic reasons why people with ME/CFS can’t be as 'academically productive' (learn as much in an academic year) as they could be before the illness" #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 1/

Huge congrats to everyone who’s been advocating for support for the NIH’s ME/CFS Research Roadmap!! 🥳🥳 Senate FY26 budget language, out today, would give NIH 180 days to send the Senate a “detailed implementation plan” for the Research Roadmap! 🔥🔥

theconversation.com/long-covid-v...

Long-COVID, viruses and ‘zombie’ cells: new research looks for links to chronic fatigue and brain fog

SARS-CoV-2 and some other viruses trigger “zombie cells” that can create a mix of symptoms seen in long-COVID.

theconversation.com

1) Interesting letter in The Lancet Rheumatology by Brittany Adler. "Rheumatologists are uniquely trained to manage complex, multisystem illness. Yet the field has largely remained at the margins of infection-associated chronic illness and autonomic dysfunction..."

Snodig følelse å ta på langbukse etter et par uker med nesten ingen klær.

BBC: 'Woman with ME criticises health plan for condition' A woman living with myalgic encephalomyelitis (ME) said she has "lost faith" in receiving "meaningful support" after the government released a plan to help patients. www.bbc.co.uk/news/article...

Bedfordshire woman with ME criticises health plan for condition

Maddie Walker says she is

bbc.co.uk

I thought I would repost this to highlight again some of the many varied symptoms that can be found in #MyalgicEncephalomyelitis/#ChronicFatigueSyndrome Particularly relevant when similarities with the #LongCovid presentation in some people are being missed #MEcfs #CFS #PwLC 1/

Facebook-innlegget mitt om at arbeidslivet må endres for at flere uføre skal kunne jobbe, er blitt til innlegg i Aftenposten. De har strøket en "drit og dra!", men har beholdt "Herre milde Josef og Maria", så det er da noe. Lik og del, som dem sier.

Arbeidslivet må endres hvis flere uføre skal i jobb

Les innlegget.

aftenposten.no

Nå har jeg skrytt så mange dager på facebook at jeg må spre det litt. Har kjøp kajakk, så jeg kommer meg ut på vannet selv om jeg er aleine på hytta. Veldig moro!