Sign in

Gro

@mesnag.bsky.social
152 followers 289 following 96 posts

Clarinettist. Conductor. Caregiver. 4 cats, 2 kids, 1 husband.

PostsRepliesMedia
Reposted by Gro
Open Medicine Foundation (OMF) @openmedf.bsky.social · 27/08/2026
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: www.omf.ngo/ways-to-donate
Irma sits beside her husband. Below their photo, a quote reads: "Meaningful impact does not require wealth or status. Even modest contributions, when directed thoughtfully, can help move research and understanding forward."
1167
Reposted by Gro
Richard A White, PhD @raubreywhite.bsky.social · 16/12/2025
www.nettavisen.no/norsk-debatt...
nettavisen.no
Steigan misbruker forskningen min
Jeg kan ikke sitte stille og se på at forskningen min brukes til å fremme feil narrativ.
3142
Reposted by Gro
George Takei @georgetakei.bsky.social · 28/11/2025
Would this have happened to a white resident? Asking for the First Nations.
Screenshot of a tweet by The Seattle Times on X.com stating that Indigenous actress Elaine Miles from “Northern Exposure” was detained by ICE at a Redmond bus stop, and agents told her that her Tribal ID was fake. Below is a close-up photo of Elaine Miles smiling.
25454061600
Reposted by Gro
#MEAction Network @meactnet.bsky.social · 11/11/2025
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
caregiverwisdom.net
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.
03920
Reposted by Gro
Miriam E. Tucker @miriametucker.bsky.social · 31/10/2025
"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/...
medscape.com
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.’
312558
Reposted by Gro
Eirik A @straamann.bsky.social · 15/10/2025
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
nrk.no
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.
1274
Reposted by Gro
ME/CFS Science @mecfsscience.org · 23/09/2025
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.
12711
Gro @mesnag.bsky.social · 22/09/2025
Ny artikkel fra Tjenesten og MEg. Fafo/Sintef ser på pårørende til ME-syke. Økonomi og helse link.springer.com/article/10.1...
link.springer.com
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...
010
Gro @mesnag.bsky.social · 09/09/2025
puh.
010
Reposted by Gro
Safina de Klerk @safinadeklerk.bsky.social · 25/08/2025
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...
dn.no
Guttastemning på arbeidsplassen
«Guttastemning» skal møte voksne kvinnelige ledere som meg. Lykke til.
1535
Gro @mesnag.bsky.social · 30/08/2025
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/...
nrk.no
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.
100
Reposted by Gro
Miles W. Griffis @mileswgriffis.bsky.social · 08/08/2025
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...
thesicktimes.org
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...
04019
Reposted by Gro
ME/CFS Science @mecfsscience.org · 07/08/2025
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 🧵
511738
Reposted by Gro
Chris Ponting @cgatist.bsky.social · 06/08/2025
Science magazine’s coverage of the DecodeME initial results : www.science.org/content/arti...
science.org
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”
610849
Reposted by Gro
DecodeME @decodemestudy.bsky.social · 06/08/2025
(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
Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides.Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass.Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs.Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.
3220148
Gro @mesnag.bsky.social · 06/08/2025
Scientists find link between genes and ME/chronic fatigue syndrome www.theguardian.com/society/2025...
theguardian.com
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
030
Reposted by Gro
Sam @humanmanifold.bsky.social · 06/08/2025
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/...
standard.co.uk
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.
0176
Gro @mesnag.bsky.social · 06/08/2025
de har funnet noe genetisk! www.research.ed.ac.uk/en/publicati...
research.ed.ac.uk
Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
020
Gro @mesnag.bsky.social · 05/08/2025
Younger har faktisk funnet betennelse i hjernen til ME-syke. youtu.be/wuzmYJxM-r0
youtu.be
067 - New results: The ME/CFS brain is inflamed
YouTube video by Jarred Younger, PhD
010
Reposted by Gro
Hilda Bastian @hildabast.bsky.social · 01/08/2025
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
absolutelymaybe.plos.org
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…
75426
Reposted by Gro
Tom Kindlon @tomkindlon.bsky.social · 31/07/2025
🧵 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/
Here are three basic reasons why people with ME/CFS can't be as “academically productive” (learn as much in an academic year, with a similar level of sacrifice) as they were before the illness (or compared to others who had similar academic ability):

- they generally will have less hours in a week to learn*.

- initially when learning: they can zone out and not take in as much in class or in a study period i.e. have difficulties sustaining concentration.

- memory problems: they can forget a larger percentage of what they learn than previously, so need to spend more time revising.
43711
Reposted by Gro
C.H. Romatowski @chromatowski.bsky.social · 31/07/2025
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! 🔥🔥
Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome [ME/
Fatigue/CFS] Research Roadmap.-The Committee recognizes the urgent need to advance research for ME/CFS, especially given its overlap with Long COVID and relevance across multiple ICs and com-
mends NIH for approving the ME/CFS Research Roadmap. The Committee encourages NIH to implement the roadmap's rec-
biomarker rec-ommendations, including advancing biomarker discovery, diagnostic tool development, and clinical trials. NIH is further directed to provide a detailed implementation plan to the Committee within 180 days of enactment.
55014
Gro @mesnag.bsky.social · 29/07/2025
theconversation.com/long-covid-v...
theconversation.com
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.
010
Reposted by Gro
ME/CFS Science @mecfsscience.org · 29/07/2025
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..."
1275
Gro @mesnag.bsky.social · 29/07/2025
Snodig følelse å ta på langbukse etter et par uker med nesten ingen klær.
010
Reposted by Gro
Billy Hanlon @bhanlon15.bsky.social · 28/07/2025
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...
bbc.co.uk
Bedfordshire woman with ME criticises health plan for condition
Maddie Walker says she is
0195
Reposted by Gro
Tom Kindlon @tomkindlon.bsky.social · 23/07/2025
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/
APPENDIX 2. ME/CFS Symptom Prevalence and Severity (These prevalence and severity figures are from A definition-based analysis of symptoms in a large cohort of patients with chronic fatigue syndrome, P. De Becker, N. McGregor, and K. De Meirleir. Journal of Internal Medicine 2001;250:234-240.) A total of 2,073 consecutive patients with major complaints of prolonged fatigue were assessed. Among them 1,578 met the Fukuda criteria and of those, 951 met the Holmes criteria. The figures indicate the differences in prevalence and severity of symptoms between these patient groups.
31514
Reposted by Gro
Eivind HM. @eivind1984.bsky.social · 14/07/2025
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.
aftenposten.no
Arbeidslivet må endres hvis flere uføre skal i jobb
Les innlegget.
22353147
Gro @mesnag.bsky.social · 12/07/2025
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!
010
Reposted by Gro
ME/CFS Science @mecfsscience.org · 11/07/2025
1) The pilot results (n = 10) for the Daratumumab trial on ME/CFS have been published and they look quite encouraging. Tolerability and feasibility were good and some patients had substantial improvements.
1217
Gro @mesnag.bsky.social · 12/07/2025
Problemet med å være aleine på hytta i fantastisk sommervær er at det alltid er en flekk midt bak på ryggen jeg ikke klarer å smøre med solkrem. Ellers er det relativt fredelig uten mye drama.
010
Reposted by Gro
Anne-Cath R @anne-cath.bsky.social · 19/06/2025
Personer med #MEcfs er nødt til å finansiere legemiddelforskningen selv. Ikke rart det tar lang tid å komme noen vei….
054
Reposted by Gro
Tom Kindlon @tomkindlon.bsky.social · 03/06/2025
Dutch doctors using questionable treatment on kids with chronic fatigue syndrome nltimes.nl/2025/05/31/d... Critical article #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Child playing with chalk
Child playing with chalk - Credit: Kruchenkova / DepositPhotos - License: DepositPhotos
Health myalgic encephalomyelitis/chronic fatigue syndrome ME/CFS Long Covid cognitive behavioral therapy Dutch Association for Pediatrics » More tags
Saturday, 31 May 2025 - 08:15
Dutch doctors using questionable treatment on kids with chronic fatigue syndrome
Doctors in the Netherlands often treat children with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) using a method with questionable scientific basis, NOS reports after studying international medical guidelines, scientific studies, and the positions of medical advisory organizations and patient associations in the Netherlands.
153
Gro @mesnag.bsky.social · 15/05/2025
Imponerende av Yama Wolasmal å holde maska i intervjuet med Bismuth. Hersketeknikker og avbrytelser på løpende bånd. #nrk
010
Reposted by Gro
DrMichelleBull💙 @michelleb4.bsky.social · 11/05/2025
Just back from a wonderful week in Norway for the @meforeningen.bsky.social Digging Deeper conference & took the opportunity to ride my bike somewhere a bit different. Fantastic to meet @putrinolab.bsky.social @bmhughes.bsky.social in person along with others who I can't find to tag ...1/3
1246
Reposted by Gro
emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 11/05/2025
TLDR: This is an SOS. If you don’t have capacity to read this whole thread, please skip ahead to ***WAYS YOU CAN HELP*** Please pick at least one! 🙏🏻💙 #MEAwareness #MillionsMissing #DisabilitySOS #WorldMEDay #GreatestMEdicalScandal #MyalgicEncephalomyelitis #MECFS #LongCovid
Self portrait of me (39 year old ww with wavy dark hair wearing sweatpants & a blue robe) seated in bed with my chi mix on my lap. I’m holding a sign that says Fuck M.E. in white all-caps over blackFuck M.E. in white all-caps over black
19749
Reposted by Gro
Anne-Cath R @anne-cath.bsky.social · 10/05/2025
ME-syke og sikkert endel pårørende gjennomførte liggende demonstrasjon i Berlin i dag. Lignende demonstrasjoner over hele Tyskland de neste dagene. #MECFS
053
Reposted by Gro
Tom Kindlon @tomkindlon.bsky.social · 25/04/2025
🧵 It would be great if friends of people with ME/CFS or long COVID would take the time to read this. These conditions are very socially isolating and lonely and patients would love to maintain friendships www.emerge.org.au/how-to-suppo... #LongCovid #MEcfs 1/
How to support your friend who lives with ME/CFS or long COVID
Home
/
MECFS Information
/
How to support your friend who lives with ME/CFS or long COVID
Emerge Australia has put together this guide to help you understand what someone with ME/CFS may be experiencing, and to provide some tips to help support them to stay connected.
11202111
Reposted by Gro
ME/CFS Science @mecfsscience.org · 25/04/2025
1) What it's like to become an adult with ME/CFS? I think this Australian study captures the most important themes quite well.
12814
Gro @mesnag.bsky.social · 22/04/2025
Ny studie i Storbritannia med funn som stemmer godt med det FAFO/Sintef fant i Norge. #ME www.thetimes.com/uk/healthcar...
thetimes.com
ME sufferers ‘feel invisible and ignored’ amid lottery of NHS care
A study found that 404,000 people are living with the illness, two thirds more than previously thought, with a 50-fold variation in diagnosis rates
000
Gro @mesnag.bsky.social · 13/04/2025
Så var bjørkepollensesongen i gang. Tar pille.
010
Reposted by Gro
Olga Nesterova @onestpress.onestnetwork.com · 30/03/2025
Also, a woman was handcuffed at a subway station in NYC (Franklin Ave) when she intervened asking why a delivery man was asked to show work permit by undercover agents. There is a video of that.
411118695412
Gro @mesnag.bsky.social · 16/03/2025
Prinsipielt viktig ME-sak til lagmannsretten. Støtt med en slant til advokatutgifter. ME-syk trenger hjelp til ankesak. spleis.no/413131
spleis.no
ME-syk trenger hjelp til ankesak.
Økonomisk hjelp til advokatutgifter, om saken tapes. Vinnes saken, går pengene til ME-foreningen. Saken er veldig viktig, da dom på høyere % medisinsk invaliditet , kan brukes av andre me-syk...
011
Reposted by Gro
Long Covid Families @longcovidfam.bsky.social · 15/03/2025
Children are developing Long COVID every day. With each new infection, more kids face lasting health struggles, impacting their education and daily lives. Yet, research and support remain far behind. We can’t ignore this crisis. Kids deserve protection, care, and a chance to heal. #LongCOVID
04325
Reposted by Gro
Prem Thakker ツ @premthakker.bsky.social · 14/03/2025
NEW: Family of Mahmoud Khalil just released footage of his arrest “Stop resisting” “He’s not resisting” Agents seen continuing to ignore Mahmoud’s wife as she asks basic questions
671101824995
Reposted by Gro
Tania Randby Garthus @tanrangar.bsky.social · 13/03/2025
Jeg ler så jeg gråter, snakk om å treffe spikeren midt på hodet 😂 agendamagasin.no/debatt/ta-al...
agendamagasin.no
Ta alle kvinner ut av arbeidslivet! Og erstatt oss med menn
Jeg utfordrer dere: La menn ta over hele helsevesenet, samfunnet og la oss være hjemme og se Bridgerton! Da vil sykefraværet bli så lavt at Tonje Brenna gråter på tv.
1225
Gro @mesnag.bsky.social · 13/03/2025
De fleste blir altså ikke friske. www.forskning.no/helse-samfun...
forskning.no
Nesten ingen ME-pasienter kommer tilbake i jobb
– Hjelpen vi har gitt pasientene gjennom NAV og helsevesenet har gitt liten rehabiliterende effekt, sier forsker.
020
Reposted by Gro
Hanne Ramstad @hangreram.bsky.social · 09/03/2025
Replikerte resultater bekrefter at ME/CFS er en kompleks sykdom med nevrologiske, immunologiske og metabolske dysfunksjoner. Diskusjonen handler ikke lenger om hvorvidt disse fysiske avvikene finnes i kroppen. www.aftenposten.no/meninger/deb...
aftenposten.no
Nei, ME-forskningen står ikke fast
Les innlegget.
063