Gro
@mesnag.bsky.social
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Clarinettist. Conductor. Caregiver. 4 cats, 2 kids, 1 husband.
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Gro
Richard A White, PhD
5 months ago
www.nettavisen.no/norsk-debatt...
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Steigan misbruker forskningen min
Jeg kan ikke sitte stille og se pÄ at forskningen min brukes til Ä fremme feil narrativ.
https://www.nettavisen.no/norsk-debatt/pal-steigan-misbruker-forskningen-min-om-koronavaksine/o/5-95-2782214
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George Takei
6 months ago
Would this have happened to a white resident? Asking for the First Nations.
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Gro
#MEAction Network
6 months ago
Have you wondered how you can help a caregiver in your life? If youâre a caregiver, have you ever had a friend say, âLet me know how I can help,â and your mind just goes blank? Check out Supporting Family Caregivers by Caregiver Wisdom:
www.caregiverwisdom.net/post/support...
#Caregiver
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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.
https://www.caregiverwisdom.net/post/supporting-family-caregivers-20-heartwarming-ways-you-can-make-a-difference
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Elin L'Estrange đč
7 months ago
I dag sa KrFU-lederen pÄ
#dax18
at hun selv ikke ville tatt en angrepille. SĂ„ da tar vi litt folkeopplysning. NĂždprevensjon virker ved Ă„ utsette egglĂžsning, har ingen effekt hvis egglĂžsning allerede har vĂŠrt. NĂždprevensjon avbryter ikke svangerskap. Angrepille er ikke en tidlig abort. Si det videre.
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Miriam E. Tucker
7 months ago
"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/...
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No Evidence Supports Using Graded Exercise for ME/CFS
Studies examining the effects of activity-based interventions havenât required post-exertional malaise as a core criterion for the now-termed âmyalgic encephalomyelitis/chronic fatigue syndrome.â
https://www.medscape.com/viewarticle/no-evidence-supports-using-graded-exercise-myalgic-2025a1000tuf
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Eirik A
7 months ago
ok, fÞrst litt fakta: 1. syke har rett til og behov for hjelp 2. BPA er rimeligere og mer effektivt enn andre lÞsninger Men kommunen nekter. Resultat? 1. Den syke blir sykere 2. PÄrÞrende faller ut av jobb 3. Kommunen svikter sine kjerneoppgaver og sparer IKKE penger
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ME-syke Ingrid (23) i StjĂžrdal har mistet den brukerstyrte personlige assistenten
MÄlet er Ä bli frisk og studere, men nÄ har ME-syke Ingrid mistet assistenten og blitt sykere.
https://www.nrk.no/trondelag/me-syke-ingrid-_23_-i-stjordal-har-mistet-den-brukerstyrte-personlige-assistenten-1.17586356?fbclid=Iwb21leANbnltjbGNrA1ueWGV4dG4DYWVtAjExAAEelyPwB52NmCAlO_oIzkVTfLN0gJo-_DNW9NKWmbrfLUAJP4Eum5jw8yoa4Rc_aem_WDShbPpPLJ_W3Nw0pM01oQ
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ME/CFS Science
8 months ago
1) đłđŽ 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.
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Ny artikkel fra Tjenesten og MEg. Fafo/Sintef ser pĂ„ pĂ„rĂžrende til ME-syke. Ăkonomi og helse
link.springer.com/article/10.1...
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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...
https://link.springer.com/article/10.1186/s12982-025-00936-5
8 months ago
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puh.
9 months ago
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Safina de Klerk
9 months ago
Det er lite jeg er enig med Anne-Kari Bratten om, men her treffer hun spikeren pÄ hodet. Noe sier meg at «gutta» kommer til Ä slite nÄr de fÄr sÄnne som meg som leder.
www.dn.no/ledelse/lede...
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Guttastemning pÄ arbeidsplassen
«Guttastemning» skal mÞte voksne kvinnelige ledere som meg. Lykke til.
https://www.dn.no/ledelse/ledelse/arbeidsliv/likestilling/guttastemning-pa-arbeidsplassen/2-1-1860808?fbclid=IwQ0xDSwMZxexleHRuA2FlbQIxMQABHtyZ7ttwL7zaTy60s14BMxsiVJzg9YL4S3tPUMOpHDAq7q9Tu5uPscvdehm4_aem_Quv1kiweUKhcFCXjfmSNDg
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Biomedisinsk forskning pÄ ME gjorde Christian frisk. Tenk om vi kunne bevilge mer penger til disse forskerne, sÄ kanskje gÄten lÞses? Ny studie pÄ kreftmedisin trenger finansiering.
www.nrk.no/nordland/xl/...
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Christian vil inn pĂ„ Stortinget: â Det meste i livet handler om flaks
Christian Torset vil ta igjen det tapte etter 15 Är pÄ sofaen. Derfor kjemper han nÄ om en plass pÄ Stortinget.
https://www.nrk.no/nordland/xl/christian-torset-i-sv-var-for-syk-til-a-jobbe-i-15-ar.-na-vil-han-inn-pa-stortinget-1.17540564
9 months ago
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Miles W. Griffis
10 months ago
Late singer Kara Jane's family has released her album "In Limbo" posthumously on
#SevereMEday
đ. 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...
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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...
https://thesicktimes.org/2025/08/08/posthumous-album-of-singer-kara-jane-released-on-severe-me-awareness-day/
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ME/CFS Science
10 months ago
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. Letâs unpack the results đ§”
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Chris Ponting
10 months ago
Science magazineâs coverage of the DecodeME initial results :
www.science.org/content/arti...
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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 âgenetic signalsâ
https://www.science.org/content/article/possible-genetic-clues-me-chronic-fatigue-syndrome-identified-massive-study
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DecodeME
10 months ago
(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
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Scientists find link between genes and ME/chronic fatigue syndrome
www.theguardian.com/society/2025...
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Scientists find link between genes and ME/chronic fatigue syndrome
Large study suggests peopleâs genetics could âtip the balanceâ on whether they would develop the illness
https://www.theguardian.com/society/2025/aug/06/genes-me-chronic-fatigue-syndrome?CMP=share_btn_url
10 months ago
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Sam
10 months ago
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/...
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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.
https://www.standard.co.uk/news/health/people-university-of-edinburgh-european-medical-research-council-b1241813.html
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de har funnet noe genetisk!
www.research.ed.ac.uk/en/publicati...
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Initial findings from the DecodeME genome-wide association study of myalgic encephalomyelitis/chronic fatigue syndrome
https://www.research.ed.ac.uk/en/publications/initial-findings-from-the-decodeme-genome-wide-association-study-
10 months ago
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Younger har faktisk funnet betennelse i hjernen til ME-syke.
youtu.be/wuzmYJxM-r0
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067 - New results: The ME/CFS brain is inflamed
YouTube video by Jarred Younger, PhD
https://youtu.be/wuzmYJxM-r0
10 months ago
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Hilda Bastian
10 months ago
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
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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 âWhen journal, scientific society, and community values clash.â I recounted the tale of theâŠ
https://absolutelymaybe.plos.org/2025/07/31/six-months-later-what-their-response-on-me-cfs-tells-us-about-the-cochrane-collaboration/
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Tom Kindlon
10 months ago
đ§” Extract from a new short blogpost of mine: "3 basic reasons why people with ME/CFS canât be as 'academically productive' (learn as much in an academic year) as they could be before the illness"
#MyalgicEncephalomyelitis
#ChronicFatigueSyndrome
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C.H. Romatowski
10 months ago
Huge congrats to everyone whoâs been advocating for support for the NIHâs ME/CFS Research Roadmap!! đ„łđ„ł Senate FY26 budget language, out today, would give NIH 180 days to send the Senate a âdetailed implementation planâ for the Research Roadmap! đ„đ„
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theconversation.com/long-covid-v...
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Long-COVID, viruses and âzombieâ cells: new research looks for links to chronic fatigue and brain fog
SARS-CoV-2 and some other viruses trigger âzombie cellsâ that can create a mix of symptoms seen in long-COVID.
https://theconversation.com/long-covid-viruses-and-zombie-cells-new-research-looks-for-links-to-chronic-fatigue-and-brain-fog-261108?utm_medium=article_native_share&utm_source=theconversation.com
10 months ago
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ME/CFS Science
10 months ago
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..."
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Snodig fÞlelse Ä ta pÄ langbukse etter et par uker med nesten ingen klÊr.
10 months ago
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Billy Hanlon
10 months ago
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...
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Bedfordshire woman with ME criticises health plan for condition
Maddie Walker says she is
https://www.bbc.co.uk/news/articles/cn5k54qz3lyo
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Tom Kindlon
10 months ago
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
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Eivind HM.
10 months ago
Facebook-innlegget mitt om at arbeidslivet mÄ endres for at flere ufÞre skal kunne jobbe, er blitt til innlegg i Aftenposten. De har strÞket en "drit og dra!", men har beholdt "Herre milde Josef og Maria", sÄ det er da noe. Lik og del, som dem sier.
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Arbeidslivet mÄ endres hvis flere ufÞre skal i jobb
Les innlegget.
https://www.aftenposten.no/meninger/debatt/i/GyWPkQ/arbeidslivet-maa-endres-hvis-flere-ufoere-skal-i-jobb
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NÄ har jeg skrytt sÄ mange dager pÄ facebook at jeg mÄ spre det litt. Har kjÞp kajakk, sÄ jeg kommer meg ut pÄ vannet selv om jeg er aleine pÄ hytta. Veldig moro!
11 months ago
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ME/CFS Science
11 months ago
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.
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Problemet med Ä vÊre aleine pÄ hytta i fantastisk sommervÊr er at det alltid er en flekk midt bak pÄ ryggen jeg ikke klarer Ä smÞre med solkrem. Ellers er det relativt fredelig uten mye drama.
11 months ago
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Anne-Cath R
11 months ago
Personer med
#MEcfs
er nĂždt til Ă„ finansiere legemiddelforskningen selv. Ikke rart det tar lang tid Ă„ komme noen veiâŠ.
add a skeleton here at some point
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Tom Kindlon
12 months ago
Dutch doctors using questionable treatment on kids with chronic fatigue syndrome
nltimes.nl/2025/05/31/d...
Critical article
#MyalgicEncephalomyelitis
#ChronicFatigueSyndrome
#MEcfs
#CFS
#PwME
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Imponerende av Yama Wolasmal Ä holde maska i intervjuet med Bismuth. Hersketeknikker og avbrytelser pÄ lÞpende bÄnd.
#nrk
about 1 year ago
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DrMichelleBullđ
about 1 year ago
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
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emily fraser đżđâš
about 1 year ago
TLDR: This is an SOS. If you donât have capacity to read this whole thread, please skip ahead to ***WAYS YOU CAN HELP*** Please pick at least one! đđ»đ
#MEAwareness
#MillionsMissing
#DisabilitySOS
#WorldMEDay
#GreatestMEdicalScandal
#MyalgicEncephalomyelitis
#MECFS
#LongCovid
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Anne-Cath R
about 1 year ago
ME-syke og sikkert endel pÄrÞrende gjennomfÞrte liggende demonstrasjon i Berlin i dag. Lignende demonstrasjoner over hele Tyskland de neste dagene.
#MECFS
add a skeleton here at some point
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Tom Kindlon
about 1 year ago
đ§” 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
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ME/CFS Science
about 1 year ago
1) What it's like to become an adult with ME/CFS? I think this Australian study captures the most important themes quite well.
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Ny studie i Storbritannia med funn som stemmer godt med det FAFO/Sintef fant i Norge.
#ME
www.thetimes.com/uk/healthcar...
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ME sufferers âfeel invisible and ignoredâ 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
https://www.thetimes.com/uk/healthcare/article/me-cfs-sufferers-ignored-nhs-care-lottery-bxzlxmrm2
about 1 year ago
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SĂ„ var bjĂžrkepollensesongen i gang. Tar pille.
about 1 year ago
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Olga Nesterova
about 1 year ago
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.
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Prinsipielt viktig ME-sak til lagmannsretten. StĂžtt med en slant til advokatutgifter. ME-syk trenger hjelp til ankesak.
spleis.no/413131
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ME-syk trenger hjelp til ankesak.
Ăkonomisk hjelp til advokatutgifter, om saken tapes. Vinnes saken, gĂ„r pengene til ME-foreningen. Saken er veldig viktig, da dom pĂ„ hĂžyere % medisinsk invaliditet , kan brukes av andre me-syk...
https://spleis.no/413131
about 1 year ago
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Long Covid Families
about 1 year ago
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 canât ignore this crisis. Kids deserve protection, care, and a chance to heal.
#LongCOVID
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Prem Thakker ă
about 1 year ago
NEW: Family of Mahmoud Khalil just released footage of his arrest âStop resistingâ âHeâs not resistingâ Agents seen continuing to ignore Mahmoudâs wife as she asks basic questions
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Tania Randby Garthus
about 1 year ago
Jeg ler sĂ„ jeg grĂ„ter, snakk om Ă„ treffe spikeren midt pĂ„ hodet đ
agendamagasin.no/debatt/ta-al...
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Ta alle kvinner ut av arbeidslivet! Og erstatt oss med menn
Jeg utfordrer dere: La menn ta over hele helsevesenet, samfunnet og la oss vÊre hjemme og se Bridgerton! Da vil sykefravÊret bli sÄ lavt at Tonje Brenna grÄter pÄ tv.
https://agendamagasin.no/debatt/ta-alle-kvinner-ut-av-arbeidslivet-og-erstatt-oss-med-menn/?fbclid=IwY2xjawJAAF9leHRuA2FlbQIxMQABHVQ3EUDanFcZgWVldscn0lBqQ0S-J1lGOCWOAKFyQrGja3JGUDvV3qrdmg_aem_Xf61lD_23frbosfwsqok-g
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De fleste blir altsÄ ikke friske.
www.forskning.no/helse-samfun...
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Nesten ingen ME-pasienter kommer tilbake i jobb
â Hjelpen vi har gitt pasientene gjennom NAV og helsevesenet har gitt liten rehabiliterende effekt, sier forsker.
https://www.forskning.no/helse-samfunn-sykdommer/nesten-ingen-me-pasienter-kommer-tilbake-i-jobb/2464548
about 1 year ago
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Elin L'Estrange đč
about 1 year ago
Unge menn i KrFU som ikke aner hva de snakker om forsÞker Ä bestemme over foreldre og kvinner gjennom politikk, en trÄd.
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Hanne Ramstad
about 1 year ago
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...
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Nei, ME-forskningen stÄr ikke fast
Les innlegget.
https://www.aftenposten.no/meninger/debatt/i/73M2M9/nei-me-forskningen-staar-ikke-fast?utm_source=iosapp&utm_medium=share&fbclid=IwY2xjawI62LJleHRuA2FlbQIxMQABHccy3sbGg0ZA72By1Jx66414WSs3-tQ95uZjpxhHnE7V3f5dS6bpomfM6Q_aem_Ue1mfyrji5W_xiqbykdSWA
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Cornelia Kristiansen
about 1 year ago
«SÄnn er jeg skrudd sammen», sier vi. Alt i verden fungerte som mekanikken i en klokke, tenkte opplysningsfilosofene. Blindsonene merker vi fortsatt. NÄr vi blir gamle, er det barna som gir mye av hjelpen. Men dette telles i helt andre statistikker.
www.dagsavisen.no/debatt/komme...
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