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Lene Benedicte

@lenebene.bsky.social
111 followers 295 following 282 posts

Music was my occupation before #MEcfs took it away from me. Education #music plus #drama and #theatre #Iwrite #animals #genealogy #litterature #languages #BritishTVseries #equalopportunities #environment #endallwars #endpoverty

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Sandy Stevenson @tourscotland.bsky.social · 14/06/2026
Tour #Scotland travel photograph and video Blog with #Scottish music of the #Island of #Lunga on #ancestry, #history visit and trip to #Treshnish #Isles. Lunga still bears the remains of a ruined village, which was abandoned in 1857 tour-scotland-photographs.blogspot.com/2020/10/isla...
tour-scotland-photographs.blogspot.com
Island Of Lunga On Visit To Treshnish Isles In Argyll and Bute Scotland
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Tom Kindlon @tomkindlon.bsky.social · 14/06/2026
Can every infection become a chronic disease? san.com/cc/can-every... @scienceforme.bsky.social weekly update summary: The article asks if the true burden of infectious diseases is larger than previously anticipated. Interviews with among others Ziyad Al-Aly and Amy Proal. #LongCovid #MEcfs
san.com
Can every infection become a chronic disease?
During the pandemic, long COVID emerged as a medical curiosity. Now, it is changing how scientists think about infections.
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Sandy Stevenson @tourscotland.bsky.social · 14/06/2026
Tour #Scotland aerial travel photograph and short video Blog with #Scottish music of the #Island Of #Boreray, #Gaelic: Boraraigh an uninhabited island, on #ancestry, #history visit and trip to #archipelago of #St #Kilda. 41 miles from North Uist tour-scotland-photographs.blogspot.com/2021/01/isla...
tour-scotland-photographs.blogspot.com
Island Of Boreray On Visit To Archipelago Of St Kilda North Atlantic Scotland
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Sandy Stevenson @tourscotland.bsky.social · 14/06/2026
Tour #Scotland travel photograph and video Blog clip, with #Scottish music, of cottages and people on #ancestry, #genealogy, #history visit and trip to #Hirta, #Gaelic: Hiort, the largest island in the #St #Kilda #archipelago tour-scotland-photographs.blogspot.com/2021/08/cott...
tour-scotland-photographs.blogspot.com
Cottages And People On History Visit To Hirta St Kilda Outer Hebrides Scotland
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Nina Steinkopf @ninasteinkopf.bsky.social · 15/05/2026
Når strategien blir en del av problemet . melivet.com/2026/05/15/n...
melivet.com
Når strategien blir en del av problemet
Noen ganger er det ikke bare motparten som er problemet, men også måten man velger å møte den på. Prosessen rundt Helsedirektoratets nye retningslinje viser hvor høy prisen kan bli når tilpasning e…
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Eleanor Fielding @meownersclub.bsky.social · 16/05/2026
Give us the support and medications we need so we can get our lives back and be useful again! #MEAwarenessWeek #MEAwarenessMonth #SimonWessely
The University of Edinburgh has been awarded £4.7m for genetic research into #ME

In this cartoon a woman is kicking a football (with Simon Wessely’s head on it) into the Dustbin of History

She is saying “and THAT professor Wessely is how you spend £4m on PROPER SCIENCE”

Mousiest is pushing the dustbin lid closed so that once he’s in the dustbin of history he cannot escape ”

The cartoon maker is #FanningTheFlames
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Lene Benedicte @lenebene.bsky.social · 14/05/2026
Helt enig. Det sytes over en lav sko. Vi er utrolig heldige med det meste i Norge. www.dagsavisen.no/debatt/vi-er...
dagsavisen.no
Vi ere en nasjon av sytere, vi med
Barneforeldre syter. Rikinger syter. Dieselbilister, kaffedrikkere og boligeiere syter. Alle syter vi. Ofte. Og høylytt.
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Oppklipt @oppklipt.bsky.social · 10/05/2026
I’m still alive, despite being sent home from the ER Friday night with no explanation to why I’m in so much pelvic pain. ”You look fine, so let’s see how this progresses.“ Yeah well, your phone lady told me to take pain medication and it worked. Surprise! That’s how pain medicine works.
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Oppklipt @oppklipt.bsky.social · 06/12/2025
Norwegian ME patients has made a English petition to get enough attention for the Norwegian ME/CFS study. Please share so this get traction!! So far Norwegian ME patients has been crowdfunding. This petition is to get the attention of the Norwegian government to fund the study. 🚨 SHARE PLEASE 🚨
c.org
This campaign needs you now
Call for Funding a New Clinical Study on Daratumumab for ME/CFS
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Lene Benedicte @lenebene.bsky.social · 14/05/2026
#ME #MyalgicEncephalomyelitis #millionsmissing #MEawareness #ActionforME #PEM #pwME #POTS #MCAS
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Eleanor Fielding @meownersclub.bsky.social · 19/05/2025
#ActionForME #ThereForME @WesStreeting @theguardian.com @davetuller1.bsky.social @lcaireland.bsky.social #MEActionUK #25%MEgroup
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Lene Benedicte @lenebene.bsky.social · 14/05/2026
#ME #LC #MEawareness #chronicillness #actionforME thesicktimes.org/2026/05/12/t...
thesicktimes.org
Thousands “lie in” for German ME protests - The Sick Times
The demonstrations, organized by the group #LiegendDemo, took place in 42 cities across the country. Advocates demanded an end to “psychosomatic treatment of ME,” mandatory training for medical profes...
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Tom Walsh @tewalsh340.bsky.social · 13/05/2026
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Karississima @boydstra.bsky.social · 14/05/2026
Yes!
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Bridget @brid41.bsky.social · 14/05/2026
Recent Advances in Biomedical M.E. Research, and Why This Field Needs More www.linkedin.com/events/recen... Thurs, May 14th 1:30 EDT (assuming I did the math correctly)
linkedin.com
LinkedIn Login, Sign in | LinkedIn
Login to LinkedIn to keep in touch with people you know, share ideas, and build your career.
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Mandy @mandylifeboats.bsky.social · 12/05/2026
SIGN NOW: Free 70-year-old marine biologist Leonid Pshenichnov tinyurl.com/2phfbkxv
tinyurl.com
Free Leonid Pshenichnov! 🐳
This 70-year-old scientist is in jail for blowing the whistle to protect Antarctica. Sign now to demand his release.
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Karississima @boydstra.bsky.social · 13/05/2026
Yup.
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Tom Walsh @tewalsh340.bsky.social · 13/05/2026
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Norsk Slektshistorisk Forening @genealogidotno.bsky.social · 13/05/2026
NSF inviterer til sommertur lørdag 6. juni 2026: genealogi.no/arrangement/...
genealogi.no
Sommertur til Ringerike - Norsk Slektshistorisk Forening
Foreningen besøker Norderhov kirke og severdighetene på kirkegården. Lunsj og kaffe med guidet omvisning på Mo gård (Jørgen Moes fødested). Lokal guide tar oss med til Steinsfjerdingen, Stein gård og ...
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Richard Vallée @richardvallee.bsky.social · 13/05/2026
The failure of most clinical trials on Long Covid, the vast majority of which are a complete waste of resources, wasn't even a problem of doing the same old things that failed before and expecting different outcomes. It was total indifference to the fact that the outcomes have always been failure.
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 13/05/2026
It is always said ,"no one deserves to suffer" and "every one deserves to have a better life" , but how those sayings can be be put into effect is the question. #chronicillness #Disability
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Karississima @boydstra.bsky.social · 13/05/2026
Surely someone in the area needs this sweetheart.
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Nina Steinkopf @ninasteinkopf.bsky.social · 02/05/2026
Helsedirektoratets utkast til ny retningslinje for «langvarig utmattelse inkl. ME/CFS» er et slag midt i fleisen. Her er mitt innspill til høringen. Fristen for å sende innspill er mandag 4. mai. melivet.com/2026/05/02/h...
melivet.com
Høringsinnspill: Retningslinje for langvarig utmattelse, inkl. ME/CFS
Høringssvar til Helsedirektoratets utkast til nasjonal faglig retningslinje for langvarig utmattelse, inkl. ME/CFS Helsedirektoratet har bestemt tittelen på retningslinjen etter det som var Helse- …
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JK @fyttirakkernagitt.bsky.social · 02/05/2026
Den nye veilederen fra Hdir er totalt uakseptabel for pasienter med ME og LC: "På samme måte som Multippel Sklerose og Parkinsons i sin tid ble feildiagnostisert som psykologiske eller psykosomatiske tilstander, har Helsedirektoratet nå tatt et valg i samme retning med psykologisering av ME."
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Richard Vallée @richardvallee.bsky.social · 02/05/2026
The harm is still ongoing, and intentional. This is abuser behavior, it won't stop no matter how much harm they are causing, can't ever respect such basic concepts as consent and scientific validity. The evidence base for this ideology is the worst in all the expert disciplines, by a long shot.
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Steve K. S. 🕊️ @stevekspo.eurosky.social · 21/04/2026
😆
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Lene Benedicte @lenebene.bsky.social · 20/04/2026
#ME #myalgiskencefalopati #millionsmissing #MEawareness #MEerikkeCFS #kronisksykdom #MyalgicE #MyalgicEncephalomyelitis www.gjengangeren.no/lene-lever-m...
gjengangeren.no
Lene lever med en usynlig sykdom: – Det verste er følelsen av å bli mistrodd
Det er over 20 år siden Lene Benedicte Lauritzen ble syk. Likevel skulle det ta mange år før hun fikk svar på hva som feilte henne.
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Lene Benedicte @lenebene.bsky.social · 12/04/2026
#Maktmisbruk www.khrono.no/anklaget-for...
khrono.no
An­kla­get for fusk av KI-detektor. — Folk er redde
Ma­thil­de valg­te å for­tel­le om opp­le­vel­sen sine et­ter å ha bli an­kla­get for KI-fusk. Nå har LinkedIn-inn­leg­get hatt nes­ten 70.000 vis­nin­ger.
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Doremus Schafer @doremus-schafer.bsky.social · 01/03/2026
Aldeles fremragende kronikk om de usynlige hverdagsheltedådene som ikke r tilstrekkelig voldsomme eller fotogene til at de får dokumentarer eller hyllester, men likevel høyst reelle for alle de som faller i spennet mellom 'normalitet' og 'så langt fra normalitet at prestasjonen er åpenbar for alle'.
nrk.no
Jeg trenger ikke applaus
For noen av oss er det ikke fjelltopper som er ekstremsport. Det er å leve et vanlig liv – uten heiarop, kamerateam og pauseknapp.
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Tom Walsh @tewalsh340.bsky.social · 10/04/2026
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 10/04/2026
In chronic illness life ,giving up is not the right option, in my opinion,but also the long journey of struggling is not easy though it's must in case someone wants to keep going. #chronicillness
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Nina Steinkopf @ninasteinkopf.bsky.social · 24/03/2026
Helsedirektoratet har laget en retningslinje for hvordan ME skal behandles og blander sammen ME med andre lidelser. Det stor fare for at ME-syke får feil diagnose, feil behandling og blir sykere. Vi krever en egen retningslinje kun for ME.💙Hjelp oss ved å signere her: www.opprop.net/vi_me_syke_k...
opprop.net
Krav om egen nasjonal retningslinje for ME (G93.3)
I disse dager er Helsedirektoratets retningslinje for «Utmattelse – langvarig utmattelse inkl. ME/CFS» på høring. Dette er et opprop fra ME syke og våre pår&...
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Nina Steinkopf @ninasteinkopf.bsky.social · 28/03/2026
- and while we patients take from our social security to fund biomedical ME research, tax money goes to this: 25 mill. allocated to research – and how to lie with graphics melivet.com/2026/03/28/2...
melivet.com
25 mill. allocated to research – and how to lie with graphics
A research project was recently allocated 25 million Norwegian kroner. In the project description, research results are presented on misleading graphs and presented as favorable and remarkable even…
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Nina Steinkopf @ninasteinkopf.bsky.social · 28/03/2026
Lightning Process-instruktør Live Landmark, som i nesten 20 år har fortalt allmennheten og myndighetene at hun ble frisk fra ME ved hjelp av Lightning Process – mener ME ikke finnes. Danske Vibeke Vind fra Danmark setter skapet på plass: www.forskersonen.no/debattinnleg...
forskersonen.no
Det er på tide å forstå ME-diagnosen
DEBATT: Det er definitivt ikke på tide å si farvel til ME-diagnosen. Tvert imot er det på høy tid å ønske en naturvitenskapelig forståelse av ME velkommen, ifølge innsenderen.
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 26/03/2026
All calamities, catastrophes and crises , both natural and human-made ones ,such as wars , famines, earthquakes,etc. can come to an end whereas the situation of being chronically ill and/or disabled person, house-bound or bedridden has no end . #chronicillness #Disability
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 09/12/2025
I need $ 450 roughly per a month ,i.e.$12 - $15 a day to cover my daily needs are needed . Kindly contribute if you can or share widely please. Thank you in advance Hassan. #MutualAid #chronicillness #Disability #Muscular_Dystrophy #MuscularDystrophy www.gofundme.com/f/help4hassan
gofundme.com
Donate to #Help4Hassan - Save a life in Yemen, organized by Kate H.
NOTICE: This fundraiser was set up in 2018. The amount you see here is the amoun… Kate H. needs your support for #Help4Hassan - Save a life in Yemen
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 02/04/2026
I believe,building life again after its collapse is the most important thing for chronically ill and/or disabled people,so that they can keep going as much as possible in the long journeys they are reluctantly forced into. #chronicillness #Disability
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 06/04/2026
Chronically ill people, during their journeys with chronic illness may resist first,then expect and finally accept reluctantly . So they may pass through three stages , resistance, expectancy and acceptance . #chronicillness
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Lene Benedicte @lenebene.bsky.social · 06/04/2026
@hassankhaderali.bsky.social Thanks 🫂
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 09/12/2025
Hi dear all ! I am Hassan from Yemen. I had Muscular Dystrophy, ,type : progressive LGMD and turned to completely disabled and house-bound . Both of my upper and lower limbs lost their functions ,so currently,I can't walk at all or use my arms properly. #MutualAid #chronicillness #Disability
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🍁Hilde🍁 @hildec.bsky.social · 06/04/2026
«NAV krever lungetransplantasjon før uføretrygd kan innvilges» Nå har de mista vettet fullstendig i NAV. www.facebook.com/share/p/1AvG...
facebook.com
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Hassan Khader Ali Yousef @hassankhaderali.bsky.social · 29/03/2026
The most sacred mission is to fight for your life . #chronicillness #Disability
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StarDust949 @stardust949.bsky.social · 29/03/2026
The cruelty just keeps on coming with this #Labour government. But then again Chronically Ill/Disabled are completely disposable after all.
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Lene Benedicte @lenebene.bsky.social · 25/03/2026
#kvinnehelse www.forskning.no/kvinnehelse-...
forskning.no
Forskere installerte en kreft-test i bind. Dette fant de ut
Blod i bind kan gi mer kunnskap om helsen i underlivet, ifølge ny studie.
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Lene Benedicte @lenebene.bsky.social · 23/03/2026
www.forsvaretsforum.no/cold-respons...
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Lene Benedicte @lenebene.bsky.social · 23/03/2026
#ME #MEawareness www.forskersonen.no/covid19-deba...
forskersonen.no
Det er på tide å ta ME-diagnosen på alvor
DEBATT: Logikken om at hvis man ikke kan finne fram til ett enkelt biologisk spor som kan definere sykdommen, finnes den ikke, holder selvfølgelig ikke mål, skriver innsenderen.
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Lene Benedicte @lenebene.bsky.social · 20/03/2026
Kina har plantet 66 milliarder trær i en ørken share.google/Y7Hd190oMlCG...
share.google
Kina har plantet 66 milliarder trær i en ørken
Det ble først og fremst gjort for at ørkenen ikke skulle spre seg. Men trærne har også hatt en annen, viktig miljøfeffekt, ifølge en ny studie.
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Tom Walsh @tewalsh340.bsky.social · 19/03/2026
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Tom Walsh @tewalsh340.bsky.social · 18/03/2026
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Lene Benedicte @lenebene.bsky.social · 15/03/2026
Ja, da er fru Landmark igang igjen. #ME #pwME #millionsmissing #actionforME #MyalgicE www.forskersonen.no/kronikk-me-m...
forskersonen.no
Det er på tide å si farvel til ME-diagnosen
KRONIKK: ME-diagnosen skader mer enn den hjelper. I dagens debatt fremstilles ME som en klart avgrenset sykdom. Det er den ikke, skriver innsenderen.
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