Even as recently as the period from 2018 to 2023, only 11% of studies of ME/CFS required participants to have PEM.
So we have almost no funding, and what little we do have is wasted studying people who may not even have ME/CFS. No words.
@helsv.bsky.social
Even as recently as the period from 2018 to 2023, only 11% of studies of ME/CFS required participants to have PEM.
So we have almost no funding, and what little we do have is wasted studying people who may not even have ME/CFS. No words.
I just signed the petition urging the Government to invest in research to help those suffering from Long Covid. Will you sign too? you.38degrees.org.uk/petitions/in...
26.03.2025 18:27 — 👍 8 🔁 4 💬 1 📌 0#Covid isn't over and especially #LongCovid isn't over
26.03.2025 18:18 — 👍 6 🔁 2 💬 0 📌 0Lovely to see that my new study with Jing Liu was included among the top 2024 ME publications (out of 300 studies) considered to "provide valuable data that bring us closer to understanding the illness."
mecfsskeptic.com/2024-looking...
This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵
29.01.2025 08:57 — 👍 469 🔁 177 💬 20 📌 5Sleipe AP som lover fastpris på 40øre/kWh bare timer etter SP gikk ut av regjering, som var nettopp pga. uenighet om hvordan våre strømressurser skal forvaltes.
Hvorfor tok det AP tre og et halvt år å komme til den avgjørelsen?
Og; hvorfor holdes løftet som gissel til etter det kommende valget?
Here, Prof. Rob Wüst et al. is giving Wyller, Garner, Chalder et al. a brilliant lesson in basic scientific methods and Post Exertional Malaise, PEM in ME/CFS and Long Covid.
doi.org/10.1038/s414...
Jeg likte spesielt godt avsnittet "Immun mot kritikk
MBRT har en iboende svakhet: Den er selvimmuniserende mot kritikk. (...)"
Hvis behandlingen ikke virker, er det altså pasientens feil. Lyder veldig kjent...
Dette skal altså prakkes på ME- og long covid-pasienter:
www.psykologtidsskriftet.no/artikkel/202...
Skrattler
26.03.2025 08:24 — 👍 0 🔁 0 💬 0 📌 0A Blue Whale’s anus can stretch over a meter wide, making it the second largest asshole on the planet.
01.03.2025 22:32 — 👍 20 🔁 4 💬 4 📌 1They feed on fear and anger.
10.03.2025 14:26 — 👍 6 🔁 1 💬 0 📌 0Staten er anmeldt for diskriminering av ME-syke melivet.com/2025/03/13/s...
13.03.2025 16:41 — 👍 32 🔁 10 💬 2 📌 2Forsker Arne Søraas:
– Det er god grunn til å prøve å begrense smitte. Den norske policyen i dag gir folk få muligheter til å beskytte seg.
www.legeforeningen.no/nyheter/2025...
En pressemelding fra Folkehelseinstituttet melder om dødelighet tilbake til nivået før pandemien. Men stemmer dette?
Forsker @raubreywhite.bsky.social har kikket nærmere på tallene:
www.rwhite.no/post/2025-03...
1/2
- The Norwegian Institute of Public Health’s positive press release seems to be based primarily upon a shift in the baseline, rather than a true reduction in mortality. This is concerning, as it may lead to a false sense of security.
2/2
Remember when Kennedy promised to study long COVID during his Senate confirmation hearing?
I do.
This is despicable and a betrayal of millions of Americans suffering long COVID—especially as we do nothing to prevent infection.
🎥 Missed our Long COVID Awareness Week Symposium? Catch the full replay here: https://vist.ly/3mx9fyd. Hear from experts and real-life experiences. Let's keep spreading awareness! 🎥
14.03.2025 04:59 — 👍 10 🔁 4 💬 0 📌 1Thank you @helenpidd.bsky.social for talking about #LongCovid and how many meet the criteria for #MECFS. George Monbiot called the treatment of #MECFS the 'greatest medical scandal of the 21st century', it would be great if you could interview him for an episode of Today in Focus.
25.03.2025 18:20 — 👍 15 🔁 4 💬 1 📌 0From 2010 to 2016 (latest data I have ), NIH research contributed to EVERY drug approved by the FDA
22.03.2025 10:44 — 👍 32224 🔁 8546 💬 712 📌 294On Tuesday, @davidjoffe64.bsky.social and I spoke at the Kirby Institute at the University of New South Wales. David spoke about the biology and economic burden of Long Covid and the enormous economic and societal burden. I spoke about crap research on ME/CFS and LC. virology.ws/2025/03/20/t...
20.03.2025 12:05 — 👍 58 🔁 15 💬 3 📌 0Selv frykter jeg en Frp/Høyre regjering som raserer offentlig helsetjeneste, gjeninnfører karensår så alle som blir alvorlig syke må gå uten inntekt helt år, og generelt gjør alt de kan for å tyne, piske og skamlegge kronisk syke og funksjonshemmede.
22.03.2025 08:45 — 👍 67 🔁 19 💬 3 📌 1Hvis du ønsker deg litt solskinn og håp, anbefaler jeg å abonnere på @annafryxelius.bsky.social sitt nyhetsbrev. Det kommer maks en gang i uka og holder deg oppdatert på den nyeste smerteforskningen. Hun deler også tips, triks og øvelser som gjør det enklere å leve med kronisk sykdom og smerter 🌈💜❤️
22.03.2025 11:39 — 👍 20 🔁 7 💬 1 📌 0Anna, a white woman with short pink hair sitting in a manual purple wheelchair, is holding up a home made cardboard sign that reads: I am here with the confidence of a cis white man with a podcast! In the background are milling people at a womens day parade in central Oslo
Å møte opp på store arrangementer som synlig funksjonshemmet er en kalddusj. Folk behandler meg ikke på noen måte som likeverdig. De fleste snakker ned til meg eller unngår blikkontakt. Andre politikere bruker meg kansje som ‘prop’ for en selfie, så går de videre.
Da passer dette skiltet bra…
In 2018, I spent a bit of time with the heroic Alem Matthees in Perth, whose incredible effort to liberate the PACE trial data from the clutches of QMUL was successful--but was followed by a collapse in his health. virology.ws/2025/03/22/t...
22.03.2025 05:24 — 👍 49 🔁 10 💬 1 📌 1Apropos aktiv dødshjelp.
(Sarkasme)
Hvorfor det psykosomatiske synet på ME ikke stemmer med gjeldende evidens og skader pasientene.
www.mdpi.com/1648-9144/60...
Ja. Dette innlegget legger viktig faglig fundament for debatten:
www.aftenposten.no/meninger/kro...