Kathrin Storheil

2006:: #ME turned my life upside down. Fighting for human rights. Hoping to regain my health. Biomedical research #myalgicencephalomyelitis

[Kathrin Storheil @_kathrin_s]

@journalisten Grav! Her er det 50 år med grums å grave i. Hvorfor lyver forskere og andre med posisjoner? Kamp om def makt kanskje? Hvorfor deltar ikke Oslo konsortiet på internasjonale ME konferanser sammen med alle andre? Hvorfor har de blitt som en -skal vi våge å si det høyt; sekt?

[Sissel Sunde 🇳🇴 @Sissel777]

Bra tråd. Verden har oppdaget bindingen mellom Recovery Norge og LP mm.

[UniteToFight @U2Fight_World]

Finally! We are live ! Now it’s your turn! ✅🚀

Our landing page is live and you can register yourself as a listener for #UniteToFight2024 - the biggest global online conference for #LongCovid and #MECFS. 18 hours, 2 days. 100% community-driven.

But equally important is to share it with those people, who are needed to get more awareness and more action from.

Politicians, pharmaceutical executives, investors, journalists, GPs, specialists and so on.

Spread the word and share the landing page. The momentum is now ! Let’s use it! 🔥🔥🔥

[Kris007Tine @kris007tine]

@Prebens @Folkehelseinst og spesielt Signe Flottorp, sørget for å fjerne hindringer sånn at Live Landmark kunne lure til seg en Offentlig sektor-phd, hvitvaske sin egen millionbusiness, og sende x-kroner per kursdeltager til den klarsynte Phil Parker. Heia helse og forsknings Norge.

[Gunhild Alvik Nyborg, MD, PhD, Exam. Oecon., FRSM @GANyborg]

@Prebens Interessekonflikt: Skribenten, som ikke er utdannet helsepersonell, har over mange år tjent mange millioner som instruktør i kurs som fremmer de hypotesene hun fremmer i artikkelen.
Ikke helt irrelevant.

[Julie Rehmeyer @julierehmeyer]

It’s both gratifying and overwhelming to see this rage from a leading researcher. Living with this rage for years, for decades, and being able to do so much less than I want to to fix it because I’m sick… it’s so hard to hold. Thank you, @PutrinoLab, for holding it with us.

[Herberto Dhanis, PhD @HerbertoDhanis]

If you think my recent thread is aggressive I urge you to imagine how you'd feel if someone was psychologising an established disease (cancer, PD, etc). Now imagine you have it and it destroyed your life. Finally imagine they won for decades and behave like this in closed doors:

[Psykologisk.no @Psykno]

«Det er synd at de i Oslo-konsortiet ikke hører mer på det store flertallet av ME-pasientene som de hevder å ville hjelpe», skriver innleggsforfatterne.

https://t.co/lqj72Hx62G

[WesElyMD @WesElyMD]

@PhillyPhile215 So many thoughts. Too much for Twitter. But yes we have to use these past five years of experience in learning, most importantly, to listen to our patients better. You are the experts of your own illness!

[WesElyMD @WesElyMD]

1/🧵 Post-Infectious Syndromes

…a Doctor’s admission

📌 I didn’t think #MECFS was real till #LongCOVID opened my eyes
📌 It’s “mysterious” & we weren’t taught it in med school
📌 Yet 1,000s are suffering a disease traditional medicine doesn’t understand
 📌 Let’s find answers

[Peter Tennant has moved to Bluesky @PWGTennant]

Tips for success in #academia:

* Don't aim for perfect. Or good. Or accurate. Just publish
* Don't do what you think matters, do what gets funded
* Don't be interdisciplinary
* Don't criticise anyone's work, even if it's baaad
* Don't be a woman, or black, or (worst of all) both

[Adrian @mradrianen]

ME og ME-debatten er egentlig enkel å forstå.

Forstår du hva PEM (Post-Exertional Malaise)/anstrengelsesutløst sykdomsforverrelse er så forstår du nesten alt.

En liten 🧵: 1/8

[Gunhild Alvik Nyborg, MD, PhD, Exam. Oecon., FRSM @GANyborg]

Fra prof. Tronstad, UiB
"Både de reviderte NICE-anbefalingene for klinisk oppfølging, og den oppdaterte sykdomsforståelsen de signaliserer, må vurderes som klare fremskritt for ME-feltet. Dette bør også norske helsemyndigheter ta til etterretning" https://t.co/B6XdIKZMAI

[Kathrin Storheil @_kathrin_s]

This is how integrity looks like.
I hope your story will go worldwide @CoyneoftheRealm

[James C.Coyne @CoyneoftheRealm]

I once considered Wessely and Sharpe friendly and I still owe Michael Sharpe a couple bottles of wine. We stopped being friendly when I declared myself an ally of people with #MECFS. My training is first as a scientist who observes and modifies his views when evidence does not fit. I saw the damage that was done when I shifted my referral source to rheumatology.

[Kathrin Storheil @_kathrin_s]

@CoyneoftheRealm A big YES. Maybe @davidtuller1 have some clever guidance? You two would have a couple of things to «chat about» -if you havent already.

[James C.Coyne @CoyneoftheRealm]

As a researcher-clinician I am no longer shocked by professionals’ indifference to the poor quality evidence for the treatments they use,

[ME/CFS Medical Education Campaign UK @MECFS_Med_Ed]

We are alarmed and saddened that the prestigious British Medical Journal has chosen to give space to harmful misinformation about ME/CFS.
#MedTwitter #MyalgicEncephalomyelitis #pwME @bmj_latest https://t.co/jkjdfaD0Ze

[Sissel Sunde 🇳🇴 @Sissel777]

@SFlottorp Prof. Brian Hughes: "The cries for help are getting louder. And that’s a good sign"

"Please, nobody help them."
@Folkehelseinst @helse_og_omsorg @Helsedir

https://t.co/KXHRXcUVKK

[Kathrin Storheil @_kathrin_s]

@ViccieLeaks @AvisenKhrono Fyttirakkern!
Det er så stygt gjort.