ME/CFS and Long Covid - Digging Deeper 7-8 May 2025 | Stavanger | Norway

This is posted under the Scandinavia thread but am posting as a stand alone as the registration deadline is approaching.

https://www.mekonferanse.no/en/

We know people who are attending, correct? @Kalliope @Marky Are they attending both the May 7 day session and the May 8 night session?

I am really hoping that Oystein Fluge will release some more data from their Daratumumab trial. If anyone is attending and there is an opportunity to ask questions on Fluge’s talks, I have a couple of questions.

1) How did they come up with the Daratumumab dosing schedule (4 SC injections spaced 2 weeks apart)?

2) Does he think the Daratumumab injections are a cure or will the injections need to repeated again periodically?

3) What are his thoughts about treating patients with high baseline IGG levels?

They will release the May 8th talks as YouTube videos. Can anyone potentially record Fluge’s talk on May 7th, if allowed?

Takk

 

Thanks for making a thread on this, @Jaybee00
Unfortunately I'm not able to attend, but I'm sure we'll hear about it if exciting news are shared at the conference.

The first day is for health care workers and not to be recorded. As you say the evening conference next day is for everyone and the talks will be recorded and made available.

 

Do we know why it won’t be recorded?

 

Another question for Fluge—why does your phase 2 study only have 10 patients?

 

Thread here: https://www.s4me.info/threads/norwa...o-severe-chronic-fatigue-syndrome-2025.43715/

 

Today is the conference for health care workers. One of the speakers, professor Brian Hughes has shared some pictures and updates on Bluesky

https://bsky.app/profile/bmhughes.bsky.social/post/3lokrwvssas2r

 

Do we know anyone else there who might have more info Fluge’s presentation?

Thanks

 

Update from the hosts: 232 participants today, with at least 50 doctors.

 

From an email:


Thank you for you email and interest in the conference. Unfortunately there won't be a livestream from the conference. But all the talks from the evening conference will be filmed and made available for everyone afterwards.

Best wishes,
Astrid Meyer-Knutsen

 

Just saw a SoMe post from one of the participants - there are beds at the back of the room for patients to lie in if they need it.

A lovely thing to do - and hopefully a powerful visual impression for the people attending the conference!

 

Any updates from today's session?

 

https://twitter.com/user/status/1920542836837032182


ME/CFS and Long Covid - Digging Deeper - in Norwegen, sehr guter Austausch mit Brian Hughes, Oystein Fluge, Kristian Sommerfelt, @kjtronstad, @RobWust, David Systrom, @PutrinoLab. Am Montag geht es weiter auf der International MECFS conference in Berlin mit Livestream.

ME/CFS and Long Covid - Digging Deeper - in Norway, a great discussion with Brian Hughes, Oystein Fluge, Kristian Sommerfelt, @kjtronstad, @RobWust, David Systrom, and @PutrinoLab. The discussion continues on Monday at the International MECFS conference in Berlin with a livestream.

 

Any more info from this meeting re Fluge’s talk?—I thought some of the folks here knew people who attended
@Kalliope @sneyz @Marky

Thanks

 

A local newspaper wrote that they are waiting on approval for their next trial and that it might come this month. It is planned to be 66 participants, including 22 placebo. At least double blinded, but I’m assuming they’ll do what they did with cyclo?

I have not seen any more about their presentation yet.

 

Actually, I just noticed that the article included a partial image of a new slide:


From an FB post in Norwegian:
https://www.facebook.com/share/p/16F27m4wL7/?mibextid=wwXIfr