Venicequeenf
Established Member
Renate is fine, no symptoms anymore
Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital
- Thread starter Kalliope
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- cd38 daratumumab norway resetme
V.R.T.
Senior Member (Voting Rights)
Do you know this from social media posts? I haven't heard anything since the video that was put out for that fundraiser last year.
Venicequeenf
Established Member
I commented a post on her facebook page and she replied immediately
V.R.T.
Senior Member (Voting Rights)
Oh cool! That's great to hear. Good for her!
Venicequeenf
Established Member
That’s just THE dream. But i want to know how the other 5 are, too
V.R.T.
Senior Member (Voting Rights)
There's one that was retreated with a lower dose recently after partially relapsing and this person improved a bit but it didn't last as long (they think cos of the lower dose).
Iirc I think they're retreating others with the full dose so perhaps they've partially relapsed too.
Venicequeenf
Established Member
Amongst the original 10 participants, did they use different doses?
V.R.T.
Senior Member (Voting Rights)
Im pretty certain it was the same dose for everyone.
Venicequeenf
Established Member
But it was considered lower than what they are planning to use in the new trial, right? Or did i pick up that info incorrectly?
V.R.T.
Senior Member (Voting Rights)
They used a higher dose in the pilot, and in the phase 2 they will use that same higher dose.
The lower dose was given to 5 patients recently - 4 long covid patient and one person from the pilot who had relapsed iirc.
I noticed that https://euclinicaltrials.eu/ctis-public/view/2024-520094-13-00?lang=en seemingly provides more details than https://clinicaltrials.eu/trial/stu...c-encephalomyelitis-chronic-fatigue-syndrome/ and for example includes updates to the study protocol which I couldn't find on the other site.
OrganicChilli
Senior Member (Voting Rights)
NOK 3m/GBP 232k/USD 311k left until ResetME is fully funded according to their latest Facebook post.
Facebook
www.facebook.com
It seems as if they have already raised almost one third of the remaining amount: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/
www.facebook.com
It seems as if they have already raised almost one third of the remaining amount: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/
Utsikt
Senior Member (Voting Rights)
In a thank you letter for one of the recent crowdfunding donations, the team said that 50 % of the participants have been «included», and they are working on the rest «throughout the spring and summer».
They are also said that they are collecting blood samples for future studies, as well as doing «physical tests».
Perhaps the latter is the thumb exercise jig they started doing in 2024 - if so they might end up with pre- and post-cure data if Dara works, but that’s just me speculating wildly.
They are also said that they are collecting blood samples for future studies, as well as doing «physical tests».
Perhaps the latter is the thumb exercise jig they started doing in 2024 - if so they might end up with pre- and post-cure data if Dara works, but that’s just me speculating wildly.
There is quite a reasonable bit of information on the clinical trial in the protocol (which can be found in the link I shared). Where they also say which samples will go to the biobank ect. I would suspect the physical test would refer to what they also specify as physical test in the protocol, namely measuring Peripheral vein pressure during exertion, Thenar exertion (the thumb jig thing), Hand grip test etc.
I don't know if the protocol has been widely circulated or whether that is wanted, maybe it is not. But could maybe be added to the front of this thread. Done
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