Open Norway: Plasma cell aimed treatment with daratumumab in ME/CFS (ResetME) - Haukeland University Hospital

Venicequeenf said:
That’s just THE dream. But i want to know how the other 5 are, too
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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.
 
V.R.T. said:
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.
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Amongst the original 10 participants, did they use different doses?
 
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.
 
Utsikt said:
They are also said that they are collecting blood samples for future studies, as well as doing «physical tests».
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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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An uplifting article about Renate Øvreseth who used to have severe ME and is now bak to a normal active life after treatment with Daratumumab. She is nicknamed "The hope".

There is also an interview with professor emeritus Olav Mella. When asked if they were surprised by the results of the pilot study he answers not really, due to what they believe are the causes of the illness. But that ten patients are few and perhaps they were lucky with the selection.

Then there's some information about the ongoing study with 66 participants.

Each injection costs 60 000 NOK/4664 GBP/6149 USD.
The pharmaceutical manufacturer Janssen does not give discount for the trial and the government doesn't fund any of the study. So far it's been paid for by fundraising among patients, and there is still need of more money.

The article is paywalled

https://www.bt.no/btmagasinet/i/7pV...-renate-oevreseth-tilbake-paa-jobb-og-trening
 
She's the one we saw on TikTok. She was somewhere between severe and moderate. Okay, great for her, but we all know several people through social media who tried the Fluge and Mella protocol on their own. No results for two men and one woman, all severe. What can we conclude from this?
 
ryanc97 said:
You can conclude that there is at least one full remission case from Dara, which is one more than any other treatment in the world has, except for Cyclophosphamide
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Did she really have MECFS? It's crazy that it cured her when three confirmed cases of severe MECFS that I've spoken to saw no improvement with Daratumumab (they followed the protocol meticulously). This disease is strange. The wait for the study results is endless... 2028/2029... my god.
 
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