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

Arfmeister said:
Patients from Norway have created a petition to encourage the government to provide funding for the Daratumumab study and to strengthen future biomedical research efforts in ME CFS.
(saw and copied post X from @ME/CFS Science Blog )

You can sign the petition here:
c.org

Sign the Petition

Call for Funding a New Clinical Study on Daratumumab for ME/CFS
c.org c.org
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Thank you to the creator for sticking to the facts in the petition. It makes it a lot easier to sign!
 
V.R.T. said:
It's bizarre to me that they don't see this. Ditto the UK and SequenceMEs potentially.
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Is there any way we can better make the case for this kind of funding to those in power? I know people are trying and I'm not disparaging their efforts. It just seems like we need a breakthrough to convince them to fund a breakthrough, which is a catch-22 if ever there was one.
 
For what its worth with the simple fact the ME community seems to really be the most “out” in the UK. Like that seems the country with the most awareness.

I have had lots of influence from the UK over the past couple years. I mean I spend time here where a large chunk of people are from the UK similarly my bsky feed is full of UK people ahah.

So there definitely is a thing to the “influence” that could be “bought” by being a leader in ME.

I’ve noticed that I’m engaging more in german than I would usually simply because there is a large germanophone activist community.

(Meanwhile in French my native language there doesn’t seem to be much comparatively).
 
Can’t find the link to the fb post, but the ME Fund (Norwegian MEA) said they will give an update at the start of next year with regards to the funding situation for ResetME. It’s not fully funded yet, but it’s the indicate it’s on track.
 
Utsikt said:
Can’t find the link to the fb post, but the ME Fund (Norwegian MEA) said they will give an update at the start of next year with regards to the funding situation for ResetME. It’s not fully funded yet, but it’s the indicate it’s on track.
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This fundraiser https://innsamling360.no/innsamling/vis/195?pk=195&pane=2 has met its target, but like you said it's unclear how much they still need.

Did you mean the post from 5 days ago? https://m.facebook.com/61579371603061/
 
There will be an update on funding next month.

They have lots of applicants, so hopefully they manage to recruit enough. This is the last study I’d expect to struggle with recruitment, it’s very popular in Norway and promoted far and wide.

They have already started the injections for the first participants, but I haven’t seen any updated with regards to the finish date.
 
Apart from ME associations the trial page also notes some more specific private donors:
  • The legacy of Torstein Hereid
  • Bjørn Rune Gjelsten (private donation)
  • Careless by Sara Emilie Tandberg (an ME/CFS patient and influencer)
Credits to them and many thanks if you ever end up reading this!
 
Utsikt said:
There will be an update on funding next month.

They have lots of applicants, so hopefully they manage to recruit enough. This is the last study I’d expect to struggle with recruitment, it’s very popular in Norway and promoted far and wide.

They have already started the injections for the first participants, but I haven’t seen any updated with regards to the finish date.
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I'll be glad to see the funding update, and I know they were flooded with applicants and had started the injections for the first few, but I think the big update that everyone will want, on top of the funding update, is a timeline update. I hope someone who is in touch with the team would be able to encourage them to give one.
 
Do we think the timeline will change much? I think I'd assumed it wouldn't. Even if they started out with full funding, they'd still be likely to do the treatments in successive smallish groups due to the usual staffing and logistical constraints in clinical settings.

ETA: Obviously I don't know! It is just an assumption.
 
Kitty said:
Do we think the timeline will change much? I think I'd assumed it wouldn't. Even if they started out with full funding, they'd still be likely to do the treatments in successive smallish groups due to the usual staffing and logistical constraints in clinical settings.

ETA: Obviously I don't know! It is just an assumption.
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I agree we just don't know, but I hope that they'd be in a better position to give a timeline estimate than they were a few months ago.
 
Sasha said:
I agree we just don't know, but I hope that they'd be in a better position to give a timeline estimate than they were a few months ago.
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Yes, they might have a better idea on the procedural bits, e.g. how many weeks need to be added to the 72-week treatment phase if they are staging the cohort. I imagine that'll depend on how long the gap is between each treatment group.

It must be harder to predict how the data analysis will go. It depends on how those treated respond, what questions the results raise, and what issues they encounter trying to answer them.

Anyway I can't even think 72 hours ahead, let alone 72 weeks, so I've employed my usual tactic of putting it in a drawer. When something happens I expect I'll get to hear about it.
 
Kitty said:
It must be harder to predict how the data analysis will go. It depends on how those treated respond, what questions the results raise, and what issues they encounter trying to answer them.
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I’ve never run a trial, but I always thought the post-trial analysis would be the easy part. Especially when just looking at outcomes of efficacy. I’m assuming most of the data processing is planned ahead, even though the interpretation might throw some curveballs at you.
 
Utsikt said:
I always thought the post-trial analysis would be the easy part.
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It depends what it finds, I guess!

If you get unclear, apparently contradictory, or unexpected data, you might want to look into it before publication—even if you could already say whether the trial had mets its primary endpoints. Or there might be events during the treatment phase that need exploration or reporting on.

All I'm saying is that there's potential for delays, and sometimes they're hard to anticipate. On the other hand, some trials probably run on rails from Day 1.
 
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