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

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The framework of thinking about mechanisms is shifting about quite a bit at the moment. I have always respected the Norwegians' commitment and rigour but been uncertain about the justification for pursuing daratumumab. My thought now is that this is a key avenue to explore and I would strongly recommend supporting their work.
 
Jonathan Edwards said:
The framework of thinking about mechanisms is shifting about quite a bit at the moment. I have always respected the Norwegians' commitment and rigour but been uncertain about the justification for pursuing daratumumab. My thought now is that this is a key avenue to explore and I would strongly recommend supporting their work.
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What has changed your mind? DecodeME?
 
Sasha said:
What has changed your mind? DecodeME?
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Not especially. More than anything the robust discussions we have had here. @ryanc97 was arguing that the daratumumab 'responses' must be real. That is easily rebuffed, but the more I look at those data the more I think the supporting immunology makes them look real. And if I talked to the patients I might also think they could not all be deluded or lucky. Then I started thinking about other ways daratumumab might be working that made the inconsistency of all the trials look less impenetrable.

I think it may be a good example of how in science you should not be too bothered if your first theory was wrong if you start getting results that look worth following up. You turn the block of jigsaw pieces that did fit together upside down and see if that helps. At some point you may find you have a treatment that works well enough that that becomes more important than your theorising. And a bit later with luck you begin to see what is really going on.
 
OrganicChilli said:
New English version: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/english-me-fond/

That was fast! I did not expect such a quick turnaround time. It has links to innsamling360.no and PayPal.
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It's good that they've done this so quickly.

I still intend to email them, this weekend was a busy one for me so hopefully in the next few days.

I think it may be best for someone else to contact them regarding the payments issue as I cannot quite get my head around what I need to say there and how to word it, apart from the fact that vs pwME might need one that accepts fingerprint scans.

I will ask whether they intend any international fundraising drives, and if they have considered or tried to collaborate with OMF or another big org for both tax reasons and the visibility it with bring. (I will also word it better than I have here). I will mention how quickly justice for ME met its initial goal, and perhaps suggest getting some well known faces in the ME community to promote the fundraiser, as with J4ME (I see Tom K has already shared the fundraiser on socials, thank you Tom!).

Should I perhaps link them to this thread and invite them to join the discussion here?
 
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V.R.T. said:
I will ask whether they intend any international fundraising drives, and if they have considered or tried to collaborate with OMF or another big org for both tax reasons and the visibility it with bring.
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If OMF have not introduced them directly to Vinod Khosla, the team in Norway (meaning the researchers themselves) should pitch him directly. Could you suggest this?

He gets emails at VK at khoslaventures dot com. His assistant will respond with a rejection if he is not interested. But this should be a well written pitch / funding appeal with a dollar amount attached (I suggest the entire cost of trial) from Fluge and Mella themselves, I believe. I’m surprised he has not funded them already since surely he already knows of this work.
 
Braganca said:
If OMF have not introduced them directly to Vinod Khosla, the team in Norway (meaning the researchers themselves) should pitch him directly. Could you suggest this?

He gets emails at VK at khoslaventures dot com. His assistant will respond with a rejection if he is not interested. But this should be a well written pitch / funding appeal with a dollar amount attached (I suggest the entire cost of trial) from Fluge and Mella themselves, I believe. I’m surprised he has not funded them already since surely he already knows of this work.
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To clarify I will be emailing the fundraising bloke at the Norwegian ME Association. This sounds like it would be better put to Fluge and Mella directly. I don't know if this guy will be the best person to ask.

It's a good idea but iirc Kholsa has mostly invested in viral persistance studies. Correct me if I'm wrong though. It's definitely worth trying to get F&M to apply.

As I said, it might be better put to Fluge and Mella directly and coming from someone who understands the situation with VK a bit better. And obviously we would need contact info for Fluge and Mella. But I am happy to it after contacting the ME fund guy if there's no one better placed to do it.

Edit: On second thoughts I will suggest it to the fundraising person and if after that we think we should contact F&M directly also, we can do that too.
 
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V.R.T. said:
It's a good idea but iirc Kholsa has mostly invested in viral persistance studies. Correct me if I'm wrong though. It's definitely worth trying to get F&M to apply.
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I know he’s interested in JAK inhibitor studies bc he said so on Twitter a year ago. I don’t think they are specific to viral persistence? I think that would mean he’s interested in funding drug trials.

V.R.T. said:
Edit: On second thoughts I will suggest it to the fundraising person and if after that we think we should contact F&M directly also, we can do that too.
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Ok cool, thanks.
 
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