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

SHARE NORWEGIAN FUNDING CAMPAIGN INTERNATIONALLY

I’m gonna be a bit harsh here, but it’s now be en just a quite an amateurish work to upgrade it to some kind of English accessible site.

Firstly, I’m a buff for marketing campaign, so I’m pretty picky on it - also because they work in this day and age (Insta, Twitter, etc)

IF they really want to get in the required, millions of funding in 2025 or even in a few months, they should just do a much better effort in revamping the website. It won’t cost that much time by a young Designer

1) just make an 1) English and a 2) Norwegian version. (it’s just a mixed up now)

2) make the imaging a bit bigger
- and if possible, put that little Insta video of the Norwegian Dara recovered patient on the page

3) as it is of now, I wouldn’t put it on my social media because it’s a bit of mishmash

4) the good thing is the payment of possibilities are expanded and now open for international transfers


PLEASE: if someone is willing to reach out to one of the organizers and get one of their young cousins involved to make it a bit fancy
- this campaign can roll of better than any OMF campaign



www.me-foreningen.no

English The ME-fund

ME-fondet is a Norwegian non-profit foundation dedicated to supporting biomedical research on Myalgic Encephalomyelitis (ME/CFS). We raise funds for high-quality, independent studies that seek to uncover the underlying mechanisms of this severe disease and bring hope for better treatments.
www.me-foreningen.no www.me-foreningen.no

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Look, they should be cooperating with this Swedish / Norwegian (?) guy who is doing a proper social media campaign on Dara.
- the recovered Norwegian Girl is in the video and she does a very good job explaining how much her life changed because of the treatment.

Or at least ask if they can embed the video on their page

GO FUNDING

 
I agree with the language context @Arfmeister, but I would be very strongly against what you proposed in terms of using stories of recovered people as advertisement. I hope no serious scientists would think of that as suitable. I also think that focusing on very specific stories has the downside of possible influencing trial and patient population behaviour without any genuine upsides. Unfortunately, this has already been witnessed in the Long-Covid field. It might seem a bit harsh and contradictory to the merits of a RCT at first but there's probably a population you'd prefer to reach for a RCT and a population you'd prefer not too.
 
Arfmeister said:
Look, they should be cooperating with this Swedish / Norwegian (?) guy who is doing a proper social media campaign on Dara.
- the recovered Norwegian Girl is in the video and she does a very good job explaining how much her life changed because of the treatment.

Or at least ask if they can embed the video on their page

GO FUNDING

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I couldn't let that video continue as the music was so loud and distracting from the speech.
 
Oh dear, I made a mistake in my letter. I attributed the project matt video to the ME fund.

No reply so far. Hope that wasn't a factor.

I would be uncomfortable with a fundraising campaign promoting a trial using that sort of video without also putting forward serious caveats that the video does not about the lack of blinding, the fact several pateints did not respond, we can't know for sure she got better from the drug yet etc etc.

I didn't mention that in the letter though, just mentioned the pilot results gave me hope, as did watching that video.

Are there really the 'wrong sort' of trial participants? I am sure everyone who takes part in phase 2 will hope they a) get the drug and b) respond. Does that mean the kind who might share their progress on socials before unblinding?
 
V.R.T. said:
I would be uncomfortable with a fundraising campaign promoting a trial using that sort of video
Click to expand...

As someone with ME/CFS and autism I don't really want any video! Ideally I don't want photos either, they just make the important bits more difficult to read.

The simpler it is, the more accessible it is to the greatest number of people.

They could usefully update the total raised to encourage people to donate, but that's the only comment I'd have.
 
V.R.T. said:
This seems like such a no brainer to me, I feel like any organisation serious about helping pwME/LC with NIH or even MRC/NIHR levels of resources would do this as a first port of call. Like 'obviously fast track Dara, and what else can we do?' And yet they're pissing around with GLP-1 and LDN...
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Almost certainly a stupid question - has anyone attempted to make the NIH or the UK funding bodies aware of the dara trial, thinking about it? Like, I am being deliberately naive here but why couldn't they fund it? Or even accelerate it? Apart from inertia and neglect etc.
 
Also, I had an email from Bjorn at the ME fund. Essentially he said they were considering and taking advice on how to approach international fundraising and will follow up soon.

No reply about Khosla, I think we should ask F&M or their team directly about that, and perhaps see what the OMF situation is.

I also now know the soon to be announced new name for the trial;)
 
V.R.T. said:
Almost certainly a stupid question - has anyone attempted to make the NIH or the UK funding bodies aware of the dara trial, thinking about it? Like, I am being deliberately naive here but why couldn't they fund it? Or even accelerate it? Apart from inertia and neglect etc.
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I'd been wondering that - but their website suggests they only fund international collaborations with the UK.
 
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