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

[ryanc97]

That and the very minor difference in IGG drop between responders and non responders.

And the lack of correlation between NK cell count and IGG drop.

That is evidence against an antibody theory for sure.

Strange stuff

 

[V.R.T.]

The email is half drafted but I've been rather crashed this weekend so it's going to take a little longer unfortunately.

 

[Arfmeister]

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

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

 

[Arfmeister]

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

 

[EndME]

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.

 

[MeSci]

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 couldn't let that video continue as the music was so loud and distracting from the speech.

 

[Utsikt]

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.

You might have missed it, but this was something they got up within hours of someone here reaching out to them.

 

[V.R.T.]

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?

 

[OrganicChilli]

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

The fund director only works 1 day a week I think. Either Thursday or Friday

 

[Kitty]

I would be uncomfortable with a fundraising campaign promoting a trial using that sort of video

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.

 

[Utsikt]

Yup. Marketing design is very rarely accessible design. It’s often the complete opposite..

 

[OrganicChilli]

A spoiler re marketing: they will soon announce a new name for the study

 

[Utsikt]

DaME?

(Dame means woman in Norwegian)

 

[V.R.T.]

A spoiler re marketing: they will soon announce a new name for the study

I can't tell if this is a joke I've missed but if it isn't- what kind of name and to what end? Like an all caps acronym name like e.g. REJUVINATE?

 

[OrganicChilli]

Not a joke haha. I got another email. But I can't tell you. I'll let them announce it.

DaME?

(Dame means woman in Norwegian)

I can't tell if this is a joke I've missed but if it isn't- what kind of name and to what end? Like an all caps acronym name like e.g. REJUVINATE?

Can neither confirm nor deny

 

[V.R.T.]

I would really like to know if F&M have secured any more large donor funding. Do you think it will be announced if/when they do? Or only when the trial is fully funded if we get to that point.

 

[OrganicChilli]

I would really like to know if F&M have secured any more large donor funding. Do you think it will be announced if/when they do? Or only when the trial is fully funded if we get to that point.

Oh, I really don't know. Maybe you can ask in your next email. They're all very nice

 

[Kitty]

Do you think it will be announced if/when they do?

I'd be really surprised if they didn't.

But funding from organisations often requires agreements to be checked and signed, so even where it's agreed in principle and everyone expects it to go ahead there can be a hiatus before it's announced publicly.