Norwegian Fluge & Mella daratumumab Haukeland trial 'ResetME' now accepting international donations

Yeah, we have 1.15M here and 4M here. Maybe they have received a huge donation over the past few weeks, but it seems unlikely.

I mean, they do say that the study is funded by patients and patient organisations, so maybe a patient org has stepped up and done the right thing. But it could be the ME funds original 4 million NOK.

I really hope it's true but I'm not counting my chickens until it's confirmed.
 
Multiple people that should be in the know confirms in an (essentially public) fb group that the numbers are correct. Turns out that they only needed 8M NOK more when the study was announced.

I can’t find any public info about it before today, so it seem like there has been a lack of clarity in the communication and/or a misunderstanding by me and others about what they meant.

This presumably means that they’ve raised 2.5M NOK in a few months.

I don’t know where the initial 18M NOK came from, other than the 4M NOK from the ME-fund.

Regardless, the bottom line and good news is that they’ve almost secured all of the required funding!
 
Multiple people that should be in the know confirms in an (essentially public) fb group that the numbers are correct. Turns out that they only needed 8M NOK more when the study was announced.

I can’t find any public info about it before today, so it seem like there has been a lack of clarity in the communication and/or a misunderstanding by me and others about what they meant.

This presumably means that they’ve raised 2.5M NOK in a few months.

I don’t know where the initial 18M NOK came from, other than the 4M NOK from the ME-fund.

Regardless, the bottom line and good news is that they’ve almost secured all of the required funding!
This is an amazing reversal of fortune from where I thought we were! I thought we were looking at the trial eventually failing or taking forever while we all lay suffering on our beds/sofas. I hope this massive influx of cash means that the trial can speed up! Would be great to have a timeline update.
 
This is an amazing reversal of fortune from where I thought we were! I thought we were looking at the trial eventually failing or taking forever while we all lay suffering on our beds/sofas. I hope this massive influx of cash means that the trial can speed up! Would be great to have a timeline update.
There is no massive influx of cash from F&M’s perspective (they knew this when they communicated the timelines), so I don’t know if we can expect the timeline to change much based on this info.

The only change is that we can be much more certain that the study will get sufficient funding without too much delay.
 
In a paywalled article today about the study, the researchers Kari Sørland and Øystein Fluge say that the study so far is paid entirely by patients/privat persons and patient associations. They are now lacking 5.5 million NOK.

5.5 million NOK is 553 294 USD - 470 967 EUR - 410 606 GBP (unless I've messed up with the numbers..)

Fluge says: We're not saying that we have the truth, but we hope and believe that we are on the way to some answers.

Sørland says: ME affects many people, and many of them are young. We therefore believe that it is good social economics to research the disease and would like to see us receive public funding.

300 people have applied to participate in the study. The article includes an interview with one of the participants who will receive her first injection September 30th.
The article has been shared in full by an online news site so is available for everyone to read:


google translation:
 
I'm planning a sponsored cycle to raise funds for this trial - like I did back in 2016 for the Rituximab trial. Back then Invest in ME were able to channel my fund raising this way.

Are there any UK ME charities working with the Norwegian foundation? That would be able to pass on funds raised to them? Just Giving does not allow me to set up my page for a non-UK charity / foundation.

Anyone know a way through this?

Thanks, Joan
 
I'm planning a sponsored cycle to raise funds for this trial - like I did back in 2016 for the Rituximab trial. Back then Invest in ME were able to channel my fund raising this way.

Are there any UK ME charities working with the Norwegian foundation? That would be able to pass on funds raised to them? Just Giving does not allow me to set up my page for a non-UK charity / foundation.

Anyone know a way through this?

Thanks, Joan
That’s very kind!

In cases it’s needed:

Leader of the ME-fund (by the Norwegian ME Association): Bjørn K Getz Wold – bkw@ssb.no

Study coordinator: Kari Sørland, kari.sorland@helse-bergen.no
 


Encouraging updates about the Norwegian daratumumab trial - - Trial is 80% funded, still fundraising for the remaining $500k- First participant will receive the drug next week! - 300 people have applied for the study's 66 spots
 
On that note, wonder if it’s possible to get them to take Vit D levels. Because Vit D levels correlated with response in Rituximab.

Presumably because Vit D is very important to NK cell function and count.

Might provide an additional datapoint. To refute or support the ADCC hypothesis.

 
@Utsikt (or any Norwegian person!) - Are ME-Fondet and the Norwegian ME Association the same thing, or is one part of the other? Someone has asked me and I don't know.
ME-Fondet is part of the Norwegian ME Association, it was originally a one-of thing but has since been used for further campaigns.

They have a short "About us" page on the ME Association's site: https://www.me-foreningen.no/om-oss/stott-me-foreningen/me-fondet/innsamling-om-innsamlingen/ (in Norwegian).
 
Hello, I completed a similar fundraiser in 2016 raising funds for the Rituximab trial. Now that there is this promising clinical trial underway in Norway, it only seemed fitting for me to get on my bicycle again to raise awareness of the ResetME trial and fundraise.

Please do support me if you can. I'm aware many people with ME live with incredibly tight budgets so I am hoping you can support me by sharing on into your networks.

Information in the link below. It'll be updated in coming days as the ResetME team are redesigning their website and information into English.

Lots of love Joan x

 
Hello, I completed a similar fundraiser in 2016 raising funds for the Rituximab trial. Now that there is this promising clinical trial underway in Norway, it only seemed fitting for me to get on my bicycle again to raise awareness of the ResetME trial and fundraise.

Please do support me if you can. I'm aware many people with ME live with incredibly tight budgets so I am hoping you can support me by sharing on into your networks.

Information in the link below. It'll be updated in coming days as the ResetME team are redesigning their website and information into English.

Lots of love Joan x

I've just donated, and I'm planning to spend a day sharing info about the trial on all my networks!
Once I've got over this nasty flu.
 
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