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

OrganicChilli said:
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.
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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!
 
Utsikt said:
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!
Click to expand...
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.
 
Sasha said:
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.
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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.
 
Kalliope said:
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.
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The article has been shared in full by an online news site so is available for everyone to read:

www.nettavisen.no

Vilde ble ufør som 25-åring

Nå er Vilde (33) med i ny ME-studie på Haukeland. – Det gir meg håp.
www.nettavisen.no www.nettavisen.no

google translation:
www-nettavisen-no.translate.goog

Vilde ble ufør som 25-åring

Nå er Vilde (33) med i ny ME-studie på Haukeland. – Det gir meg håp.
www-nettavisen-no.translate.goog www-nettavisen-no.translate.goog
 
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
 
Joan Crawford said:
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
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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
 
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.

Vitamin D deficiency and supplementation in patients with aggressive B‐cell lymphomas treated with immunochemotherapy - PMC

Vitamin D deficiency has been reported to be a negative prognostic factor in elderly patients with aggressive B‐cell lymphomas. In vitro data suggest that vitamin D supplementation may enhance rituximab‐mediated cytotoxicity. We prospectively ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov
 
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