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

[Utsikt]

Well, it’s already a very small cake of funding.
- from which a big share is taken (stolen) by BPS researchers + some low(er) quality researchers
- F & M - as good as scientist as they are - are scrambling for cake crumbles

F&M have so far been able to get millions of GBP/EUR for their studies. They are scrambling on Dara phase 2 for some unknown reason.

And DecodeME got funded. SequenceME will probably get funded. There aren’t many other worthwhile studies out there..

 

[Arfmeister]

F&M have so far been able to get millions of GBP/EUR for their studies. They are scrambling on Dara phase 2 for some unknown reason.

That’s actually not true.
But let’s leave discussion for another day.

There aren’t many other worthwhile studies out there..

I have a complete opposite view.
- There are a lot of studies that failed to even start.
- Funding is a big problem
Also, the lack of funding strongly limits researchers entering the field.
Chicken and the egg.

 

[OrganicChilli]

Leader of the ME-fund: Bjørn K Getz Wold – bkw@ssb.no

He replied to me and said they will create an English version. Fingers crossed.

 

[Kitty]

Besides, part of the reason for the lack of funding is that the underlying rationale doesn’t hold up. There are some double standards here because BPS studies get funding all the time, but many of the bio-ME/CFS studies probably shouldn’t have been done in their current form.

Yes, this is really important.

As an aside, I do wonder about the funding of some of those BPS studies. Were they the result of competitive grant rounds from agencies like MRC or NIHR, meaning they were genuinely comparable to biomedical projects?

Or were they partly funded by NHS delivery money, or special case funding because the outcomes were politically desirable? (E.g., the Dept for Work & Pensions funding the PACE trial, which is unheard-of in biomedical research.)

 

[Utsikt]

Yes, this is really important.

As an aside, I do wonder about the funding of some of those BPS studies. Were they the result of competitive grant rounds from agencies like MRC or NIHR, meaning they were genuinely comparable to biomedical projects?

Or were they partly funded by NHS delivery money, or special case funding because the outcomes were politically desirable? (E.g., the Dept for Work & Pensions funding the PACE trial, which is unheard-of in biomedical research.)

Good question. I imagine they were desirable, they aligned with the funders’s worldview and/or the funders knew the researchers. At least that’s the impression I get from the outside in Norway, although one should never underestimate incompetence either.

 

[ChronicallyOverIt]

He replied to me and said they will create an English version. Fingers crossed.

Any chance you can ask him if it will be 501(c) in English for tax reasons?

 

[Utsikt]

Any chance you can ask him if it will be 501(c) in English for tax reasons?

According to this, it is a real hassle to get a 501(c) cert for foreign organisations. So I assume they won’t.

This is where OMF could have helped by setting up a US fundraiser. Same with AfME, MEA etc.

Can a foreign nonprofit organization qualify for 501(c)(3) status? - Q&A #161 — Sustainability Education 4 Nonprofits

Charities formed outside of the United States may qualify for 501(c)(3) status so long as they satisfy the requirements that apply to 501(c)(3) organizations under U.S. law. However, donors generally cannot use the charitable deduction under U.S. tax law for contributions made to organizations forme

www.se4nonprofits.com

 

[V.R.T.]

According to this, it is a real hassle to get a 501(c) cert for foreign organisations. So I assume they won’t.

This is where OMF could have helped by setting up a US fundraiser. Same with AfME, MEA etc.

Can a foreign nonprofit organization qualify for 501(c)(3) status? - Q&A #161 — Sustainability Education 4 Nonprofits

Charities formed outside of the United States may qualify for 501(c)(3) status so long as they satisfy the requirements that apply to 501(c)(3) organizations under U.S. law. However, donors generally cannot use the charitable deduction under U.S. tax law for contributions made to organizations forme

www.se4nonprofits.com

Would it be worth seeing if AfME are interested? I would assume they wouldn't want to dilute their fundraising drives for the Edinburgh work but it couldn't hurt to ask as some people on this forum have contacts there. At the very least we might get some advice on the best way to get something like that going.

We also have at least one OMF researcher on here. Perhaps we could ask him if he can put us in touch with someone there?

It's good that the Norwegian MEA will do an English page. Perhaps that would be enough. But if OMF raised funds for it, with their reach it might get funded fairly quickly.

 

[OrganicChilli]

Would it be worth seeing if AfME are interested? I would assume they wouldn't want to dilute their fundraising drives

I'd prefer if AfME focused on Edinburgh projects. But OMF have a fundraiser for a biomarker fishing expedition. They should contribute imo. Or WE&ME and the ME/CFS Research Foundation. Both could probably contribute a significant amount, but all charities want to focus on their own initiatives and I don't know how viable international collaborations are.

 

[V.R.T.]

I'd prefer if AfME focused on Edinburgh projects. But OMF have a fundraiser for a biomarker fishing expedition. They should contribute imo. Or WE&ME and the ME/CFS Research Foundation. Both could probably contribute a significant amount, but all charities want to focus on their own initiatives and I don't know how viable international collaborations are.

Agreed. There is the question of them contributing by digging into their own coffers, and there is the question of them contributing by doing an international fundraising campaign. The latter is likely to only be possible if a pitch by F&M's team is successful. Whereas we might have a shot at persuading one of these charities to do the latter.

I agree that Bioquest is likely to be OMFs priority and I am also a bit skeptical of how successful it is likely to be. But they seem to have many other projects on the go. I don't see why this couldn't be something they fundraise for.

 

[OrganicChilli]

I just found this:

Would you like to collect for the study?
Kenneth Kronstad is a new employee of the Norwegian ME Association in 20 percent, and is responsible for coordinating the work with fundraising for the Daratumumab study. His job will include assisting all those who want to raise money, with information material, sharing in the association's channels and so on.

– We would like to collaborate with anyone who creates their own fundraising campaigns and events, he says.

Kronstad can be reached here: kampanje@me-foreningen.no

This is about individual fundraisers, but he's the go to person in general. I’m not sure how to get other charities interested in collaborating.

Edit: we've been discussing this since June lol https://www.s4me.info/threads/norwa...-university-hospital.44450/page-7#post-618393

 

[V.R.T.]

I just found this:



This is about individual fundraisers, but he's the go to person in general. I’m not sure how to get other charities interested in collaborating.

Edit: we've been discussing this since June lol https://www.s4me.info/threads/norwa...-university-hospital.44450/page-7#post-618393

Thanks for digging that up. I will email him when I find the spoons.

I'll ask if there are plans for more/ campaigns, about the possibility of collaborating with international charities etc.

Can anyone think of anything important I need to add. Brain fog is unreal today.

 

[Utsikt]

Thanks for digging that up. I will email him when I find the spoons.

I'll ask if there are plans for more/ campaigns, about the possibility of collaborating with international charities etc.

Can anyone think of anything important I need to add. Brain fog is unreal today.

I would not bother asking about anything other than international campaigns.

You can be guaranteed that there will be at least one Dara-specific campaign running at all times in Norway, in addition to the continuous ME Fund campaign.

 

[Arfmeister]

Can anyone think of anything important I need to add. Brain fog is unreal today.

Just if there is a good moment / time to start promote campaign for funding on social media ?

 

[OrganicChilli]

Thanks for digging that up. I will email him when I find the spoons.

I'll ask if there are plans for more/ campaigns, about the possibility of collaborating with international charities etc.

Can anyone think of anything important I need to add. Brain fog is unreal today.

Maybe a different payment platform. Innsamling360.no is only accessible with Google Translate for most of us and their payment system seems to be down. Although I understand if they don't want to use multiple providers.

 

[Arfmeister]

Maybe a different payment platform. Innsamling360.no is only accessible with Google Translate for most of us and their payment system seems to be down. Although I understand if they don't want to use multiple providers.

Yes.
Also include other payment systems if possible
- paypal
- Wise
- Revolut
- IBAN bank transfer
- IDEAL (although I think that’s excuse Dutch?)

 

[ryanc97]

F&M have so far been able to get millions of GBP/EUR for their studies. They are scrambling on Dara phase 2 for some unknown reason.

And DecodeME got funded. SequenceME will probably get funded. There aren’t many other worthwhile studies out there..

"Unknown reason".

 

[Utsikt]

Maybe a different payment platform. Innsamling360.no is only accessible with Google Translate for most of us and their payment system seems to be down. Although I understand if they don't want to use multiple providers.

That platform is tied to the admin and accounting software the association uses, and as mentioned by someone above, they will make an English page as well.

Also include other payment systems if possible
- paypal
- Wise
- Revolut
- IBAN bank transfer
- IDEAL (although I think that’s excuse Dutch?)

It’s probably worth asking, although I suspect it will be limited by what the system provider uses.

And isn’t being able to pay by card enough in 99 % of cases?

 

[Arfmeister]

And isn’t being able to pay by card enough in 99 % of cases?

When you’re very severe, it makes quite a difference.

(I thank God for payments with fingerprint ID )

 

[Utsikt]

When you’re very severe, it makes quite a difference.

(I thank God for payments with fingerprint ID )

Absolutely, for the 1 % it will matter. But I think there are too many payment methods out there to cover all needs in all situation, so it’s a question of where to stop for a commercial actor aimed at the general public.

In an ideal world, they would include more options aimed at an international audience.