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

OrganicChilli said:
Yes, I just donated.
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Thanks, I've just donated too. Firefox couldn't translate the page so had to switch to Chrome *shudder*.

Utsikt said:
Not that I’m aware of.
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Could we at S4ME get one going? We are an international forum after all.

Of course we would have to be careful not to look like we favour the hypothesis behind dara or that we are promising a treatment but I think that should be easy. We just need to outline that this trial shows promise for the reasons it does, F&M are a safe pair of hands to do it, and we need to know if this works not just because it could be a viable treatment (or point the way to a better one, as JE has suggested) but because it will be an important data point in figuring out the mechinisms behind MECFS- if LLPC depletion works or doesn't that tells us something that wil be useful to the field.

If this is not an appropriate endeavour for us, who would be more appropriate? We all need this trial funded so that it completes in good time and doesn't drag on for years and years.

Edit: As was pointed out on the SequenceME thread, the long covid community are a viable source of funding. Although this is a strictly MECFS trial, many LC patients are well aware they have covid induced MECFS and would understand that this trial could benefit them too.
 
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V.R.T. said:
Thanks, I've just donated too. Firefox couldn't translate the page so had to switch to Chrome *shudder*.


Could we at S4ME get one going? We are an international forum after all.

Of course we would have to be careful not to look like we favour the hypothesis behind dara or that we are promising a treatment but I think that should be easy. We just need to outline that this trial shows promise for the reasons it does, F&M are a safe pair of hands to do it, and we need to know if this works not just because it could be a viable treatment (or point the way to a better one, as JE has suggested) but because it will be an important data point in figuring out the mechinisms behind MECFS- if LLPC depletion works or doesn't that tells us something that wil be useful to the field.

If this is not an appropriate endeavour for us, who would be more appropriate? We all need this trial funded so that it completes in good time and doesn't drag on for years and years.
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F&M have said that they are working on more funding applications.

I don’t know who’s the most appropriate fundraiser.
Yann04 said:
I think to most pwME chucking in a few moneys as they can afford that doesn’t matter too much. But I guess it does for rich donors.
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The annual limit in Norway is 25k NOK total (€2.2k) per person or organisation for gifts to pre-approved organisations (the Norwegian MEA is on the list).

If I give 1000 NOK, my taxes will be reduced by somewhere between 200-300 NOK (depending on my effective tax rate) because the entire sum is subtracted from my taxable income. Everything else equal, it allows me to give 25-40 % more for the same cost.

In theory, me and an England resident would be better off if we coordinated so that I give for them to this study, and they give the equivalent for me to Ponting & Co.

(Sorry for the economist ramble!)
 
Yann04 said:
@V.R.T.

Is there a reason you say this is easier to crowdfund for than sequence ME. Arent they similar pricetags?
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I guess it was probably an arbitrary distinction. But SequenceME is projected to cost between £8 and 20 million, whereas this costs 22 million nok which is around 1.6 million, so a much smaller target.
 
V.R.T. said:
I guess it was probably an arbitrary distinction. But SequenceME is projected to cost between £8 and 20 million, whereas this costs 22 million nok which is around 1.6 million, so a much smaller target.
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Oh that explains it. I kinda didn’t get the NOK i was just reading in CHF/Euro order of magnitude.
 
Man I wish there was a way for US people to donate and it be tax deductible. Donations for 501(c) charities always go up at the end of the year for tax reasons. It’s a lot easier to get large donors when it’s tax deductible.

How do we get OMF’s eyes on this? Can they allocate funds directly to this?
 
Utsikt said:
The SequenceME announcement says £7M for the first 10,000 samples.

With almost double that in samples and the cost of the team we’d be at £15M+ assuming the costs scale linearly.

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I think they're now planning to do 9000 from DecodeME and then collect 9000 from Long Covid patients. So cost wise probably around the same for sequencing but then you've got to factor in collecting the LC samples...
 
V.R.T. said:
I think they're now planning to do 9000 from DecodeME and then collect 9000 from Long Covid patients. So cost wise probably around the same for sequencing but then you've got to factor in collecting the LC samples...
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Collecting them is just getting people to mail in spit samples. £100 per person is £1m for 10k. No idea if that’s a sound estimate.
 
OK. I donated. But that was pretty inaccessible for non-Norwegians.

ChronicallyOverIt said:
Man I wish there was a way for US people to donate and it be tax deductible. Donations for 501(c) charities always go up at the end of the year for tax reasons. It’s a lot easier to get large donors when it’s tax deductible.

How do we get OMF’s eyes on this? Can they allocate funds directly to this?
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I would strongly encourage the funding organization to go international.
- website in English
- accept more forms of payments

I’m pretty convinced that they will get much faster to the targeted funding amount.
Like 10x faster.
- i’ve noticed that the pilot study is catching quite some attention

Spreading this thru international social media will reach non-patient communities as well.
- side effect will be that it also helps with ME-advocacy in general

ANYONE knows the organizers?
@Utsikt ?
 
Arfmeister said:
OK. I donated. But that was pretty inaccessible for non-Norwegians.



I would strongly encourage the funding organization to go international.
- website in English
- accept more forms of payments

I’m pretty convinced that they will get much faster to the targeted funding amount.
Like 10x faster.
- i’ve noticed that the pilot study is catching quite some attention

Spreading this thru international social media will reach non-patient communities as well.
- side effect will be that it also helps with ME-advocacy in general

ANYONE knows the organizers?
@Utsikt ?
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Can’t say I know them, but I can send them a message in Norwegian.
 
Arfmeister said:
I would strongly encourage the funding organization to go international.
- website in English
- accept more forms of payments

I’m pretty convinced that they will get much faster to the targeted funding amount.
Like 10x faster.
- i’ve noticed that the pilot study is catching quite some attention
Click to expand...
I agree, I really think this is a study that people would be willing to fund, and I think a site in English and a well corordinated international fundraising effort would raise the funds fairly swiftly.
 
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