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

[Utsikt]

There is no reason to wait for any genetic study since there is already clinical evidence of the drug working!!

A positive unblinded pilot with 10 participants is not evidence that the drug is working. These are exactly the kind of claims we need to avoid to be taken seriously.

Private lobbying is fine, as far as I’m concerned. I was mostly thinking about a publicity campaign.

 

[Rick Sanchez]

Surely some of the bigger international MECFS orgs should be able to contribute something? Or some privileged families who have a MECFS sufferer in them? This seems by far the best bet for a treatment for a subgroup of patients. The improvement in steps per day are especially remarkable. Self-reported fatigue ´´improvements`` in an unblinded study are basically meaningless to me when it comes to MECFS studies.

Hopefully I will have some energy to donate a bit this weekend!! I come from a somewhat privileged family, so I can afford to. Does one just send money to the Norwegian ME org directly? Is that the safest way? Sorry if my question seems lazy, but my brains is completely useless at the moment.

Lastly, genuinely don`t understand why there hasn`t been more hype or urgency to donate to this study. Seen barely anything internationally!! Only learned about this here. Flugge and Mella have clearly learned well from their earlier studies. This is the horse to back in my opinion.

 

[Utsikt]

to. Does one just send money to the Norwegian ME org directly? Is that the safest way?

They have a fund that you can donate to, but I don’t know how that works if you’re not in the Norwegian financial system. Your best bet is probably to email them here: kampanje@me-foreningen.no

According to their site, they will prioritise the Dara study until it’s fully funded. In Norwegian:

Innsamling til daraturumab

Støtt Haukelands banebrytende studie med Daratumumab. Hver donasjon – stor eller liten – bringer oss nærmere en løsning.

www.me-foreningen.no

 

[V.R.T.]

Surely some of the bigger international MECFS orgs should be able to contribute something? Or some privileged families who have a MECFS sufferer in them? This seems by far the best bet for a treatment for a subgroup of patients. The improvement in steps per day are especially remarkable. Self-reported fatigue ´´improvements`` in an unblinded study are basically meaningless to me when it comes to MECFS studies.

Hopefully I will have some energy to donate a bit this weekend!! I come from a somewhat privileged family, so I can afford to. Does one just send money to the Norwegian ME org directly? Is that the safest way? Sorry if my question seems lazy, but my brains is completely useless at the moment.

Lastly, genuinely don`t understand why there hasn`t been more hype or urgency to donate to this study. Seen barely anything internationally!! Only learned about this here. Flugge and Mella have clearly learned well from their earlier studies. This is the horse to back in my opinion.

I agree, I feel like the UK MEA could redeem itself somewhat by reaching into it's coffers for this. OMF raise a lot of money too. You would think that this would be a priority for the community internationally.

If it is discovered how to donate for those outside Norway I would be very interested to know.

 

[Sasha]

They have a fund that you can donate to, but I don’t know how that works if you’re not in the Norwegian financial system. Your best bet is probably to email them here: kampanje@me-foreningen.no

It's a good idea to email and ask, especially for anyone who is thinking about dropping a large sum - not sure if there might be special advice about tax etc.

 

[Utsikt]

It's a good idea to email and ask, especially for anyone who is thinking about dropping a large sum - not sure if there might be special advice about tax etc.

Unfortunately, I think it might be difficult to get tax breaks across borders.

For Norwegians, the organisation handles it and reports everything to the tax authorities, the donor doesn’t have to do anything (other than confirming it when they check their automated taxes).

 

[Hutan]

I agree, I feel like the UK MEA could redeem itself somewhat by reaching into it's coffers for this. OMF raise a lot of money too. You would think that this would be a priority for the community internationally.

If it is discovered how to donate for those outside Norway I would be very interested to know.

There might be a role for ME/CFS charities overseas, to collect donations and allow people to claim a tax break, and then forward the funds on to the Norwegian team.

For an organisation like OMF, a campaign for this need not cost it anything much, and might even bring some new donors onto its contact list.

 

[Kitty]

Lastly, genuinely don`t understand why there hasn`t been more hype or urgency to donate to this study.

Maybe because it's still so speculative? The difficulties getting research funding could be because they haven't got a solid evidence base for using the drug.

Given that we don't yet know what it is we're trying to put right, I'd be surprised if it turned out to be the right therapeutic agent. Delighted, but surprised.

It might give us additional clues as to what is going wrong, though. And because it's such a good team, a null result would at least tell us what doesn't work.