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

All of the info is in Norwegian. While I have not seen an explicit requirement that you speak Norwegian in order to be able to participate, I strongly suspect that it is the case. And as Yann said, traveling when moderate/severe will affect the results.
 
Braganca said:
I wonder would they accept people who will relocate there for the first few months and the middle treatment month.
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From what they told me, you must be in the Norwegian Health Care system, hence the requirement to be a resident. I'm not sure how quickly one could enter that.
They did not tell me any language requirements, I don't think you have to be/speak Norwegian from that they told me.
 
rapidboson said:
From what they told me, you must be in the Norwegian Health Care system, hence the requirement to be a resident. I'm not sure how quickly one could enter that.
They did not tell me any language requirements, I don't think you have to be/speak Norwegian from that they told me.
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In Norway, you will normally automatically become a member of the Norwegian National Insurance Scheme when you live here and have tax links to the country. In order to become a member, you must normally plan to stay in Norway for at least 12 months.

You may lose your membership of the National Insurance Scheme if you leave Norway, even for a short period of time. It is important to familiarise yourself with the rules if you plan to stay abroad for any length of time.
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https://www.helsenorge.no/en/healthcare/Healthcare in Norway - Helsenorge
 
Jaybee00 said:
Can’t the Norwegian sovereign wealth fund be used to fund this? Seems like they want to keep increasing the amount of money in the fund, but don’t spend that much of it?


https://www.nbim.no/en/
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On average, the government is to spend only the equivalent of the real return on the fund, which is estimated to be around 3 percent per year. In this way, oil revenue is phased only gradually into the economy. At the same time, only the return on the fund is spent, and not the fund’s capital.
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And the fund isn’t used directly by anyone, it’s only used to supplement the national budget (about 20 % of the total budget).

So they would have to apply to the normal funding bodies for (medical) research.
 
Hutan said:
I wonder if it would be worth trying to change this. For example, individuals or ME/CFS organisations could write to the drug company asking them to support the study - pointing out the severity of ME/CFS and the large numbers of people affected.


There are a few organisations there that could be contacted.


So, Genmab is a Danish company.

I think Janssen Biotech is headquartered in Belgium.

I'm just thinking, the small amount of funds that most of us could donate would be easily outweighed by a substantial discount on the drug cost - and a few powerful letters to the right person perhaps could achieve that. I think we'd probably need some guidance from the Norwegian ME Association on what should be done (and what has already been tried).
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I think this is a very good point. Especially if some respected researchers signed the letter, that might give it some weight. But we would have to be careful about who drafts it. I'm having flashbacks to those 'fund BC007 phase 3 because it definitely works even though the phase 2 hasn't reported yet' type petitions that went around before last winter.
 
An article in Norwegian behind a paywall that talks about funding, among other things. Two patients are interviewed and ask if the government can afford to not fund it.

A few points to highlight:
1. Half of the cost (26M NOK) is for the drugs.
2. Fluge says that they have secured funding for the «central tasks» in the study.
3. They might not be able to complete it on time if they don’t get the funding soon enough.
4. Fluge says they’ll get it done somehow eventually.
5. Janssen’s only reason for not contributing with a discount is that it didn’t «align with their strategy».

If I’m going to speculate, this might mean that they will start with a smaller cohort regardless, and add patients up to the target of 66 as they secure funding along the way.

One of the participants in the pilot is among the two that were interviewed. She has been able to go back to work as a midwife. At her worst, she was on the more severe end of bedbound, but it’s not mentioned how she was when she started the drug.
 
Utsikt said:
Two patients are interviewed and ask if the government can afford to not fund it.
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I have just discovered 26m NOK is the equivalent of just under 2 million pounds. This is peanuts, especially when disease burden and prevalence are taken into account. What are these institutions playing at?

I think either a big fundraising or lobbying effort by ME orgs would be appropriate here. We all need this trial conducted as swiftly as is feasibly possible.
 
It's really annoying to think that, should the drug be found to work, Johnson and Johnson, with their 'it doesn't align with our strategy' attitude, would benefit enormously.

(They had ads here for some of their products, ending in a friendly American voice saying 'Johnson and Johnson. A family company'. That seemed to disappear after a while, I assume because Johnson and Johnson found that other New Zealanders like me found that patently misleading claim extremely annoying.)

I do think that donating the drugs for this study would be such a small thing for that vast company that surely they could be convinced. Fluge and Mella's team would be best placed to make the case, but I expect that they have tried. I don't know what can be done.... Perhaps there is someone different in the Johnson and Johnson organisation that could be approached? @ME/CFS Skeptic - maybe EMEC could approach Janssen in Belgium, maybe in conjunction with Fluge and Mella's team?
 
Utsikt said:
Johnson & Johnson’s (owners of Janssen) focus areas are cancer, immunology and neurology. Using a cancer drug for an illness that is possibly mostly caused by the immune and nervous system should be right in their ballpark.
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Again, if the evidence of immune and nervous system involvement is stronger by the end of the year perhaps they might be more amenable to persuasion.

There is already the Zhang study...
 
I think we should save our effort for after DecodeME, as @V.R.T. points out.

This is also exactly the kind of thing that the various organisations should be pushing publicly, instead of sharing certain apps and videos..

I know that John Green and others had a successful publicity campaign to get the manufacturer of TB tests to lower their prices for poorer countries. Maybe there is something to learn there.

But I’m also hesitant because there is bound to be so much pseudoscience and going beyond the evidence if the wider community is going to be involved. John Green was very good at formulating a clear and concise message that people stuck to, and encouraging people to be polite.
 
Utsikt said:
I think we should save our effort for after DecodeME, as @V.R.T. points out.
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There will be people in the DecodeME team who will know before the public do whether the genetics findings in any way bolster the rationale for this trial. If they do, perhaps they could work with the Fluge and Mella team to help make a confidential case for support from Johnsons and Johnson and/or government funding for the trial? I just hate to see the months and years go by, with people suffering, so, speed is desirable.
(@Andy - no need to reply, just alerting you.)
 
Utsikt said:
I think we should save our effort for after DecodeME, as @V.R.T. points out.
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There is no reason to wait for any genetic study since there is already clinical evidence of the drug working!!

From the Board https://www.jnj.com/our-leadership-team, certainly Ron Davis knows https://www.jnj.com/leadership/jennifer-a-doudna or at least knows someone who knows her.

Here is one email I found for collaboration or something
"InnovativeMedicineBusinessDevelopment@its.jnj.com" <InnovativeMedicineBusinessDevelopment@its.jnj.com>

Can anyone find an email for this guy? https://innovativemedicine.jnj.com/david-m-lee-md-phd Maybe @Jonathan Edwards knows him, since he worked on RA?
David M. Lee, M.D., Ph.D.
Global Therapeutic Area Head, Immunology

If anyone has Janet Dafoe's email, please send me a message and I'll ask her to please ask Ron to contact Jennifer Doudna.

This is ridiculous.
 
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