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

This is a brilliant idea and the results will be useful for all drug trials in this field.

It's good he stresses that. The cyclo phase 2 makes me more hopeful for this than I would be about another phase 2 after a positive pilot trial but we still need to wait for the data.

 

Wow. So this is gonna take a lot of fundraising.

It’s absolutely ridiculous that they won’t even provide discounted drugs for the trial. Knowing full and well that the drug prices are way higher than it costs to make them due to patents.

 

I'm not sure if it has much to do with ME/CFS or any prejudice towards ME/CFS. I suspect it has more to do with this just being the usual way into which this abstruse system has developed into. I suspect if someone wanted to run a trial into another condition and there wasn't too much evidence to start off with (no knowledge of an ME/CFS mechanism or experiments showing the relevence of plasma cells or antibodies) they'd run into the same problems. It often seems that people run into the same problems, even if the evidence is better and there is more a priori knowledge. Of course little enthusiasm and lack of funding in ME/CFS in general probably isn't helpful.

 

I mean for them, if the trial’s going to happen either way, might as well charge full price because they make a profit. The system is designed to encourage such behaviours.

 

I wonder if the OMF or MEA would contribute funds to something like this?

 

Did you say something on another thread about daratumumab being not an ideal treatment choice (as opposed to a test of principle) for some reason? Because it's cumbersome or risky or something? I might have got this wrong.

 

I was hoping to get an auto-transcript from YouTube and run it through Google translate, but there seems to be no transcript. However, by mucking around with Settings (the little cogwheel thing), I'm now getting subtitles in English via some sort of live auto-translate thing.

 

I used this website to get those auto-translated subtitles, then I asked Claude Sonnet 4 to format it nicely and fix any typos without changing the content:

Edit: Better translation below.

 

@Jonathan Edwards, I know the response rate of 60% in the pilot will be an inaccurate estimate, even if real, because of the small number of patients but I'm wondering how many PwRA don't respond to rituximab and whether they have any options if they don't?

60% would be a ton better than the 0% we've got now but would leave a lot of PwME with nothing. I'm wondering what the implications are.

 

Do we know that about problems increasing circulation? I didn't think we did. Is it maybe failure of translation?

 

For «stress» he uses the word «belastning», which translates to «load», «strain» or «burden» in this context. He later uses «anstrengelse», which translates to «exertion». So I think he means «exertion» for the first instance as well.

But he does talk about problems with increasing the circulation during exertion, and that this causes symptoms (and more lactic acid).

But the bolded sentence is wrong. He does not say anything about developing ME/CFS after stress exertion, etc. in this section, or anywhere else for that matter. He mumbles at bit here, so I assume the AI hallucinated..

Edit: the entire section reads more like a summary than verbatim quotes. I suspect that might be the case for the rest of the translation as well..

 

I think your guess is as good as mine on that one.

 

Thank you, very handy to have a Norwegian person to make sense of this!

 

In defense of the AI, I think the issue is with the YouTube auto-translation. These are the subtitles:

 

He says «slik at når pasientene belaster så lager de fort melkesyre…», which translates to «so that when the patients exert, they quickly create lactic acid (melkesyre)…».

edit: quickly isn’t a perfect translation. He means that they create it sooner than what you would normally.

«slik at» sounds a bit like «sikkert» (certain), which might be what threw the youtube AI for a spin.

Afaik, «meletsy» isn’t a word. But he said «melkesyre» (lactic acid). And it can kind of sound like ME/CFS, so the Youtube AI guessed based on the context.

 

Ah yeah, YouTube guessed meltsey and Claude guessed that meltsey meant ME/CFS from context. I tried another method of getting the auto-generated Norwegian subtitles and asking Claude to do the translation as well. I was adamant that it should not change content and to put anything it wasn't sure about in brackets, but it did take the liberty of adding headings. Let me know if this is better so I know for the future:

Edit: I see that it still did "likely" instead of "so that", but as you suspected, it's because that word for "certain" is in the auto-generated subtitles.

Edit: Made @Utsikt's suggested changes in <this format>.

 

The third paragraph that starts with «central» is better, even though it still uses «stress», re above. «Strained» is probably better, and it avoids the ambiguity of stress wrt mental stress etc, because he is clearly talking about physical activity here.

 

60% response rate will likely be an underestimate of the response rate since in the new trial they are excluding patients with low NK cells. All the non responders in the pilot had low NK cells.

Low NK cell patients will probably need something stronger maybe something like teclistamab. https://www.s4me.info/threads/teclistamab-for-me-cfs.44270/#post-612284