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

[neophyte32]

How do could anyone know it was the drug? All we know is that she recovered.

As did I. Twice. Without any medication.

U have been severe like her ? For 4 years ?

 

[Kitty]

U have been severe like her ? For 4 years ?

Moderate. The first remission happened in 1983 after seven years of illness, and the second in the mid-1990s after about 15/16 years.

It hasn't happened since, and this coming autumn I 'celebrate' half a century since I first got ill.

 

[BrokenBeaktheBrave]

Did she really have MECFS? It's crazy that it cured her when three confirmed cases of severe MECFS that I've spoken to saw no improvement with Daratumumab (they followed the protocol meticulously). This disease is strange. The wait for the study results is endless... 2028/2029... my god.

Why is the assumption that one drug will treat/cure us all anyway?

 

[Jonathan Edwards]

It's crazy that it cured her when three confirmed cases of severe MECFS that I've spoken to saw no improvement with Daratumumab (they followed the protocol meticulously). This disease is strange.

Not particularly. Responses to B cell depletion vary for most diseases. A good proportion of RA patients go into remission but some show no benefit. Daratumumab on its own may well produce erratic results if the dynamics of what is being targeted are complex and they are likely to be.

 

[ryanc97]

Did she really have MECFS? It's crazy that it cured her when three confirmed cases of severe MECFS that I've spoken to saw no improvement with Daratumumab (they followed the protocol meticulously). This disease is strange. The wait for the study results is endless... 2028/2029... my god.

She was selected for a trial….. by Fluge and Mella. You think they don’t know how to evaluate patients?

 

[ryanc97]

Moderate. The first remission happened in 1983 after seven years of illness, and the second in the mid-1990s after about 15/16 years.

It hasn't happened since, and this coming autumn I 'celebrate' half a century since I first got ill.

During remission were you able to do intense exercise and workouts? Because if you did and you relapsed, then it suggests it was probably the exercise

She can do exercise now with no symptoms

 

[ryanc97]

She's the one we saw on TikTok. She was somewhere between severe and moderate. Okay, great for her, but we all know several people through social media who tried the Fluge and Mella protocol on their own. No results for two men and one woman, all severe. What can we conclude from this?

Who is this severe woman on social media that tried Dara?

 

[Kitty]

During remission were you able to do intense exercise and workouts?

Yes, I was a dancer, hillwalker and swimmer. I was able to do those things during both remissions, in a way that would have been impossible the rest of the time. When I say I've been ill for 50 years, I've only been disabled for about 40 of them—the other 10 years I had very good function.

Because if you did and you relapsed, then it suggests it was probably the exercise

It's possible. But as the remissions were spontaneous, the relapses could have been too. We can't know what happened.

What it does show is that spontaneous improvement is possible, and although it seems to be uncommon, I'm certainly not the only person to have experienced it. It means we have to be careful about attributing cause and effect, and given the length of those remissions, follow 'recovered' people for a minimum of five years.

 

[neophyte32]

Who is this severe woman on social media

A french girl on Twitter. She had very serious side effects... It's so dangerous to give yourself injections at home without supervision.

 

[ryanc97]

I think if you have remission… the worst thing you can do is exercise with it. Best to not exercise at all imo

 

[ME12456]

Not sure if this enrollment update from the ResetME trial has been posted yet.

English AI translation below.

ResetME Study Status​

As of June 24, 2026, 42 patients have been included in the study at Haukeland, and 33 have received their first treatment or placebo.


Recruitment will continue after the summer, with plans to include an additional 24 patients. Once this is completed, all applicants will receive feedback—either regarding further clinical evaluation or notification that they did not get a spot in this round.


The ME Fund (ME-fondet) is in close contact with the researchers at Haukeland.

Comes from the latest ME-fondet newsletter

 

[Utsikt]

New update on funding:
They need 1.2M NOK to reach the target. That’s £92k or €107k.

Regarding recruitment:
They received over 300 applications for the 66 spots. They used a version of the past tense that could indicate that the application period is finished, but that might be me reading too much into it. I still think it’s safe to say that enrolment won’t be slowed down by the lack of participants.