Open Norway: Study of Daratumumab Injections for Patients with Moderate to Severe Chronic Fatigue Syndrome, 2025

I kind of disagree, even though I think my onset was progressive as well.

I think it's unlikely that we find a treatment that works for everyone diagnosed with ME/CFS. So if the researchers have a hunch itll work better for a specific subgroup, it makes sense to at least have the small scale pilots on those subgroups. To increase their chances of statistical significance.

Of course, when it becomes a problem is if one subgroup is disproportionately left of out of research on ME (like severe people).


But I definetely want to avoid whatever is going on in long COVID research where they are lumping people who got post-icu syndrome from COVID and people who got autoimmune illnesses from COVID into a single drug trial and acting surprised when the drug doesn't work.

 

I think it makes sense to focus on one specific subgroup if you believe that ME/CFS might actually be a group of different diseases.

I have not seen anything that indicates that they believe that people without an infectious onset doesn’t have ME/CFS.

And they have been very clear about how horrible ME/CFS is. An example is how they are cancer researchers were very surprised to encounter patients that wanted more chemo. That says something about how bad their suffering is.

And how they say that the more severe with ME/CFS often are as sick or sicker than terminally ill stage 4 cancer patients.

They are also one of very few groups trying to study the more severe spectrum. I would not be surprised if they turned their attention to the very severe or worse if they find success with this trial.

I wish they were more outspoken in the media in Norway because the BPS lobby is so prominent, but that’s the only thing I feel like I can fault them for.

 

Yes that makes sense and it sounds like a sensible way to increase probability that everyone has the same illness, in the absence of a diagnostic test. I feel that many of us who can't pinpoint an exact start date of our illness with 100% certainty will actually still fit in to that same subgroup - the illness process was started by a virus but the effects built up more gradually. But yes, I can see the sense in focusing on those who can pinpoint a virus as the starting point. So long as they can find enough people in this group.

 

They had many more patients in their previous larger trials so I don’t think recruitment is going to be an issue.