Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

[Utsikt]

Sadly a big “if”

I’m optimistic, especially if DecodeME delivers something they can use to show that ME/CFS is a real disease in they eyes of lay people.

 

[leokitten]

Maybe there’s some kind of CD38 targeting CAR-NK or CAR-T cell therapy that can better target and deplete CD38 plasmablasts while sparing CD38high NK cells and retaining sufficient ADCC cytotoxicity. Would really help test their theory and see if better responses can be produced in the lower NK baseline non-responders.

That’s the problem with monoclonals like dara and ritux they don’t effectively deplete all their target in a subset of patients (in cancer and autoimmune diseases too) leading to inadequate clinical responses and researchers questioning their pathomechanism theories when in reality it’s just the drug isn’t good enough.

 

[EndME]

Has data on the 4 people with ME/CFS following Covid that weren't part of this study already been presented?

 

[V.R.T.]

Has data on the 4 people with ME/CFS following Covid that weren't part of this study already been presented?

I hadn't heard about this! Was this Fluge and Mella too?

 

[EndME]

I hadn't heard about this! Was this Fluge and Mella too?

In a new amendment to the present study, we aim to test this by including four new patients with ME/CFS following a SARS-CoV2 infection who fulfil the trial inclusion criteria, and who have baseline NK-cell numbers above 125 (x106/L). In this amendment, the daratumumab dosing schedule has been reduced. These data will be published later as a case series. Possible interventions for antibody-targeting therapies in Long COVID have recently been summarized (60).

 

[Jaybee00]

In general I like the idea of using steps as an activity metric.

I think steps is a fine metric for somewhere like Bergen where it never gets very hot and it never gets very cold.

What if you did the study in Riyadh or Dubai or Miami or Phoenix where it really gets too hot in the summer to walk around a lot? Similarly what if you did it in Winnipeg or Minneapolis or Fairbanks, where it gets too cold in the winter to walk around outside in comfort?

Weather could end up being a confounding variable for steps in certain areas I think.

 

[wigglethemouse]

In general I like the idea of using steps as an activity metric.

I find there is too much variation day to day, and somewhat week to week, and month to month, but monthly tracking seems to work well when compared to the previous year (I have seasonal variation). So long term follow-up is really important for treatment studies with minor or moderate effect. The only downside to tracking activity is a change of recording device seems cause a a big jump - I've seen 10-20% difference.

Saying that, the step level of activity change being displayed with Dara is a huge step change and that can certainly be tracked weekly or monthly within the same year to show the effect.