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

[Braganca]

I find it hard to believe someone with ME/CFS on, say 1000 steps per day just around thier house, would not at least increase to about 4000 steps if they improve significantly and are able to go out more, even if they are doing more brain work.

The problem might come with milder ME/CFS if the pwME is already on 4 to 5 thousand steps per day on better days, as I probably was when my ME/CFS was mild and I was still working part time. Unless I restarted deliberately 'exercising' on getting better, my step count might not increase much.

Just stopping gettting PEM would increase average step count, eliminating all those days of being stuck in bed crashed.

I agree as a severe person who during bad months does 800 — 1500 steps a day, but when am in a good month (recently due to Botox for migraine helping me) can do 2000 to 3000 just around a two bedroom apartment and patio. You can increase steps a lot around the house without leaving when you feel a bit better just doing chores / organizing.

 

[ME/CFS Skeptic]

Do I understand their view correctly that Rituximab might work if applied long enough so that new plasma cells cannot be formed. If it is applied too briefly like in the phase III trial, the B-cells are targeted but the long-lived plasma cells might still be producing antibodies?

 

[Jonathan Edwards]

Do I understand their view correctly that Rituximab might work if applied long enough so that new plasma cells cannot be formed. If it is applied too briefly like in the phase III trial, the B-cells are targeted but the long-lived plasma cells might still be producing antibodies?

Roughly yes, I think. But plasma cells can last for years and IgG levels stay normal without any replacement in the context of rituximab.

So maybe high baseline IgG4, like high NK cells, might be an indicator of who will respond.

Yes, like the NK finding this is very intriguing - a subset with 4x higher IgG4 respond.

 

[Adrian]

I find it hard to believe someone with ME/CFS on, say 1000 steps per day just around thier house, would not at least increase to about 4000 steps if they improve significantly and are able to go out more, even if they are doing more brain work.

The problem might come with milder ME/CFS if the pwME is already on 4 to 5 thousand steps per day on better days, as I probably was when my ME/CFS was mild and I was still working part time. Unless I restarted deliberately 'exercising' on getting better, my step count might not increase much.

Just stopping gettting PEM would increase average step count, eliminating all those days of being stuck in bed crashed.

If I work at home I probably only do 1000 or 1500 steps per day. I was thinking in terms of smaller improvements and where energy gets spent.