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

[Jonathan Edwards]

I watched the Norwegian documentary about Fluge's work. This is exactly what he's doing in my view.

Well, you have yourself admitted that you are unfamiliar with immunology. I know Oystein and Olav and I can assure you that there was nothing random about their choices. It has all been very logically argued. They may be off track but they do have a rationale. What is the rationale for 'randomly' picking HHV6?!!

 

[Jonathan Edwards]

What worries me about the idea of HHV6 is that it was originally proposed on the basis that there might be immunodeficiency in ME/CFS but that has not been confirmed (if there was we would expect other opportunistic problems and those are not reported). If there is no immunocompromise then the symptoms of ME/CFS do not seem to fit with recognised accounts of HHV6 infection in adults.

 

[V.R.T.]

But I am.

I watched the Norwegian documentary about Fluge's work. This is exactly what he's doing in my view.

Okay then you have seriously misunderstood. F&M observed massive improvements in cancer patients with ME/CFS following treatment for cancer. So significant they were asking for more chemotherapy. They have followed this clinical observation through several drug trials, including a positive phase 2 of cyclophosphamine, and are now using daratumumab in order to try and get that effect in a safer drug.

There is also evidence from a study that ME/CFS B cells express more CD38 when stimulated than the B cells of healthy controls. Daratumumab is an anti CD38 drug. That is not in any way trying random drugs in an attempt to find a miracle cure. It is following the clinical and scientific evidence where it leads you.

 

[Utsikt]

Okay then you have seriously misunderstood. F&M observed massive improvements in cancer patients with ME/CFS following treatment for cancer. So significant they were asking for more chemotherapy. They have followed this clinical observation through several drug trials, including a positive phase 2 of cyclophosphamine, and are now using daratumumab in order to try and get that effect in a safer drug.

There is also evidence from a study that ME/CFS B cells express more CD38 that stimulated than other cells. Daratumumab is an anti CD38 drug. That is not in any way trying random drugs in an attempt to find a miracle cure. It is following the clinical and scientific evidence where it leads you.

I think there is a case for saying that F&M might be making a few leaps of faith, and that we’re cutting them a bit of slack because they have demonstrated that 1) they are very good at doing trials, 2) they are willing to accept negative data, and 3) we want treatments as soon as possible.

I trust @Jonathan Edwards if he says that their rationale is well reasoned, and that that might mean that they have crossed the threshold of where it might be warranted to do treatment trials even if they are based on some unverified assumptions.

From a layperson perspective, one of the main differences between F&M and the other treatment researchers is that F&M’s ideas can’t be easily picked apart with existing negative findings. Most proposed treatments seem like they are based on memes or hype about what someone thinks is wrong, regardless of what the data says.

 

[Kitty]

From a layperson perspective, one of the main differences between F&M and the other treatment researchers is that F&M’s ideas can’t be easily picked apart with existing negative findings.

Also, when they get negative findings they say so.

 

[ryanc97]

The problem with all these viral reactivation tests is that there is no healthy controls done to interpret them against because no HC people get these tests.

So ME people panic and start taking all kinds of tests in a bid to find something wrong and once you see the high viral scores (which we have no HC population to compare to) they zoom in on that and assume it is a “latent virus” causing their symptoms. Then they start loading on antivirals for the cure.


I’ve been there and done that.

 

[EndME]

The problem with all these viral reactivation tests is that there is no healthy controls done to interpret them against because no HC people get these tests.

So ME people panic and start taking all kinds of tests in a bid to find something wrong and once you see the high viral scores (which we have no HC population to compare to) they zoom in on that and assume it is a “latent virus” causing their symptoms. Then they start loading on antivirals for the cure.


I’ve been there and done that.

Expect that there have been several large scale studies looking at different viruses in ME/CFS and HC and finding largely no differences. So any explanation will have to be different to the standard explanation seen online.

 

[ryanc97]

Expect that there have been several large scale studies looking at different viruses in ME/CFS and HC and finding largely no differences. So any explanation will have to be different to the standard explanation seen online.

Yes which proves my point. People get fooled by these tests because they don’t compare their results to a healthy population

 

[ChronicallyOverIt]

Yes which proves my point. People get fooled by these tests because they don’t compare their results to a healthy population

I also see the IGM vs IGG testing misconception a lot with EBV. Lots of ppl with positive IGG first read this as active and start down that path

 

[ryanc97]

Any biological reason to think Dara might only work on women? Even though the study didn’t include any males.

 

[Jaybee00]

Any biological reason to think Dara might only work on women? Even though the study didn’t include any males.

I think I may have asked this question somewhere. But are there any immune mediated diseases where a treatment only works on one sex?

Also the four or five ? patient Amendment may have included males—we don’t know.