International ME/CFS Conference 2025 Berlin May 12-13

Responders like 7-8k steps.

From like 3k baseline.

 

That's still very impressive from moderate!

 

Immunoadsorption trial in ME/CFS

Elisa Stein, Charité - University Medicine Berlin, Germany
10:10
10 min
Immunoadsorption in severely ill ME/CFS

Georg Schlieper, Dialysis Hannover - Center for Kidney, Hypertension and Metabolic Diseases, Germany
10:20
30 min

B cell depletion targeting CD19 trial in ME/CFS and PCS

Judith Bellmann-Strobl, Charité - University Medicine Berlin, Germany
9:50
10 min

Did anyone happen to catch these talks? Quite interested to hear what was said.

 

Also baseline IGG level didn’t matter with respect to response—that’s a shocker!!

 

How dangerous is this? Is this erasing all LLPC immune history? E.g. all vaccination LLPCs gone?

 

@Jonathan Edwards
Any idea why the number of NK cells is (or might be) more important than NK cell activity for response to Daratumumab?

Thanks.

 

I doubt we can draw any conclusions since we do not even know if these are 'responses', the numbers are small and NK cell tests are pretty meaningless.

 

1) Could you elaborate why you think the amount of NK cells don’t have much value for ME CFS research ?
2) are they supposed to vary over the months (depending on infections, etc.) ?
3) and can amounts vary per individual in the general population (some having standard high NK, some individuals standard low NK ?
4) or is the role of the NK cytotoxic activity of the NK-cell more important?
- Or also quite meaningless in your point of view?

I’ve seen quite some ME-research papers on it, but never know what to make of it‍♂️

I’m personally interested in this because my CD-56 NK-cells (CD16/56) measurements have always been low
- in a range of 90-400
- I had 5 low measurements over a period of 12 years*
- 72 / 99 / 56 / 91 / 79


*my ME specialist already found this important to measure in 2012

 

Numbers of cells in blood tend not to be a useful indication of anything much. In all the autoimmune and auto inflammatory diseases you find very little change in cell numbers in blood unless they are cell groups being targeted like cytopenia in lupus.

Everything about ME/CFS seems to suggest that an immune response is too aggressive, producing signals without any obvious reason (as for the other conditions mentioned). So if NK cells are involved we might expect too many not too few. I cannot think what slightly low NK numbers would mean. If the lower l limit was 90 and the measure was 5 then that might indicate susceptibility to infections but as said, I doubt you could conclude much.

I have a suspicion that the whole NK story grew up because CD4 T cells are low in AIDS and someone thought maybe ME/CFS is like AIDS but for NK cells. That makes no real sense to me. There is no good evidence for immunodeficiency in ME/CFS.

 

lowest step count was 1700 for responder group.
– check the column in image attached for more details on responders versus non-responders

 

The lowest amount of steps were 1500 for the severe. That seems to be very high. I was at ~500 before I became severe. Now I’m at 100-200, which is using the bathroom and moving between two beds.

 

This is the baseline, could you also share the table they showed for after treatment? I think it even went up to 15000 if I recall correctly?

 

I’ve been thinking - with my non-medical background - there might be 2 phases / stages ME CFS :

A) The overactive immune response Phase:
- Immune response is too aggressive, producing signals without any obvious reason
- hereby every infection is continuously countered: we don’t actually notice the infections much
- but we are exhausted because of the energy consumption of overactive immune system
- possibly this would show continuously high immune cell markers (e.g. higher NK, Cytotoxicity, etc)

(We are mostly in this phase at the early stage ME)

B) The exhausted immune Phase:
Then, at some point, our body and immune system is so exhausted of working 24/7 overtime
- that these inflammatory mechanisms drive us in an immunosuppressive phase
- characterized by exhausted immune cells, with an inability to mount an immune response
- so low levels of inflammatory cytokines, NK cells, etc
- maybe this is the severe stage and/or PEM-stage ?

So possibly we alternate continuously between Phase A) en B)
Depending on how often we get into a PEM-crash vs establishing a homeostasis (thru pacing, avoiding infections, etc)

And if we are in a phase B) rolling PEM, we are not able to get out of tamed exhausted, surpressed Immune state
- so when we get a virus in B) -> our immune can not clear it
- but the continuos low level tamed immune response causes all kind of symptom
- consuming a lot of ATPs -> so we stay in glycosis - > and we keep on PEM-crashing ?

PS: these alternating stages/phases would mimic different periods of my 16 year ME

 

Take out your glasses

It’s 10.000 steps max

 

I don't see any evidence base for this. Immunologists talk of immune exhaustion but I don't think it has anything to do with using or running out of energy, or even probably exhaustion in the usual sense. There is no clear evidence of immune deficiency or suppression. I think these ideas have been propagated by muddled thinking.

 

Wait was that 1700 pre or post treatment? I'm not clear

 

So how would one interpret these 2 studies T-cell exhaustion in this case?
- Is this something you will also find and measure in other diseases?

1) from Maureen Hanson: Immune T cells become exhausted

https://news.cornell.edu/stories/20...e-exhausted-chronic-fatigue-syndrome-patients

2) Abnormal T-Cell Activation And Cytotoxic T-Cell Frequency Discriminates Symptom Severity in ME 2025

https://www.medrxiv.org/content/10.1101/2025.01.02.24319359v1.full.pdf

 

This is baseline, pre treatment.

Additionally, in the responder group there were only moderate and moderate/severe patients. The 2 severe patients in this study did not respond.

 

Threads for those papers:

https://www.s4me.info/threads/trans...-fatigue-syndrome-2024-iu-hanson-et-al.41462/

https://www.s4me.info/threads/abnor...elitis-chronic-fatigue-syndrome-25-lee.42017/

 

As a background. These are the slides 2 numbers with graphs & figures so you understand what the Norwegians imply with the NK-correlation
- I hope you can read them because slides are a bit vague / hazy

interestingly practically all NK cells (of n=10)
- went down < 50
- during 40 weeks
- at 5 measurement points
after Dara protocol