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[ryanc97]

This bcell depletion study is basically the same as rituximab...without step counts and pre baseline monitoring, it doesnt tell us anything useful at all.

Sustained step counts with pre baseline is the only way to determine true response.

If someone really is cured, they will go back to normal life and do normal people things for a long period of time. This will translate into a sustained increase in step count. It's that simple.

Except for me of course, I would be so paranoid of relapse that I would purposely dial it down lol

 

[BrightCandle]

The most interesting thing about that null finding might have been Scheibenbogen's response!

She sounded mad.

I am in no position to judge if she was right on the substance but it sounded like there may be bitter divisions in German research.

Given they called it CFS I am also not clear what the patient group was. Many of the good presentations mentioned CCC and IOM but this one didn't and the use of Chalder Fatigue Score suggests they are quite out of touch. It may be immunabsorption doesn't work on Fatigue patients. Will be interesting to see the paper on that one as the presentation raised some concerns.

 

[V.R.T.]

So are they going to go ahead with needing immunoabsorption response as a requirement in their cd19 trial even with no evidence of efficiency in an RCT?

Those case studies looked interesting but I won't get exited yet.

 

[Hoopoe]

The lack of positive results in treatment studies is disheartening, but it is good that they are being reported and that the investigators are using methods that are capable of producing null results.

 

[Robert 1973]

Yes, sustained step count cannot lie, which is what I've been pushing over here. It can't lie.

Which is why the PACE trial authors dropped actigraphy as an outcome measure.

 

[BrightCandle]

One of the questioners is raising the point that Fatigue is a poor end point which we all agree with especially when its Chalder Fatigue Score!

They really need the objective results like step count and Funcap as the PROM as well as measuring their hypothesis impact to confirm the treatment works (many did do this thankfully).

 

[V.R.T.]

use of Chalder Fatigue Score suggests they are quite out of touch.

Yeah I just think that nobody should ever use it. I refuse to fill them in out of principle.

 

[Liface]

The lack of positive results in treatment studies is disheartening, but it is good that they are being reported and that the investigators are using methods that are capable of producing null results.

Well, that's certainly a positive viewpoint, but I hold researchers to higher standards than that.

I would argue that there is no such thing as a null result. This is not one condition, and in every null result there are patients that improved... but since the studies are not collecting even basic data about them, they have no idea why!

 

[ryanc97]

It looks like noen of the reserachers have learned how to do a proper trial from Fluge and Mella.

 

[N_Dina]

The most interesting thing about that null finding might have been Scheibenbogen's response!

She sounded mad.

I am in no position to judge if she was right on the substance but it sounded like there may be bitter divisions in German research.

Could you elaborate? Did she comment on the study design or?…

 

[Murph]

From the poster presentations, a small but interesting metabolomic study throwing up arachidonic acid pathways as relevant, and with a good range of diseases: post covid, post Q fever, mecfs, juveline arthritis, plus healthy controls..

I swear I've gone down this pathway before, looking at eicosanoids... [quickly googles] ... yes eicosanoids are relevant in vascular contraction, and are made from arachidonic acid which is a membrane phospholipid.

.

 

[BrokenBeaktheBrave]

Although the two researchers presenting it kept talking about how happy they were to share the data which made me think it might go the other way!

I'm glad you said this. I thought I was just having a particularly brain-foggy day and was misunderstanding.

 

[Rick Sanchez]

Except for me of course, I would be so paranoid of relapse that I would purposely dial it down lol

Nah, having been in an actual brief ´´remission`` where I was constantly improving until it turned, its like magic, you would instantly know if you are better. Even with me intentionally not pushing myself at all I still had a higher measurable step count, being scared of ruining it and having been in the community for so long couldnt keep those daily steps down. Just the extra steps walking around the apartment listening to music. Or going to the local shop that was nearby made a difference.

Its also why its so easy to discount so many anecdotes. If you dont feel like divine intervention happened, you didnt get better. ´´Just`` going from moderate to something like mild moderate is crazy, night and day. Life changing.

Also why I am such a big advocate of step count, extremely bullish on it. Need it in every P1 study, so cheap these days too. No excuses.

 

[salin]

Could you elaborate? Did she comment the study design or?…

"ME/CFS Science@mecfsskeptic
Birgit Sawitzki and Carmen Scheibenbogen noted that ME/CFS is heterogeneous and that a subgroup might have had a response, and that the trial was underpowered to detect this. Stricter selection of participants based on immunological parameters might be important."

Interesting, as they all work at Charité...

 

[N_Dina]

Got it, thanks.
Yes, I would have thought that they knew about the preliminary results given that they work at the same place, even though the research groups are different

 

[BrokenBeaktheBrave]

Nah, having been in an actual brief ´´remission`` where I was constantly improving until it turned, its like magic, you would instantly know if you are better.

Agreed. Achieved a few months of remission after trialling LDN and the difference is night and day. It was also bewildering how quickly my life resumed from where it left off from years earlier. Like nothing had happened. My brain and body readjusted so quickly. But then I caught covid, got a couple of new symptoms (the feeling of immense pressure in the brain and "brain on fire" feeling) and just like that I was sick again.

 

[salin]

And does this not directly contradict the studie just before?
"Bettina Grande@GrandeBettina
Elisa Stein (Charité): Immunoadsorption in postinfectious ME/CFS – 7/15 responders, 70% improved in biomarker study. Upcoming IMPACT (IA) & PIONEER (B-cell depletion)."

 

[Yann04]

About twice as many LDN patients got worse compared to Placebo 8% vs 4%.

Could that point to LDN being harmful or likely just noise?

 

[Venicequeenf]

"ME/CFS Science@mecfsskeptic
Birgit Sawitzki and Carmen Scheibenbogen noted that ME/CFS is heterogeneous and that a subgroup might have had a response, and that the trial was underpowered to detect this. Stricter selection of participants based on immunological parameters might be important."

Interesting, as they all work at Charité...

Scheibenbogen critized that the participants were not chosen by autoimmunity i think

 

[Yann04]

I’m a bit worried that Scheibenbogen has become sort of the face of ME/CFS research in germany and at the same time seems to be very attached to a particular hypothesis in a way that feels it might compromise “neutrality”. I’ve not been particularly impressed methodology wise from the papers I’ve seen she authored either.