V.R.T.
Senior Member (Voting Rights)
Couldn't have put it better. Its a fantasy based around a just world fallacy and eugenecist ideas about deserving and undeserving sick people.
[ME/CFS Research Foundation] International ME/CFS Conference 2026 7–8 May
- Thread starter Jaybee00
- Start date
The stunning part isn't even that they used that excuse, or that it was accepted by the governing body, it's that it's been made public and it literally changes nothing.
This ideology is just the Special Boy who can't ever do any wrong.
"I made this figure.
Having looked at many thousands of similar plots - this result is very striking. Will attempt to explain….
Daratumumab (anti-CD38) has partially reset autoantibody repertoires in this trial.
The cohort is small, but the reset effect occurs more in responders than non-responders.
What you typically see at paired timepoints looks like the “untreated” patients at bottom. Very tight and reproducible autoantibody repertoires across time. We and others have published on this. It is hard to get autoantibody repertoires to change (Bodansky et al 2024 shows BCMA CAR-T can do it, but not anti-CD20 - a B cell depletion that does not reset long lived plasma cells).
The plot is an intra-patient z-score scatter of raw HuProt protein microarray IgG autoantibody data before treatment, and then one year later. Each dot is a unique human protein. Most of the autoantibody events are private to individual patients. You can quantify these events to call “hits” with a simple binary cutoff (z>3).
Colored are unique antibody hits for patients in each sample pair. Blue occur ONLY at baseline, red pass threshold in both samples, yellow only post-treatment). You’ll note that all patients preserve a dominant autoantibody signature (red diagonal) demonstrating that the autoantibody reset is not perfect - the most dominant clones hold out in most patients.
You’ll note in the responder scatters “blue blobs” - these are the dozens of autoantibodies that go-away post therapy. You’ll note this blob looks a bit larger in the responders.
You can quantify the amount of this reset with a sort of Venn diagram ratio of target overlaps called a jaccard similarity. The untreated patients are about a 0.8/1 meaning nearly all the dots are red and all autoantibodies are shared at both timepoints by a simple binary categorization. I’ve seen that same ratio in thousands of other pre vs post timepoint autoantibody samples.
And thus, I find changes in that ratio quite striking! The treated non-responders have a median jaccard ratio about 0.5/1 and the responders about 0.3/1 which are the largest changes I’ve ever seen in HuProt data from the same individuals longitudinally. The amount of autoantibody hits that disappear also correlate with magnitude of patient improvement (SF 36PF scores, another slide from talk). The identities of the autoantibodies which disappear most is somewhat shared between the responders and also quite interesting- but will be up to the authors to reveal those results. Hard to be too certain about mechanistic autoantibodies as biomarkers in any study this small."
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V.R.T.
Senior Member (Voting Rights)
So how do we square these interesting plots with the negative HLA analysis in DecodeME and the failure of the immunoabsoption phase 2?
Could this be connected to a) JE et als idea about antigens to junk in their hypotheses or b) Lipkins findings of immune overreaction to various things in his recent paper?
Utsikt
Senior Member (Voting Rights)
FUNCAP is also susceptible to manipulation, because it asks you what think would happen. If you convince someone they are better, they will get a better score.
But it’s much more relevant for ME/CFS than any other PROM.
If there were improvements for individuals due to the treatment, it would affect the averages on a group level. Because there were no differences on a group level, we can’t claim that anyone benefitted from the treatment.
Which is why tele- and 3-day-interventions are so popular now..
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In her closing presentation, Scheibenbogen noted once again that the neurological research group had not taken her comments on the selection of participants into account.
It seems there are significant differences of opinion on this matter.
She added the following slide to the analysis:
Also of interest:
She confirmed that there will be an isatuximab trial.
(Wikipedia: "Chemically, isatuximab is similar in structure and reactivity to daratumumab; therefore, both drugs bind to CD38 in the same way. However, isatuximab exhibits greater inhibition of its ectoenzyme function. Isatuximab acts as an allosteric antagonist, inhibiting the enzymatic activity of CD38 in a dose-dependent manner.")
Unfortunately, this is only available to patients who have previously undergone immunadsorption.
I would have loved to have taken part...
She confirmed that there will be an isatuximab trial.
(Wikipedia: "Chemically, isatuximab is similar in structure and reactivity to daratumumab; therefore, both drugs bind to CD38 in the same way. However, isatuximab exhibits greater inhibition of its ectoenzyme function. Isatuximab acts as an allosteric antagonist, inhibiting the enzymatic activity of CD38 in a dose-dependent manner.")
Unfortunately, this is only available to patients who have previously undergone immunadsorption.
I would have loved to have taken part...
This study was done in cooperation with Charité. So the patients were diagnosed with the criteria they use for ME/CFS. As far as I know they use the CCC.CFS_Care was a rehab of 270 people, really unclear what their usual care and rehab arms were and also patient selection is poorly defined. They made 43% of the patients that did the rehab worse.
The summary lays it quite clearly, rehab didn't work it made the patients worse and that Rehab must not be used in this patient group.
A third dropped out as well, due to insurance payment mess. Some of the patients missing data.
This is a very important study because it shows that even when a rehab programme has a somatic understanding of ME/CFS and makes it its top priority to teach the patients pacing and energy management there are still almost half of the patients who get worse during such an in person programme.
At the same time it is really nice to see that patients did profit somewhat. A slight increase in emotional health is a good thing I find.
I hope they will draw the conclusion that they have to go online with offering support to ME patients so that (mild and moderate) patients could chose from a variety of programmes according to what they themselves feel would support them best or are attracted to try out.
Utsikt
Senior Member (Voting Rights)
That’s not at all worth it with 43 % deteriorating.
The positive changes are probably mostly bias, as is common for all questionnaires.
Is there much positive bias left for people visiting the Charite and getting Rehab?
They draw quite different conclusions!
(Riffreporter/Scheibenbogen): The ME/CFS researcher’s conclusion is mixed. “The study shows that learning pacing helps – but patients don’t need to go to a rehabilitation centre to do so.”
(Riffreporter/Deutsche Rentenversicherung Bund (DRV): “As soon as the results are published, we will analyse them, compare them with other research findings and respond as necessary.” The research findings are “still preliminary and therefore cannot serve as a basis for action.”
It sounds as though the pension insurance scheme is refusing to change its procedures solely because of results like these...
The Reha was done by Klinik Bavaria in Kreischa, Saxony.
Riffreporter: “Feedback from participants regarding our rehabilitation programme was overwhelmingly positive,” writes the private organisation.
But: Admission is “unfortunately no longer possible for patients with fatigue at present”
"Three-quarters said that the rehabilitation had helped them significantly or to some extent. Mainly because they learnt pacing."
So it was a good idea to also ask about SF36 and Bell...
V.R.T.
Senior Member (Voting Rights)
No absolutely not! My depression got significantly better when I was GETing myself into oblivion. There is no way it was worth it.
V.R.T.
Senior Member (Voting Rights)
This is really really frustrating. So in order to get into the trial they have to have 'responded' to immunoabsoption, which as we all just saw probably doesn't work.
I am concerned this could affect patient selection in a way that could affect the results. What if the patients who show some kind of 'response' to immunoabsoption are also the people who would be a non responder to anti cd38? I know that might be far fetched but my point is it adds confusion and could potentially skew the trial results, even if just by influencing patient selection - the best patients for cd38 might not fit this criteria. we dont know.
There's no convincing CS though, as we saw today...
Ah, does it? In Visible I'm pretty sure it asks for an average day over the last month.
Felis Catus
Senior Member (Voting Rights)
It's... stupid. I wouldn't have said so if one arm was isatuximab only and they also had an arm with immunadsorption followed by isatuximab. This feels like pushing for her pet theory. It always is in a way but this looks like a missed opportunity.
Jonathan Edwards
Senior Member (Voting Rights)
I think you might expect some sort of signal on symptoms if the problem is autoantibody mediated.
Sounds pretty negative.
Jonathan Edwards
Senior Member (Voting Rights)
But if the fatigue score does not change I think there is a problem. A good effect should show up on Chalder. The problem with Chalder I suspect is more that it will produce a positive result when there isn't one.
Just undergone, or benefitted from immunoadsorption? If it's the latter, it seems like that could lead to some selection of the few participants who actually have an autoimmune disease.
In a large enough group of people with ME/CFS, there will probably be a few people who also have an autoimmune disease, and who thus might improve from immunoadsorption. If you then test another antibody-depleting treatment in just those patients, you might just be again treating the comorbid autoimmune disease present in a few patients by chance.
Maybe I'm misunderstanding something.
You don't understand the context of this study.
It was initiated about four years ago by Scheibenbogen to be able to offer something to moderate patients (have never seen a mild meeting the CCC) in lack of a cure. The goal of the programme was to teach patients pacing and managing the illness and not make them better.
I was very interested to go myself when I had to stop working because the approach sounded very convincing to me. I was setting up a similar programme at home to learn pacing – in order to stabilise my health hopefully. That was a lot of hard work and totally overwhelming. It ended in a nervous breakdown at Christmas three times in a row.
For ergotherapy I had to travel 45 minutes one way and the therapist was helping to manage fatigue and not ME/CFS. To the medical gym it was 30 minutes. Because of the journey I could sometimes not engage in a session – but had to lie down for an hour, rest, and go back home.
At the creative workshop in an institution for folks with disability that I went to because I was anxious that I'd fell into depression all on my own without some outer structure I had regular struggles to protect my boundaries and my health with users with beahavioural health issues who were intrusive. I didn't manage to find a PT who knew ME/CFS as a somatic illness and knew about pacing for two years. I didn't have any familiy to support me. It was hell.
I would have loved to go to that beautiful clinic in Saxony for a couple of weeks!!!
My GP wrote to Dr. Erdmann to inquire whether I had a chance to get in. I therefore know that only Charité patients could go. Getting an appointment there was only possible when you lived in Berlin and maybe Brandenburg.
From the German speaking forum I remember that folks were trying hard to get into that programme and were very disappointed when they couldn't. They were not sent there. Patients desperately wanted to try something.
The sarcasm that is put on that study here is totally misplaced.