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

[Jonathan Edwards]

You can have Sjogrens and schizophrenia, or ITP, SLE, Parkinsons..etc, but ME/CFS nope?

That's right because disabling fatigue is a recognised feature of Sjögren's syndrome so to add in a diagnosis of ME/CFS makes no real sense. And ME/CFS is defined as disabling symptoms without any other explanation because that makes a useful prognostic category.

This isn't really about causal relations either. If someone does not have consistent Ro and/or La then there is no recognisable cause to call "Sjögren's". There is just the syndrome , which is an effect, not a cause. And we know there are several routes to the syndrome.

 

[DHagen]

No this is common sense, nobody with ME/CFS can do a deadlift and not get worse unless they don't have ME/CFS anymore lol. Maybe he is lifting those 2kg rubber dumbells.

There are plenty of pwME who can do things that seem extraordinary to other pwME. For many, the idea that one could stand unaided without triggering PEM is all but unthinkable, while others work full time jobs. I lifted weights for years while mild before finally crashing - I am not alone in this. Others go through periods of remission where they are able to function at a basically normal level without relapsing. There is no absolute here and it is certainly not "common sense" to establish arbitrary boundaries like this. It sure as hell isn't part of the "definition" of ME/CFS.

 

[Pibee]

There are plenty of pwME who can do things that seem extraordinary to other pwME. For many, the idea that one could stand unaided without triggering PEM is all but unthinkable, while others work full time jobs. I lifted weights for years while mild before finally crashing - I am not alone in this. Others go through periods of remission where they are able to function at a basically normal level without relapsing. There is no absolute here and it is certainly not "common sense" to establish arbitrary boundaries like this. It sure as hell isn't part of the "definition" of ME/CFS.

Finally a word of reason.
Defining any disease through solely symptoms obviously doesn't get you much further than an endless online discussion.
You can have MECFS without even one single symptom. Like you can have many other diseases without symptoms. Maybe it's so mild to notice them, or your treatment works & you're in remission. This is how it will hopefully be in future, with biomarkers.

 

[OrganicChilli]

You can have MECFS without even one single symptom.

So as someone who considers ME/CFS to be a symptom you're now saying "you can have a symptom without even a single symptom". That's your second contradiction within a few posts. The other being that you you're making up triggers for your friend's condition as you please.

 

[Pibee]

So as someone who considers ME/CFS to be a symptom you're now saying "you can have a symptom without even a single symptom". That's your second contradiction within a few posts. The other being that you you're making up triggers for your friend's condition as you please.

I am saying MECFS is currently defined through a cluster of symptoms. I didn't say it is a symptom.
I am making up triggers? Are you arguing against someone, Aubry, not knowing what made him suddenly sick and quit work within days and he never recovered after that (vaccine)?
What is the actual problem, disabling fatigue and SFN, his main symptoms, like dysautonomia, tinnitus, SFN, PEM, and brain fog, are listed under Sjogrens' complications.
This is how mainstream medicine sees it, I can't defend a whole branch of science for you, read journals

 

[OrganicChilli]

I don't see a problem with saying Sjogren's is causing symptom X, MECFS is a symptom, a cluster of symptoms, for now.

You claimed his alleged Sjögrens caused his alleged ME/CFS. I challenged that and said you don't know that. You then said his symptoms were triggered by a vaccine. Which is clearly a different trigger and would at least make sense.

In case you weren't aware most papers on ME/CFS are nonsense. Sjogrens papers who claim to know anything about ME/CFS will be even worse.

 

[Rick Sanchez]

I mean the guy tweeted he is weightlifting again. And he is not fully recovered. So by definition, it can't be ME/CFS as any person with ME CFS can only weight lift if they don't have ME CFS. Or, he is fully recovered. Or, it is minor weights like overhead pressing a 2kg dumbell and not deadlifts and squats of bodyweight.

Dont wanna go off topic, but this just isn`t true at all.

A lot of people with progressive MECFS were mild at one point and where able to do sports. Even as the MECFS progresses a decent amount of MECFS patients actually report having an easier time lifting weights than they do cardio (If one had to chose between both). I think this exact phenomena has even been discussed on these forums before, multiple times.

There seems to be some misconception amongst some in the MECFS community that every patient who does physical exercise or pushes themselves too hard will vastly deteriorate. If this were true a large part of MECFS patients would be bedbound or in wheelchairs. Yet only a minority (albeit a significant minority) endure this terrible fate.

The reason I think it is relevant for this topic is that we can`t discount someone`s supposed MECFS because they can lift weights. I think the Norwegian patient who improved is another good example, just like LHS mentioned above. I mean, can MECFS be completely cured? We know that both fulfilled the MECFS criteria. We know that they are better now. A lot of questions we just do not have answers to. Must be humble.

 

[Pibee]

You claimed his alleged Sjögrens caused his alleged ME/CFS. I challenged that and said you don't know that. You then said his symptoms were triggered by a vaccine. Which is clearly a different trigger and would at least make sense.

In case you weren't aware most papers on ME/CFS are nonsense. Sjogrens papers who claim to know anything about ME/CFS will be even worse.

Don't worry, 99% rheumatologists and neurologists have never heard of MECFS, and wouldn't know what PEM stands for, so why bother ?! Of course, they don't mention it, and they never read papers. It's not even mentioned at any neurological conferences, just because something is not mentioned doesn't mean it doesn't exist and doesn't happen in Sjogren's too

The vaccine triggered his Sjogren's symptoms (MECFS, SFN) to explode. He likely had it before with a very few to no symptoms, like many cases. I don't know what to do with your "challenge", what level of proof do you need that Sjogren's can cause dysautonomia ?! will I get paid for this? I am not here to educate you on anything, you can google, I replied only because someone asked me to, but it's a waste of time.

 

[Lisan_Al_Ghaib_87]

There are plenty of pwME who can do things that seem extraordinary to other pwME. For many, the idea that one could stand unaided without triggering PEM is all but unthinkable, while others work full time jobs. I lifted weights for years while mild before finally crashing - I am not alone in this. Others go through periods of remission where they are able to function at a basically normal level without relapsing. There is no absolute here and it is certainly not "common sense" to establish arbitrary boundaries like this. It sure as hell isn't part of the "definition" of ME/CFS.

Undoubtably there is no one size fits all capacity in ME/CFS for obvious reason and we cannot whatsoever establish contours or frame approximately a-z functionalities , however the scientifical and medical community agrees on one perceivable symptom which is unique ( or almost unique) to ME/CFS i.e. unproportionally exacerbation of symptoms after exertion.

Def we need more info on the person's pre-ME/CFS, pre-treatment and post treatment capacity to evaluate correctly what's happening however Classical Weight Lifting without PEM/PENE fells under the spectrum of healthy person activity?! As you said you lifted during your mild/very mild period but you ended crashing.

Edit: definitely went of topic!

 

[alalush]

I mean the guy tweeted he is weightlifting again. And he is not fully recovered. So by definition, it can't be ME/CFS as any person with ME CFS can only weight lift if they don't have ME CFS. Or, he is fully recovered. Or, it is minor weights like overhead pressing a 2kg dumbell and not deadlifts and squats of bodyweight.

I stopped Romanian deadlifting due to lower back problems.
I am NOT fully recovered. If my functioning was about 25% before daratumumab, it is nowadays about 40% I would say.
I still have tremendous fatigue, horrible burning painful small fiber neuropathy, sleep problems, lung dyrness, and even PEM.
It's not because I can do some weight lifting, that one is in remission. There are many degrees.

My 5 last workouts:

alalush | Late night workout

alalush's workout

hevy.com

alalush | Evening workout ️

alalush's workout

hevy.com

alalush | Late night workout

alalush's workout

hevy.com

alalush | Afternoon workout

alalush's workout

hevy.com

alalush | Evening workout ️

alalush's workout

hevy.com

 

[OrganicChilli]

Don't worry, 99% rheumatologists and neurologists have never heard of MECFS, and wouldn't know what PEM stands for, so why bother ?! Of course, they don't mention it, and they never read papers. It's not even mentioned at any neurological conferences, just because something is not mentioned doesn't mean it doesn't exist and doesn't happen in Sjogren's too

The vaccine triggered his Sjogren's symptoms (MECFS, SFN) to explode. He likely had it before with a very few to no symptoms, like many cases. I don't know what to do with your "challenge", what level of proof do you need that Sjogren's can cause dysautonomia ?! will I get paid for this? I am not here to educate you on anything, you can google, I replied only because someone asked me to, but it's a waste of time.

P

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

Today at 6:24 PM

I know this guy on Twitter, a Belgian ? I m pretty sure that he doesn’t have MECFS. He is not a good example.

Belgian Twitter guy is my best friend, I know him for 10 yrs, he has MECFS from SJogrens, it's one of symptoms he has PEM and he was very severe housebound for 10 yrs. I shared his steps recently on other forum. I don't know have they been posted here, I'll share again

Those who read any papers ever on Sjogrens know that it can cause MS, MG, CIDP, GBS, and a number of other neurological conditions like POTS and obviously PEM/MECFS.

• Pibee

• 

You said right here he has ME/CFS because of sjogrens. Two posts down it's suddenly the vaccine. It's nonsense to claim Sjögrens causes ME/CFS or PEM. We have little to no evidence for ME/CFS itself, we don't have any evidence of a connection with Sjögrens. Many researchers write just whatever they want and you take it at face value.

 

[Pibee]

Your claim is that Sjogren's causes ME/CFS and made it sound like that's you're friend's problem before mentioning a vaccine. Which is nonsense no matter how many Sjögrens papers claim it. Maybe he has both, maybe he has neither, maybe he has just one of them. But you're mixing up concepts.

jeeez. Maybe he has neither? lol. he has biopsy-proven SSA-positive and ultrasound positive Sjogrens
MECFS he has because HE SAYS SO lol, that's how your MECFS illness is defined, my mom, my aunt, my uncle, my neighbor, all can get MECFS diagnosis, you just come to the doctor and say you have those symptoms. So if you argue against Aubry's own claims about symptoms he has, then you're probably breaking the rules of this forum because I remember well many MECFS patients get offended if you tell them they don't have MECFS, because they have trauma from gaslighting.

Yes, Sjogren's is causing his MECFS. Not everyone's. Clearly.

 

[OrganicChilli]

Yes, Sjogren's is causing his MECFS. Not everyone's. Clearly.

That's just plain nonsense and unscientific. I don't know why you're so adamant to go down this route when you have nothing to gain from it.

 

[Pibee]

That's just plain nonsense and unscientific. I don't know why you're so adamant to go down this route when you have nothing to gain from it.

That's how it is with fatigue, when an MS patient has debilitating fatigue, they don't know as well what's causing it, but they assume it's MS. If you want strict scientific precision, medicine is the wrong field for you, dear, in 2026 at least. Sometimes they're wrong. My friend had severe constipation for years, thought it was from his severe MS, but turned out he had cancer at 36, and he died from colon cancer spread to liver, he found out at the ER while already dying. But obviously, these are exceptions. So, in medicine, which is not a perfect science, you can say Sjogrens is causing debiliating fatigue with PEM.

 

[OrganicChilli]

That's how it is with fatigue, when an MS patient has debilitating fatigue, they don't know as well what's causing it, but they assume it's MS. If you want strict scientific precision,

Well ME/CFS isn't fatigue so that's a non-starter anyway. Some pwME don't even have debilitating or chronic fatigue. If his condition(s) was triggered by a vaccine that I can accept. If he has legit PEM, he has ME/CFS. But he doesn't have either because of sjogrens. He can have them separately.