Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing

[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!

 

[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.

https://www.s4me.info/threads/plasm...dy-2025-fluge-et-al.44736/page-34#post-681545

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.

 

[Violeta]

Is a B12 deficiency common in people with Sjogren's? I've read that they are six times more likely to develop a deficiency and right now my doctor is testing me as I've been extremely fatigued for several months and started having neurological problems.

Have you seen this study about efferocytosis with respect to Sjogren's?

I found this because @mariovitali has been talking about efferocytosis, so I am looking up autoimmune diseases to see if it is involved in them.

There is a supplement that helps with this, if you are interested.

Defective Efferocytosis in a Murine Model of Sjögren’s Syndrome Is Mediated by Dysfunctional Mer Tyrosine Kinase Receptor​

https://pmc.ncbi.nlm.nih.gov/articles/PMC8466327/i

 

[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.

 

[Pibee]

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.

He has fatigue; most MECFS patients have fatigue, not all. It is sad that we have to analyse the words because there are no biomarkers. The thing is, he claims to have PEM, and needs to pace, etc., if he didn't admit having Sjogren's, nobody would accuse him of not having MECFS, like it's some kind of competition, exclusive club.

I think it seems your MECFS identity is jeopardized when I claim Sjogren's can cause it, it is emotional response, like as if my claim diminishes MECFS level of seriousness, which shouldn't be the case. If you ever read papers you'll see many many cases of CIDP or NMOSD claimed to be caused by Sjogrens, while in other papers it's stated as a comorbidity, the first papers are a view of academic medicine /research, and 2nd is more clinical approach as some neurologists, reasonably, find mild dryness trivial in a patient who is getting blind and can't walk from NMOSD.
Sjogren's is a systemic illness that can attack multiple organ systems in body. SFN is included in list of possible complications and you get ESSDAI points for it, PEM isn't included yet because rheumatologists have never heard of PEM because neurologists don't recognize it.

 

[OrganicChilli]

I think it seems your MECFS identity is jeopardized when I claim Sjogren's can cause it, it is emotional response, like as if my claim diminishes MECFS level of seriousness, which shouldn't be the case.

No, I'm saying that currently nobody can say definitely that Sjogren's causes ME/CFS. They should be looked at as two separate conditions, but at the same time we can't rule out comorbidity.

 

[Pibee]

Gotta love deleting my posts.
I was saying it makes no sense because we can just say some MS patients' fatigue, sleep disorder and brain fog are caused by his MS. The same applies to Sjogren's!

As for neuro involvement, the animal model of SLE - the MRL/lpr mouse- is considered, according to some researchers, the best model of neurosjogrens. Anti-SSA/Ro antibodies show up in only a subset of animals, anti-Ro52 (30%), and even a much lower % have anti-Ro60.
However, MRL/lpr mice develop neurological involvement very early in their life - thermal hyperalgesia, mechanical allodynia, and spontaneous pain behaviors from ~12–16 weeks (equivalent to human adolescence /early adulthood), consistent with a small fiber neuropathy–like phenotype. This is accompanied by clear pathology at the level of the dorsal root ganglia (DRG) .
So, this model includes exocrine involvement, SFN-like pain phenotype, and DRG-centered neuroinflammation in the absence of consistent SSA positivity.

(if you want to know more, you'll simply read studies)

and from MECFS UK org:
https://meassociation.org.uk/medica...anglionitis-and-post-mortem-research-into-me/

A dorsal root ganglion forms part of the sensory nerve root that enters the spinal cord – so it’s involved in processing sensory information. Inflammation in a DRG could therefore result in some of the sensory symptoms that occur in ME – pain, loss of sensation, abnormal sensations (paraesthesiae). And it's interesting to note the presence of dorsal root ganglionitis in an autoimmune condition called Sjögren's Syndrome has been linked to a peripheral neuropathy that is sometimes seen in this condition.

Although ganglionitis means inflammation, and this may well involve infection, the relationship to ME/CFS remains uncertain as this is only a preliminary finding in a small number of post-mortem cases

 

[OrganicChilli]

In other words causation is not established. It's just a bunch of assumptions because we don't have enough data from ME/CFS patients.