DiBelloBr
Established Member
At least the field is moving away from the distinction between primary and secondary Sjögren’s syndrome, toward simply referring to Sjögren’s disease, whether isolated or associated with another autoimmune condition.
Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing
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Jonathan Edwards
Senior Member (Voting Rights)
That may be so in terms of fashions at meetings and in publications. Sadly, all of this is driven by the RheumoTwitterati these days. Sjögren's disease sounds like a muddled idea. Not that I ever liked the primary nomenclature much. This is a paradigmatic situation where the popular concept of ' a disease' or 'a diagnosis' falls down because it isn't actually what medicine is about - which is using epidemiological data sets to derive prognostic information from a whole range of overlapping and interacting features for each individual person.
The following posts were moved from Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al
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So if you think saying that Sjogrens is able to cause MECFS threatens identity of MECFS (why don't MS or GBS patients feel that way?), you can say he has a mystery illness that causes him to be able to walk 200-300 steps a day for a decade, and if he pushes for more, he is exhausted, even crashing for weeks (I remember he forced-walk in 2016 few days and then took 6 weeks to even improve a bit and got herpes reactivation). But cool, don't call it MECFS.
The moved posts followed this post in that thread:
So if you think saying that Sjogrens is able to cause MECFS threatens identity of MECFS (why don't MS or GBS patients feel that way?), you can say he has a mystery illness that causes him to be able to walk 200-300 steps a day for a decade, and if he pushes for more, he is exhausted, even crashing for weeks (I remember he forced-walk in 2016 few days and then took 6 weeks to even improve a bit and got herpes reactivation). But cool, don't call it MECFS.
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OrganicChilli
Senior Member (Voting Rights)
Doesn't mean Sjögrens caused anything. If he has ME/CFS who knows what the trigger was.
V.R.T.
Senior Member (Voting Rights)
I hadn't heard this - can Sjogrens really cause MS?
From your description it does sound like your friend has MECFS. What I find frustrating is people saying that 'we know x thing causes MECFS' without good evidence. I've not heard about MECFS being triggered by an autoimmune disease before. Perhaps they were triggered by the same infection?
I'm not completely dismissing it but I'd never heard that before
The trigger for all symptoms he has was 4 vaccines in a row, over 1 month, in 2014.
I am not sure why you think it's not clear what symptoms Sjogren's is causing for him; it is pretty much mainstream medicine by now. It seems on this forum, the scientific data that you haven't had time to read is considered not true, as if it doesn't exist.
Why would you hear about it? Do you regularly read medical journals on neurological involvement in Sjogren's?
I don't see a problem with saying Sjogren's is causing symptom X, MECFS is a symptom, a cluster of symptoms, for now.
V.R.T.
Senior Member (Voting Rights)
So the same trigger seems to have caused the MECFS and Sjogrens. I've heard of that happening after covid too.
Perhaps there is a clue in the fact they sometimes appear together
V.R.T.
Senior Member (Voting Rights)
MECFS is a syndrome not a symptom.
OrganicChilli
Senior Member (Voting Rights)
I didn't even say anything about symptoms. I said you don't know that another illness triggered his alleged ME/CFS.
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Jonathan Edwards
Senior Member (Voting Rights)
It would be a mistake to call it ME/CFS if there are documented autoantibodies like Ro or La because it would then be very unlikely that any response to a B cell related treatment could be usefully extrapolated to people with ME/CFS (without the autoantibody). And the whole point of diagnostic categories is to extrapolate prognosis.
MECFS, SFN, and others are common symptoms of Sjogren's. Unfortunately, until we know what MECFS is, nobody can prove their point.
for example, Sjogren's is known to cause NMOSD too, but it's so so rare, probably as rare as MECFS, but diagnosable, that most MDs won't think of wheelchair and going blind from Sjogren's, because it's basically an exception. Maybe that is the case for a subset of Sjogren's patients with MECFS presentation.
He doesnt have always Ro, in most labs it's negative, in some positive. Just like me. Although his case of Sjo is more clear. And his PEM is much bigger than mine.
From what I remember, Sjogrens is listed as possible comorbidity to MECFS so you can have both diagnosis. For me, it's what I said, it's just another presentation that might be very rare.
Jonathan Edwards
Senior Member (Voting Rights)
Well, we know all about lists of co-morbidities with ME/CFS.
That is a pretty sure sign of make believe.
Well, we know all about lists of co-morbidities with ME/CFS.
That is a pretty sure sign of make believe.
You can have Sjogrens and schizophrenia, or ITP, SLE, Parkinsons..etc, but ME/CFS nope? maybe only on this forum, indeed.
Jonathan Edwards
Senior Member (Voting Rights)
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.
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.
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
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OrganicChilli
Senior Member (Voting Rights)
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.