Poll - Have you been tested for Sjogren's Syndrome?

[Pibee]

I am really having trouble following what you’re saying. My point was that I suspect that people are using PEM to describe things that aren’t actually PEM lately, not that people with other diseases can’t have PEM.

Please stop accusing people of gaslighting. No one is doing any such thing, and it’s not conducive to polite discussion.

But that cant be proven so if someone has Sjogrens you cant automatically claim they misunderstood what's PEM and think they have it but if they don't have Sjogrens then they automatically do have MECFS and If i tell that person they don't have MECFS I must be gaslighting them.

 

[Verity]

But that cant be proven so if someone has Sjogrens you cant automatically claim they misunderstood what's PEM and think they have it but if they don't have Sjogrens then they automatically do have MECFS and If i tell that person they don't have MECFS I must be gaslighting them.

I never said someone with Sjogren’s who claims to have PEM should be automatically dismissed. My point is that we can’t unquestioningly believe that everyone who claims to have PEM really has it.

As far as gaslighting, being careful about what accept as fact on a forum that is meant for evidence-based discussion is not gaslighting. If you want to promote this idea without getting critiqued, there are other venues for that.

 

[Utsikt]

@Pibee

You keep making claim after claim but you’re not providing any sources and you’re not engaging with any of the critique or questions other than calling us ignorant and gaslighters. That might be your way of debating things, but it’s not mine so I’m going to back out of this for now.

 

[Verity]

Because Sjogrens is caused by B cells hyperactivity SOMETIMES causing numerous neurological antibodies , high total IgG etc, and MECFS is sometimes a severe complication, same like CIDP or NMOSD is a "rare" complication of Sjogrens disease.
(or not so rare, depends which research results you take).

This is the case if MECFS is autoantibodies mediated illness which is currently favorite theory. If there are 2 separate illnesses that look so much alike and that's proven in the future it is possible Sjogrens is not causing MECFS in patients who have both: but then it is still possible that it causes something as close to MECFS as possible so there are still people misdiagnosed

This is all extremely speculative. Nothing here offers proof for your claim.

 

[Verity]

I am going to back out as well. Getting close to my cognitive limit for the day.

 

[Pibee]

I find it humorous that you would ask for proof that anything causes MECFS when we don't know what MECFS is AND WE CAN'T MEASURE IT. This is asking me to solve the MECFS puzzle, and because you know I cant solve it you dismiss my claims. The only proof that you cant Google directly yourself (because it seems you don't care about the published studies that you can Google), I can provide is hundreds of reports from patients who have SjD and who had symptoms of MECFS as a neurological complication of their disease that is multisystemic /unlike MECFS.

 

[Verity]

I do want to respond to something specific real quick before I go, though.

Because Sjogrens is caused by B cells hyperactivity SOMETIMES causing numerous neurological antibodies , high total IgG etc, and MECFS is sometimes a severe complication

I asked you how you know Sjogren’s can cause ME. Your response here is that you know Sjogren’s causes ME because ME is sometimes a severe complication of Sjogren’s. That’s a circular argument. That’s why we’re having a hard time engaging with what you’re saying. If you can fix that, we can have a productive discussion.

 

[Pibee]

No, I didn’t say that — I said it can cause it, because it’s listed among the neurological complications of Sjögren’s on the ESSDAI (both PNS and CNS involvement). ME/CFS is very close to dysautonomia, and we don’t even know whether PEM is just a symptom of dysautonomia that some people have and others don’t (which I’m inclined to believe).

So basically, it is listed as a symptom. But because PEM or ME/CFS isn’t terminology that rheumatologists or neurologists typically use — since it can’t be objectively measured — it won’t be worded that way in the official criteria until it can be quantified.
Actually, one of the common criticisms of the new criteria (which now include SFN) is that they still omit dysautonomia/POTS, even though it’s directly caused by SFN and should therefore be included in the grading system — as well as step count.

So, changes in Sjögren’s research are progressing as slowly as in ME/CFS, largely because most rheumatologists have never heard of SFN or that it can cause serious disabilities like dysautonomia. Some even still claim, like Jonathan Edwards, that SjD is not related to SFN — despite SFN now being officially included in the disease criteria. Such claims are slowing down the field and keeping younger patients undiagnosed for longer. (And yes, the fact that 61% of the 55 patients in this thread were never checked for SjD still points to a significant problem.)

Speaking of this — are you aware that, officially, the European League Against Rheumatism (EULAR) states that in patients with SjD who have SFN, Sjögren’s disease is causing their SFN (pain or autonomic dysautonomias such as POTS or OI)?
So I’m not sure why it’s not extrapolated that they hold the same position on SjD causing PEM/ME in patients who have both, if they clearly recognize these as secondary neurological manifestations. (They don’t discuss PEM specifically, as I said, because it’s not yet measurable — and none of the neurological conferences are addressing it either, since they tend to be slow to accept syndromes before measurable data exist.)
So, to argue against ME/CFS as a symptom of SjD while SFN and POTS are officially recognized symptoms sounds like ideology, not science.

 

[Pibee]

From the new ESSDAI update from the EULAR. Mind you, Johnathan Edward was claiming in 2025 or 2024 that SjD has absolutely no relation to SFN, in a response to some of my posts that you can easily find.

So the rheumatologist society is claiming SjD can cause as serious and severe disease as CIDP and MS-like, NMOSD (and transverse myelitis) etc, but no ME because S4ME members claim so for unknown reasons? Even though SFN is the actual most common neuro manifestation of SjD and one of the most common comorbidities of MECFS? Give me a break. Start reading other research besides very limited MECFS-related one to widen your horizons.

So the official (not only Pibee's opinion), but the OFFICIAL Rheumatologist Society claim is SjD can cause CIDP, NMOSD, SFN. While SFN, NMOSD or CIDP can not cause SjD *doh, hopefully doesn't need to be explained. Adding ME to the list will be possible when the neurological society recognizes it.

 

[bobbler]

I think maybe the problem is that Sjögren's syndrome isn't actually a very useful term. It does not focus on a single concept. It no longer has much to do with what Sjögren described I suspect.

We know that SSA and SSB (Ro and La) autoantibodies can be associated with a range of things like exocrine lymphoid infiltrates, sicca, neuropathies, and hyperglobulinaemia, but these show up often in different people who go to different clinics. And most people with the antibodies never go to clinics. Like ANA and rheumatoid factor there are almost certainly more people in the community with Ro and/or La antibodies who do not have Sjögren's than people who do, despite there being a genuine link. (The rate in normal people is likely around 1-5%.)

It would be reasonable to discuss whether Ro or La antibodies can cause ME/CFS but not whether Sjögren's (another syndrome) does. When I first joined these forums I thought it quite likely that Sjögren's fatigue was pretty similar to ME/CFS but having listened to people with ME/CFS I no longer think that likely. My Sjögren's patients (who all had sicca) didn't describe things the same way.

thank you for confirming this. I've often slightly thought of this one on my to-do list particularly since I had proper dry eyes diagnosed by opthamologist who at the time said there was no need to investigate because the treatment was the same (using eye drops) years ago, but it had plagued me for a long time before that.

But there is always that feeling of if there was something I just hadn't been brave enough to ask or able to push for compared to those who haven't been through what I have and I could be less ill. A lot of these things I've resigned myself to those alternatives not getting as ill and debilitated as this even if left without diagnosis for a long time when making my risk vs likelihood calculations in case I unnecessarily waste my life then find out later I had something treatable.

I can spend years working up courage to even ask for a test because I've felt like if I asked for too many I'll (as a person who genuinely seems to have a face doesn't fit situation vs other people) end up with a label of hypochondriac if it isn't that so I somehow need to be sure I only ask if I might definitely have it.

What I have been through for all these years means even now even if someone is being the ideal medical person I am [rightly] utterly terrified of interactions and mentioning or not hiding what my symptoms are (in all these years I've never done what others I know with other illnesses have been able to do and just write down their symptoms in a list and have it read) because I'm so sensitive of what they get re-written or misinterpreted as/used as fodder.

If only there was good specific vocab and opportunity for discussion with HCPs into different types of exhaustion and its patterns and sleep issues and the things that you just get that awful cringe feeling the person opposite you is half-listening to summarise into generic fatigue or brain fog (and thinking 'behavioural') so I could feel brave enough to feel like telling someone anywhere near the reality of my situation wouldn't just put me at risk but could get somewhere even if it was just peace of mind.

 

[Verity]

No, I didn’t say that — I said it can cause it, because it’s listed among the neurological complications of Sjögren’s on the ESSDAI (both PNS and CNS involvement). ME/CFS is very close to dysautonomia, and we don’t even know whether PEM is just a symptom of dysautonomia that some people have and others don’t (which I’m inclined to believe).

So basically, it is listed as a symptom. But because PEM or ME/CFS isn’t terminology that rheumatologists or neurologists typically use — since it can’t be objectively measured — it won’t be worded that way in the official criteria until it can be quantified.

You are still making a circular argument. “ME can be caused by Sjogren’s because my personal interpretation of the symptoms of Sjogren’s reads ME into them.”

PEM is not “basically” listed as a symptom of Sjogren’s. You are making a massive leap to say that it is.

Speaking of this — are you aware that, officially, the European League Against Rheumatism (EULAR) states that in patients with SjD who have SFN, Sjögren’s disease is causing their SFN (pain or autonomic dysautonomias such as POTS or OI)?
So I’m not sure why it’s not extrapolated that they hold the same position on SjD causing PEM/ME in patients who have both, if they clearly recognize these as secondary neurological manifestations. (They don’t discuss PEM specifically, as I said, because it’s not yet measurable — and none of the neurological conferences are addressing it either, since they tend to be slow to accept syndromes before measurable data exist.)

It makes no difference to me if Sjogren’s can cause OI. You cannot assume that something which can (allegedly) cause dysautonomia can therefore cause ME. You also cannot assume that some rheumatologists think Sjogren’s can cause ME when all they’ve said is it causes other things that you think are related to ME.

Even though SFN is the actual most common neuro manifestation of SjD and one of the most common comorbidities of MECFS?

This doesn’t matter at all. The argument you’re making is like saying borderline personality disorder must cause autism because it can cause depression, and depression is a common comorbidity with autism. That is clearly not true.

 

[Pibee]

This doesn’t matter at all. The argument you’re making is like saying borderline personality disorder must cause autism because it can cause depression, and depression is a common comorbidity with autism. That is clearly not true.

This is not math. and you're again making flawed argument that MECFS and SjD are 2 comparable variables, while SjD is multi-variables and MECFS is a single one.

I am not making circular arguments, you're letting your subjective bias influence your judgement, putting too big emphasis of PEM (a cluster of symptoms and nothing else), as something special, unique, and incomparable to other neuro-immune illnesses (at the same time researchers are using only common autoimmune treatments to attempt to treat MECFS, lol), just because it's your personal experience with PEM that is so bad, you're letting that cloud objective judgement. They don't list every single [cluster of ] symptoms in the huge list of neurological complications of SjD. As mentioned, they didn't name POTS even tho SFN is named, we still know POTS is a part of SFN symptoms, and caused by SjD in patients who have both. Why this is not applied to MECFS is in cases when the person making claims is unfamiliar with systemic autoimmune diseases like SLE or SjD, or if they're subjective and argue out of fear that if we admit SjD can cause MECFS that it means MECFS will never be recognized as a true disease. So this is emotional argument.

 

[Jonathan Edwards]

I have never heard of a concept of 'Sjogren's disease' causing symptoms in Sjogren's syndrome. That sounds very muddled.

If there is a central concept to primary Sjogrens syndrome it is the presence of pathogenic Ro and La antibodies. The vast majority of people with ME/CFS do not have these. Moreover, if Ro and La antibdoies are present we can say there is a recognisable cause for fatigue so the diagnosis of ME/CFS, which excludes such known causes as part of the way it is defined and conceived.

I have never seen anyone in a textbook or article say that Sjogren's causes ME/CFS. It wouldn't surprise me that in the current hype situation around neurosjogrens that people might , but it is an oxymoron.

We all recognise that Sjogren's includes fatigue. Just as lupus does. Lupus does not cause ME/CFS either.

The real problem is that 'Sjogren's" is another of these labels that attracts people who feel ill and for whom doctors cannot offer explanations or treatments and it attracts doctors who are prepared to muddle everything up and claim their disease causes everything and is associated with all the other diseases that cause everything. We need to find out what is wrong with all these people but ME/CFS is not caused by Ro and La antibodies. It doesn't look very likely that it is caused by antibodies at all, and certainly not general B cell hyperactivity (which is seen in some Sjogren's cases but not others).

It gets depressing when people cheerlead for particular diseases and dismiss everyone else as ignorant and stupid but the critical spirit does seem to hold its own.

I too think it is time to put this to bed.

 

[Trish]

I haven't been able to read most of this fast moving thread.
In an earlier post it was stated that ME/CFS is defined by a set of symptoms. That's true, but the definition also includes 'that are not caused by another condition'.

So surely if someone has diagnosed Sjogrens, and their Sjogrens symptoms include all the core symptoms of ME/CFS, they should not be diagnosed with ME/CFS as well as Sjogrens unless they already had a clear diagnoses of ME/CFS without Sjogrens first, or unless some time after the Sjogrens onset they had a clear onset of ME/CFS triggered, for example, by EBV or Covid and this produces additional symptoms they didn'texperience with Sjogrens. Then they might have two comorbid conditions.

Since there is currently no effective treatment for ME/CFS, I don’t understand why someone with Sjogrens would need to insist their Sjogrens has caused ME/CFS just because of overlapping symptoms.
Someone with any condition that includes true PEM would need to be educated about not trying to exercise their way out of it, but that's about good management, not treatment. And the only other effective treatments for ME/CFS are for easing some symptoms such as pain, not for the illness itself.

 

[Evergreen]

Kim et al. 2023 (Scheibenbogen's team) published a study called Characterizing Sjögren-Associated Fatigue: A Distinct Phenotype from ME/CFS. Their starting point was:

A subgroup of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) patients is known to display sicca symptoms, the cardinal symptom of pSS, and even fulfill diagnosis criteria for seronegative pSS [6,7]. This led to the speculation that the two disorders share common pathophysiological and clinical features.

References 6 & 7 are:

• 6.Nishikai M., Akiya K., Tojo T., Onoda N., Tani M., Shimizu K. ‘Seronegative’ Sjogren’s syndrome manifested as a subset of chronic fatigue syndrome. Br. J. Rheumatol. 1996;35:471–474. doi: 10.1093/rheumatology/35.5.471. [DOI] [PubMed] [Google Scholar]
• 7.Sirois D.A., Natelson B. Clinicopathological findings consistent with primary Sjogren’s syndrome in a subset of patients diagnosed with chronic fatigue syndrome: Preliminary observations. J. Rheumatol. 2001;28:126–131. [PubMed] [Google Scholar]

Reference 6, Nishikai 1996, found:

One-third of the CFS patients with sicca symptoms fulfilled the diagnostic criteria for SS. However, they were 'seronegative', differing from the ordinary primary SS.

Reference 7, Sirois & Natelson 2001, found:

Results: Mucosal dryness was reported by 13/25 (52%) subjects with CFS, of which 8 (32%) also had MSG score, low Schirmer test value, and symptoms consistent with primary SS (p = 0.05). No control subject met diagnostic criteria for primary SS. MSG focus scores < or =1 were common among both groups (CFS 14/25; controls 15/18). MSG results without pathological alteration were rare, seen in only one control and no CFS patients. Low Schirmer values were found in 10/25 (40%) CFS patients and 1/18 (6%) control (p = 0.01).

Conclusion: A subset of patients with CFS may have primary SS.

Kim et al. 2023 concluded [bolding added]:

In conclusion, our study identified a subgroup of pSS patients with severe fatigue who exhibited numerous symptoms commonly associated with ME/CFS. However, only 22% of pSS patients would have fulfilled the CCC if not for their pre-existing diagnosis of pSS mostly due to the absence of PEM lasting more than 24 h. Additionally, patients with pSS reported no relevant PEM after physical exertion and showed resilience to physical exertion in repeated HGS measurements. Thus, we found the absence of ‘physical exertion triggered PEM’ to be a key difference in clinical presentation of pSS compared to ME/CFS, which may help in distinguishing between the two conditions. Furthermore, this finding is also important in disease management, as physical activity does not seem to worsen fatigue severity in pSS. Therefore, patients should not be reluctant to maintain a healthy level of physical activity.

 

[Pibee]

I have never heard of a concept of 'Sjogren's disease' causing symptoms in Sjogren's syndrome. That sounds very muddled.

If there is a central concept to primary Sjogrens syndrome it is the presence of pathogenic Ro and La antibodies. The vast majority of people with ME/CFS do not have these. Moreover, if Ro and La antibdoies are present we can say there is a recognisable cause for fatigue so the diagnosis of ME/CFS, which excludes such known causes as part of the way it is defined and conceived.

I have never seen anyone in a textbook or article say that Sjogren's causes ME/CFS. It wouldn't surprise me that in the current hype situation around neurosjogrens that people might , but it is an oxymoron.

We all recognise that Sjogren's includes fatigue. Just as lupus does. Lupus does not cause ME/CFS either.

The real problem is that 'Sjogren's" is another of these labels that attracts people who feel ill and for whom doctors cannot offer explanations or treatments and it attracts doctors who are prepared to muddle everything up and claim their disease causes everything and is associated with all the other diseases that cause everything. We need to find out what is wrong with all these people but ME/CFS is not caused by Ro and La antibodies. It doesn't look very likely that it is caused by antibodies at all, and certainly not general B cell hyperactivity (which is seen in some Sjogren's cases but not others).

It gets depressing when people cheerlead for particular diseases and dismiss everyone else as ignorant and stupid but the critical spirit does seem to hold its own.

I too think it is time to put this to bed.

They literally dropped primary Sjogrens and yes it's called a disease from 2025.
I stopped reading after that because we want to be up to date and not continue to spread misinformation. Another thing that I hate is that I have to explain the obvious; why it matters if someone who has SjD and MECFS that their ME is caused by SjD? Because SjD is treatable condition with drugs getting approved in 2025 and there is much more known about it than about ME, thus these people can get more help, potentially. Plus, it is known to attack also organs like liver and lung and should be monitored, as well as salivary gland ultrasounds for lymphoma risk. These were the instructions I got in 2019 when the neurologist I saw said because my ME is from SjD it is treatable and she added to monitor the organs every year.

 

[Utsikt]

They literally dropped primary Sjogrens and yes it's called a disease from 2025.
I stopped reading after that because we want to be up to date and not continue to spread misinformation

I think you are referring to this?

2023 International Rome consensus for the nomenclature of Sjögren disease - Nature Reviews Rheumatology

In this Consensus Statement, an international group of experts and patient representatives validates and endorses the transition from the term ‘Sjögren syndrome’ to ‘Sjögren disease’, and issue several additional recommendations regarding the nomenclature of this disorder.

www.nature.com

Would anyone be able to make a thread for it?

 

[Trish]

They literally dropped primary Sjogrens and yes it's called a disease from 2025.
I stopped reading after that because we want to be up to date and not continue to spread misinformation. Another thing that I hate is that I have to explain the obvious; why it matters if someone who has SjD and MECFS that their ME is caused by SjD? Because SjD is treatable condition with drugs getting approved in 2025 and there is much more known about it than about ME, thus these people can get more help, potentially. Plus, it is known to attack also organs like liver and lung and should be monitored, as well as salivary gland ultrasounds for lymphoma risk. These were the instructions I got in 2019 when the neurologist I saw said because my ME is from SjD it is treatable and she added to monitor the organs every year.

Wouldn't that be classed as misdiagnosis of Sjogrens as ME/CFS?

If someone has Sjogrens and that diagnosis is missed, and they are instead diagnosed as ME/CFS, then clearly they need to get the correct diagnosis and treatment.

Sadly significant numbers of people with other conditions, including treatable ones, are misdiagnosed as having ME/CFS. If they turn out to have another condition that can cause those symptoms, then by definition they don't have ME/CFS, because the definition of ME/CFS requires a pattern of symptoms that are not explained by another condition they have.

Of course it's possible for someone to have comorbid ME/CFS and Sjogrens, but that doesn't mean the Sjogrens caused the ME/CFS, it must, by definition, have a different trigger such as Covid or EBV. If the 'ME/CFS symptoms' are caused by Sjogrens, they are part of Sjogrens, not ME/CFS.

I think I'm going around in circles. I'm not sure the semantics matter, the main thing from a patient perspective is they get the right diagnosis and treatment for whatever they have.

 

[Pibee]

Wouldn't that be classed as misdiagnosis of Sjogrens as ME/CFS?

If someone has Sjogrens and that diagnosis is missed, and they are instead diagnosed as ME/CFS, then clearly they need to get the correct diagnosis and treatment.

Sadly significant numbers of people with other conditions, including treatable ones, are misdiagnosed as having ME/CFS. If they turn out to have another condition that can cause those symptoms, then by definition they don't have ME/CFS, because the definition of ME/CFS requires a pattern of symptoms that are not explained by another condition they have.

Of course it's possible for someone to have comorbid ME/CFS and Sjogrens, but that doesn't mean the Sjogrens caused the ME/CFS, it must, by definition, have a different trigger such as Covid or EBV. If the 'ME/CFS symptoms' are caused by Sjogrens, they are part of Sjogrens, not ME/CFS.

I think I'm going around in circles. I'm not sure the semantics matter, the main thing from a patient perspective is they get the right diagnosis and treatment for whatever they have.

According to the EULAR criteria for neurological involvements of SjD: it wouldn't be a misdiagnosis. Per their criteria SjD can cause CIDP, MS-like and NMOSD/TM and TN (Trigeminal neuralgia ) - would you say TN is a misdiagnosis just because SjD was causing it?
Also other complications in other systems like: autoimmune hepatitis, ITP etc.
And with MECFS, ,because there is no biomarker, it is even harder to speak it is a 'misdiagnosis'. If someone says they have PEM or ME ,we have to believe them, right?!

I just run into this: Autonomic nervous system dysfunction (AD) occurs in a large proportion (54%) of Danish patients with SLE.
Very surprised by this number, although the % is still higher in SjD