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

[darrellpf]

I'll speak from my experience about how medical testing occurs here.

GP's are unattainable for most. Specialists have months or years long waiting lists.

Any doctor I do get to see looks for the shortest exit, so if a syndrome says muscle pain then they prescribe for muscle pain. If you're lucky, the doc has the time and there is suspicion there might be a problem they run a screening test. Note the chances of seeing the same doc is near impossible and the medical records are somewhat localized to the doc/clinic. This doesn't work for diseases/consition that require a GP quarterback and seem to be resolved in one visit.

The screening tests are often just that. To save money, any secondary tests are not done of the screening fails. If an ANA test is done and comes back negative then further tests are kicked out by the lab. Report comes back to the GP, nothing is flagged so no follow-up is done. This also happens here with thyroid tests too. Even is there is a box for the GP to override, it is unlikely done. Often the specialist has to specifically ask. GP has to have strong evidence to move the patient forward. The result is that rare diagnoses become rarer.

Summary research papers look at large amount of data and conclude that there is no correlation, so rare diseases get rarer.

An AI is "trained" in so much data that they produce "conventional wisdom". Getting it to produce a plausible radical alternative is difficult. For instance, homosexuality stopped being a disease when it was removed from the DSM. We no longer talk to parents about the "medical risks of homosexuality " but there are many current stories about "autism risks"

 

[Pibee]

@Pibee what does any of those studies have to do with ME/CFS?

If you’re saying that Sjögrens can look identical to ME/CFS, you have to show that Sjögrens can cause enough ME/CFS symptoms to fulfil the diagnostic criteria.

Just google it or read Alalush's comment. You're claiming it can't cause MECFS; then n=1 from member alalush is enough to refute that claim. (whose Sjogrens was missed for 6 yrs thanks to the fact that 61% of MECFS patients dont have their SSA measured, even). You can even check his Twitter and see he lives like a true MECFS patient for 11 yrs - homebound.

what does any of those studies have to do with ME/CFS?

If you’re saying that Sjögrens can look identical to ME/CFS, you have to show that Sjögrens can cause enough ME/CFS symptoms to fulfil the diagnostic criteria.

So I guess this is now proven with alalush and we can close the false claim that Sjogrens can not cause MECFS set of symptoms.

The link with SFN/POTS&dysautonomias in Sjogren's as the 2nd most common cause of SFN is better established than with MECFS for the simple reason that 99% of researchers or physicians don't ask their patients if they have MECFS and don't know how to recognize PEM from other types of fatigue. As MECFS can't be measured few show interest to 'document' it and SFN with biopsies, tilt table tests etc is more attractive for studies

I never even met a researcher in neurology who pays attention to MECFS unfortunately, when I first started going to my neuro i was frustrated he doesnt understand the level of fatigue but because he cared abut SFN and POTS I just played along, and got a bit lucky that IVIG removed the ME part mostly although SFN&POTS is equally bad if it limits your mobility.



The studies I posted were related to the comments that dry eye is rare in MECFS patients (which is only a claim too, I have seen studies showing the opposite), so I posted studies saying dry eye and mouth is RARE IN SJOGRENS PATIENS WITH NEUROLOGICAL INVOLVEMENT.

 

[Verity]

n=1 from member alalush is enough to refute that claim.

Doesn’t his situation only prove that you can have ME and Sjogren’s at the same time? What is the evidence that Sjogren’s causes ME?

I have ME and migraines, but that doesn’t mean migraines cause ME.

 

[Jonathan Edwards]

@Jonathan Edwards am I understanding correctly that Sjogren’s could be overdiagnosed even when antibody tests and biopsies are used?

Very much so. Sjögren's was what pushy young rheumatologists got into to sell themselves as experts. It has the advantage that you can make the diagnosis almost without any specific features at all. It is reasonable for a syndrome to include maybe 1-5% of people who do not have one particular classic feature. Maybe 1 in 100 people with rheumatoid arthritis have no arthritis, a few more with psoriatic arthritis have no psoriasis. But for Sjögren's it always seemed to me that 60% of patients didn't have some key features and a good number didn't seem to have anything specific at all. And it is one of those syndromes that seems to sprout new features in new systems every year.

The only clear pathology is in the exocrine glands, which doesn't explain much else beyond the sicca. We know that Ro antibodies do weird things - like give newborn infants heart block - but we have no real idea how. People with sicca and Ro complain of fatigue but I never met one who gives a story like an ME/CFS patient.

Like POT and EDS, there is a real diagnosis hiding in the wings but yes, Sjögren's is one of those easy labels to stick on people whe you don't know what is wrong.

 

[Utsikt]

Just google it or read Alalush's comment. You're claiming it can't cause MECFS; then n=1 from member alalush is enough to refute that claim. (whose Sjogrens was missed for 6 yrs thanks to the fact that 61% of MECFS patients dont have their SSA measured, even). You can even check his Twitter and see he lives like a true MECFS patient for 11 yrs - homebound.

Comorbid ME/CFS and Sjögrens does not prove that Sjögrens can cause ME/CFS or ME/CFS-like symptoms. By pure chance people will end up having multiple diseases at the same time.

I don’t think we can make generalised claims from a poll here with 55 votes. Or were you referring to other data for the SSA tests?

The studies I posted were related to the comments that dry eye is rare in MECFS patients (which is only a claim too, I have seen studies showing the opposite), so I posted studies saying dry eye and mouth is RARE IN SJOGRENS PATIENS WITH NEUROLOGICAL INVOLVEMENT.

That’s fine. But it isn’t evidence for the claim that Sjögren’s causes ME/CFS or ME/CFS-like symptoms.

The link with SFN/POTS&dysautonomias in Sjogren's as the 2nd most common cause of SFN is better established than with MECFS for the simple reason that 99% of researchers or physicians don't ask their patients if they have MECFS and don't know how to recognize PEM from other types of fatigue. As MECFS can't be measured few show interest to 'document' it and SFN with biopsies, tilt table tests etc is more attractive for studies

I don’t have the energy to get into the claims you make here, but I want to point out that even if ME/CFS isn’t flagged when it should be, we’d still expect to see Sjögren’s biomarkers in ME/CFS studies if Sjögren’s causes a lot of ME/CFS. I don’t think we have seen that.

 

[alalush]

I've been involved in Sjogren's research trials at the University of Ghent for the past five years. More than half of the patients with Sjogren's that I've met there experience exercise intolerance and symptoms of post-exertional malaise (PEM). It's a widespread misconception that Sjogren's is just about sicca symptoms. Increasingly, research is recognizing that it's much more than that—it's Sjogren’s Disease, not merely a syndrome.

 

[Jonathan Edwards]

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.

 

[Pibee]

Comorbid ME/CFS and Sjögrens does not prove that Sjögrens can cause ME/CFS or ME/CFS-like symptoms. By pure chance people will end up having multiple diseases at the same time.

This shows you don't really understand what Sjogren's disease is, and that is why we have this back and forth. it is no longer called a syndrome, btw.

One of the hallmarks of Sjogren's is high total IgG, so an increasing number of autoantibodies too with the progression, with a preference for peripheral nervous system, so what 99% researchers and clinicians do when they have a patient with SjD that has also any neuro illness *including MECFS is conclude it is caused by Sjogrens because it is systemic disease known to attack CNS and PNS. You're opposing this common knowledge in the field without explaining why, besides, what it looks to me, that you are afraid that if SjD can cause MECFS, then MECFS can't be a disease on its own (which obviously is untrue too)

I don’t think we can make generalised claims from a poll here with 55 votes. Or were you referring to other data for the SSA tests?

That’s fine. But it isn’t evidence for the claim that Sjögren’s causes ME/CFS or ME/CFS-like symptoms.

I don’t have the energy to get into the claims you make here, but I want to point out that even if ME/CFS isn’t flagged when it should be, we’d still expect to see Sjögren’s biomarkers in ME/CFS studies if Sjögren’s causes a lot of ME/CFS. I don’t think we have seen that.

The problem is you're convinced it CAN'T cause it and you didn't explain why it can't cause MECFS, while it can cause and is documented that it causes CIDP, NMOSD, pMS/like , autoimmune encephalitis, SFN, POTS.. and other neuro autoimmune diseases caused by antibodies

 

[Utsikt]

This shows you don't really understand what Sjogren's disease is, and that is why we have this back and forth. it is no longer called syndrome btw.

I don’t understand how you got to thar conclusion from me pointing out that correlation doesn’t imply causation.

The problem is you- re convinced it CANT cause it and you didn-t explain why it cant cause MECFS while it can cause and is documented that it causes CIDP, NMOSD, pMS/like , autoimmune encephalitis, SFN, POTS.. and other neuro autoimmune diseases caused by antibodies

You’ve got it backwards. You have the burden of proof.

And none of the things you list have much to do with ME/CFS, except for orthostatic intolerance - which is not anywhere near enough to support your claim thar Sjögren’s causes ME/CFS.

 

[Utsikt]

It would be reasonable to discuss whether Ro or La antibodies can cause ME/CFS but not whether Sjögren's (another syndrome) does.

I’m assuming you’d need more than just Ro or La if lots of people have Ro or La without ME/CFS?

 

[Pibee]

I don’t understand how you got to thar conclusion from me pointing out that correlation doesn’t imply causation.

You’ve got it backwards. You have the burden of proof.

And none of the things you list have much to do with ME/CFS, except for orthostatic intolerance - which is not anywhere near enough to support your claim thar Sjögren’s causes ME/CFS.

I didn't say Sjogren's causes MECFS; I said it can cause it in patients who have Sjogren's, because MECFS is a set of symptoms after all.

I mentioned hierarchy because correlation-causation doesn't apply if one illness has the mechanism to explain the other, and the opposite is not possible.

 

[Utsikt]

I didn't say Sjogren's causes MECFS; I said it can cause it in patients who have Sjogren's, because MECFS is a set of symptoms after all.

You’re saying that patients that have Sjögren’s can get ME/CFS as a result of having Sjögren’s no? What’s the proof of this?

I mentioned hierarchy because correlation-causation doesn't apply if one illness has the mechanism to explain the other, and the opposite is not possible.

You’re assuming that there even is a causal relationship between two correlating variables, but have provided no proof of the causal relationship actually existing.

 

[Pibee]

You’re saying that patients that have Sjögren’s can get ME/CFS as a result of having Sjögren’s no? What’s the proof of this?

You’re assuming that there even is a causal relationship between two correlating variables, but have provided no proof of the causal relationship actually existing.

Clinical proof is patients who have Sjogrens developed MECFS too

Its not 2 variables. Sjogrens is multiple variables, MECFS is one.
Read about neurological complications of Sjogrens before making further claims. Also about immunological profile of that disease.
For you this topic seems personal, for me it is not so relevant as I don't identify with MECFS.

 

[Utsikt]

Clinical proof is patients who have Sjogrens developed MECFS too

That is not proof of causation. I explained this above - by chance people will end up with multiple diseases at the same time.

Its not 2 variables. Sjogrens is multiple variables, MECFS is one.

How does that prove causation?

I feel like we’re going circles. Maybe we should stop here.

 

[Verity]

I've been involved in Sjogren's research trials at the University of Ghent for the past five years. More than half of the patients with Sjogren's that I've met there experience exercise intolerance and symptoms of post-exertional malaise (PEM). It's a widespread misconception that Sjogren's is just about sicca symptoms. Increasingly, research is recognizing that it's much more than that—it's Sjogren’s Disease, not merely a syndrome.

There are two issues with this.

People with different illnesses seem to be claiming to have PEM these days. It’s far from clear that they actually do have genuine PEM and not some other kind of exercise intolerance.

Also, if ME patients with positive antibody tests are getting inappropriately diagnosed with Sjogren’s, it’s not surprising people with PEM would show up in Sjogren’s research. Doesn’t mean there’s any actual correlation between Sjogren’s and ME. We’re approaching a circular argument here.

It’s an interesting anecdote, but it doesn’t really prove anything.

I didn't say Sjogren's causes MECFS; I said it can cause it in patients who have Sjogren's, because MECFS is a set of symptoms after all.

It doesn’t matter that ME is a set of symptoms. The presence of that set of symptoms in someone who has another illness is not evidence that the other illness caused the set of symptoms. Some other thing may have caused the ME symptoms instead of Sjogren’s.

But for Sjögren's it always seemed to me that 60% of patients didn't have some key features and a good number didn't seem to have anything specific at all. And it is one of those syndromes that seems to sprout new features in new systems every year.

This is what I suspected from contact with “neuro-Sjogren’s” info online. Interesting to see a rheumatologist say as much. Thanks for the info!

 

[Pibee]

That is not proof of causation. I explained this above - by chance people will end up with multiple diseases at the same time.

How does that prove causation?

I feel like we’re going circles. Maybe we should stop here.

But who is even defining MECFS as a disease if you cant prove you have it ? It's a set of symptoms for now and you can't claim some other disease can't cause it.


You're trying to claim thats 2 equally loaded variables - Sjogrens and MECFS. This stems from your lack of knowledge on the immunological profiles of diseases like like Sjogrens or SLE. It is just unreasonable to compare such vast knowledge and data to currently just a cluster of symptoms defined through PEM.

So yes it's even a scientifically established fact that MECFS can be a complication of SjD.
It is listed in the criteria for illness among various PNS and CNS complications. The number of symptoms that can be in this complications is endless and just one matches MECFS

The current research on MECFS is going in the direction of plasma cells.
Same as SjD..
They link them to same antibodies and dorsal root ganglionitis.
About 50-70% of SjD patients have SFN.
I don't know how much % of MECFS have SFN, depends which researcher you ask - some claimed even up to 70%?


This is interesting (one of 1000 such discussions online, as I said who wishes to know will find it within minutes):

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Just check the comments and how many patients identify with both.
And yes: when you read about what kind of pathology Sjogrens is causing you'll understand that the causation is more plausible in those with both and well; it's not even my opinion, it is accepted dominant opinion in the field.

 

[Verity]

@Pibee I think it will help us understand you better if you can explain how you’re differentiating between these two possibilities:

1. ME and Sjogren’s sometimes occur together by chance, or because they’re commonly comorbid for some non-causative reason.

2. ME and Sjogren’s sometimes occur together because Sjogren’s can cause ME.

What convinces you that we’re dealing with #2 and not #1?

 

[Pibee]

People with different illnesses seem to be claiming to have PEM these days. It’s far from clear that they actually do have genuine PEM and not some other kind of exercise intolerance.

If people with disease X can't claim they have PEM and we wont believe them, why people without disease X can claim they have PEM and based on that claim we can diagnose that group as MECFS?

So you're gaslighting over here people who don't have MECFS.

 

[Verity]

If people with disease X can't claim they have PEM and we wont believe them, why people without disease X can claim they have PEM and based on that claim we can diagnose that group as MECFS?

So you're gaslighting over here people who don't have MECFS.

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.

 

[Pibee]

@Pibee I think it will help us understand you better if you can explain how you’re differentiating between these two possibilities:

1. ME and Sjogren’s sometimes occur together by chance, or because they’re commonly comorbid for some non-causative reason.

2. ME and Sjogren’s sometimes occur together because Sjogren’s can cause ME.

What convinces you that we’re dealing with #2 and not #1?

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.

Why this all matters? Well obviously because access to treatments and because there is much more knowledge on the cause of SjD, but overall the treatments literally colide with all the same drugs being preferred and trialed like daratumumab, Vyvgart etc. and with patients measuring even the same antibodies.