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

[Evergreen]

Positive ANA among healthy people is more common in women and over 40s (meaning people over 40 years of age):

(These quotes are from the literature review section of a paper by Blumenthal about the differential diagnosis of fibro and lupus. I don't recommend the paper, but the lit review is fine.)

De Vlam and colleagues studied 485 healthy volunteer blood donors and found that 20% of the women and 7% of the men had a positive ANA result. Of women over 40 years of age, 31% were ANA-positive.

Craig et al found an ANA titer of at least1:64 in 15% of healthy women younger than 40 years and 24% of women age 40 or older.

In [Tan et al, link in previous post], 38.5% of patients with noninflammatory “soft tissue rheumatism” had a positive ANA resultat a 1:40 dilution, and 23.1% at a 1:80 dilution

 

[Pibee]

I think it's worth getting the statistics straight.


Regarding ANA, your statement is incorrect. I think this is an important one to get right because many of us will have an ANA test done at some point. In the absence of ENAs, a positive ANA does not mean someone's chances of having an autoimmune disease are high.

The American College of Rheumatology explains:


The percentage of the healthy population with a positive ANA test depends on the titre. Tan et al. 1997 found:




Here's a guide to interpreting ANA results for GPS:



A negative ANA doesn't necessarily mean you don't have an autoimmune disease. The table below shows the percentage of people with different autoimmune diseases who have a positive ANA.

You read the table below as: 93% of those with lupus have a positive ANA, 41% with rheumatoid arthritis have a positive ANA etc.
View attachment 28837

We literally said the SAME thing. 5% 'healthy control at 1:160 have positive ANA, so 1 in 20 chances to happen in healthy person. (allegedly healthy). That is low.
Very unlikely to be healthy at 1:160
Plus, you know you're not healthy so for you is 100%.
Plus, EULAR often counts both, you and me, as HC. Lol.

So not sure what is incorrect as we said the exact same things.

1:40, in all labs I tested it is absolutely never regarded as positive, I was speaking of 1:160, which is also dismissed.

Positive ANA and negative ENA, is not excluding autoimmune rheumatic disease - I know based on myself I have SjD and sometimes I test mild pos Ro60, sometimes, usually not. I have all halmark of SjD.
My ANA is also sometims 1:80 sometimes 1:160.

 

[Pibee]

Positive ANA among healthy people is more common in women and over 40s:

(These quotes are from the literature review section of a paper by Blumenthal about the differential diagnosis of fibro and lupus. I don't recommend the paper, but the lit review is fine.)

Labs never call 1:40 positive. This is only research, clinics dont operate like this. And yes, 1:160 is significant because gives 5% chances of being "healthy". 1:80 is also still significant. if CLINICAL Symptoms exist, and we are all here with symptoms, aren't we.

 

[Evergreen]

Labs never call 1:40 positive. This is only research, clinics dont operate like this.

Over 40s in age. People who are over 40 years of age. Nothing to do with titres.

 

[Evergreen]

We literally said the SAME thing. 5% 'healthy control at 1:160 have positive ANA, so 1 in 20 chances to happen in healthy person. (allegedly healthy). That is low.
Very unlikely to be healthy at 1:160
Plus, you know you're not healthy so for you is 100%.
Plus, EULAR often counts both, you and me, as HC. Lol.

So not sure what is incorrect as we said the exact same things.

No, they're not the same thing, because having a positive ANA does not necessarily mean you have autoimmune disease. ANA is raised by things other than autoimmune disease. And as the GP guide quoted above said, less than 10% of patients referred to rheumatology clinics with low to moderate titre positive ANA are ultimately diagnosed with an ANA-associated rheumatic disease. It's not just a simple case of, you have a positive ANA, so you have or will soon have an autoimmune disease.

Positive ANA and negative ENA, is not excluding autoimmune rheumatic disease - I know based on myself I have SjD and sometimes I test mild pos Ro60, sometimes, usually not. I have all halmark of SjD.
My ANA is also sometims 1:80 sometimes 1:160.

Agreed, but you have tested positive for Ro at least once, and your clinical symptoms match up with that, and you've had a positive lip biopsy.

1:80 is also still significant. if CLINICAL Symptoms exist, and we are all here with symptoms, aren't we.

Yes, but it's not any old symptoms. You have to have some symptoms that match the cardinal symptoms of the disease to be diagnosed.

@Jonathan Edwards will be able to explain all of this better than I can.

 

[Pibee]

No, they're not the same thing, because having a positive ANA does not necessarily mean you have autoimmune disease. ANA is raised by things other than autoimmune disease. And as the GP guide quoted above said, less than 10% of patients referred to rheumatology clinics with low to moderate titre positive ANA are ultimately diagnosed with an ANA-associated rheumatic disease. It's not just a simple case of, you have a positive ANA, so you have or will soon have an autoimmune disease.


Agreed, but you have tested positive for Ro at least once, and your clinical symptoms match up with that, and you've had a positive lip biopsy.


Yes, but it's not any old symptoms. You have to have some ssymptoms that match the cardinal symptoms of the disease to be diagnosed.

@Jonathan Edwards will be able to explain all of this better than I can.

My clinical symptoms were 99.99999% neurological MECFS,POTS,SFN, took 15 yrs of UNTREATED to develop dryness. And I still dont fit the official crtieria with "normal ultrasound of salivary glands, normal saliva volume, no ANA, no ENA."
yes i tested borderline pos Ro60 couple of times, more often negative, in multiple labs negative, but how many people can actually say they did this test 10 times? lol

The whole criteira is written by humans, thus is prone to error, usually old and soon retired rheumatologists who set a limit for saliva volume based on their 80 year old patients and then say to a young patient we don't have dry mouth. It's a joke

No, they're not the same thing, because having a positive ANA does not necessarily mean you have autoimmune disease.

1:160 ANA means it is 5% chance you don't have autoimmune illness (this chance is for healthy control, so for MECFS SFN patient we can argue 5% makes no sense because they're the sick subgroup, not HC).

so if you prefer arguing that 5% "does not mean" you have AID, that is true, but that is very bad betting game to rely on 5% chances.

 

[Pibee]

@Jonathan Edwards will be able to explain all of this better than I can.

there is literally nothing to explain. The criterias keep changing, adjusting, humans decide on this, and humans are prone not only to error but also to changing their mind later. The criteria is flawed in many ways, the underlying illness has many patterns and humans try to translate it to a set of words and criterias, it is never the exact copy of original. They also don-t agree among themselves. I attend EULAR each year, and I know enough to know what I actually have and I still stand by all I've said: if you are told 1:160 (in a sick person), is not relevant, it is because it's not relevant to the person making that claim. It means nothing else, it just means that exact rheumatologist has such opinion on that day. Ask him a year later it might differ. Happens all the time.

 

[Evergreen]

1:160 ANA which is almost always dismissed by rhuems, gives you 95% chances of autoimmune disease.

That's a misunderstanding of what the 5% figure means. That 5% of heealthy people have an ANA titre of 1:160 does not mean that 95% of those with a positive ANA at 1:160 have an autoimmune disease. To find out what percentage of those with a positive ANA at 1:160 have an autoimmune diseaes, you have to do a different study...

...like this study, where 16% of people with a positive ANA of 1:160 or higher were diagnosed with an autoimmune disease.

In that study, the symptom of fatigue did not increase people's chances of being diagnosed an autoimmune disease.

You will not find any rheumatologist, young or old, who would agree with you that an ANA titre of 1:160 gives you a 95% chance of having an autoimmune disease.

 

[Jonathan Edwards]

Yes, 90% of professional baseball players are over 6ft 6inches. Maybe 5% of the population are over 6ft 6 inches but very few of them are baseball players because only one person in a thousand is a baseball player (like lupus). Many more healthy people have positive rheumatoid factor than people with rheumatoid arhritis. Many more people have positive ANA 1/160 than have lupus (fifty times as many if it is 5%).

 

[Evergreen]

Yes, 90% of professional baseball players are over 6ft 6inches. Maybe 5% of the population are over 6ft 6 inches but very few of them are baseball players because only one person in a thousand is a baseball player (like lupus). Many more healthy people have positive rheumatoid factor than people with rheumatoid arhritis. Many more people have positive ANA 1/160 than have lupus (fifty times as many if it is 5%).

Oh that's a nice way of explaining it. Did you mean basketball though?

 

[Evergreen]

In post #100 above, a GP guide was quoted as saying:

In subspecialty rheumatology clinics it is reported that <10% of patients referred with low to moderate titre positive ANA are ultimately diagnosed with an ANA-associated rheumatic disease.

I found the study: Narain et al. 2004.

 

[Evergreen]

Here's the relevant part of Barnado et al. 2024 mentioned in this post above:



This study suggests that about 8% of people with positive ANA with a titre of 1:80 have systemic autoimmune disease, and about 16% of people with a positive ANA with a titre of 1:160 or higher have systemic autoimmune disease.

The study looked at whether autoimmune disease developed within the ten year period after people were first found to have a positive ANA, or up to the last time their electronic health record was updated (which would happen every time they see a doctor).

 

[T&O]

I tested positive for Sjogrens in my late 20s, a highly respected rheumatologist broke down the results for me but Im ashamed to say I can barely remember and am now too confused or foggy to be certain enough to contribute useful details.

One aspect : ophthalmologist had trouble unsticking papers from my inner eye-lids as I have no tears for eye maintenance, (and have with age some damage), yes dry mouth, yes sore joints and extensive body pain.
I apologise I dont have more helpful details (as other members here).

I also qualify and have been diagnosed for ME.
Suffering for years ahead of diagnosis.

Im not sure what to make of this discussion.
Its fascinating and frustrating in equal measure.
Your challenging views (and studies) challenge what I thought was certain.

 

[Jonathan Edwards]

Worth remembering that Primary Sjögren's syndrome associated with Ro and La is not the same as Sjögren's syndrome n.o.s.. Clinical Sjögren's syndrome occurs with rheumatoid arthritis without Ro or La. It is all very confusing because primary Sjögren's is associated with rheumatoid factors too but they are of a different spectrum from those in RA. There aren't any watertight categories within all this.

 

[T&O]

Worth remembering that Primary Sjögren's syndrome associated with Ro and La is not the same as Sjögren's syndrome n.o.s.. Clinical Sjögren's syndrome occurs with rheumatoid arthritis without Ro or La. It is all very confusing because primary Sjögren's is associated with rheumatoid factors too but they are of a different spectrum from those in RA. There aren't any watertight categories within all this.

Aint that the truth !
Hear you.
Thanks JE .

 

[Pibee]

I tested positive for Sjogrens in my late 20s, a highly respected rheumatologist broke down the results for me but Im ashamed to say I can barely remember and am now too confused or foggy to be certain enough to contribute useful details.

One aspect : ophthalmologist had trouble unsticking papers from my inner eye-lids as I have no tears for eye maintenance, (and have with age some damage), yes dry mouth, yes sore joints and extensive body pain.
I apologise I dont have more helpful details (as other members here).

I also qualify and have been diagnosed for ME.
Suffering for years ahead of diagnosis.

Im not sure what to make of this discussion.
Its fascinating and frustrating in equal measure.
Your challenging views (and studies) challenge what I thought was certain.

I am sorry you're basically undiagnosed this long. It is to blame the ignorant rheumatologists - and we see it is ongoing in 2025, thankfully, most of them are soon to retire, and have little to no impact on science so better days are coming.

Not too late to treat your neurosjogrens=ME