Metabolic Disorders Causing Fatigue and Exercise intolerance in Sjogren’s Syndrome, 2014 Suresh et al

[Jonathan Edwards]

The definition of Sjogren's was arbitrary, set as a "dry eye disease", but who says you need to have that?

Because that is what the term was designed to mean. You don't suddenly say that 'horse' was originally designed to mean animals with hooves but now having wings is thought more important.

Unfortunately, there are a lot of unscrupulous private physicians around who love playing games with people about diseases that have rather vague definitions. It applies to Sjogren's, Behcet's, 'POTS', Fibromyalgia and things that probably do not exist at all like MCAS.

 

[Ash]

Because that is what the term was designed to mean. You don't suddenly say that 'horse' was originally designed to mean animals with hooves but now having wings is thought more important.

Unfortunately, there are a lot of unscrupulous private physicians around who love playing games with people about diseases that have rather vague definitions. It applies to Sjogren's, Behcet's, 'POTS', Fibromyalgia and things that probably do not exist at all like MCAS.

@Jonathan Edwards, do you conclude that MCAS doesn’t exist?
I have seen you talk about this elsewhere but I didn’t understand what you meant because I don’t speak science or biology. So admittedly if you answer this question I may still not get it. But maybe if you use very simple language……

I am asking for personal reasons because my Dad my brother and I have reactions particularly since Covid infections but at a lower level before too, to foods and household or personal care substances that other people with LC and such reactions put down to MCAS.

I’m not keen for such a diagnosis specifically because I don’t understand it well enough to judge it a plausible explanation or otherwise, in the face of disbelief and ridicule by most Drs. I guess if I had any respect for most Drs knowledge on these things I’d just believe them. But I don’t. As far as I can see the average mainstream Dr is likely to opt for ridicule as a default position, as standard practice, rather than at specific times when something might actually warrant such a response.

On the other hand the average private/alternative practitioner seems to be rather prone to hyperbole and expressions of undue certainty leading their patients along like a pied Piper. So I am not ready to conclude that theirs would be a safe bet either.

If anyone else can enlighten me please do!

 

[Trish]

@Jonathan Edwards, expressions do you conclude that MCAS doesn’t exist?
I have seen you talk about this elsewhere but I didn’t understand what you meant because I don’t speak science or biology. So admittedly if you answer this question I may still not get it. But maybe if you use very simple language……

I am asking for personal reasons because my Dad my brother and I have reactions particularly since Covid infections but at a lower level before too, to foods and household or personal care substances that other people with LC and such reactions put down to MCAS.

I’m not keen for such a diagnosis specifically because I don’t understand it well enough to judge it a plausible explanation or otherwise, in the face of disbelief and ridicule by most Drs. I guess if I had any respect for most Drs knowledge on these things I’d just believe them. But I don’t. As far as I can see the average mainstream Dr is likely to opt for ridicule as a default position, as standard practice, rather than at specific times when something might actually warrant such a response.

On the other hand the average private/alternative practitioner seems to be rather prone to hyperbole and expressions of undue certainty leading their patients along like a pied Piper. So I am not ready to conclude that theirs would be a safe bet either.

If anyone else can enlighten me please do!

This thread might be useful:
Mast Cell Activation Syndrome (MCAS) - discussion thread

 

[Jonathan Edwards]

I am asking for personal reasons because my Dad my brother and I have reactions particularly since Covid infections but at a lower level before too, to foods and household or personal care substances that other people with LC and such reactions put down to MCAS.

That sounds like food intolerance which can either be traditional allergy or one of the more 'innate' responses like the common responses to prawns and strawberries. Similarly for soaps and lotions etc.

Lots of people have intolerances. MCAS is supposed to be some special abnormality of mast cell function that isn't an ordinary allergy. However, almost all the publications come from a very unimpressive US physician called Afrin. There probably are a tiny number of people with hypersensitive mast cells who do not have mastocytosis but the claim that MCAS is common is rubbish.

There is also confusion with MCS (multiple chemical sensitivity) which in theory is a completely different concept but the two acronyms often seem to be used as if they were interchangeable. I have not seen any evidence that MCS exists beyond some people being intolerant of various chemicals, which is not unusual.

 

[Ash]

That sounds like food intolerance which can either be traditional allergy or one of the more 'innate' responses like the common responses to prawns and strawberries. Similarly for soaps and lotions etc.

Lots of people have intolerances. MCAS is supposed to be some special abnormality of mast cell function that isn't an ordinary allergy. However, almost all the publications come from a very unimpressive US physician called Afrin. There probably are a tiny number of people with hypersensitive mast cells who do not have mastocytosis but the claim that MCAS is common is rubbish.

There is also confusion with MCS (multiple chemical sensitivity) which in theory is a completely different concept but the two acronyms often seem to be used as if they were interchangeable. I have not seen any evidence that MCS exists beyond some people being intolerant of various chemicals, which is not unusual.

Oh thanks!
I really appreciate this explanation aimed at my level.

Yeah, that sounds about right. Just an unfortunate heap of allergies. We all have asthma so to be expected I guess. Also intolerances, thats on the nail as I randomly developed a prickly mouth whilst eating strawberries for the first time last year, so disappointing.

 

[Pibee]

Because that is what the term was designed to mean. You don't suddenly say that 'horse' was originally designed to mean animals with hooves but now having wings is thought more important.

Unfortunately, there are a lot of unscrupulous private physicians around who love playing games with people about diseases that have rather vague definitions. It applies to Sjogren's, Behcet's, 'POTS', Fibromyalgia and things that probably do not exist at all like MCAS.

I am not diagnosed by private physicians, I am diagnosed in a University hospital with a lip biopsy
They don't need to change the definition of Sjogrens, you can keep it for advanced cases to diagnose it only after it has already destroyed/attacked glands enough to be symptomatic and ignore the fact that the diagnostic criteria doesn't include a need for positive anti-SSA antibodies because so high % of patients don't have them.
So we have a problem with even sticking to the original Sjogren's definition and applying it to diagnosing patients.

So you can wait 10-20-30 years to diagnose Sjogren's late but that doesnt change the fact that it can start as neuro decades earlier.
Isn't SSA late marker in Sjogrens mice models too?
The problem is to stick to the term when there is new knowledge about how it looks in younger people. When too big % of overlap and too big % eventually meet both POTS and Sjogren's criteria the discussion if it's one disease in those people is natural event

 

[Pibee]

Just to make it a bit more clear that the seronegative Sjogrens (no SSA) is not a made-up thing by private physicians, but it is included in the official SS criteria because it is extremely common (thus a lip biopsy is indicated when no anti-SSA)

ongoing research on the novel antibodies in Sjogrens at the University of Groningen; this is from EULAR 2023

in fact there is a published study so I'll make a new thread but please leave this comment because it relates to the previous posts
: https://pubmed.ncbi.nlm.nih.gov/37147113/