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

[OrganicChilli]

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.

No, I'm saying that currently nobody can say definitely that Sjogren's causes ME/CFS. They should be looked at as two separate conditions, but at the same time we can't rule out comorbidity.

 

[Pibee]

Gotta love deleting my posts.
I was saying it makes no sense because we can just say some MS patients' fatigue, sleep disorder and brain fog are caused by his MS. The same applies to Sjogren's!

As for neuro involvement, the animal model of SLE - the MRL/lpr mouse- is considered, according to some researchers, the best model of neurosjogrens. Anti-SSA/Ro antibodies show up in only a subset of animals, anti-Ro52 (30%), and even a much lower % have anti-Ro60.
However, MRL/lpr mice develop neurological involvement very early in their life - thermal hyperalgesia, mechanical allodynia, and spontaneous pain behaviors from ~12–16 weeks (equivalent to human adolescence /early adulthood), consistent with a small fiber neuropathy–like phenotype. This is accompanied by clear pathology at the level of the dorsal root ganglia (DRG) .
So, this model includes exocrine involvement, SFN-like pain phenotype, and DRG-centered neuroinflammation in the absence of consistent SSA positivity.

(if you want to know more, you'll simply read studies)

and from MECFS UK org:
https://meassociation.org.uk/medica...anglionitis-and-post-mortem-research-into-me/

A dorsal root ganglion forms part of the sensory nerve root that enters the spinal cord – so it’s involved in processing sensory information. Inflammation in a DRG could therefore result in some of the sensory symptoms that occur in ME – pain, loss of sensation, abnormal sensations (paraesthesiae). And it's interesting to note the presence of dorsal root ganglionitis in an autoimmune condition called Sjögren's Syndrome has been linked to a peripheral neuropathy that is sometimes seen in this condition.

Although ganglionitis means inflammation, and this may well involve infection, the relationship to ME/CFS remains uncertain as this is only a preliminary finding in a small number of post-mortem cases

 

[OrganicChilli]

In other words causation is not established. It's just a bunch of assumptions because we don't have enough data from ME/CFS patients.

 

[Hutan]

We have removed a number of posts that started with the querying of someone's diagnosis and whether someone who lifts weights could have ME/CFS.

The topic of what physical feats someone can do while having ME/CFS is a valid one, but off-topic here. If you want a copy of your deleted post, in order to re-use some of the content to start a thread for that topic, please contact a moderator.

Moderators have found it difficult to balance competing needs in this thread, so please bear with us.

 

[Pibee]

In other words causation is not established. It's just a bunch of assumptions because we don't have enough data from ME/CFS patients.

The causation is almost never established in medicine, as I explained with fatigue in MS, it is arbitrary, as I gave an example of NMOSD in Sjogrens, depends who you ask, but conceptually it fits as neurological complication of Sjogrens & the animal models support it

I'm not sure why do you think that MECFS/dysautonomia/SFN/POTS etc clusters which occur so often in Sjogrens patients are anything different than all other listed neurological complications. Especially cos SFN/DRG is much more common than NMO or CIDP in Sjogrens.