There are plenty of pwME who can do things that seem extraordinary to other pwME. For many, the idea that one could stand unaided without triggering PEM is all but unthinkable, while others work full time jobs. I lifted weights for years while mild before finally crashing - I am not alone in this. Others go through periods of remission where they are able to function at a basically normal level without relapsing. There is no absolute here and it is certainly not "common sense" to establish arbitrary boundaries like this. It sure as hell isn't part of the "definition" of ME/CFS.No this is common sense, nobody with ME/CFS can do a deadlift and not get worse unless they don't have ME/CFS anymore lol. Maybe he is lifting those 2kg rubber dumbells.
Is there a connection between ME/CFS and Sjogren's Syndrome? Discussion and a poll about testing
- Thread starter TigerLilea
- Start date
Finally a word of reason.
Defining any disease through solely symptoms obviously doesn't get you much further than an endless online discussion.
You can have MECFS without even one single symptom. Like you can have many other diseases without symptoms. Maybe it's so mild to notice them, or your treatment works & you're in remission. This is how it will hopefully be in future, with biomarkers.
OrganicChilli
Senior Member (Voting Rights)
So as someone who considers ME/CFS to be a symptom you're now saying "you can have a symptom without even a single symptom". That's your second contradiction within a few posts. The other being that you you're making up triggers for your friend's condition as you please.
I am saying MECFS is currently defined through a cluster of symptoms. I didn't say it is a symptom.
I am making up triggers? Are you arguing against someone, Aubry, not knowing what made him suddenly sick and quit work within days and he never recovered after that (vaccine)?
What is the actual problem, disabling fatigue and SFN, his main symptoms, like dysautonomia, tinnitus, SFN, PEM, and brain fog, are listed under Sjogrens' complications.
This is how mainstream medicine sees it, I can't defend a whole branch of science for you, read journals
OrganicChilli
Senior Member (Voting Rights)
You claimed his alleged Sjögrens caused his alleged ME/CFS. I challenged that and said you don't know that. You then said his symptoms were triggered by a vaccine. Which is clearly a different trigger and would at least make sense.
In case you weren't aware most papers on ME/CFS are nonsense. Sjogrens papers who claim to know anything about ME/CFS will be even worse.
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Rick Sanchez
Senior Member (Voting Rights)
Dont wanna go off topic, but this just isn`t true at all.
A lot of people with progressive MECFS were mild at one point and where able to do sports. Even as the MECFS progresses a decent amount of MECFS patients actually report having an easier time lifting weights than they do cardio (If one had to chose between both). I think this exact phenomena has even been discussed on these forums before, multiple times.
There seems to be some misconception amongst some in the MECFS community that every patient who does physical exercise or pushes themselves too hard will vastly deteriorate. If this were true a large part of MECFS patients would be bedbound or in wheelchairs. Yet only a minority (albeit a significant minority) endure this terrible fate.
The reason I think it is relevant for this topic is that we can`t discount someone`s supposed MECFS because they can lift weights. I think the Norwegian patient who improved is another good example, just like LHS mentioned above. I mean, can MECFS be completely cured? We know that both fulfilled the MECFS criteria. We know that they are better now. A lot of questions we just do not have answers to. Must be humble.
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Don't worry, 99% rheumatologists and neurologists have never heard of MECFS, and wouldn't know what PEM stands for, so why bother ?! Of course, they don't mention it, and they never read papers. It's not even mentioned at any neurological conferences, just because something is not mentioned doesn't mean it doesn't exist and doesn't happen in Sjogren's too
The vaccine triggered his Sjogren's symptoms (MECFS, SFN) to explode. He likely had it before with a very few to no symptoms, like many cases. I don't know what to do with your "challenge", what level of proof do you need that Sjogren's can cause dysautonomia ?! will I get paid for this? I am not here to educate you on anything, you can google, I replied only because someone asked me to, but it's a waste of time.
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Lisan_Al_Ghaib_87
Established Member
Undoubtably there is no one size fits all capacity in ME/CFS for obvious reason and we cannot whatsoever establish contours or frame approximately a-z functionalities , however the scientifical and medical community agrees on one perceivable symptom which is unique ( or almost unique) to ME/CFS i.e. unproportionally exacerbation of symptoms after exertion.
Def we need more info on the person's pre-ME/CFS, pre-treatment and post treatment capacity to evaluate correctly what's happening however Classical Weight Lifting without PEM/PENE fells under the spectrum of healthy person activity?! As you said you lifted during your mild/very mild period but you ended crashing.
Edit: definitely went of topic!
I stopped Romanian deadlifting due to lower back problems.
I am NOT fully recovered. If my functioning was about 25% before daratumumab, it is nowadays about 40% I would say.
I still have tremendous fatigue, horrible burning painful small fiber neuropathy, sleep problems, lung dyrness, and even PEM.
It's not because I can do some weight lifting, that one is in remission. There are many degrees.
My 5 last workouts:
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OrganicChilli
Senior Member (Voting Rights)
You said right here he has ME/CFS because of sjogrens. Two posts down it's suddenly the vaccine. It's nonsense to claim Sjögrens causes ME/CFS or PEM. We have little to no evidence for ME/CFS itself, we don't have any evidence of a connection with Sjögrens. Many researchers write just whatever they want and you take it at face value.
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jeeez. Maybe he has neither? lol. he has biopsy-proven SSA-positive and ultrasound positive Sjogrens
MECFS he has because HE SAYS SO lol, that's how your MECFS illness is defined, my mom, my aunt, my uncle, my neighbor, all can get MECFS diagnosis, you just come to the doctor and say you have those symptoms. So if you argue against Aubry's own claims about symptoms he has, then you're probably breaking the rules of this forum because I remember well many MECFS patients get offended if you tell them they don't have MECFS, because they have trauma from gaslighting.
Yes, Sjogren's is causing his MECFS. Not everyone's. Clearly.
OrganicChilli
Senior Member (Voting Rights)
That's just plain nonsense and unscientific. I don't know why you're so adamant to go down this route when you have nothing to gain from it.
That's how it is with fatigue, when an MS patient has debilitating fatigue, they don't know as well what's causing it, but they assume it's MS. If you want strict scientific precision, medicine is the wrong field for you, dear, in 2026 at least. Sometimes they're wrong. My friend had severe constipation for years, thought it was from his severe MS, but turned out he had cancer at 36, and he died from colon cancer spread to liver, he found out at the ER while already dying. But obviously, these are exceptions. So, in medicine, which is not a perfect science, you can say Sjogrens is causing debiliating fatigue with PEM.
Have you seen this study about efferocytosis with respect to Sjogren's?
I found this because @mariovitali has been talking about efferocytosis, so I am looking up autoimmune diseases to see if it is involved in them.
There is a supplement that helps with this, if you are interested.
Defective Efferocytosis in a Murine Model of Sjögren’s Syndrome Is Mediated by Dysfunctional Mer Tyrosine Kinase Receptor
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OrganicChilli
Senior Member (Voting Rights)
Well ME/CFS isn't fatigue so that's a non-starter anyway. Some pwME don't even have debilitating or chronic fatigue. If his condition(s) was triggered by a vaccine that I can accept. If he has legit PEM, he has ME/CFS. But he doesn't have either because of sjogrens. He can have them separately.
He has fatigue; most MECFS patients have fatigue, not all. It is sad that we have to analyse the words because there are no biomarkers. The thing is, he claims to have PEM, and needs to pace, etc., if he didn't admit having Sjogren's, nobody would accuse him of not having MECFS, like it's some kind of competition, exclusive club.
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. If you ever read papers you'll see many many cases of CIDP or NMOSD claimed to be caused by Sjogrens, while in other papers it's stated as a comorbidity, the first papers are a view of academic medicine /research, and 2nd is more clinical approach as some neurologists, reasonably, find mild dryness trivial in a patient who is getting blind and can't walk from NMOSD.
Sjogren's is a systemic illness that can attack multiple organ systems in body. SFN is included in list of possible complications and you get ESSDAI points for it, PEM isn't included yet because rheumatologists have never heard of PEM because neurologists don't recognize it.
OrganicChilli
Senior Member (Voting Rights)
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.
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/
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/