The symptom signaling theory of ME/CFS involving neurons and their synapses

I think something similar is experienced with acute illness as well. Like if you do too much when you have the flu.

What seems to really seperate ME is the duration of PEM and fact sometimes you never get back to baseline. I’m strongly in favour of making sure definitions of PEM are strict on this. Because I think it could do a lot of damage to give transient worsenings the same name as what can be permament in ME/CFs.
 
nataliezzz said:
Yes, for sure. I think the kind of thing she is describing in Sjogren's patients seems to be a bit different from what would typically be considered "exercise intolerance" or transient PESE though (e.g. see her description of hers below... can be triggered by sensory input, giving a presentation leads to extended decline, etc.), though as I said it may be distinguished from the PEM of ME/CFS by lack of delayed onset and possibility of leading to more enduring declines in baseline. Like I said, I suspect that kind of PEM is probably unique to ME/CFS (& possibly some cases of CCI).

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I don’t see anything in those quotes that points to PEM specifically. The term exercise intolerance already exists for some of what she’s talking about. Lots of disorders that involve the immune system are fatiguing. They usually don’t look more than extremely superficially like ME, though.
 
Verity said:
I don’t see anything in those quotes that points to PEM specifically. The term exercise intolerance already exists for some of what she’s talking about. Lots of disorders that involve the immune system are fatiguing. They usually don’t look more than extremely superficially like ME, though.
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I don't know, it sounds fairly PEM-like to me. Can be triggered by cognitive, sensory, or physical exertion, leads to a decline lasting for 24-48 hours. While certainly the latter does not compare to more severe forms of PEM in ME/CFS, it seems comparable to milder forms (I have experienced a wide range of duration/severity of PEM episodes, some on the milder end have resolved within a day or two). Hers is lacking the delayed onset (but not everyone with ME/CFS always reports a delayed onset to PEM - perhaps because PESE can kind of blend continuously into PEM). And some people report more rapid onset to PEM from certain kind of triggers - e.g. there was a post on Twitter a while back where a woman with ME/CFS said she gets immediate-onset PEM from emotional distress with many ME/CFS patients in the comment reporting the same.

 
@nataliezzz Your description of this Sjogren’s fatigue is very vague, and you haven’t clearly explained why you think it’s exactly the same thing as PEM rather than one of a hundred types of exercise intolerance or post-exertional fatigue you see in many different disorders. People with POTS and fibromyalgia can have fatigue after exertion that sounds somewhat like PEM but doesn’t look the same on closer examination, for example. Heck, even ADHD can cause fatigue after cognitive exertion and sensory input. None of that on its own suggests a relationship to ME. If you’re going to say the delay seen in PEM, which is an aspect of it that seems to majorly distinguish ME from other disorders, is not important to identifying PEM, you should explain your reasoning because it’s not obvious that we can just ignore it and still be talking about the same phenomenon.

I am not opposed to the idea of PEM-like experiences in other disorders. I have seen plenty of accounts that sound a lot like it in lupus, down to sore throats, swollen lymph nodes, and a level of disability comparable to at least moderate ME. But I think we need a lot more than what you’re presenting to buy that Sjogren’s causes PEM.
 
Verity said:
I think this is getting this thread off topic, so I am going to stop there.
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Fair enough, my original point about bringing up the "flavor of PEM" (as I originally phrased it) seen in some Sjogren's patients was in response to another person saying that they see many people on SFN forums reporting PEM and appearing to meet criteria for ME/CFS. I was bringing up the point about the "flavor of PEM" seen in Sjogren's and pointing out how it seems to be distinguished from the PEM in ME/CFS by the lack of delayed onset (although based on anecdotal reports, there also appears to be immediate-onset PEM for some ME/CFS patients, at least from some triggers) and the possibility of leading to enduring declines in baseline, because I do not think these aspects of PEM in ME/CFS can be explained by peripheral neuropathy, which is often a part of Sjogren's (it can also affect the CNS); I suspect high rates of SFN in ME/CFS are downstream of the underlying central pathology, rather than causal.
 
nataliezzz said:
I was bringing up the point about the "flavor of PEM" seen in Sjogren's
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I would be vey wary of "Sjogren's" advocacy material. Although there is no doubt that there is a soecific pathological entity centred around sicca symptoms and antibodies to RO and LA there is also a vast hinterland of misinformation, just as there is for EDS, POTS, CCI etc.
 
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