Sore throats swollen glands

It seems as though a substantial percentage of us have a sore throat as part of PEM, or more often:
Poll - Sore throat and tender lymph nodes

Has any work been done to work out what is going on with this? There is so much done with the symptom of fatigue, but maybe some work on the other symptoms might give us a clue.

I remember mentioning to a doctor once that I often get a sore throat with PEM, and that I have wondered what causes that, and what a biopsy or even just looking at the throat when it was sore might show. He confidently replied that it would show nothing, although I have no idea how he could know that. He certainly wasn't an expert on ME literature.

What could cause the PEM sore throat? And is there any way we could try to check out some of the possibilities?
 
Hutan said:
It seems as though a substantial percentage of us have a sore throat as part of PEM, or more often:
Poll - Sore throat and tender lymph nodes

Has any work been done to work out what is going on with this? There is so much done with the symptom of fatigue, but maybe some work on the other symptoms might give us a clue.
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Good question. I've always assumed - based on no evidence whatsoever - that the sore throat is part of the general sickness response symptom cluster. Like when you're coming down with a cold or flu. Confused immune system attacking ghosts or something. But really I've no idea.

A quick google didn't find much, sore throat is listed as a symptom often enough but nobody seems to have looked into it further. I did find this general paper on non-infectious sore throats (not in ME). Seems they're not well understood even before we add ME to the mix. From the conclusion:
Despite how common non-infectious sore throat is, little is understood about how it is caused by such a wide variety of physico-chemical and environmental factors. [...] Inflammatory processes (of various mechanisms, including neurogenic inflammation) appear to underlie sore throat of non-infectious aetiologies, and in many cases this may be the source of the pain. Cytokine receptors and TRP channels seem to be involved in the transduction pathways. Inflammation also underlies infectious sore throat, so many of the therapeutic options may be also appropriate for non-infectious sore throat.
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https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3439613/

And I found this (beware: it leads down the rabbit hole of HPV vaccine):
The researchers from the Hotta Osamu Clinic in Miyagi, Japan examined the nasopharynx in 41 young women (average age 17.3 years) who had developed ME/CFS-like symptoms following HPV vaccination. [...]

On closer examination, almost half of the patients had mild pharyngeal symptoms, but abrasion of the epipharyngeal mucous membrane with a cotton swab (which, the researchers say, tests for inflammation as chronic epipharyngitis is often not obvious by eye) and smear analysis showed that all 41 of them had severe epipharyngitis, identified by severe bleeding during the examination. [...]

It’s important to remember, however, that ‘chronic epipharyngitis’ is poorly recognised, and that the term is rarely used in the modern medical literature, particularly outside of Japan.
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https://www.meresearch.org.uk/nose-and-throat-inflammation/
 
Ravn said:
Confused immune system attacking ghosts or something.
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I never get the PEM sore throat without swollen lymph nodes. Someone once explained that they swell because they've recruited additional blood cells to come and fight an infection, and because of this I assume there's some kind of immune component to PEM.

If the PEM is mild, my swollen nodes usually go down within a couple of hours; I treat it as a useful warning that I need to cut back on everything except necessary activities for a little while. If it's severe, they'll stay that way for days.

I'd like to know what triggers this response, and how it gets subdued again, sometimes very quickly.
 
MeSci said:
My lymph nodes have been permanently swollen for years now, I think. They used to go down, but not any more.
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I wonder if this has anything useful to say about people who worsen permanently after activity that takes them beyond the PEM threshold, or after another illness?
 
Amw66 said:
Voice getting croaky/ hoarse after 10 mins talking also a feature.
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I had this for years after onset and assumed it was probably connected to the sore throat feeling, although I could have them independent of each other. The kind of odd thing was that when I told others that my voice was hoarse, even members of my immediate family said it sounded normal to them. I was dumbfounded that it wasn't noticeable to them. I could certainly feel the rasp in my throat and could hear it in my ears but others could not. Maybe it was because my voice is normally quite deep. The hoarseness might have been more apparent to others if my voice were normally of a higher pitch.
 
Moved posts
RedFox said:
What about swollen lymph nodes?
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Lymph nodes are supplied with nerves and fed with hormones controlled by the brain, like cortisol. I have never been that impressed by the claims that the brain has an important impact on immunity but it has an impact.

One thing that might be worth looking at is actual lymph node size. We now have ultrasound probes that can visualise superficial nodes quite well. There is no actual documentation of increase lymph node size in ME and if there was it would be the simplest of all ways to show that it is 'biomedical'. Maybe there should be a push for a study.

There is of course the alternative that lymph nodes are tender because of mediators under neural control without any structural change. And of course some people with ME will have swollen lymph nodes for one reason or another - so we need some facts.
 
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Jonathan Edwards said:
There is no actual documentation of increase lymph node size in ME and if there was it would be the simplest of all ways to show that it is 'biomedical'. Maybe there should be a push for a study.
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I've been trying to find ways to argue this for years, but was hampered by not really knowing whether it would be considered a meaningful sign.

It would also be useful to understand whether it's common for there to be a pattern of swelling. For instance, I've known my throat glands become visibly swollen during the course of a day because of a developing cold, but not due to PEM. That's a morning phenomenon, and if it persists right through to the evening I've really overdone it. Usually most of the visible swelling has faded by the afternoon and won't reappear until the following morning.
 
Jonathan Edwards said:
One thing that might be worth looking at is actual lymph node size. We now have ultrasound probes that can visualise superficial nodes quite well. There is no actual documentation of increase lymph node size in ME and if there was it would be the simplest of all ways to show that it is 'biomedical'. Maybe there should be a push for a study.
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This is brilliant. Do swollen lymph nodes usually happen during PEM? (Sorry, I don't have this symptom.) Then you can do a study with healthy controls and pwME doing a CPET and seeing how much their lymph nodes swell.
 
Kitty said:
I've been trying to find ways to argue this for years, but was hampered by not really knowing whether it would be considered a meaningful sign.

It would also be useful to understand whether it's common for there to be a pattern of swelling. For instance, I've known my throat glands become visibly swollen during the course of a day because of a developing cold, but not due to PEM. That's a morning phenomenon, and if it persists right through to the evening I've really overdone it. Usually most of the visible swelling has faded by the afternoon and won't reappear until the following morning.
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I never knew there were so many lymph glands - I associated them with the throat/ neck .

My daughter can be a dot to dot of lymph s when they are problematic , literally from head down.
 
RedFox said:
This is brilliant. Do swollen lymph nodes usually happen during PEM? (Sorry, I don't have this symptom.) Then you can do a study with healthy controls and pwME doing a CPET and seeing how much their lymph nodes swell.
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research is looking at proteomics, metabolomics and entire lymphocyte populations before and after exercise. This is where we will get answers.
 
That's good to know. I didn't know because I don't get lymph node swelling or tenderness as an ME symptom. I have experienced sore lymph nodes at times, but only when a healthy person likely would as well. For example, if I get a cut in my mouth (presumably my immune system is reacting to the bacteria in my mouth) or if I get a vaccine (which is totally normal).
 
MeSci said:
My neck lymph nodes were swollen at times in early ME, but now they are swollen all the time.
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Mine too but when I mentioned it to my GP she dismissed it saying it's probably my salivary glands. I'm not sure how much better it would be but looking at pictures of swollen lymph nodes it seems spot on. Mine are almost always pretty hard and tender.

I don't think this information is often correctly recorded, given my N=1 experience. The reflex to dismiss is strong.
 
rvallee said:
Mine too but when I mentioned it to my GP she dismissed it saying it's probably my salivary glands. I'm not sure how much better it would be but looking at pictures of swollen lymph nodes it seems spot on. Mine are almost always pretty hard and tender.

I don't think this information is often correctly recorded, given my N=1 experience. The reflex to dismiss is strong.
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re probably salivary glands, that's a joke. As a teen I had stones in my salivary glands, which were severely acting up every time I ate acidic food- not the same thing and not the same location. (My salivary glands were removed).
 
Jonathan Edwards said:
I think that is a bit pessimistic. Not all people with TB have swollen lymph nodes but swollen lymph nodes are a very good indicator of what is going on in TB!
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Is it possible to get biopsies from lymph nodes? Or is this too invasive and dangerous to do? Do you think there would be much to be gained from histology, flow cytometry or comparative omics of these tissues, or would it just confirm that yes there are tons of b cells in there without providing any useful information?
 
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