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Temperature abnormalities in ME/CFS patients in widely distributed regions

Many PwME complain of episodes of feeling as if they are running a fever although body temperature read by a thermometer is normal. I have these episodes. Often they are accompanied by chills exactly like one would experience with a high-grade fever. Other times I feel as if my body is hot, as if burning up with fever. Yet people who touch me say that I feel normal. Sometimes I will flush.

Both Dr. Susan Levine and Dr. Irma Rey told me they believe it is the virus reactivating (at least in my case). I don't know which virus, as I have elevated titers for non-active EBV, HHV6, and Parvovirus.

Now here is research from Dr Jarred Younger that measured the temperature of the brains of subjects with ME. During neuroinflmmation the heat cannot be taken away fast enough fro the brain. Could this explain why we often feel as if we are burning up or running a fever? Just my musings... what are your thoughts?

BTW, Younger et al say their 2019 findings indicate that ME/CFS involves neuroinflammation. Haven't we known that for a long time?

Brains are naturally hotter than the rest of our bodies.

Temperature in the brain rises when there is inflammation present, just like body temperature does during an infection.

Blood circulation acts to ‘cool’ the brain, by taking away ‘hot’ blood and replacing it with cooler, to tryand match the core body temperature.

During neuroinflammation, metabolic reactions are happening so quickly that more heat is being produced, meaning it is less easily taken away by the circulation, as it can’t keep up with the heat being produced.

Temperature in the brain rises when inflammation is present.

Build-up of heat in the brain can start to cause cognitive problems, balance problems and mood problems, which could explain some of the symptoms of ME/CFS.

Brain temperature is very sensitively controlled and so even a 1-degree difference would be enough to create symptoms.

https://www.meassociation.org.uk/wp...ests-brain-inflammation-in-MECFS-15.01.19.pdf

BTW I had this MRS done that is described in Younger's study. Mine was part of a clinical trial with Weil Cornell. The researcher NEVER interpreted my results and I have a CD with the images that none of my neurologists can make heads or tails of... thanks for that... much appreciated... very helpful... FML. DOES ANYONE KNOW WHERE I CAN HAVE THEM READ?
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W
Yes, sometimes I have elevated temperature, and may or may not feel hot. Other times I may feel hot, but my temperature is normal. There are probably different mechanisms in effect for actually altering body temperature and for feeling our body temperature (sometimes incorrectly).

I doubt that it's due to reactivated viruses. If it's a lengthy period of having or feeling abnormal temperature, then it's possibly a microbial infection. My episodes tend to be short term (hours or less), so I think it's more likely due to a temporary change in something, such as insulin, which might in turn affect immune system activation level.

I don't feel like digging out the research paper at the moment, but I got the impression that the brain scans showing elevated temperatures were showing fractions of a degree: statistically significant, but not in the 'raging fever' category.

I don't think that the localized elevation of temperature in the brain is likely to cause symptoms. It's just a sign that there's activity there. If you want to test whether it causes symptoms, try chilling your brain (ice pack or whatever) and see if that makes a difference. Hmmm, maybe placing the cold pack on the throat (carotid artery) would be more effective in chilling the brain?
 
Wolfcub
This is very interesting. Yes I get periods of time when I feel I am running a fever, usually during "crashes". My crashes have improved. They are (fingers crossed) not as harsh as they were.
But I got that exact feeling today. I felt feverish, but my temperature was 36.6. Twice that happened within hours.
I also sometimes get night sweats when I feel terribly hot, wake and take my temperature and the last time I did that it was....35.1 !! I mean, that is horribly LOW!

I have been inspired to wash my face and neck repeatedly in cold water (for a few minutes each time) It offers a little relief.
And oddly....light exercise also helps ! (which one would imagine might cause pem, and make things worse) Yet in such cases I have found -for me at least -that it helped. Probably because it stimulated my circulation? Of course I wouldn't recommend everyone should do that.
 
W
I too often find that when I feel feverish, my oral temperature is below typical for me. I think that something about being below typical confuses our sense of internal temperature. Maybe something pushes our thermostat down, and we feel hot relative to that, or maybe one part of out body cools down faster than another, and that temperature difference messes up our sense of temperature.

Maybe the light exercise moves more blood around and helps equalize those temperature differences?
 
I AM
A neurologist and a PhD in neurology both told me that exercise is excellent for moving oxegyn and all sorts of good stuff to the brain. The PhD said it is like a magical cocktail of good stuff. That's pretty compelling!

Perhaps Thyroid might explain some of the temperature regulation problems??? I developed low T3 at some point in this illness. So I take cytomel (previously took NP Thyroid). I would imagine that would correct the temperature dysregulation problems??? Blood tests show my T3 is in the normal range with medication.
 
W
Serious exercise, such as a 6-hr bike ride, doesn't trigger my PEM, but it doesn't have any noticeable positive effects on my ME either. No magic for me in that cocktail. :(

I did try T3 (desiccated pig thyroid) at one point. I didn't notice any change in my temperature regulation. T4 didn't seem to affect it either. The problem seems to lie elsewhere.
 
I AM
Probably dysautonomia and oxidative stress that are the culprits for the temp dysregulation.
 
W
I wouldn't be surprised if the autonomic system is malfunctioning. However, that's too complicated an area to be useful as an answer. I just accept that parts of my brain and body aren't working properly.

From the article, I quite liked the term 'cellular sludging' for clumps of sticky RBCs.. :)
 
I AM
:)

Wanted to ask, how do you not have PEM from hard exercise @Wishful ? Does anything cause you to have PEM? I was told this is a hallmark of ME/CFS, so I am surprised (and envious and encouraged).
 
W
I think my physically-induced PEM is triggered by tissue damage (which triggers the immune system to clean up the debris) rather than from simple exertion. Six-hour bike ride (after gradually working up to it): no PEM. Climb ladder a few times (without working up to it): bad PEM (24 hrs later). Basically, anything I do that uses muscles in a different way than they are used to, will trigger PEM.

Another example: shovelling soil. I can do that for hours without triggering PEM if I use the regular movements (stomp blade into soil, lift into wheelbarrow). If I do it differently, such as stabbing the shovel horizontally into the soil, that uses different muscle groups or different levels of strain and triggers PEM from only a few minutes of doing that. I'm pretty sure it's tissue damage -> t-cell activation -> IFN-g -> PEM.

Luckily, I discovered that cumin (Cuminum cyminum) will block my physically-induced PEM, at least unless I really overdo the activity. I don't know why it works, but I'm grateful that it does.
 
I AM
Wishful said:
I think my physically-induced PEM is triggered by tissue damage (which triggers the immune system to clean up the debris) rather than from simple exertion. Six-hour bike ride (after gradually working up to it): no PEM. Climb ladder a few times (without working up to it): bad PEM (24 hrs later). Basically, anything I do that uses muscles in a different way than they are used to, will trigger PEM.

Another example: shovelling soil. I can do that for hours without triggering PEM if I use the regular movements (stomp blade into soil, lift into wheelbarrow). If I do it differently, such as stabbing the shovel horizontally into the soil, that uses different muscle groups or different levels of strain and triggers PEM from only a few minutes of doing that. I'm pretty sure it's tissue damage -> t-cell activation -> IFN-g -> PEM.

Luckily, I discovered that cumin (Cuminum cyminum) will block my physically-induced PEM, at least unless I really overdo the activity. I don't know why it works, but I'm grateful that it does.
Click to expand...

This is all very fascinating. And I am curious on how to take the cumin. Please share. I'd like to try it. Thank you.
 

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