Do you have fever as a part of PEM?

Sasha said:
Can we make that happen?
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There needs to be some active investigator interested. Fluge and Mella are usually the first to get on to new ideas.

The Calera wearables do seem a bit pricy.

But it would be the easiest thing to do and if it came up with a clearly abnormal pattern even Paul Garner might find it hard to ignore. Diseases have different temperature profile patterns. If fever occurs in ME/CFS it is likely to have a unique temporal signature.
 
Jonathan Edwards said:
There needs to be some active investigator interested. Fluge and Mella are usually the first to get on to new ideas.

The Calera wearables do seem a bit pricy.

But it would be the easiest thing to do and if it came up with a clearly abnormal pattern even Paul Garner might find it hard to ignore. Diseases have different temperature profile patterns. If fever occurs in ME/CFS it is likely to have a unique temporal signature.
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How many PwME and controls do you think it would need?
 
sneyz said:
The steadytemp patch is cheap (15€ a piece). Don’t know how long it lasts for. Presumably till it falls off?

STEADYTEMP® - das smarte Thermometer für dein Kind

Das Gesundheitstagebuch für dein Kind: Mit Patch und App zeichnest du die Themperaturkurve und gibst Symptome und Medikamente ein.
shop.steadytemp.health shop.steadytemp.health
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Says it lasts 10 days. It should be removed after to avoid irritation. Maybe swapping between left and right might allow continuous monitoring?
 
Something like this would be a lot cheaper, if they're reliable enough:

www.medisave.co.uk

Non-Contact Infrared Forehead Thermometer

Temperature taking has never been easier with the Non-Contact Thermometer. Providing convenience, accuracy and precision when taking a temperature. With the push of a button, it instantly and accurately takes a person’s temperature without the need of any physical contact. Simply point at the...
www.medisave.co.uk www.medisave.co.uk

I don't know much about them, though. I think I've had a high fever twice in my life, so I've never looked into it.
 
I was interested in monitoring my temperature once. I bought a ~$10 mouth thermometer from the drug store.

It was so unprecise. I would measure it three times in a row within seconds of each other, and it'd be a different temperature every time (I think a span of about 1°F). Maybe good for large changes, but not for subtle changes.
 
Kitty said:
Something like this would be a lot cheaper, if they're reliable enough:

www.medisave.co.uk

Non-Contact Infrared Forehead Thermometer

Temperature taking has never been easier with the Non-Contact Thermometer. Providing convenience, accuracy and precision when taking a temperature. With the push of a button, it instantly and accurately takes a person’s temperature without the need of any physical contact. Simply point at the...
www.medisave.co.uk www.medisave.co.uk

I don't know much about them, though. I think I've had a high fever twice in my life, so I've never looked into it.
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I think JE mentioned that we’d want continuous measurements, not just one offs. So we’d need something wearable.
 
The Steadytemp raw data might need a fair bit of brushing. From the published evaluation paper it looks like it would be capable of detecting trend shifts in individuals, but might not be ideal for comparing absolute temperatures between groups.

www.frontiersin.org

Frontiers | Investigation of Non-invasive Continuous Body Temperature Measurements in a Clinical Setting Using an Adhesive Axillary Thermometer (SteadyTemp®)

Since the human body reacts to a variety of different diseases with elevated body temperature, measurement of body temperature remains relevant in clinical p...
www.frontiersin.org www.frontiersin.org
 
Fever-like at the worst times, e.g. serious hot and cold flushes, problems with general temperature regulation, shakes/tremors, extreme night sweats (waking up in a soaked bed, in the middle of winter, for nights on end), sore and somewhat enlarged glands mainly in the neck region.

Don't know if that is technically a fever. But easy to see how it could be interpreted as one.
 
I have very poor temperature regulation in PEM, I swing between boiling and freezing. I've also have the night sweats etc.

But it's not like the fever you get with 'flu or measles, where your face and chest are scarlet and hot to touch. I suspect my temperature's normal and the thermometer in my brain's gone haywire.
 
Papers relating to body temperature and ME/CFS:

Dissociation of body‐temperature and melatonin secretion circadian rhythms in patients with chronic fatigue syndrome, 1996

Core body temperature is normal in chronic fatigue syndrome, 1998 - Fukuda

Chronic fatigue syndrome and abnormal biological rhythms in school children, 2000

Circadian rhythm of core body temperature in subjects with chronic fatigue syndrome, 2001 - Fukuda

Abnormal Thermoregulatory Responses in Adolescents With Chronic Fatigue Syndrome: Relation to Clinical Symptoms, 2007

Psychological stress contributed to the development of low-grade fever in a patient with chronic fatigue syndrome: a case report, 2013 - Holmes, Fukuda

Circadian rhythm abnormalities and autonomic dysfunction in patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, 2018 - Fukuda, CCC

Skin Temperature Circadian Rhythms and Dysautonomia in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: The Role of Endothelin-1 in the Vascular Tone Dysregulation, 2023 - ICC

Sleep and circadian rhythm alterations in myalgic encephalomyelitis/chronic fatigue syndrome and post-COVID fatigue syndrome and its association with cardiovascular risk factors: A prospective cohort study, 2024


Brain temperature specifically:

Evidence of widespread metabolite abnormalities in Myalgic encephalomyelitis/chronic fatigue syndrome: assessment with whole-brain magnetic resonance spectroscopy, 2019
 
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Measuring skin temperature doesn’t necessarily correlate with core temperature and there may be different mechanisms driving the two, so that needs to be taken into account when trying to interpret any results

My own core temp (measured under the tongue) is invariably low at around 36.1-36.3°C and forehead with a No Touch thermometer is similar when nothing else is going on

Straight after overdoing things badly core temp can drop further to as low as 34°C (never measured skin at the time)

Once in PEM sometimes core temp rises a little to close to 37°C but it’s not consistent, it may correlate with PEM severity but I’m not sure

However I often feel distinctly feverish, both with PEM but also when just sitting up for a little bit too long (not even necessarily long enough to get PEM after)

During those ‘feverish’ periods my skin can get quite hot and a No-touch forehead thermometer will register a ‘fever’, usually just above 38°C. BUT measuring under the tongue at the exact same time shows at most only a very minor rise in core temp and often none at all

So for me the ‘feverish’ feeling seems to be more a matter of increased blood flow to the facial & sometimes upper body skin than anything internal. More like a hot flush except it comes on more slowly, lasts longer and there's no sweat involved

Worth noting that I have Raynaud’s as well as something erythromelalgia-like going on so may be unusually predisposed to blood flow dysregulation. However, I’ve seen similar ‘fever’ reports to mine from people who afaik don’t have those additional complications

We really need to be measuring both temps at the same time I think, to really get an idea of what's might be driving the sense of fever

I'd also like to see anyone doing CPET studies anyway to measure temp at several time points to see if they can pick up that temporary major drop in temp after over exertion some of us get
 
The majority of my temperature recordings are 36.6-37.1C in the period 2020-2022, 25 entries.

In PEM I get the chills, weakness and other symptoms mentioned by the Bateman Horne Centre.

I never took my temperature in the severest of years.

I just had to edit my post because I thought I had taken all the temperatures while I had a headache. I remember some were taken when I had the headache with the heat that I get in my head but not all.
 
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Sean said:
Fever-like at the worst times, e.g. serious hot and cold flushes, problems with general temperature regulation, shakes/tremors, extreme night sweats (waking up in a soaked bed, in the middle of winter, for nights on end), sore and somewhat enlarged glands mainly in the neck region.

Don't know if that is technically a fever. But easy to see how it could be interpreted as one.
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Me too, except the extreme night sweats. We did however buy a wool mattress topper and it's been very good for temperature regulation when sleeping and even if I get night sweats it feels more dry than other types of mattresses we've had.
 
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