Do you have fever as a part of PEM?

[Sasha]

I thought fever was common when in PEM? I get it every time.

I've never heard of this, but a quick forum search on 'fever PEM' brought up this from last Thursday (my bolding):

Talking of genuinely interested professionals, the Bateman Horne Centre says

"Patients experiencing PEM often describe “flu-like symptoms” (profound fatigue, weakness, fever, headache, dizziness, sore throat, chills, muscle and joint pain, enlarged lymph nodes), worsened cognitive symptoms (insomnia, brain fog, word-finding and concentration difficulties), and increased sensitivity to stimuli (noise, light, sound, odor, movement)."

That's a really big surprise to me.

Worth a thread of its own or a poll?

 

[OrganicChilli]

Worth a thread of its own or a poll?

Yes

 

[Sasha]

I don't think fever has been documented reliably in ME//CFS. If it hasn't and it occurs then it is about time it was documented. It would be of crucial importance to our understanding.

Worth a thread of its own or a poll?

Yes

Any thoughts about how to put the question for a poll, @Jonathan Edwards? How about something as simple as, 'Do you experience fever during PEM? [Always/sometimes/never}'? Do you want a question in there about confirming temperature (I'd be a bit surprised if people measure it, though)?

 

[OrganicChilli]

I'd be a bit surprised if people measure it, though

I have measured it! And the result was no fever, but I definitely felt feverish.

 

[Sasha]

The first DecodeME questionnaire has this item:

Cold or flu-like symptoms​

14. In the last 6 months, have you had any of the symptoms below often, repeatedly, or​

constantly? Please mark any that apply. If none apply, leave all the boxes blank.​

 Fever or chills​

But not in relation to PEM.

The Bretherick et al. DecodeME paper on the questionnaire data says:

In a previous study, three symptoms were reported significantly more often by females than males: fever, swollen glands, and sore throat 34 . In our study, we replicated these findings, and found a further 59 of 80 ME/CFS symptoms that are also female-biased.

I can't immediately see the data on fever, though, and again, it's not in relation to PEM.

 

[Yann04]

Any thoughts about how to put the question for a poll, @Jonathan Edwards? How about something as simple as, 'Do you experience fever during PEM? [Always/sometimes/never}'? Do you want a question in there about confirming temperature (I'd be a bit surprised if people measure it, though)?

I think only counts if people meausre it. Early in my illness was convinced I was fevered but turns out my objective temperature was completely normal.

Also, add a disclaimer to the question to not answer yes if the PEM coincided with probable viral infection?

 

[Utsikt]

Any thoughts about how to put the question for a poll, @Jonathan Edwards? How about something as simple as, 'Do you experience fever during PEM? [Always/sometimes/never}'? Do you want a question in there about confirming temperature (I'd be a bit surprised if people measure it, though)?

Maybe give the option to answer «It feels like a fever but I’ve not measured it» and «I’ve measured that I have a fever».

 

[Jonathan Edwards]

Yes, I would limit a poll to measured raised temperature.
In this context I would take raised as above 36.8°C.

 

[Yann04]

36.8°C.

That low? My average temperature is like 37.1 when I measured it. And 37.7 during bad PEM (probable viral infection).

 

[Jonathan Edwards]

Interesting.

If there is a simple wearable measuring device (maybe an armpit probe) I would be very interested in temperature traces for people with ME/CFS versus controls. Not just odd readings but diurnal and month-based patterns.

 

[tuha]

First 7 years I almost always got higher temperature after walking. I measured it often and it was always around 37,1 - 37,3. After 1 hour of laying down after walking my temperature was under 36,8. The higher temperature wasnt related to PEM but it was related to higher physical activity.
After 7 years I got worse but if I walk I dont get higher temperature.

 

[Sasha]

Yes, I would limit a poll to measured raised temperature.
In this context I would take raised as above 36.8°C.

Should the question be restricted to fever during PEM?

 

[Utsikt]

I found this:

Research Using CALERA®

Discover CALERA® Research for accurate core body temperature monitoring. Apply for a chance to receive 10 free devices for sleep research proposals. Get quality data remotely and non-invasively.

info.greenteg.com

 

[Sasha]

Interesting.

If there is a simple wearable measuring device (maybe an armpit probe) I would be very interested in temperature traces for people with ME/CFS versus controls. Not just odd readings but diurnal and month-based patterns.

Can we make that happen?

 

[Jonathan Edwards]

Should the question be restricted to fever during PEM?

No, I don't think so

 

[sneyz]

That low? My average temperature is like 37.1 when I measured it. And 37.7 during bad PEM (probable viral infection).

I’m also in this range, which is somewhat higher than my pre-ME levels.

I measure with an ear thermometer frequently. I quite consistently messure a ≈0.5 C increase from baseline when in PEM.

This device also seems fit for purpose:

The STEADYTEMP® sensor - the power behind the patch

STEADYTEMP® is more than just a temperature sensor patch. The free Health Journal app is a Digital thermometer, Symptom Tracker and exportable Medical Record.

www.steadytemp.health

On a somewhat related note:

For me, finger prick/capillary lactate levels usually skyrocket in the same timeframe (> 10 mmol/L). I’v been wondering if it would mirror venous lactate or not. This might be a crude way to test it’s a failure to adequately deliver oxygen peripherally. If so, might there be a role for shifted metabolism or reduced heat exchange propagated by the peripheral left-right shunting proposed by Systrom?

 

[Jonathan Edwards]

I found this:

A snip at 1000 swiss Francs!

 

[Sasha]

No, I don't think so

So just, 'Do you get fevers? [Yes, confirmed by a measured raised temperature above 36.8°C / Yes, but not confirmed by that measurement / No]'?

I'm thinking it's probably better to give people somewhere to dump their feverish feelings in case they feel that the tight definition of fever fits any fever experience than just 'No'.

 

[Utsikt]

And this that apparently is comparable to other methods used at hospitals:

Frontiers | Comparing body temperature measurements using the double sensor method within a wearable device with oral and core body temperature measurements using medical grade thermometers—a short report

Body temperature is essential for diagnosing, managing, and following multiple medical conditions. There are several methods and devices to measure body temp...

www.frontiersin.org

The wearable chest patch device (BB-613P, Biobeat Technologies Ltd., Petah Tikva, Israel) is a wireless, wearable, noninvasive device that implements reflective photoplethysmography (PPG) technology which allows capturing unique characteristics of the PPG wave, including original wave markers. The PPG sensor provides pulse rate, respiratory rate, cuffless blood pressure, blood oxygen saturation, stroke volume, cardiac output, and more (Eisenkraft et al., 2023). On top of the PPG sensor, the chest patch provides body temperature using the double sensor method (Figure 1),

$140 based on this:

BioBeat Chest Patches and COVID-19 - Incarta

The BioBeat Chest Patch or sensor is one of a new generation of wearable physiological monitors that has become available in the last few years. It is a regulated clinical device and Incarta was the first company to register the device with the Therapeutic Goods Administration (TGA) for sales in...

incarta.com.au

 

[jaded]

I’ve had a mild/low grade fever along with excessive sweating since my ME became more severe for at least 10 years now. Baseline 37.4 quite easily up to 37.8 or higher. Nurses and doctors always remark “do you feel unwell” and of course nothing is followed up on once infection is ruled out. I’ve always assumed it could be chronic immune activation of some sort or hypothalamic dysfunction.