Poll: In pwME that report worsened sleep following exertion/excessive activity (or during PEM) what happens to your sleep during an acute infection?

It seems, for whatever reason, no one has expressed much interest in conducting a sleep study in ME/CFS. I wander whether such a study might not carry some valuable insights.

Above a poll can be found for people that report sleep problems in ME/CFS following exertion and what happens when those people experience an acute illness (the flu, a cold, an infection, Covid etc).

There appear to be pwME that report a worsened sleep pattern following exertion, respectively during periods where pwME experience PEM. Some even appear to loose the ability to sleep almost entirely, whilst others described their experience as a tired-but-wired feeling. I wondered whether this group of patients experience something similar or possibly even the opposite once they fall ill with an infection. I decided to only ask about sleep duration and not about sleep quality, as I find that a lot harder to quantify, but it may be more meaningful to ask a slightly different question that the one I asked.

I had to shorten the sentences to fit them into the poll format.

The poll should be read as follows: In pwME that report worsened sleep following exertion/excessive activity (or during PEM) what happens to your sleep during an acute infection? That is to say this poll only addresses those pwME that report a worsened sleep following exertion/excessive activity/during PEM.

The responses to the poll should be read as follows: I fulfil one of the CCC/SEID/IOM criteria vs I don’t fulfil one of the above criteria.

I’m aware that many pwME have to resort to using sleep medication which could possibly influence results of such a poll (for example if they stop taking sleep medication whilst sick). Please comment if there are things that are unclear and please let me know about all the things that are problematic with this poll.

 

Like many pwME, I don't seem to get infections at all (for many years) except one possible COVID infection in 2020, so I can't answer.

 

When relapsed from returning to work 32 years ago my sleep gradually went from sleeping very well to complete insomnia within 2 weeks. I could not turn my brain off. It's possible that I had a viral reactivation because I had other symptoms. Not sure.

I slept well when I contracted Covid and other viral over the years. Sometimes I experience hypersomnia too and ache all over. Not sure it's a viral though.

I find overexerting my brain has more of a negative impact on my sleep than physical overexertion PEM

 

I suspect I have two processes happening at the same time: a longer term cycle over 4 to 6 years, when I first developed ME, and since when I am in a major relapse, sometimes associated with a significant viral infection, I sleep a lot more, that is when what I refer to my underlying ME is getting worse, shorter term over weeks or months, when in PEM my sleep is disturbed and overall less, however often at such times my symptoms are indistinguishable from a mild viral infection or a mild cold, so I cannot be certain I do not have an infection at such times.

So I find the poll difficult to answer, but have chosen to consider the small number of unambiguous viral infections only when answering, though feeling ‘ill’ is also characteristic of more marked PEM episodes and I can not be certain there is no infection.

 

Thanks for the feedback. Yes I think the poll will struggle to capture rather complex situations.

I think you have answered the poll exactly in the way I thought would be sensible to ask this question. "Ill" indeed is supposed to only capture acute infections (something pwME that experince symptoms of PEM that are somewhat comparable to an acute infection, might only be able to be certain of if they develop a more characteristic symptom like fever or something similar), but I struggled quite a bit with the word limit that polls use and don't think I've done a particularly good job.

This comment does raise the issue that one might sometimes struggle to remember what happens in an unambiguous acute infections, if those periods are far less common than the general feeling of being ill. Additionally of course what happens in one acute infection might be very different to what happens in the next, making it hard to answer the poll or remember anything meaningful in regards to the poll.

 

That sounds like a good idea. The focus of the question is actually not whether someone meets every criteria of the CCC (I was planning to write CCC/IOM/SEID, so essentially definitions focused on PEM) but rather that I was trying to differentiate between what nowadays most people consider ME/CFS to entail vs what is described simply as chronic fatigue, what the oxford criteria describe or what Fukuda describes. Together with the word limit of the poll I don't think I did a very good job at bringing that across.

 

I've had only a couple of viral infections in the past 20 years, and I didn't notice any effect on my sleep. Also, my infections were generally short (couple of days), so not the sort of "I think I'm dying" for many days kind that some people report.

I do get insomnia if I do physical or cognitive exertion past maybe 2 PM. Strangely enough, the effect was blocked if I ate an egg in the afternoon or evening. I think that treatment has failed to work after a gut disturbance a few weeks ago, but maybe it's working again? Need more data.

Just checked the CCC again. I used to get physically-induced PEM, but haven't for several years (Thank you cuminum cyminum!). I sometimes get PEM from cognitive exertion, and sometimes not. All my other ME symptoms remain, so do I no longer qualify just because I managed to cure one aspect of ME? I think that would be unreasonable. ME pain also comes and goes, so technically, I only meet the criteria on some days. For some of the other criteria, I think I'm fudging a bit to include some of my symptoms. My oral temperature does vary between 36.0 and 37.6 without an active infection, but I don't know what is acceptable as "normal variation in humans".

I don't consider the CCC to be an absolute deciding system for who has ME. All the criteria systems probably work for some percentage of PWME, but doesn't quite fit some smaller percentage. The CCC is just better than Fukuda for research study cohort selection ... unless the goal is to have positive conclusions regardless of how useful or valid they are.

 

I find it hard to answer, partly because different infections come with different patterns, and partly because it tends to change during the course anyway.

Often with a run-of-the-mill cold, I feel quite energetic and have trouble sleeping the first night or two, then as it progresses I sleep better than usual.

If the cold features a cough or a really sore throat, it tends to mean worse sleep than usual.

Doses of Covid made me feel odd rather than ill, and I don't think there was any change in sleep patterns.

Vaccinations make me sleep much better—often it's deliciously good for two or three days. Which is why I'm generally reaching for my coat the minute I'm offered one.

 

Very hard to answer this poll. I never caught a cold in my very severe years. In the severe years I only remember a cold keeping me awake nearly all night due to the miserableness of blowing the nose all the time, sneezing and feeling the usual roughed-up-ness for the first few days. I wish I could remember how my sleep were affected after those first few days, whether I had more sleep with a cold.

One thing though, I vaguely don't think I have had a severe PEM during a cold.

 

Catching a virus leads to extra sleep for me. I start to sleep nights (with vivid dreams) and during the afternoon I can nod off as well.

The exception would be when I have a cough that keeps me awake.

It's not unusual for me to have a flu or cold that goes on to a sinus or chest infection now and lasts for weeks or months.

As time goes on I stop sleeping so much.

It's unusual for me to feel like sleeping in the afternoon unless I have a bug in the early stages bug it can come and go.

 

I usually feel all round much better when I am ill. I got the very first version of Covid and actually felt fantastic and super energised, even though I had a fever and a host of other symptoms. I have not had the same response to subsequent doses of Covid. Though I always sleep better.

 

Interesting..I have seen this mentioned on another thread.

As my ME got worse, and especially since getting covid, I get every cold or virus going..but then I also have two very young children that live downstairs from me and who don't seem to understand the purpose of doors or covering their mouths when they cough.

ETA: PEM causes me to wake up after 2-3 hours, and I am unable to go go back to sleep for at least an hour and not to deep sleep - mostly REM sleep. Getting a heavy bug makes me sleep more though.

 

Although usually viral infections make me worse for a protracted period, I experienced that once when I was returning to work on restricted hours. I was under pressure to increase my hours although they were too much for me and I slept all the time I wasn't in work. I caught the flu and at the end of it I felt better than I had in years. Because of that I agreed to increase my hours. Obviously it didn't last and I soon left work entirely.