Sleep symptoms are essential features of long-COVID – Comparing healthy controls with COVID-19 cases of different severity 2022 Merikanto et al

Full title: Sleep symptoms are essential features of long-COVID – Comparing healthy controls with COVID-19 cases of different severity in the international COVID sleep study (ICOSS-II)

Summary

Many people report suffering from post-acute sequelae of COVID-19 or “long-COVID”, but there are still open questions on what actually constitutes long-COVID and how prevalent it is. The current definition of post-acute sequelae of COVID-19 is based on voting using the Delphi-method by the WHO post-COVID-19 working group. It emphasizes long-lasting fatigue, shortness of breath and cognitive dysfunction as the core symptoms of post-acute sequelae of COVID-19.

In this international survey study consisting of 13,628 subjects aged 18–99 years from 16 countries of Asia, Europe, North America and South America (May–Dec 2021), we show that post-acute sequelae of COVID-19 symptoms were more prevalent amongst the more severe COVID-19 cases, i.e. those requiring hospitalisation for COVID-19. We also found that long-lasting sleep symptoms are at the core of post-acute sequelae of COVID-19 and associate with the COVID-19 severity when COVID-19 cases are compared with COVID-negative cases. Specifically, fatigue (61.3%), insomnia symptoms (49.6%) and excessive daytime sleepiness (35.8%) were highly prevalent amongst respondents reporting long-lasting symptoms after hospitalisation for COVID-19. Understanding the importance of sleep-related symptoms in post-acute sequelae of COVID-19 has a clinical relevance when diagnosing and treating long-COVID.

Open access, https://onlinelibrary.wiley.com/doi/10.1111/jsr.13754

 

They seem to be lumping Post Exertional mailaise into Fatigue for some reason. They have the usual list of symptoms but then they almost immediately blame the entire condition on sleep problems. They have PEM as the second most reported symptom but give it no real consideration at all. I find this a bit of an insidious view given the following quote and gives some view into their thinking for which they show no data:

And thus the conclusion I guess we expected to see having dismissed PEM and some really severe symptoms is:

There you have it, PASC is just a sleep syndrome even though sleep problems isn't a top 3 in their collected data. Its actually 8th as "daytime sleepiness" which is the closest they get and that must be combining the tired feeling as well as sleep disruption causing daytime sleepiness.

I mean it is the journal of sleep research....

 

The title doesn't even make sense, sleep is not a main issue. They're totally mistaking fatigue for tiredness because of poor sleep, are they? Because they're sleep experts and as usual only see what's happening from their perspective in their immediate environment.

Oh, FFS. Experts are supposed to pay attention to details and here they are following the jiggly keys every time they jiggle.

This system where different siloes only ever see the insides of their siloes and never look out, with no one working on the big picture, is basically like the usual image of different blind people touching parts of an elephant except it's not even an accident, it's by design, and no one seems to care to do it differently.

 

People with Long Covid be ready for the ‘sleep police’.

I agree people should have information on sleep hygiene and be supported in exploring if gently trying to re adjust sleep patterns helps or not, but it is important to remember our current cultural sleep norms don’t necessarily reflect a biological imperative, we don’t know whether our sleep disturbances are up or down stream of the underlying deficits or if trying to police our sleep patterns is helpful or counter productive.

Personally in relation to my ME, now 30 years in, I find that going with what my body tells me, eg day time naps if I need to, distract myself by watching TV in the middle of the night if I can’t sleep, etc reduces the negative impact of my sleep disturbances, whereas fighting to sleep seven or eight hours through from ten or eleven pm without any day time naps or lots of rest lying down leaves me even more tired and feeling worse. Obviously this was only fully possible after I was forced to take ill health retirement some eight years into my ME.

In ME we have no evidence whether imposing sleep laws is helpful or counter productive and no one has systematically investigated this. It is looking like we are seeing the same emerging in Long Covid.

 

IMO, LC is not caused by sleep dysfunction. Problems with sleep can worsen other symptoms, but sleep hygiene will not cure LC, nor ME. That's my personal opinion from lived experience, and more in-depth testing that took decades to realize.

ETA: yes, better sleeps can assist, but they don't eradicate the physiological causes.

 

I don't think any patients think sleep is anything but a side effect. If you push to PEM your sleep gets worse, its not that the sleep goes first and then you suffer PEM its clearly the other way around. You can force your sleep with drugs and you wont improve your condition, they don't have any tools for this that have shown any effect on core ME symptoms so far. But I guess if the BPS crowd can get in on the gold mine some sleep based studies can get on that sweet sweet research money.

 

Agree, this reads as sleep disturbance underlies the problem and people just need to fix that — they might even try to argue that it causes the low cortisol findings.

I'd far rather see these researchers looking out of their silo and recognising that sleep disturbance is an association, not a cause. Then they could collaborate with other researchers and see how it links to neuroinflammation, eg through the new imaging modalities (1, 2) and maybe show something useful.

 

Agreed.

Unfortunately, there are some biomeducal specialities who have a narrow view of ME and claim it for their own. Likewise for LC. These specialists appear to think these diseases fall entirely in their bailiwick, when of course, they do not.

It's also unfortunate that some with ME have to deal with protocols and treatments offered by these specialities. Treatments and protocols which effectiveness is exaggerated and overblown.

 

Thought this was gonna be an interesting paper, but we've been let down. They make no connection between LC and ME. They neglect the importance of PEM. And why don't they look at unrefreshing sleep? It's a main symptom of ME, and I bet many pwLC have it too.

 

It's dismaying to see researchers and clinicians discovering a new disease and making observations that us patients with ME (and their ME experts) have known for several decades. Yes, sleep is disrupted. And no, the "fatigue" is not due to the lack of sleep.

Yes, people get worse after "exercise" and no, it's not due to deconditioning.
Yes, patients may be freaking out when they can't do very much, can't work, can't get out of bed months following their COVID infection that seemed trivial, and no they are not anxious or depressed. It may well be that their reaction to this new normal is understandably normal, taking into account that their health care provider is absolutely clueless and accusing them of not trying hard enough, or faking their symptoms or (fill in the blank)
Yes, lab work and medical imaging may be completely normal but the patients still have severe symptoms.

It is triggering to me to read these kind of papers, because invariably, they will have conclusions such as
-bad sleep hygiene
-not enough exercise
-bad mental health, need meds, need CBT
-hypochondriasis

 

Yep.

 

@Peter Trewhitt

I've had a similar experience and results when avoiding naps, and trying to as you say, fight to sleep 7 or 8 hours straight. I feel worse.

However, 7 or 8 hours of consecutive sleep per night appears to be the rule promoted by sleep experts. And, it seems at least according to some of these experts, this is the cure for ME/"cfs".

 

This doesn't give it enough credit. We've known this for decades, but in the case of long haulers, on the whole they understand this within months at most. Complete amateurs, most with no medical training, understand in a matter of months what medicine is still incapable of understanding after decades. Simply because of lived experience.

It's not just easy to figure out, it's easy to figure it out in a matter of weeks, months at the most, even while sick to the point of being unable to take care of themselves, with headaches and memory and executive impairment. This would be like a huge team of world class engineers unable to fix a problem when some drunk just homes right on the issue and solves it in 5 minutes. Makes no sense, this stuff simply doesn't happen in other professions. It's the stuff of jokes for some TV shows where they have this gritty detective who just rolls their eyes at the genius techies missing the obvious solution.