Circadian rhythm disruption in [ME/CFS]: Implications for the post-acute sequelae of COVID-19, 2022, McCarthy

[bobbler]

Let's face it, sleep is a dynamic process not rest so it is not wonder our ME bodies can't do it properly.

Maybe in the early days the body is trying to fix viral damage in the brain by having lots of sleep but eventually there is not enough energy produced so it can't be sustained.

We do not know how hard the body systems are is working to compensate for our low levels of energy. The brain, heart and lungs take what they need as a priority but there may come a time when the flow of oxygen does not leave enough for the extra effort of the brain to fix its damage so it stops trying and maybe does not have enough to spare to initiate proper sleep.

We may still feel we are doing OK but we are working to our limits without the spare energy available to healthy people.

What you suggest sounds pretty viable, and makes me think of when you see on a TV programme someone put into induced coma to heal - now I'd be interested to hear the science and reasons around those scenarios.

It's an energy-limiting condition. It should make far more sense than many of the other pushed ideas, just by logic being employed as long as that categorisation is heeded. These things could be indicators of progression and things going on in the body.

Which makes the 'symptom-focus' approach massively flawed, particularly when instead of hearing the exact description of issue described by the patient (can't sleep when overdone it) into another box simply because it is already there by virtue of one of the words ('sleep'). Before insulin was discovered people weren't sent to fatigue departments and other things based on their broader dumping pot for each symptom were they? You are basically separating out key indicators that lead to what is actually going on in the body then lowest common denominatoring across conditions (rather than even compare and contrast which could be more interesting insight).

 

[Trish]

Some posts have been copied to this thread:
Is ME a metabolic problem or a signalling problem?

 

[alex3619]

It is possible that mitochondrial disease may be misdiagnosed as ME but I suspect no more likely than all sorts of other diseases.

I recall reading an old commentary by an MS expert in the 90s, I forget the details, in which he said there were patients clearly with MS, another group clearly with ME, and in the middle a group in which it was hard to decide which it was. I think these kinds of issues are much more common than we realize. People are sick, they have similar symptoms, and sometimes the clinical tests do not identify enough markers to be sure which diagnosis is more accurate.

While we can use clinical definitions like the ICC to decide if its ME, until we have biomarkers we simply cannot be sure. We cannot even be sure if ME is one disease or several.

 

[Jonathan Edwards]

I recall reading an old commentary by an MS expert in the 90s, I forget the details, in which he said there were patients clearly with MS, another group clearly with ME, and in the middle a group in which it was hard to decide which it was. I think these kinds of issues are much more common than we realize.

The situation is certainly very complex and all sorts of confusions are possible. On the other hand in the 1990s I think quite a lot of neurologists would have pigeonholed anyone with odd neurological symptoms without signs into 'ME' either because they believed ME had odd neurological symptoms or because it was convenient. I think nowadays it is generally agreed that neurological symptoms do not particularly point to ME at all.

 

[rvallee]

I think nowadays it is generally agreed that neurological symptoms do not particularly point to ME at all.

Uh, what? Most symptoms are neurological and we see the same with LC where many early neurological symptoms are one of the best predictors. Most of our symptoms are neurological, if not by burden at least by number.

I get that it's generally agreed. It's blatantly wrong, though.

 

[Wonko]

Is this not simply a reflection that 'some' neurologists behave as if they believe ME is psychiatric, at 'best' or something else that simply isn't their department.

Therefore if ME isn't within the province of neurologists then any neurological symptoms must be irrelevant to a diagnosis of ME?

 

[Trish]

2 posts have been copied and some more posts moved to this thread:
What differentiates ME/CFS from known primary mitochondrial diseases; could mitochondrial disease cause PEM?

 

[Andy]

The possibility of circadian rhythm disruption in long COVID

"Dear Editor

We read with great interest the recent review of circadian rhythm disruption in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and the implications for the post-acute sequelae of COVID-19 (PASC) (McCarthy, 2022), also known as “long COVID”. In this review, McCarthy discusses the possibility that immune and inflammatory responses following viral infection could contribute to circadian disruption and drive ME/CFS symptoms (McCarthy, 2022). This in turn suggests that circadian-based treatments could offer some therapeutic benefits to people suffering from these disorders. Emerging research supports this, as morning bright light treatment which phase advances (shifts earlier) and stabilizes circadian timing, has been found to be beneficial in reducing depressive symptoms, fatigue, pain and in improving sleep quality in a variety of disorders from breast cancer to fibromyalgia (Burgess et al., 2017; Ancoli-Israel et al., 2012). These early results are promising, but require further investigation in larger samples."

Open access, https://www.sciencedirect.com/science/article/pii/S2666354622000667

"Declaration of competing interest

Dr. Burgess serves on the scientific advisory board for Natrol, LLC, and Moving Mindz, Pty Ltd, and is a consultant for F. Hoffmann-La Roche Ltd. Dr. Goldstein is the part inventor of a circadian rhythm mobile application licensed to Arcascope, LLC, on the medical advisory boards of Huxley Medical, Inc. and eviCore, and receives royalties from UpToDate."

 

[Samuel]

fwiw tried using lights in late 1990s or so. designed for purpose in specific wavelength. did not change circadian.

 

[bobbler]

fwiw tried using lights in late 1990s or so. designed for purpose in specific wavelength. did not change circadian.

100% agree. Used a bright light box for years not that long ago.
I'd be looking very closely at their timeframe for 'outcomes' and what specifically they think they are measuring given the likelihood that you can force people to try and sleep at set times, but the likelihood of relapse ie it actually making someone more ill in the name of 'normalising sleep timings' for a few months seems a big possibility.

 

[alex3619]

The problem with light therapy for circadian adjustment is its one of at least fifteen factors that affect circadian rhythms, and many of these are implicated in ME.

I used early morning sunlight, at dawn, to some limited effect back as a mild patient. Not sure it had any impact once I got worse.

 

[Samuel]

[i am posting old posts in my n>2000 firefox tabs. at current state idk if this or others make sense but i do not want to discard all of them.]


"we" in your description struck me as potentially significant here. idk if this kind of thing is typically recognized as a clue.

the 2 of you might or might not share similar env [latitude, diet, pesticides, whatever] and history and same relevant genes or so, ...

... but the correlation of your symptoms suggests that the changes are maybe /not/ here driven by internal changes that seem outwardly arbitrary [pathogen/immune perhaps or metastable processes etc.], or env and behavior that you do not share [meetings, travel, etc.].

narrowing it. so in principle if this type of thing could be investigated comprehensively it might lead somewhere interesting for m.e.?


as for the degree of upstreamness of circadian issues discussed or implied elsewhere on this thread [sorry, i am not keeping track well]:

[BEGIN ARRANT SPECULATION] besides the research and anecdotes, imagine that humans have, say, 16 circadian clocks/processes that are potentially significantly relevant. maybe some entrain others or something, idk. i am just roughly sketching an image here.

now imagine that some of these circadian processes control healing or waste removal. [those are undefined words, please bear with me.]

it might make sense evolutionarily to do this at certain times. perhaps certain inputs [chemicals/nutrients] are in the ancestral env typically available at certain times or so. perhaps you are up and about at certain times if you are healthy and it doesn't make sense to do the healing stuff then for some reason. or perhaps you want to do it when predation is less likely or something. [this is unevidenced evolutionary handwaving; please bear with me.]

now, if one process gets out of sync [e.g. during day instead of while sleeping], it might not have the infrastructure it needs to do its job well. e.g. the other processes or nutrients etc. in such a case, you might build up metabolic waste or you might not heal well internally.

and if it is not connected to clocks that control sleep or other obvious things, for whatever reason, then you might not /notice/ any circadian sleep effect. but it could in principle be pretty upstream even if sleep per se [viz. what you notice] is not upstream for you.

[ok, end arrant speculation. [idk if this was useful or relevant. i am incapable of anything.]

Insomnia and sleep phase shift are features for my daughter .
Sleep issues worsened after year 3 , but also as overall health got worse.Quality if sleep has gotten worse too.

Sleep shift has been more pronounced for past 28 months - we have had a weird temporary blip of normality for about 10 then 5 days mid March for past 2 years. Despite trying everything to " keep" normality it flips back again slowly. Currently sleep is between 4-5am and 11am - 12 noon ish.
I thought the genetic expression link to African Sleeping sickness was interesting as this illness is a complete sleep reversal .

We also have insomnia the night before start of period and sometimes the night after it.
Lack of sleep induces horrible itchiness.

 

[Amw66]

[i am posting old posts in my n>2000 firefox tabs. at current state idk if this or others make sense but i do not want to discard all of them.]


"we" in your description struck me as potentially significant here. idk if this kind of thing is typically recognized as a clue.

the 2 of you might or might not share similar env [latitude, diet, pesticides, whatever] and history and same relevant genes or so, ...

... but the correlation of your symptoms suggests that the changes are maybe /not/ here driven by internal changes that seem outwardly arbitrary [pathogen/immune perhaps or metastable processes etc.], or env and behavior that you do not share [meetings, travel, etc.].

narrowing it. so in principle if this type of thing could be investigated comprehensively it might lead somewhere interesting for m.e.?


as for the degree of upstreamness of circadian issues discussed or implied elsewhere on this thread [sorry, i am not keeping track well]:

[BEGIN ARRANT SPECULATION] besides the research and anecdotes, imagine that humans have, say, 16 circadian clocks/processes that are potentially significantly relevant. maybe some entrain others or something, idk. i am just roughly sketching an image here.

now imagine that some of these circadian processes control healing or waste removal. [those are undefined words, please bear with me.]

it might make sense evolutionarily to do this at certain times. perhaps certain inputs [chemicals/nutrients] are in the ancestral env typically available at certain times or so. perhaps you are up and about at certain times if you are healthy and it doesn't make sense to do the healing stuff then for some reason. or perhaps you want to do it when predation is less likely or something. [this is unevidenced evolutionary handwaving; please bear with me.]

now, if one process gets out of sync [e.g. during day instead of while sleeping], it might not have the infrastructure it needs to do its job well. e.g. the other processes or nutrients etc. in such a case, you might build up metabolic waste or you might not heal well internally.

and if it is not connected to clocks that control sleep or other obvious things, for whatever reason, then you might not /notice/ any circadian sleep effect. but it could in principle be pretty upstream even if sleep per se [viz. what you notice] is not upstream for you.

[ok, end arrant speculation. [idk if this was useful or relevant. i am incapable of anything.]

Thank you for these suggestions.

Sleep seems to be a family thing. So SNPs may play a role My son ( who also had significant post viral issues post glandular fever - may or may not be a connection ) , has sleep issues.

His insomnia is awful. He simply dosnt sleep. If he does get a couple of hours it's after 5am - similar pattern to his sister re timing. This goes on for a few weeks, resolves and then comes back.
Weird.

GPs first instincts were anxiety ( seems to be the go to for everything) , but meds for this made things worse.

I think there's something in the body not clearing things. Sleep is a science which is constantly unfolding but I think there's still a long way to go before we discover all its functions.