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- Almost everyone with this disease experiences non-restorative/non-refreshing sleep and indeed, non-refreshing sleep is one of the core criteria of ME/CFS.
- For me, my scores on my Oura ring suggest sleep plays a major role, indeed. My readiness scores – in part a reflection of autonomic nervous system functioning – are highly correlated with my sleep scores but my activity scores are not. Sleep, not activity, is most impacting my “readiness” according to the Oura ring.
- Dr. Mullington, a Harvard Medical School sleep researcher, has long been interested in ME/CFS – and now due to Open Medicine Foundation funding, she’s engaged in a rare, comprehensive sleep study that’s examining sleep in ways that have never been done before.
- She will attempt to determine how sleep quality affects fatigue. This is the first study to assess orexin-A – a wide-ranging neuropeptide that affects nighttime and daytime sleepiness – in the cerebral spinal fluid. Twenty-four-hour cortisol and melatonin levels, EEG (electrical brain wave) activity, sleep fragmentation, and other factors will also be assessed.
At least for me, sleep appears to loom larger than any other factor regarding my autonomic nervous system. I would have thought that activity would be a key factor, but my readiness scores on my Oura ring are far more correlated with my sleep scores (total sleep, sleep latency, efficiency, timing, REM, and deep sleep) than with my activity levels (steps per day, calories burned).
Unrefreshing sleep is one of the core criteria for ME/CFS.
(Note that some correlation is built in, as some of the same factors are used to develop both scores. Sleep: total sleep, sleep latency, efficiency, timing, REM, and deep sleep. Readiness: resting heart rate, HRV balance, temperature, recovery index, sleep, sleep balance, sleep regularity, previous day activity, activity balance.)
The Oura ring is not some magic tell-all ring. Because it focuses on basic autonomic nervous system, activity, and sleep measures, it can only give us limited data points about what’s going on in ME/CFS.
In general, it’s been a pretty good indicator of functionality for me – and less so for symptoms. I’ve had high readiness scores and been highly symptomatic and vice versa, but generally, it tracks.
At one point the ring told me a cold was coming the day before it showed up.
Activity /Readiness Score Correlation – Oura Ring
This was a big shock – no correlation between activity levels and readiness scores! I did not see that coming. My activity score (blue) is pretty consistent, but look at the occasional big drops and rebounds in my readiness score (black) during times when my activity levels have not changed.
My activity levels are not correlated with my sleep scores on the Oura ring.
My sleep scores (black) on the other hand, are highly aligned (r:.70) with my readiness scores (blue): they track them amazingly well. This suggests that improving my sleep could be quite beneficial. Interestingly, my partner’s sleep scores do not track with her readiness scores.
My sleep scores are highly aligned with my readiness scores on the Oura ring.
Major ME/CFS Sleep Study Underway
Given that, it was very good to see the Open Medicine Foundation fund a small but extensive examination of sleep in ME/CFS. The leader of the study, Janet Mullington PhD, is a professor of neurology at Harvard Medical School and is doing her study at the Beth Israel Deaconess Medical Center.
She was the senior author of a review paper on chronic pain and sleep, orexin and sleep, and has conducted several studies on sleep and inflammation and sleep and circadian rhythms. In her book chapter, “Causes and Consequences of Chronic Sleep Deficiency and the Role of Orexin,” Mullington’s description of the brain fog associated with insomnia rings true for ME/CFS patients:
“The brain fog, the dragged down feeling, and the lack of energy and motivation or ability to do much of anything, the bodily discomfort and irritability, are all symptoms of insufficient or deficient sleep that most of us have experienced, at least transiently.“
The Open Medicine Foundation Study
Dr. Mullington has long been interested in ME/CFS.
With the first major sleep study characterizing ME/CFS underway, I wanted to talk to Dr. Mullington about the study and her interest in sleep and ME/CFS.
It turned out that Dr. Mullington has been interested in chronic fatigue syndrome (ME/CFS) for a long time. Acquiring funding, though, has been challenging, and indeed, studying the disease is difficult, as patient experiences and symptoms can vary greatly. Additionally, many individuals with ME/CFS take several medications that can confound results and complicate data analyses.
One goal of the study is to find a signature of sleep disturbance-associated fatigue associated with non-refreshing sleep in people with ME/CFS. Fatigue, of course, can be produced in several ways, but this study is unusual in its attempt to determine how poor sleep specifically impacts fatigue in these diseases. Given my correlation between sleep and readiness scores, I’ll be very interested to see how this study turns out.
The Cortisol Question: Is it Really Low?
Previous studies have found that low salivary morning cortisol levels in ME/CFS could contribute to symptoms of fatigue, weakness, salt cravings, and low blood pressure, as well as immune dysregulation. This immune dysregulation found could also lead to the increased inflammation noted by many ME/CFS and long-COVID patients.
A potential confounding variable exists, however. The delayed circadian rhythms some ME/CFS patients experience could lead to cortisol peaks that occur later in the day than usual. This is caused by insomnia-induced hypersomnia (excessive daytime sleeping) characterized by late daytime awakenings.
These altered sleep patterns could result in artificially low morning cortisol levels. Since Dr. Mullington’s study will explore diurnal rhythms and measure cortisol levels throughout the day and night, she’ll be able to provide clarity on a key factor in ME/CFS.
Assessing Melatonin
Dr. Mullington will be determining what effects alterations in the circadian rhythm are having on cortisol, melatonin and other sleep factors.
Melatonin is another hormone that has a 24-hour rhythm that will be assessed in this study. A literature search indicates sleep is only one of the many factors melatonin affects. A highly effective antioxidant, melatonin reduces oxidative stress in the mitochondria, has anti-inflammatory and immune-regulating properties, and may also have neuroprotective benefits, as melatonin levels are often decreased in many neurodegenerative disorders.
Despite its widespread use as a supplement to improve sleep, few studies have assessed melatonin levels in ME/CFS patients. One small study found that ME/CFS patients had higher night-time melatonin levels than normal. Another study found melatonin levels did not differ between ME/CFS patients and controls.
Clinical trials have had mixed results as well. One study suggested melatonin-zinc supplements may help reduce fatigue, while others found melatonin supplements were ineffective in regulating circadian rhythms or reducing symptoms. One small study found that melatonin helped reduce symptoms of fatigue in a specific subset of ME/CFS patients: people who had later sleep times and a later onset of melatonin production.
Another interesting study that compared melatonin supplements with aglomelatine, an antidepressant that can activate melatonin receptors, found that agomelatine reduced fatigue, while melatonin had no impact. That suggested that the issue with melatonin in ME/CFS may lie not in melatonin production but in how melatonin receptors respond to the hormone.
Dr. Mullington’s assessment of melatonin level changes over 24 hours will help tell us what’s going on with this important factor in ME/CFS.
Daytime Sleepiness and Orexin-A
Dr. Mullington – who, as was noted earlier, wrote a book chapter about the role orexin plays in sleep – will be the first to measure a neuropeptide called orexin-A in ME/CFS patients’ cerebrospinal fluid samples.
Orexin neurons project across the central nervous system. (Image from “The physiological role of orexin/hypocretin neurons in the regulation of sleep/wakefulness and neuroendocrine functions” by Ayumu Inutsuka, Akihiro Yamanaka. CC 3.0 Wikimedia Commons)
Orexin A is no slouch of a neuropeptide. Orexin-containing neurons project from the hypothalamus across many parts of the brain. These regions communicate with neurons involved in producing three factors – histamine, dopamine, and norepinephrine – that are important in sleep and maybe major factors in ME/CFS overall. If orexin is “off”, then much trouble could result.
Orexin typically follows a circadian rhythm, peaking during wakefulness and declining during sleep. Some researchers have proposed that orexin modulates the transitions between sleep stages and may inhibit REM or dream sleep at night.
As orexin plays an important role in regulating wakefulness, its dysfunction is implicated in narcolepsy—a sleep disorder characterized by excessive daytime sleepiness and sudden sleep attacks. In patients with narcolepsy, dysregulated REM sleep at night may produce daytime wakefulness – leading to the sudden sleep attacks seen in the condition.
The connection to narcolepsy is interesting to note, as I spoke with a doctor who believes narcolepsy is far more common in ME/CFS than suspected. Before it became difficult to get, this doctor reported that he successfully treated his and his patients’ excessive daytime fatigue with Xyrem (sodium oxybate), a drug used to treat narcolepsy. While the precise mechanism is not fully understood, the drug is thought to help regulate the transitions between sleep stages. Sodium oxybate may also increase the size of orexin-containing neurons, suggesting a relationship between the drug’s function and orexin.
Besides the sleep/wake cycle, orexin is also involved in energy homeostasis and autonomic nervous system regulation. Additionally, because of orexin’s role in wakefulness and alertness, low orexin levels may be implicated in cognitive function. Some studies have found a relationship between decreased orexin levels and attention deficit hyperactivity disorder (ADHD) – a condition that may have a high comorbidity with ME/CFS. A small, double-blind crossover study found that suvorexant increased sleep time and reduced pain sensitivity in patients with fibromyalgia.
On the flip side, orexin is a common drug target for anti-insomnia medications. Because several FDA-approved drugs (suvorexant (Belsomra), lemborexant (Dayvigo), and daridorexant (Quviviq)) reduce orexin activity to promote sleep, this study could point to new opportunities for sleep drugs.
Poor Sleep – a Metabolic Risk Factor for ME/CFS?
Could poor sleep be impairing glucose metabolism in ME/CFS?
Dr. Mullington noted that sleep deprivation leads to slowed glucose metabolism – a potentially significant issue for people with these diseases. Given our low activity levels and poor sleep, people with ME/CFS may be at an increased risk for metabolic disorders like diabetes and metabolic syndrome.
Factors like glucose metabolism have rarely been assessed and certainly not during sleep. A 2003 study found decreased cerebral glucose metabolism in about half of the ME/CFS patients. A 2010 CDC study, which never got the attention it deserved, found that people with ME/CFS were twice as likely to have metabolic syndrome – and that having metabolic syndrome was associated with worsened fatigue.
Additionally, studies indicate that quality of sleep is a risk factor for developing diabetes. Insufficient sleep duration and a decreased amount of time spent in deep sleep – two potential problems in ME/CFS – that are being assessed in this study are often associated with diabetes. The brain patterns Dr. Mullington is looking at during deep sleep may be linked to developing insulin resistance as well.
- A blog on metabolic disease risk in ME/CFS/FM and long COVID is coming up
EEG: the Spindle – Learning Connection
Lastly, Dr. Mullington will be using an EEG to look for changes in the spindle formation and other factors during sleep. During NREM sleep, spindle activity helps limit the external sensory input the brain receives to encourage restful, uninterrupted sleep. Sleep spindles also play a key role in moving the short-term memories gathered during the day into long-term storage where they facilitate learning. If it seems like you have to relearn things again and again, poor spindle activity during sleep could be why.
]In individuals with ME/CFS, spindle activity (and learning) may be disrupted and result in poor sleep quality. Additionally, understanding brainwave patterns using EEG may provide more insights into the metabolic issues mentioned above.
Conclusion
It’s amazing how little attention a core symptom like unrefreshing sleep has received in ME/CFS. Besides providing more data on circadian rhythm changes, melatonin, EEG, and basic sleep parameters, this small but thorough Open Medicine Foundation-funded study will assess cerebral spinal fluid orexin-b, neuroinflammatory biomarkers, and sleep spindle activity.
The Open Medicine Foundation reported that early results suggest that increased sleep fragmentation – which has been associated with daytime fatigue – and sleep spindle deficiency have been found. The array of factors this study is looking at could tell inform us about symptoms like fatigue, arousal, attention, daytime sleepiness and problems learning.
Dr. Mullington’s Beth Israel Deaconess Medical Center ME/CFS study is currently enrolling and anticipates finishing enrolment in the summer of 2025, with results to be available by the end of the year.
Health Rising Donation Drive Update
Sleep is one of the core issues in ME/CFS – that’s why we cover it whenever we can.
Thanks to the over 200 people who have supported Health Rising in our year-end donation drive :).
Although sleep is one of the core criteria for ME/CFS and is almost universally poor, it hasn’t received nearly the study it deserves.
That’s why when a ME/CFS sleep study by the Open Medicine Foundation showed up we jumped on it.
Health Rising has produced many blogs on sleep and another one is coming up. If that supports you please support us.
I’ve been a on a quest to figure out my unrefreshing sleep for 12 years. I’ve had 5 different sleep studies with 4 different sleep doctors, and they’ve all been “normal”, though some indicated a high spontaneous arousal index (lots of arousals or awakenings not related to respiratory events), which all but one doctor dismissed as just a bad night of sleep. I’ve been evaluated for sleep apnea, upper airway resistance, narcolepsy, and idiopathic hypersomnia and ruled those out, though I was pretty close to meeting the criteria for idiopathic hypersomnia. Interestingly, my mother and a brother were recently diagnosed with narcolepsy. I tried a CPAP anyway – that didn’t help. I’ve tried different meds for sleep (trazadone, Lunesta, Quviviq, melatonin) and most of them have not helped / made things worse. Melatonin helps a little. I really hope Dr. Mullington can shed some light on this issue. Dr. Mitch Miglis at Stanford has looked into unfrefreshing sleep in POTS and hasn’t figured it out, though he has some theories: microarousals not picked up by sleep tests, and increased sympathetic tone during the night.
“some indicated a high spontaneous arousal index (lots of arousals or awakenings not related to respiratory events),” – really interesting to when the deep brain work looks like.
As to sympathetic tone – absolutely. An Australian group did a series of sleep studies and the one thing that stood out was increased sympathetic nervous system activity. It sure rings true = how can you get a good night’s sleep when your system is activated.
I’ve been through a bunch of sleep meds as well. Nothing has really helped. Onto Lunesta!
Have you tried Gabapentin or Chlonazepam? I have both of these beside my bed and have found both really helpful. I have used the Chlonazepam at very low dose for years – 1/4 tab, now increased to 1/2 tab maybe 2-3 nights pw. Gabapentin was new to me 12 months ago and I found it gave me a sense of much deeper/calmer sleep. Like all drugs – I try to scale them back to a minimum and now using 200mg at night a few nights pw. Nothing is going to bust through if I’m super-wired but generally managing to avoid that these days – so I generally go to sleep quite easily but will then be stressed/wired at 3am or 4am for an hour or two – which is when I now take the drugs! They help me 🙂
I haven’t – thanks for the ideas. I’m in the same boat – usually go to sleep fine and wake up early in the morning. I know someone for whom Klonopin has helped 🙂
Martin, I take .5 clonazepam and 100 mg. of gabapentin every night. I tried to cut back on both but found that I felt much worse. Clonazepam was Dr. Cheney’s favorite treatment because it settles the cytokines in the brain. I have had at as high as a 95 sleep score on my Galaxy Sports watch and most nights in the 80’s which is good. Taking Daylyte hydration drops in the water I drink at night has also improved sleep a lot too. I used to drink Gatorade at night and I think the sugar was a problem.
Just sleeping well, however, is not a cure for all the symptoms of ME/CFS and Long Covid.
The emphasis on sleep and PEM as the singular most important symptoms of ME/CFS puzzles and irritates me. There is so, so much more to this illness.
I am now using Gabapentin 200 mg before going to sleep which is helping with the weird head and body sensations I get when initially lying down to sleep (from reading in bed). I also take dose of liquid L-theanine and a gummy of THC combined with CBN, and Hyland’s Calms Forte as needed.
Lunesta is working pretty well for me at 3mg. It’s supposed to help reduce arousals. I started it maybe 6 months ago. I’ve trialed 36 medications. Good luck with it.
I have an EEG sleep headband called the Muse-S. It’s probably the closest thing in a wearable that you’ll get to an in-lab sleep study with respect to EEG brain activity. The only issue is that it offers limited data. It gives you a sleep score at the end of the night based on your quality of sleep. And if you don’t mind sleeping with a headband around your head, it might be worth a purchase. I’ve used it a bunch of times but stopped using it because I know my sleep is crap. It was just to give me an idea and to also use it when trying a new medication.
The particularly interesting thing to me is that my NP had me start taking magnesium glycinate to help with high nighttime activation (high HR & high fragmentation), insomnia, & low deep sleep.
At the normal dose most of my metrics were significantly better, but my insomnia was significantly worse – I used to feel as if my normal circadian rhythm were 26 hours long, and on MgG I felt as though my natural cycle were restored…
However, at a low dose none of my metrics were better but even with a high OHR, low deep sleep, many micro-wakings and a moderately long-ish time to sleep onset ….I feel more refreshed. So who really knows what on earth might be the problem??
I am very curious to read the study and see what Dr Mulligan says.
Since you’ve tried a lot of other things, here are a couple other suggestions to research. Cortisol effects sleep and wake among a lot of other things. You can have an ND order a 24 hour, saliva cortisol test fairly inexpensively, It will show you whether your cortisol rises and falls in a normal range. This is the company I use and info: https://www.diagnostechs.com/2024/08/02/the-cortisol-awakening-response-test/ If it doesn’t there is a supplement, Cytozyme A/D, that can help get it back in sync if it’s low. Worked for me, my cortisol was really low in the am and it’s still borderline high at midnight but I feel a lot better. The other think to look at is histamine. Even if you don’t think you have a problem it could be a contributing factor. There is what’s known as a “histamine dump” between 2 and 4 am. Wide awake and ready to go. The only reason I figured out it was my problem is because I have MCAS and too much histamine causes me to “flush”. It used to be at 3:15 am preciously. Wake up hot and depending on how strong it is depends on whether I go back to sleep or not. Here’s an article: https://www.geneticlifehacks.com/histamine-early-morning-insomnia/ Both of these correspond to the info in the article above. I hope she can connect these to ME/CFS.
Did the Citozyme help with the 3am histamine dump?
No unfortunately. That seems to be related to the amount of histamine in my system. The issue seems to have resolved now that I’m taking “enough” DAO. (250-500,000 HDU per meal NaturDAO). If you know the “cup overflowing” scenario, the body is making a certain amount of histamine and as long as you don’t add too much to it you are OK. If you eat too many high histamine foods or histamine releasing foods the cup overflows and you get the symptoms. Anti-histamines help but I’ve found that as long as I don’t eat anything that is too high in either of those categories at dinner (and if I do I take extra DAO) it won’t trigger a flush at the 3am dump. I also suspect stress is a contributing factor, be it physical, mental, or emotional. It’s taken me over 2 years to figure this out and get my system calmed down but it’s working! Whatever triggered this to start with seems to have been forgotten and I’m not over reacting to environmental stressors like heat/ cold/ drafts and things like vaccines anymore. I just got a TDAP vaxx and had NO side effects at all. There is hope, just keep working at it! Blessings.
May I ask, how were you able to discover the histamine dump? Was it based on symptoms?
Here’s more info. 🙂 https://www.geneticlifehacks.com/histamine-early-morning-insomnia/
Dr Miglis is my Stanford neuro. Dr Jaradeh referred me to him years ago after a “not normal but not myasthenia gravis” single fiber EMG test. I have a long complicated medical history like many of us here, including ME/CFS, fibromyalgia, complex sleep apnea, Ehlers-Danlos, Hashimoto’s, and vertebrobasilar dolichoectasia (VBD). The last one is the most problematic, given my mom’s family history of nocturnal fatal brain hemorrhage.
Treating my sleep apnea with CPAP has been extremely helpful with regard to daytime fatigue and hypertension control. I believe the sleep apnea connection gets overlooked way too often in our cohort. And FWIW, I produce very little melatonin, so I take 10mg at night along with other supplements like 5-HTP and phosphatidylserine. I can’t sleep with the CPAP without them, and I can’t stay asleep without the CPAP. I’m pretty much a hot mess, trying to keep my BP and daytime fatigue reduced as much as possible.
The link opened the study description but there was nowhere to sign up for the study on that page. Is it recruiting yet? If so, do you know where to sign up?
It is recruiting and I could not find a link either. Maybe try Janet directly – https://sleep.hms.harvard.edu/faculty-staff/janet-mullington – her webpage has an email address. The sooner we get the study filled the better :). Good luck!
I would like to sign up for the study but I cannot find where to. The link I selected above went the the page about the study, but no recruitment info that I saw. If you know a link to the recruitment page, please post. Thank you. I have a long history of trying to treat sleep apnea unsuccessfully. I was told this was the cause of my fatigue despite my numerous other symptoms. I finally got the Inspire implant and it did not make much difference in my ME/CFS fatigue. It did make a difference in my need to sleep as much. I am also on Modafinil because my fatigue continues unabated… the Modafinil modestly helps but I’m grateful that it does anything at all. I think the new study could be very revealing.
I looked for a link and I was not been able to find it either. You might try Janet’s webpage – https://sleep.hms.harvard.edu/faculty-staff/janet-mullington – there’s an email address on it. It would be good to get you inthe study..I, too, find Modafinil helps by the way altho I have to be careful with sleep.
Thank you
Robin how much modafinil do you take and do you take daily? My doc prescribed 100mg recently but it does absolutely nothing, nor does 150 seem to on its own. If I combine with some caffeine though that usually helps. I don’t know whether to take daily though, or keep for when I really need energy. Interesting re the inspire.
I take 100 mg twice a day. I also drink coffee throughout the day. My sleep apnea index went from 14 to 51 eventually . It is a now a 4 with the Inspire.
Thanks Robin, glad you got that number from severe to normal – I’m hearing more and more about other health issues caused by apnea. It would be interesting to know what percentage of those with CFS treated for sleep apnea have been significantly helped with daytime fatigue. My guess is it’s low. Wonder too if modafinil and caffeine work better together than vs more modafinil or more caffeine. Glad it’s helped you at least somewhat. We keep trying.
Yes, I suspect the numbers are low too. It doesn’t significantly help me CFS fatigue, but I don’t take long naps in the day anymore and I am able to get up earlier if I need to, whereas before, I wouldn’t be able to do that.
Hi Robin- wow, lots in common! I was having fatigue issues so went for a sleep test & they found severe sleep apnea. No luck with other treatments so I was in the FDA clinical trial for the Inspire device, which reduced my sleep apnea but not my fatigue issues.
I didn’t develop full blown ME until I was having chemotherapy for breast cancer about 3 years later. It put me in a wheelchair and they stopped the chemo but went on with radiation.
Now I am so severe no one wants to operate on me to replace the dead battery in my implanted Inspire device.
So now I have untreated sleep apnea on top of severe ME sleep (and other) issues.
I have to be careful that anything I take to help me sleep doesn’t aggravate the apnea and leave me with low oxygen. So much fun!
I had breast cancer also in 2018. It was a type not responsive to chemotherapy, so I was spared that, but the radiation put me down for 2 months. I just got up enough to eat and watch a little tv until I was too tired and had to go back to sleep. However, my cancer-related fatigue did lift eventually, and I returned to be original CFS energy level and have been there ever since. I’m sorry you are experiencing such severe problems with everything. I hope you find some help soon 💕
A sleep study said I had 14 episodes/minute which is borderline mild/moderate but 02 levels dropped significantly 1/3of the night. (I was so surprised I had sleep apnea – get checked even if you think you sleep well.). Could not handle the c-pap so went to dentist for a mouth deal – it was so big was hurting my TMJ, which I told him I had. Got in contact with a very curious dentist (he did the Pikes Peak ascent with mouth tape on) who unfortunately had moved to the mountains, but he told me he did many studies on his patients and by getting them to sleep on side with mouth tape (now made with slits in case need to breathe)his patients did better than with the guard. I did this for a home study for the dentist who was very eager to sell me the guard, and it was “lost.” Said they don’t use tape. I haven’t been back due to other life events, but have been sleeping on side using tape. When I had the sleep test in hospital I was sleeping on back with mouth open. If you have a sleep study, make sure you see someone who really goes over the results with you, what it’s showing during your sleep positions etc – this dentist did not. Are these oura rings or other sleep apps as good as the home sleep studies?
Interesting, I’ve heard the tape can help and there apparently can be anatomical obstructions that get in the way of breathing properly for some people.
The Oura ring is not as good as a sleep study and sleep scores between it, the Garmin watch and the Fitbit don’t always align but for me, I really like the ring. 🙂
Thanks Cort I’m going to look into that ring. The tape is controversial but now with the slitted tape or there is one that goes around the mouth, I don’t see how anyone could object to it, other than dentists making big bucks on mouth devices. 🙂 Yes not only anatomical obstructions but I have some central apnea too meaning, from my understanding, the brain is not telling the body to breathe. I wonder if this is more common with those with CFS.
Hi Birdie, so sorry what you’ve been through. I take 25mg of trazadone to sleep and have had two different opinions re taking it for sleep studies – last doc said it’s ok to and won’t affect the study. Have you tried trazadone? Sometimes just 12mg works for me.
Thank you for this very valuable contribution.
Can you please tell me which oura ring you have?
I guess no need to buy the latest modelbest wishes to all from Canada.
Angelika
I have the 3rd generation – the one before the latest one. It works fine. If I was starting out, though, I would get the latest one! I really enjoy my ring 🙂
Love my ring too Cort. Have used the original for four years and just ordered the 4th generation.
My Deep sleep and REM sleep are always minimal, despite lots of “light” sleep.
There you go! REM – learning, memory. Deep sleep – toxin removal, immune system renewal, muscle growth, rest and recovery for the brain…
My problem is more with sleep duration and fragmentation I think. It’s hilarious that they say we should get 7-9 hours of sleep a night. I literally cannot remember the last time I got 7 hours of sleep. 4+ hours – more common than I would like, 5+ hours – quite a bit, and every now and then 6 hours.
The med mentioned here, Dayvigo, is the best sleep med I’ve found, and I’ve tested tons of Rx and OTC sleep meds
It would be unaffordable though without the manufacturer coupons
I crush up the 5mg tablets with mortar and pestle so i can take what the milligram scale shows as just over half the tablets weight. This is enough to get me to sleep, significant because the more dayvigo I take the greater the risk of feeling increased levels of tiredness the next day which makes everything harder. Furthermore taking a full tablet doesn’t seem to make me sleep longer, it just makes immediate sleepyness stronger which is only significant if I’m really revved up
I have had very poor sleep for years despite everything I’ve tried, my usual wake time is 4 am no matter when I go to bed. Very tedious.
Recently though I’m doing better. I’ve been using LDN for several years. Brilliant at first for increasing stamina but a virus affected its effectiveness. When I started LDN I read about bad dreams as a side effect so I took it in the morning or early afternoon. Recently I started taking it at bedtime & sleep is better, I’ve started being able to go back to sleep if I wake, something I’d completely lost the ability to do.
I’m also tying out Lavander oil capsules, they might be helping too.
I have a Fitbit and a Garmin watch and they tell me slightly different things. The Fitbit seems more accurate at recording the length of time asleep and provides a more detailed graph of different sleep stages. The Garmin tells me what my stress/rest levels are while asleep. During late summer and early fall I felt more energetic and the Garmin recorded more rest than stress during the night. Now, I am not feeling so well and sure enough I am getting hardly any “rest” at night even thoughI am getting 7-8 hours of sleep. I think what happens when we are asleep is more complicated than we know.
I use Gabapentin and Zopiclone to help me sleep. I have been using those drugs for so long that I am sure that I am addicted and coming off them would be very difficult. I also use tiny amounts of Melatonin to get to sleep, usually around 1 mg. The effect is amazing, within 20 minutes or less I can’t stay awake. Of course the effect is temporary, I could not stay asleep without the other drugs.
I had a sleep study several years ago, it showed that I had severe “positional apnea”: sleeping on my back is very bad. I already knew this and for decades I have tried to avoid this by sleeping on my stomach. They wanted me to wear something that would prevent me from rolling onto my back but all that did was wake me up.
Anne and Everyone, I can’t recommended the Samsung Galaxy 5 watch enough. It does great sleep stats, but it actually saved my life after Covid. You can run an ECG with this watch. I was in a mall for a very short time and became very tired so I decided to try the ECG which showed Afib and said I should see my doctor. Since it was a new watch, I thought it might just be a glitch. When it happened again, I went to a stand alone ER nearby. My heart rate was really irregular and blood pressure very high. They wanted me to be admitted to the hospital. I said no, but found a wonderful cardiologist to monitor what was going on. It turns out that heart problems and even strokes are more frequent in the year after even a mild case of Covid. My heart symptoms and high blood pressure are much better now, but I have to monitor it. Once when I was overwrought about something at the office, my watch actually sounded and alarm and called 911. Recent articles have found that one in four people who had the Omicron variety of Covid, now have Long Covid so be vigilant if you had this which was the main variety around August 2022 when I got it.
This just came in from another blog – a stimulant helps with sleep 🙂
Wow. That’s very interesting!
Finally!!
We’ve been talking about this forever in a Facebook group, where we look at sleep disorders in conjunction with POTS, ME/CFS, and other similar disorders. The number of patients with both me/cfs/pots diagnoses AND a narcolepsy diagnosis is significant. So glad this is finally getting the attention it deserves!
How about that!
Finally. a professional is looking at the science of what is going on behind all the disrupted sleep. Hopefully, it will lead to some other and perhaps better options for patients.
I use 200mg Modafinil plus coffee during the day and it helps. I’m a slug without it. As for sleep, most of the time I fall asleep most evenings on the couch while watching TV. If I wake and crawling into bed, then I have trouble falling back to sleep!
If I really can’t sleep, time for either a cannabis gummy or a swig of Lactucarium extract. After doing extensive research on herbals for sleep, I ran across a company called Wildlettuce which grows their own Lactuca Virosa (aka ‘opium lettuce’). No, there isn’t any opium in this extract! It’s from an old herbarium for chemists of the turn of the century. As for safety, being uncommon, and unpatentable, there are no studies on it. I take a small amount only when necessary and it really, really helps me fall asleep and stay asleep.
I switched PCP’s at Stanford and my new one wants me to take a sleep study yet again! I think it will be the same result with the same prescription–hypopneas = CPAP. I am a VERY restless sleeper and the very thought of something over my face is distasteful. I think my problem is drenching night sweats (I have to change my clothes) and joint pain (thank you Ehlers-Danlos), and a stuffy nose.
Between the two studies I also found out I have a collapsed nasal valve and a deviated septum (again thank you EDS)–which might be contributing to my hypopneas. When a procedure to burn out my turbinates was suggested, after research I decided against it because it can lead to ’empty nose syndrome.’ There is no way to figure out who might develop this, but it can cause enormous problems and even a small turbinate reduction can cause it.
I highly recommend the book ‘Breathe’ for learning about all things related to breathing, including dental health, skull shape, sleep and more.
Empty nose syndrome – wow! Thanks for the herbal recommendation and the book. I, too, have found gummies for sleep very relaxing and often quite helpful.
Hi. I also have collapsed nasal valves and enlarged turbinates. My ENT wants to do the Vivaer procedure. He never mentioned the possibilty of “empty nose.” Now I am afraid to do this procedure!
I emailed with Janet and considered being a participant in this study, but alas, I’m too unwell. My sleep doctor at Beth Israel is also involved in the study.
My in-lab sleep test indicated highly fragmented sleep. You can sleep through the whole night and have these microarousals that wake your brain up very briefly though you’re not aware. It’s what causes the sleep to be fragmented.
I think you did an article on sleep in 2013 that talked about microarousals in sleep.
Yes, I did. I’m surprised we haven’t seen more on microarousals but I think the technology is improving and hopefully we will get more – I wouldn’t be surprised if they show up in this study.
From that blog
“Micro-arousals Getting You Down? The researchers believe the higher fractal scaling indices they found in the sleepier ME/CFS patients suggest ‘micro-arousals’ undetected in traditional sleep studies may be hampering sleep in non-REM periods. With regards to treatment they mentioned Clonidine, an SNS inhibitor and PNS booster (and glutamate inhibitor) as a possibility. Other options are available and we’ll be covering those in an upcoming post.
The sympathetic nervous system could be key as I saw that low heart rate variability can be associated with microarousals.
One study suggested stress or pain wasn’t keeping ME/CFS patients from getting a good nights sleep; it was simply sympathetic nervous system activation
In one of the earlier HRV sleep studies, Vollmer-Conna et al. stated they believed the heart rate profile found in ME/CFS was indicative of a ‘hyper-vigilant, inflexible physiological state’ probably caused by poor vagal nerve functioning. (The vagus nerve controls parasympathetic nervous system (‘rest and digest’ functioning.) Interestingly, neither stress nor pain – two commonly ascribed reasons for poor sleep – appeared to have any effect on sleep quality in their study. Instead, heart rate variability values indicating increased activation of the sympathetic nervous system had occurred did.
Yes, good info, Cort. Thanks for sharing.
According to my Oura ring, my HRV during sleep is pretty terrible.
Thank god , finally . I think propranolol is so under used in this disease . It’s changed my sleep entirely and not entirely sure why but found ingot in the ptsd literature and thought I sounded like that . I also have hEDS if that makes any difference . Biggest help ever . I dream now , I sleep now and I wake at a reasonable time . Don’t get me wrong I can be catapulted out of a good pattern vv easily ( too much stimulus in the evening ) but so far it’s been great for me
Ya, I don’t think of propanalol as a sleep med – very good to hear this..
Jill, did you not dream before? I don’t dream and haven’t done so for decades. My job was chronic sleep deprivation with a professional title thrown in to make it sound convincing. But, I’ve had a normal sleep window available for 5 years and haven’t returned to dreaming. And propranolol restored your dreaming and unbroken sleep?
My recent discoveries for helping with sleep are Magnesium, Taurine and Cetirizine. No dreaming as yet but steadier sleep during the most difficult time ever encountered.
Hi, I think I remember a doctor (Dr Hauser?) stating that in hEDS patients with cranio-cervical instability propranolol helps mitigating during the sleep the sudden rises of blood pressure that trigger micro-arousals. I think I saw this on YouTube in a conference organised by an American EDS charity.
Thank you . I saw it on YouTube but I don’t think it was Hauser . I think it was Dr Alan Polonik ? There was written info as well
Why does CCI/hEDS cause sudden rises in blood pressure during sleep? I think this may be my problem.
Cort, is the information you get from Oura actionable?
Hi Cort, I a sleep specialist tell me recently the accuracy of readings by the Oura ring and Fitbit accuracy do work quite well for people who don’t have insomnia but don’t work for people who have severe chronic insomnia…ie all of us. Are you aware of this as I was going to buy one but told not to waste my money. Are there any reports suggesting the OURA ring does actually record readings with a reasonable degree of accuracy for ME/CFS/FM people?
🙂 I wonder why specifically he/she believes as that’s one thing the Oura ring should be able to do. I asked ChatGTP about the rings abilty to track insomnia.
The study reported
https://ouraring.com/blog/2024-sensors-oura-ring-validation-study/?utm_source=chatgpt.com
The person who runs the Sleep Science Academy which treats people “with really bad chronic insomnia that’s destroying their lives, their health, their businesses, and their relationships.” said the ring “gives us tangible data to make educated decisions on, and also really helps us implement some of the tools and techniques we use in certain phases”
On the other hand, your doctor must have some reason for making that statement. I wonder what it is? (???)
Yes I am aware about the sleep-tracking accuracy of the Oura Ring Gen 3 against polysomnography and fact it is better than Apple watch or fitbit. It’s top of my list.
But when I asked the specialist to confirm my purchase of the Oura ring he said the accuracy of those tools work well with normal people but are not as accurate or reliable when it comes to measuring sleep for those of us with severe insomnia. He also said after my consult that he can’t help me with my sleep problems 🙁
But if the Sleep Science Academy are using the ring for people like me with really really bad insomnia AND it’s giving them “tangible data to make educated decisions on” then that is good news so thanks for the info Cort.
🙂
Hi Cort, i write it here again so you can see it. I donated allthough not getting the blog. i am here because of the link from you. it would be ofcourse be a pain in the ass if my donation was for nothing and i still do not get the blogs. please repair as soon as possible because i have long not getting the blog allready
Im really surprised……a sleep study and no one has mentioned SSRIs like Nortriptylene
This was the one thing that got me from being 24/7 bedridden to now getting in at least 13-15000 steps a day
The study i read like 15 20 yrs ago basiccly said we CFS sufferers can sleep at night,but rarely hit our REM states ,and so dont produce the Serotonin needed for the next days energy output
An SSRI taken 5 Hours BEFORE going to bed ,would help
From personal experience ,i know ,if i dont take an extra half tablet on the days ive overworked ill be curled up in the dark for 2-3 days till back to my usual sub normal
Ive recently added 10 mg Melatin when i go to bed and i take a Magnesium suppliment in the morning ,which helps with the odd restless leg at night in bed issues
Sadly, I believe that all the studies are so inconclusive is that not all ME/CFS is equal. Until we can differentiate classifications in this catch-all, research will never make progress.
Thats my most pressing concern!
Hi Cort, i donated allthough not getting the blog. i am here because of the link from you. it would be ofcourse be a pain in the ass if my donation was for nothing and i still do not get the blogs. please repair as soon as possible because i have long not getting the blog.
After 28 years of not being able to sleep before 4 am – often not before dawn, no matter how many prescriptions, supplements, good sleep hygiene practices I tried or combined, I was prescribed Progesterone for something else. It took a year or more to totally reset my sleep schedule, but I am now falling asleep about 10:30pm every night!
The progesterone was prescribed to balance BioTe hormone pellet implants. After I stopped getting the implants, I continued taking the progesterone because the only improvement I’d seen was better sleep.
I wish someone would do a study on why progesterone was the thing that helped so much. My doctor, who knows nothing about ME/CFS, doesn’t want to take over prescribing it for me, and the kind of doctors who normally do prescribe it don’t do so for sleep benefits.
I do still take Delta 8 gummies and Olly Sleep gummies, but they aren’t enough help on their own – just left over from my previous attempts at trying to actually sleep at night.
Interesting! Thanks for sharing that. I think the role sex hormones play in these diseases is vastly understudied. I know someone who’s 10/10 migraine disappeared when she began taking estrogen…
I’m wondering if there have been any studies on the use of BiPAP for sleep. And whether the assistance it gives is beneficial to deeper, more restful sleep. I’ve used it for a year now and feel it provides a bit more restorative sleep than CPAP ever did.