Geoff’s Translation is Common
There is no Gist for this blog
Blog production declines – a red flag for me.
Someone recently asked me, “Is something up? Are you OK?” Apparently, they noticed that my blog production is down. I don’t know if many people noticed my drop in productivity over time, but I did, and I wrote this blog to get it off my chest, explain what’s going on, and make it clear that it may continue for a time.
My blog production thus far this year has been down by about 25% compared to last year, and was down by 20% in the last six months of 2024.
That’s a big red flag for me. Blog production has always been my highest priority. I will throw virtually everything else under the bus – emails, keeping up with finances, cleaning, organizing, taxes, etc. – to keep up with the blogs.
Resilience Tested
How many things have regressed on the energy end became blatantly clear during Health Rising’s end-of-year donation drive. Health Rising’s very long donation drives provide a nice year-end assessment of my resilience. They are intense, not just because Health Rising gets a majority of its funding from them, but because they’re such an exceptionally demanding time. Writing blogs, recording 500 or so donations, and sending out thank-you notes is a real workout.
Exhaustion set in much earlier during the donation drive this year.
Four years ago, I got through them fine. Three years ago, I was able (barely) to keep up and I vowed not to go through that again. Two years ago, I made it about halfway through the drive before I gave up on recording the donations, etc., and spent the week after it collating the donations and thanking everyone. A year ago, I bowed out earlier and spent about two weeks afterwards gathering up the donations and thanking everyone.
This year, I pooped out after about 10 days, and three months later, I still haven’t thanked everyone – which also means that I haven’t thanked almost anyone who donated after the drive ended on Jan 17th as well. (Health Rising recently began using a CRM that cuts down on the time needed to do this.)
Even after cutting back so much on that, I’ve still done about 25% fewer blogs than usual. It’s time to face the music—I’m not the person I was a year ago.
A Slow Slide – and then a Faster One
My resilience has plummeted over the past nine months, but according to my Oura scores, I’ve been on a slow slide for about three years.
Early 2022—Heart Rate Variability Drop—In early 2022, I experienced a mysterious and dramatic drop in my heart rate variability scores. Over two months, my HRV scores dropped by 40% (@22-13), stayed there for two years, and then started to inch up. Interestingly, I don’t remember my symptoms getting worse. My Oura readiness scores also dipped for four months, rebounded, and then were back to normal.
I can think of three things that happened during that period: a shingles vaccine shot; a heavy concentration on fermented foods, that was accompanied by about a 10 lb weight loss.
Feb 2023 – Activity Goal Drop—About a year later, in Feb 2023, the activity goal Oura set for me each day started dropping. While I’d had my share of 250 and 350 active calorie burn days, as often as not, Oura gave me a nice, robust 500 active-calorie-burn activity goal, and every now and then I’d even bounce up to 600 or 650.
By Feb, 2023, though, Oura thought I was better off trying for 400. By August of next year, the 500s were essentially gone for good. By March of this year, I was, more often than not, not even making it to 400.
Sept 2025—Cardiovascular Age Drops—In May 2024, Oura started tracking something called “cardiovascular age,” which refers to pulse wave velocity (PWV) and arterial stiffness. I was happy to find that Oura thought my PWV indicated I was 2.5 years younger than I was, but then the drops came. A year and a half later, my cardiovascular age matched my real age, and by February, Oura thought I was 1.5 years older that I am.
2023 to Present – Sleep Scores Drop—If anything tells the tale of the last three years, it’s probably been my sleep. Three years ago, I averaged 6 hours and 15 minutes of sleep. It dropped 30 minutes in 2023 and 2024, and was down to 5 and 1/4 hours in 2025.
My sleep score—which had averaged a mediocre but bearable 70 in 2024—dropped until it bottomed out at a pretty miserable 61 in the first three months of 2025. I’m convinced that poor sleep has taken the greatest toll.
Doxepin, ramelteon, trazodone, gabapentin, eszopiclone, and Kava have been tried and failed. The only things that seem to help are CBD oil and high-THC gummies.
Flexion Points?
For most of my time with ME/CFS I’ve pretty much been the picture of resilience.
Of course, I’ve been looking back and trying to figure out what happened. I can see four factors that may have played a role. Most of them have overexertion in common, which is a bit surprising to me.
Overexertion has never been much of a problem for me with my “mild” ME/CFS. I’ve planted large gardens, worked at catering for several years in the 90s, and traveled cross-country several times. Sure, I often paid the price each time, but back to baseline I always went. I was a pretty darn resilient person with ME/CFS.
If I look back, though, there were four times when it appears I kept paying the price for quite a while.
Mid 1990s – The Survey—It was admittedly a stretch for me to do my Master’s thesis surveying native grasslands in the Santa Cruz Mountains in the mid-1990s. I was determined to do it, though, and pushed and pushed. At one point, I even felt like I had pushed through something and was able to hike more easily. In the end, I returned to my normal baseline, but towards the end of the project, I developed a roaring case of chemical sensitivities that continues today, albeit in reduced form. Was it caused by too much exertion? I don’t know.
The Plague—If any one thing started my recent decline, I would pick “the plague” (lol). My idea of dealing with the occasional cold was to get a little activity in. This time, that idea failed miserably, and I woke up the next day with a deep, aching feeling in my muscles that I had never experienced before.
It took months to get over that, but it popped again and again when I overexerted. It’s much rarer now, but it’s a no-nonsense sign that I must pull back when it comes.
Warning sign of slippage—Prior to the plague, I’d done a couple of cross-country trips. I knew they would be a challenge, but I didn’t fear for my health and looked at them more as an adventure and a chance to see the country than anything else. After “the plague”, though, that changed. I was very careful on the one long-distance trip I made in 2023 and decided not to do one in 2024.
The Big Slide: I Get Puppies, and My Activity Levels Skyrocket—In retrospect, things had been on a slow slide for several years, but I felt pretty much the same. I would have been hard-pressed to say that anything other than normal fluctuations were occurring.
Then came the puppies. Over about a year, I lost both River and Skye – and in May of last year, I got two puppies – Anni (Icelandic for River) and Cielo (Italian for Skye) :).
You might ask what I was thinking about getting two puppies at 64? (My partner asks me that frequently :)). Well, I wanted that bond that comes from growing up with puppies. Besides, it had worked well before (13 years before (lol)).
It wasn’t just puppies—it was these puppies. They were Catahoula hounds, a breed bred to hunt. While my last dogs (whom I thought were Catahoulas but clearly weren’t) stuck around camp, these guys roamed and roamed. Because I don’t like keeping them tied up when I’m camping, I spend a good bit of energy chasing them. When I wasn’t chasing them, I went on short hikes with them.
11,000 steps…What was I thinking?
Between the hikes and the chasing, my steps per day reached new heights. During one month in summer, I was shocked to see that I’d somehow averaged over 11,000 steps a day—a step count I’d never come close to approaching before. Over a four-month period last summer, I averaged about 10,000 steps a day—something else I’d never come close to doing since I got the Oura ring about five years ago.
Why didn’t I catch this and pull back? For one, I wasn’t having my usual post-exertional malaise symptoms (hot burning sensations in my muscles, lots of upper body pain, fatigue, irritability, difficulty concentrating, and every now and then a little dizziness. If I really overdid it, I’d get flue-like symptoms and immediately pull back.)
Instead, I was experiencing symptoms I’d never experienced in my 40+ years of ME/CFS, such as wooziness, dizziness, fatigue, disorientation, “floppy feet”, numbness and tingling in my ankles, plus lots of left side (neck, shoulder, and hip) pain. I attached none of it to my exertion.
I only began to realize what was going on when the activity score on my Oura tumbled despite all my activity, and my “Recovery Time” assessment slipped from “Optimal” to “Good” to “Fair” and then to the lowest level, “Pay Attention”. Alarmed at this new onset of symptoms, I became a patient of Dr. Ruhoy’s in Seattle.
Warning Sign – How much resilience I’d lost was vividly displayed when a tire shredded on the way to Flagstaff in the fall. Usually, changing a tire would be no problem, but this time, it was not. I staggered around, and I was quickly spent, and was lucky that a good Samaritan came by and helped out. The fact that I could not generate energy in a pinch really blew my mind. Even at my worst in the past, I’d been able to do that.
Stuck
Reducing my activity level helped, and the puppy problem has gotten better (dog trackers and more leash time have helped). While I am still doing too much activity, for various reasons, at times, I’ll be able to reduce it more coming up.
Unless I overdo it, my wooziness and disorientation are much, much less, and my left side pain is mostly gone. My sleep scores are still in the pits. My fatigue is still high, my resilience is reduced, and it takes me much longer to recover (elevated heart rate/symptoms) from stressful activities, and my activity goal continues to sink. Oura certainly doesn’t think I’m over this, and neither do I.
Warning Sign – Last month, the van got stuck in the desert, and I had to do some work to recover it. I got it out – and I was in better shape than during the Flagstaff fiasco – but again, my energy dissipated alarmingly fast. This is probably not surprising for many people with ME/CFS/FM, but for me, it was. In the past, I would have been in considerable pain, but would have been able to push through. This time, there was simply nothing left.
It’s a different world. Over the past 9 months, my symptoms have changed radically. The old me had to deal with much more pain – the new me just can’t function as well. I prefer the old me!
Worse Health – Less Worry (?)
Oddly, enough, in some ways I am less worried about my health than I have been in the past. I came across a letter I wrote to my sister in 2017 in which I spilled my guts and said I was worried about my ability to continue working. That was a revelation as 2017 seems kind of like a golden age right now (lol). The truth is that I was really concerned about my ability to keep going on, and I’ve always been worried that something was going to happen.
I’m actually less worried about that now because I have more confidence in my ability to take care of myself. One of the odd but revealing memories I have from 10 years or so ago is being too tired to brush my teeth at night. Given what a financial thorn in my side my teeth have been, I have to be really, really tired to get to the point where I don’t brush. At one time I got there frequently.
That doesn’t happen anymore. I’m never too tired to brush my teeth at night and always do so. It’s a little thing, but it’s revealing to me. It’s probably because I’m taking better care of myself.
So, while I’m dismayed that my productivity is down at precisely the time there is so much to write about, I’m not worried about collapsing.
New Health Efforts
Some things have turned around. My heart rate variability ticked up in 2024 and now averages 17, and my ‘cardiovascular age” has improved and now suggests I’m a year younger than my age.
I started and have been intermittently doing Dan Neuffer’s ANS REWIRE program. One of the things I agreed to was to take more breaks. While I’ve been doing the program fitfully, it is helping at times, and I believe it will help more over time. (I’m also hoping that at some point, my long-term meditation practice (@ 1 hour a day for the last 3 years) is going to finally kick in at some point and I’m going to have a nice stretch of restful meditations (lol)).
As I noted, I also started seeing Dr. Ruhoy. With her new fee increases, my time with her will be brief, but she will be able to advise me on the results of the 26 vials of blood and the MRI and MRV imaging results that were done (thank god for Medicare) – and I will pass them on to my other doctor. The vast majority of my blood tests fell in the normal range, but there were a couple of standouts, including a lactic acid level that was so low that it almost defied belief (lab error?).
So, to wrap up, my blog production will probably continue at a slower pace than usual.
Dear Cort,
First I wish you better times ahead. You deserve those.
Second, it sounds a lot like your body *chooses* to produce less adrenaline / epinephrine that used to try and push you trough your lows and keep you going.
Signs that seem to point to that:
* You are more fatigued but less worried now. Adrenaline produces plenty of emergency energy, pushing you out of crashes. Very frequent high adrenaline peaks however come with their own side effects, including increased vigilance / worrying. It could also have produced irritability you experienced in PEM before. By chance, would you not only worry less but have also a slower more relax thinking pattern now and “almost have to do effort to get angry” (compare to what it was before) too? That IMO could also be due to less peaks of adrenaline.
* You were too tired to brush your teeth before but no longer now, while you had much more energy then compared to now. That also points to you “living on adrenaline” back then. It pushes you through everything you consider most urgent to do, but leaves you very depleted a number of hours later when the adrenaline peak is consumed / depleted. So while you may have been able to replace tires during the day (on adrenaline), you couldn’t push yourself anymore to brush your teeth at night. Note: if you pushed your body on adrenaline during the day and would often be depleted from it during the night, your body would then have required more sleep due to more exertion during the day and be able to better do so due to lower then normal adrenaline (reverse hit towards reduced adrenaline production to let the body recover from the peak) at nights.
* Adrenaline peaks can lead to lactic acidocis. If your body *choose* “to cut you off this (possible) decades long living on adrenaline (for safety reasons for example)”, then you might be rather below average in it now. With it, lactic acid may well be consumed (by neurons, muscle cells, heart…) at a(n almost) higher pace then you produce it.
See paper with title “Effects of adrenaline on lactate, glucose, lipid and protein metabolism in the placebo controlled bilaterally perfused human leg” saying “Adrenaline directly increases lactate release and lipolysis and inhibits insulin-stimulated glucose uptake in the perfused human leg. Adrenaline has no direct effects on peripheral amino acid metabolism.”. As you are well aware of, glucose uptake is reduced in ME/CFS. Combined with even regular levels of adrenaline and more so on below normal levels that could likely lead to lower plasma lactic acid then seen in healthy people (for patients “unable” to “live on adrenaline”). IIRC there are papers on reduced lactic acid during rest in ME/CFS too.
While I do not think your brain retraining programs are at the cause of this, you may experience the switch from a “pro stimulant balance” to a “pro relaxation balance”. If I recall well you used to do well on things like caffeine. Just like adrenaline that is a stimulant. And with ME/CFS patients doing well on stimulants, brain relaxation and meditation often works poorly or even makes them more agitated. When you make the switch, IMO stimulants tend to more easily kick you into agitation and brain relaxation and meditation techniques tend to help more. Rather then seeing you following these programs as a cause of this switch, I would estimate that since your body “choose” to make the switch, these programs “finally” start to help you rather then work backwards.
Maybe follow the advice you write about yourself: listen to your body and pace yourself?
All the best to you,
dejurgen
DeJurgen! Good to hear from you :). Maybe it is less adrenaline or something like that. I vividly remember a doctor telling me 20 or so years ago, that when my immune system calms down as I get older I will feel better.
I have less of the “wiredness” and less of the “oomph” as well. Interesting. I would get jacked up at times while I was writing that I had to get up and walk around. My shoulders would rise up to my ears! Now I’m calmer – not calm – but calmer.
“It pushes you through everything you consider most urgent to do, but leaves you very depleted a number of hours later when the adrenaline peak is consumed / depleted” – this makes sense. I was definitely more active back then. I was younger too – but my twin brother is still very active. (Too bad I didn’t have an Oura ring).
I also had problems with spatial orientation while driving (vertigo going over bridge or merging (scary as heck), worsened chemical sensitivities.
Interestingly, back then I could get a nice boost from meditation – no more.
Thanks for the tip on the reduced lactic acid and how that might work. My lactic acid was so low (0.4; reg 4.8-25.7 normal) that it was either a mistake or I’ve found a test result that pops out. From what I’ve read by pyruvic acid should have been high – but it was low normal (0.3; 0.3-0.7).
While Labcorp found my overall acetylcarnitine profile normal there were some high or high normal results in there. It’ll be interesting to see what Dr. Ruhoy thinks.
I find caffeine very helpful – and I am very sensitive to it – it usually takes just a few sips to get me me going – but it does have its downsides. If I do it too much the deep aching muscles that I associate with “the plague” comes back When I’m really beat it doesn’t work.
I hope the meditation does kick in at some point. I’ve been kind of astonished that it hasn’t yet.
Thanks so much for your response. (I hope we see more of you! :))
“In the past, I would have been in considerable pain, but would have been able to push through. This time, there was simply nothing left.” That’s interesting – I used to have PEM in the form of pain attacks, and lost them along the way (glad to not be in pain, but also means losing kind of a safety alarm).
It could relate to what deJurgen describes as a turn towards a pro-relaxation state, and/or might possibly also be a depletion thing? Because I know the “simply nothing left” myself from when I push myself either with stimulants, or in particular pushing under adrenaline:
On most days, stimulants do not work anymore because there seems to be nothing for the stimulant left to mobilise. When I’ve built up some “reserves” again, stimulants like caffeine in cocoa will work again for a day or so.
Also, when pushing over energy limits under adrenaline (in particular if over a period of several days) there comes a point where the pushing itself becomes impossible, and there’s “simply nothing left”, and that point mostly means that a particularly deep crash is inevitable (the kind that tightens exertion limits). I’m undecided on whether it means that there are no energy activation and production reserves left to mobilise, or whether the ability to produce adrenaline itself is exhausted? My guess is both: that first adrenaline mobilises and depletes emergency energy resources beyond the usual energy production, then the capacity of the body to produce adrenaline /adrenal capacity/(whatever other processes involved in activation) itself becomes exhausted.
I have not tried whether temporary adrenal support like low dose hydrocortisone might help in that situation.
So if you experience a point of “simply nothing left”, it could possibly also mean there’s been depletion and you need to take time to build up some reserves again.
Have you tried nicotine patches yet? If not, maybe now could be a time to give them a go…? My experiences with them were positive. (Initially they activated and enhanced crash risk, but over time became calming helping with sleep, and they’re – besides trimipramine – the only thing that sometimes helps treat crashes.) Best wishes for you :-)!
Lost comment just before sending it, so a short redo.
One thing that is very often overlooked is that nor-adrenaline and adrenaline (often called nor-epinephrine and epinephrine in literature) also have very potent immune modulation (mainly lowering) properties.
So things like a more stable immune system due to better gut microbiome or just reducing immune strength with aging can decrease the need to use excessive levels of adrenaline / nor-adrenaline and / or other stress hormones in order to try and contain dangerous excess activation. With such reduced needs, boosting of physical and mental functionality on the side would decrease as well.
When you think on it, it makes sense that many stress hormones double as immune modulators: a strong activation of the immune system drains energy that cannot be used for fast nor lasting muscle or brain activity needed during emergencies.
Paper with title “Impact of norepinephrine on immunity and oxidative metabolism in sepsis …”
* “Norepinephrine has been shown to modulate immune cell responses leading to increased anti-inflammatory and blunting of pro-inflammatory effects. Furthermore, there is evidence to suggest that norepinephrine is involved in regulating oxidative metabolism in immune cells.”
* “Early investigations identified alterations in the level of sympathetic nerve activity by assessing circulating levels of NE and Epi in times of infection and shock. These studies identified consistently that endotoxin exposure led to increased levels of circulating NE, suggesting enhanced sympathetic nerve activity (8). Therefore, immune cell activation following peripheral infectious challenges likely increases the level of CNS mediated regulatory mechanisms (8).”
=> This indicates that high NE and Epi levels are often “ordered” in an attempt to control immune problems.
Paper with title “Adrenergic regulation of immune cell function and inflammation”
* “In the context of autoimmunity, studies have focused on the role of NE in the central nervous system (CNS) in mouse models of experimental autoimmune encephalomyelitis EAE [74]. Early studies found a direct correlation between elevated NE and reduction in severity of CNS inflammation [75]. Depletion of central adrenergic nerves lowered NE levels and significantly increased the severity of EAE as compared with controls.”
=> EAE, an experimental model for brain inflammation and MS (depending on exact details) is reduced by high levels of NE / Epi.
* “Depending upon the cell type, adrenergic signaling regulates a variety of functions in immune cells ranging from cellular migration to cytokine secretion. Furthermore, due to the diurnal oscillation of systemic norepinephrine levels, various immune functions follow a circadian rhythmic pattern.”
=> reading that the other way around: if the immune system risks to become unstable / dangerously overactivated the body may have few other options but to prioritize immune stabilization over a good night’s sleep (by increasing NE / Epi rather high during nights). Note that many patients have the worst nights during PEM / crashes.
https://pmc.ncbi.nlm.nih.gov/articles/PMC10481402/
=> Paper on things like neuroimmune modulation and the role of vagus nerve in it. Figure 1 has a very educational picture of those relationships in it.
Note: blood values of NE and even more Epi IMO very strongly only offer a small time point that fluctuates a lot under varying conditions.
Now I will go back fade and (try and) work on ideas and putting them on paper in the background. I can’t promisse if nor when results will be out.
Very interesting stress hormone/immune connection – thanks!. I really should do a poll and see how people do when they get older and if there are any patterns.
Cort, I don’t know where I’d be without discovering Health Rising years ago. Like others I’m always impressed by your well written educational blogs.
I’m sorry you are sliding backwards, I’m in the same boat the past two years.
I’ve only been reading the “gist” for months now. My brain feels like it’s liquefying.
The news is so depressing too re funding etc.
So take a step back, breathe and go forward with baby steps until your normal health returns. I’m grateful you let us know what is going on with your ME.
Thanks JR for the ideas. Thankfully, caffeine is still helping most of the time altho I need to be wary about using it too much. I do get to the depleted state where it’s like drinking water – which is really weird for me since I am usually so sensitive to it.
Interestingly, my healthy twin brother isn’t so sensitive to it. I guess that may be an ME/CFS thing for me.
I tried to the nicotine patch but couldn’t handle the chemicals used to bond it. Thanks for the mention, though, I need to try the gum 🙂
Yeah, my coffeine sensitivity developed during ME/CFS too. Oh, I’m sorry about the patch, maybe a different brand has different chemicals? The cheap China brand (Sefudun) worked best for me (though it still causes me some skin irritiation, it’s less than with other brands).
I am 76 and have had FM for close to 40 years. I was able to function as a teacher mostly through sheer determination and willpower before my retirement. FM hit me when I had been working for 17 years, and I wanted to be able to collect on a pension so I wouldn’t be destitute in my old age. Plus, I loved the work. As I have gotten older, my pain is less perhaps from a weaker immune system, but sleep is more difficult, and my gut issues are also worse. There is no one size fits all solution, but I think most of those that read your valuable articles are open to some type of informed trial and error. Thanks to you for all your endeavors to keep us informed. I hope you find a way to help yourself feel better so you can continue to enlighten the rest of us.
How things change with ME/CFS/FM and long COVID as we age is a fascinating topic. Looking back I think my key PEM symptom – burning muscle pain – has probably slowly been declining for awhile and now is mostly gone.
That suggests that we need to be wary about including longer duration with short duration patients – as one ME/CFS study suggested.
Glad you were able to make it through and collect that pension!
Dear Cort, we understand exactly how you feel. It’s happened or happening to all of us. After 37+ years, it’s still not easy or helpful to try to explain to anyone these feelings. The dizziness, the heart rate, the overworked sympathetic nervous system (fight or flight) is a BIG ONE, not sleeping well without clonazapam or whatever, just all the symptoms we all know so well. I do believe the political environment has pushed us hard. Feeling very defeated and like WTF? Is there a light at the end of this tunnel? Probably not in our life times if in the older group of boomers. I’m so glad I did have some real good times and the music was flawless. Memories are good. Many great minds have tried or still trying to find the key but it’s been so damn elusive. I wish I had great advice for all of us. I don’t. We have been thrilled to have you and your reports. My money still will go to you no matter how much or little you can produce. I love you and wish for all of us to get a laugh occasionally. I saw Dana Carrey on Bill Maher and I did laugh which was a joy but it’s damn hard to come by. Sincerely, Javen
I’m gutted to hear how your health has suffered of late, Cort. Like others here, I have long been astounded by number of blogs you produce, the depth of the material presented and the research you have done to prepare them.
Please know that we all encourage you to step back and look after yourself.
I echo the sentiment of others here who say you do not need to issue individual thanks for donations. One sentence on the website after the annual drive would suffice.
You have supported us all for years with your deep-dives into what’s happening in this field. Now it’s our turn to support you by turning you loose to look after yourself in whatever fashion that takes.
Here, here Susan Jasper! Agree. Well said👐🏼👏🏼👍🏼
Noble efforts you’ve made cort. Go easy.easier sayd than done I know
Yes same! Dear Cort, please know I for one am incredibly grateful to you, have always been amazed at how hard you worked for us, and would be happy to see you scale back as needed!
Thanks, Suzanne 🙂
Thanks, Susan for the idea.
I meant to put this in the blog but we’ve found a new system that pretty much takes care of the tabulating donations issue. That will help. I’ll see how things go!
I am definitely taking better care of myself 🙂
Lots of judgments and advice, none of it requested. Think first.
Hey Cort
Honestly you write such a prolific number of blogs that when I first found healthrising I figured your blog entries were supported by a team or something like that. Even if each entry was a team effort I’d be impressed if such a team made half as many blogs as you make at present. Of all the sources I use for keeping up with the present state of ME/CFS none have anywhere near as much to say as you do about the specifics of new research and why it matters
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Regarding your health
Don’t know how you survived on such poor sleep for so long, I’d be dying if I had only 6 hours sleep every single day. When I started having real trouble sleeping I started testing sleep med after sleep med with my ENT until we found some that really worked, a doctor at a sleep center probly would also be able to help anyone looking for sleep meds. I typically just use dayvigo to get enough sleep but after I read Dr. Jacob Teitelbaum and Dr. Sarah Myhill advised combining sleep meds I started to do so. If I’ve overexerted to the point of having real trouble sleeping I will combine meds, for instance, taking cbd+diphenhydramine+dayvigo all together. Melatonin, theanine, and gabapentin are other ones I often add when combining. I’ve never had any problems with any of the combinations I’ve used, even when combining frequently.
You have mentioned a less toxic version of cyclobenzaprine several times, I have it written down as Tomnya, don’t know if you ever tried cyclobenzaprine but it knocks me out for 8-16hrs depending on dose, I’d use it all the time but I feel slightly poisoned the day after, not that it’s that bad but my health won’t improve no matter how much I pace if cyclobenzaprine is in my system, though it’s still very useful to have in when I absolutely can’t sleep as cyclobenzaprine is so powerful, If it just wasn’t toxic it would be perfect for me. In any case I don’t know if it would make you sleepy as it is prescribed to me as a muscle relaxer for pain relief not a sleep aid, gabapentin is also rx’d for something other than sleep otherwise insurance wouldn’t pay for it at the same time as dayvigo as they clamped down on individual patients having multiple rx sleep aid from what I understand. They might not even allow multiple sleep aids for one person with or without insurance. By the by, have you been to a sleep center and had them run an in-lab sleep test on you?
You mentioned things got worse when you used fermented foods. I wonder if the fermented foods could have caused SIBO or perhaps large intestinal dysbiosis. The biggest uptick in health I’ve experienced in the last decade was from taking Alinia as an antimicrobial for my gut after being in a real bad state health wise for months after eating spoiled food repeatedly. Xifaxan, another gut focused antimicrobial taken a year or two later, did a lot for my health as well.
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I’ve always had a knack for coming up with original ideas that improve the efficiency of things, here are some ideas that may be of use to you, though use your judgement as I don’t know in detail what you’re dealing with and I don’t have experience with writing blogs or handling donations
There have been many blog entries on healthrising written by others, perhaps one or multiple people among the community would be willing to step up and write blog entries consistently, maybe with your direction or with you picking the subject and providing data of interest.
Perhaps you could hire someone or get an AI to help do some of the work on blog entries, are there any parts of the blog that you think don’t need your expertise to complete
I haven’t looked into AI yet but I wouldn’t be surprised if there are good uses for it for writers. Perhaps you could find an AI you could feed the ideas and stuff you want in your blog and it could organize them into paragraphs without you having to worry about making the grammar match up or doing the spell checking or any of that kind of tedious stuff. I notice rewriting stuff to add new information is especially tedious, don’t know how much you deal with that but I could see AI dealing with that being a big boon. Dictating generally feels so much better than typing, an AI that one could talk to seems ideal. maybe there are other things blog writers are using AI for these days?
Perhaps you could do blogs half as often for a while, with a pinned notice at the top of the blog that you’re cutting back for a time for the sake of health. Maybe halfway between releasing each blog put a small notice above the most recent blog entry stating what the next blog is going to be on and when it’s likely to release, this to show that there is activity
–
As to the Thank You notes, I can’t speak for others but I would be fine without being thanked, maybe whenever you have a big donation drive you could say somewhere during the donation’s payment process or in the segment of the blog which alerts that there is a donation drive and asks for support something that conveys the following: in the past you personally sent out thank you messages to everyone but it was a major drain on energy, energy that you could use to write more blogs and maintain the health you need to continue the blog in the future, so going forward you will simply thank everyone who support healthrising here and now.
Perhaps after that, when the drive is over, send one standardized letter of appreciation to the entire community explaining the situation and thanking them all.
Maybe there are other people who run donation drives you could speak to in order to discuss the pros and cons of different ways of handling thanking the community for their support
I’d be interested to hear what other posters on here think of the above ideas on thank you letters for donations
In any case I hope you get your health figured out, I’d be real sad if your working on this blog that has given hope and help to so many ended up bringing you down
All the best to you Cort
Oh, Cort, I just agree with every one commenting here. You are a true hero to this community. Where would we have gone all these years if you hadn’t of been the voice of information and encouragement for us.
Thank you
Echoing it. Don’t have the spoons to elaborate – it’s all been said. You do a remarkable job and it’s greatly appreciated.
As always thanks for your support, Jeanie 🙂
Julia McCoy and her company firstmovers.AI specialise in setting up AI agents that conduct research, write new articles/posts/emails based on samples given to them if the authors style, and even conduct marketing campaigns. You can find plenty of her videos on YouTube, the most recent ones completed by her digital avatar, Dr McCoy.
David Shapiro, a long time commentator on the coming age of AI is a co-host of one podcast with Julia and is part of firstmovers.AI.
I think that they could help you out a lot Cort, especially as both are recently recovering from burnout & health conditions caused by overwork for long periods. David has recently posted a few Burnout Recovery videos to YouTube documenting his journey and what he’s found helpful.
Thanks for the tip Stewart. I will check David out.
Great:-)
David just posted another YouTube video about how he became an AI Maximalist (essentially the more AI in everything we do, the better). He was extolling the virtues of OpenAI’s Deepresearch tool, which completely transformed his understanding of his health and convinced him that AI is a massive boon that should be rolled out everywhere. Imagine, your in-depth knowledge of ME/CFS an FM amplified by one of the most powerful AI research tools in existence? Pulling together disparate knowledge into a cohesive analysis is what these tools excel at.
Lots of great ideas – thanks Lane!
Health Rising did just move to a CRM – which helps greatly with collating the donations – so that’s good. I’ll see how it goes during the donation drives and if I need to cut back more.
Thanks for the ideas about sleep (cbd+diphenhydramine+dayvigo all together, Melatonin, theanine, and gabapentin)
There’s got to be something that works. If I could just get back to 6 hours! That’s my goal! 🙂
Cort, I offer the additional thought regarding sleep assistance – I and my family have found the homeopathic Calmes Forte by Hyland to be excellent. Perhaps this would be worth a try?
Again, you are giving Cort advice that he did not ask for… and wasting time and energy.
The most important thing is to look after yourself Cort.
What you have done with Health Rising has been an outstanding resource for patients within these communities. Even with what you call a ‘lower productivity rate’, it is still – objectively – a high productivity rate, as anyone would say from looking at your recent output, were they to be coming across Health Rising for the first time.
I have found the buteyko method very helpful for sleep. You might like to try one of the free five day workshops lead by the ‘Learn Buteyko Online’ group (Christopher Drake). It’s a bit of a slog and takes time, so perhaps something to consider after you have finished with ANS Rewire. Buteyko really helps with blood perfusion and makes the circulation feel warmer. Also drinking ORS at night helps me sleep better.
On meditation, I recently learnt that the Buddhist nun Pema Chodron has ME/CFS. It’s interesting that someone who must be meditating for hours every day has still not recovered from the illness. I wonder what therefore is the best kind of neuroplastic exercise to fix the (undoubted) neutoplastic issues in ME/CFS.
Thanks for the Butyeko sleep recommendation. I’ve heard good things about it. My guess is that neuroplastic exercises are more powerful than meditation. Dan’s ANS Rewired course heavily emphasizes both actually – which I think its a good idea.
Although I don’t always agree with you, and there’s no harm in that, I really admire you and your work Cort. This y is an amazing resource, and the research you consistently cover provides hope, even if the answers are still frustratingly slow.
Take care of yourself
‘Website’ not ‘y’!
Thanks 🙂
Hi Cort, I am not doing well enough to read this account in detail, but please know that: At times I’ve found your productivity incredibly high (in particular considering you have ME/CFS), with blogs coming faster than I could keep up with myself :-). I have absolutely no problem at all with you blogging at a slower rate, or staggering finished blogs to post later.
Your health is most important! And also your blog is such a wonderful resource to this community so I’d much rather you keep things slow and continue, than crash yourself into non-functionality over time. q
Here comes a heartfelt warning: From the time when my exertion tolerance dropped under what I called the “Pacing Watershed”, it started to spiral further and became much much harder to regenerate. This happened as a result of my activity for the German ME/CFS petition. What I call the Pacing Watershed is the level of exertion tolerance/energy where available exertion tolerance/energy cannot cover the minimum activity required in one day, resulting in a net negative energy/exertion balance per day; below it, Pacing becomes much more difficult. So my advice is to stay well away from this watershed 🙂 If a big crash takes you under that limit, regeneration with out compromise to get above it again is the most important thing really.
Please take good care of and take time for yourself! In particular at a time when on top of everyting you must have had an emotionally stressful time with the political changes and science upheaval resulting from it. (H*ll, I am German, and myself and most Germans have been emotionally affected by this. – Still collecting uplifting pieces of news though :-), like new vice president of German parliament sharing a link to a new ME/CFS documentary, or a German national league football club participating in the ME/CFS Lemon Challenge creating ME/CFS awareness in the stadion.)
Maybe you can also outsource some stuff, e.g. let some scientists write their own guest blog explaining their study.
Warm regards and best wishes! JR
I think me and my pacing watershed crossed paths last summer!
I never understood the proliferate posting…an amazing feat
The reed bends but does not break !
Take care of yourself first…
I like that a lot. Thanks
Dear Cort, I have often marveled at your ability to read, digest and create blogs of dense scientific material for public consumption. I have to do this for my work too and it is mentally and physically exhausting. I actually believe computers suck the life out of your brain.
If you could get a guest blogger for a month, you might find you feel better taking a vacation from the computer for a while. I know that the two days I spend in the office in front of two 32 inch monitors, I don’t sleep well and feel worse the next day. Fortunately, I am able to work remotely the other days on a laptop.
I have had ME/CFS since 1984 and had done fairly well until I got Covid twice in one year. Now I am struggling with balance and walking (called Covid gait). Fortunately, the heart problems and high blood pressure have gotten much better.
I miss being able to play golf and travel with my husband, but at least I can work and get out from time to time.
Have you ever tried Nexavir? Dr. Cheney recommended to me and it has really helped even with the Long Covid.
Here is a fun fact. Within the last month, I had a 95 and a 92 sleep score on my Galaxy 5 watch. Both nights I had dessert at 9 p.m. I am wondering if sleep problems may have something to do with low blood sugar in the night.
I hope you feel better. It is so discouraging to feel you are going backwards.
Thanks, I still find it rather amazing how much energy it takes to write given that I’m very interested in these subjects and I actually enjoy writing. I even like editing! I really get into it.
It’s only during writing and while traveling, though, that I find I need caffeine. I’m so interested in what future studies will show about energy production and metabolic breakdowns in the brain.
If remember correctly, a Japanese study I think it was found that doing a strenuous cognitive task impacted autonomic nervous system functioning in people with ME/CFS! How about that!
Cort, I have long wondered how you could produce so much! Slow down if you need to. 🙂 My kids with ME/CFS and myself with Long Covid, all find mental exertion to be more, or at least equally, draining as physical. That’s actually why the Visible app never worked for me – it didn’t take cognition into account.
I’ve seen a few people suggest using AI to reduce your energy expenditure, and I would like to ask, please please please don’t do that. I would rather you cut your productivity by 70% than use AI because then I couldn’t trust your work anymore. AI is just too likely to make crap up.
Thank you for all the years of incredibly valuable insight. May you have the energy to continue (but not so much!) for many years to come.
The perfect illustration of the difference between being tired, even exhausted, versus being depressed. The desire, the excitation to do things, to live, to create. But just no energy available.
Dear Cort, I think you are still producing quite a lot of articles. Many ME/CFS/POTS/FM and long covid patients cannot keep up with this. I have a lot of respect for you even though we sometimes differ in opinion. Usually about the mRNA vaccinations (lol). But that does not matter. You often provide good information about our disease. Thank you for all your efforts all those years. The fact that you now feel deterioration is annoying. But often normal. But everyone feels if something is not right. There can be many reasons for it. I recognize a lot of what you write, only I am a few degrees more seriously ill. It really seems like the well-known autonomic switch problem and adrenaline. You have crossed a line. And then bam! It always gives tension and fear when you deteriorate. At least that is how I experience it when it happens to me again. Example: last January I felt so bad that I had not felt it for years. Fortunately, things are going better again. I think you have to find a new balance and get back to your old level. But you are wise enough and don’t need my advice. Keep it up I wish you the best. I look forward to your new blogs when you have energy again.
Thanks Gijs!
“I think you have to find a new balance and get back to your old level. But you are wise enough and don’t need my advice.” Not nearly wise enough – I’ve been pushing successfully for a long time – and I appreciate the advice to find a new balance and hopeful get back to my old baseline 🙂
I have moderate ME. If I pace myself, and limit my activities, I’m ok. Every now and then, though, I crash, because I’ve done too much. Itook part in a red light therapy trial, and it really helped me with energy levels. I only used it for 2 minutes a day, for 2 weeks, in August 2024. I didn’t have a crash until November 2024, a full 3 months since taking part in the trial. I’ve since bought one for myself, and have been using it since January 2025. My energy levels have gone back to what they were during and after the trial. The lamp I have is bigger and I use it for longer, for 10 minutes each day. It’s not cheap to buy, but I have a discount code that I’m happy to share with you, that will give you 20% off.
I’d be interested to know the brand and model that you bought please Shirley – and the code if you don’t mind sharing that
Shirley, would you mind sharing what wavelength you were using for the RLT and if it was continuous or pulsed? Thank you!
Thanks for the offer Shirley – and thanks for sharing your success. Congrats!
Red light is certainly something I’ve considered. Living like I do – camping out – I get plenty of light. I guess my question is whether I’m getting so much light that I’m getting enough red light .
I really appreciate your sharing this journey with us, Cort, and in such detail. Even though I read all I can about our shared condition, it’s rare to find such a comprehensive case study of one person’s changes over time, along with the thoughtful analysis. While of course all the details vary, this really helps me in my struggle to make sense of my (changing) numbers/symptoms. “Thank you for sharing” seems so trite, but this is really helpful to me.
Carol in British Columbia
You know, as I was writing it down, I thought this is really interesting! (lol). Thanks!
Want u to know I appreciate all that you do and pray you will improve over time. Unfortunately my HRV hovers 10 mostly and a very rare spike at 15 which I was hopeful would be my new pattern but wasn’t. Following your blogs for hopeful and helpful info. Love you
Thanks, Denyse – we actually have a blog coming up on HRV. Mine fluctuates tremendously – yesterday it was down to 10 as well – but I have seen upward movement and that is gratifying. One of the reasons I continue to do the meditations is that I can track their impact on the Oura ring and it usually shows my HRV increases during them.
Good luck!
Just sending you a lot of care and hopes that all your hard work to figure out what’s going on and making adjustments pays off 💜💜
Thanks Jm – appreciate it 🙂
We always like to hear from you whatever you write! (my long standing impression) so I hope you can give yourself permission to write not only fewer blogs, but of different kinds. It is okay to change!
Of course most of us want to continue to learn more and manage better, but sometimes we just need to be happier with the limitations we presently have.
I am going downhill a lot and yet still was tempted by the idea of getting two puppies myself (impossible) but wisely forbore. The hardest thing now is often self acceptance but it is also maybe the most fruitful thing.
I wish you and all of us so very well!
I too have been going downhill for three years. My husband and my doctor kept telling me it wasn’t so, but I think they were being over-optimistic. I think a huge factor that I wasn’t considering is my age (now 71). I haven’t compared my Oura scores for that many years in a row, so thanks for the tip. It’s really difficult to stay out of PEM now, and it takes longer to recover. I can’t go out of the house more than twice a week, and then for not more than two hours at a time. I can’t help thinking that if I could get my hands on some Ampligen, I would get a lot better–it pulled me out of a bad crash in the past. Wishful thinking, especially now that all the research dollars have been cut by unthinking politicians.
However many blogs you publish, Cort, they are very much appreciated.
I don’t know about the age thing. Would people with ME/CFS/FM be more affected? Does something about aging impact them more? Of course, everyone is affected but my twin brother is still out exercising. He can’t handle much alcohol any more but his sleep is fine….
I would love to know about the effects of aging on ME/CFS/FM. A survey would be a good idea
Somebody should do a twin study! I got Ampligen with a twin and her sister was perfectly healthy.
Thank you for sharing your story of this, Cort. I feel empathy for you and identify with this for my own journey.
On the one hand I feel that if we take better notice of our health trackers maybe slow ( or quick) declines could be avoided. On the other, it we had no trackers and just had to rely on our own sense of selves, would this serve us better? I have no idea!
We have become a very thoughtful people of necessity- and this in itself is exhausting for our brains, which use so much of our energy.
I wish you well on your own health journey to greater strength and resilience. Please don’t worry about needing to respond, those who understand and walk on their own similar path need no apology or explanation. I just really appreciate your work for us when and if you are able. Please put your own health first.
I have just attended a very thoughtful provoking but also life affirming online conversation about acceptance and if possible embracing of where we are so that we can be peaceful with it. Experience over all these years has helped me with that ( at times!), … always a work in progress.
Go well Cort you’ve got this!
Thanks Clare, one thing I’ve noticed while doing ANS Rewire is how impactful on my health worry and fear is. I’m finding a lot of help from a practice from my Landmark seminars – which is to “choose everything the way it is and the way it isn’t”. Being in choosing or accepting mode is entirely different from being in judging, worrying, etc. mode and I’m finding it quite enlivening.
Thanks for bringing up acceptance 🙂
Stress is a major factor to health, Period.
Dosent matter who you are , but with cfs it’s extra! Rest up and Relax 😌
Are you using ldn at all? I’d be dead without it lol
I agree – stress is a huge player for me. I think the stress system is just totally overactivated. Funny enough, I got some LDN about the same time my sleep tanked and I’ve been afraid to try it as it hurt my sleep before. Gotta give it a try though. Thanks for the recommendation.
If you still have sleep issues, I found L–tryptophane an important addition to sleep meds and would recommend trying this in combination with melatonine.
What I take for sleep is 250-500 mg L-tryptophane (degree effects can depend on the brand used) and up to 2.5 mg melatonine (amount of melatonine can vary depending on the person – I found upping the melatonine dose helped sleep through the night) qq
(and when I’m on the patch, also 3.5 mg nicotine). Less often, I add a tablet of levocetiricine or low dose trimipramine (I think cetiricine and trimipramine should not be combined though).
On days with much overactivation or stimulants, they might not work as well.
I meant half a tablet of levocetiricine
Oh, and a sleeping mask! I find that waking up early due to natural light is NOT a good idea any more when my ME/CFS became more severe. Plus, saw an article how sleeping in the dark improves sleep quality even in healthy people. Keeping my blinds almost closed at night and wearing a mask helps.
I’m so sorry you’re experiencing a severe relapse. I look forward to your weekly email more than you know so am disappointed I won’t be seeing it as much, but as someone who also struggles with this disease, I clearly understand. Just a thought-create an instagram account for your subscribers and you can still communicate to us but will be less exertion for you-via photos or videos of content. You would be hugely popular on that platform as it is low-energy output for us warriors to view content!
Ha! Instagram – the one major social media platform Health Rising is not on. I have an Instagram account. I will look into it!
Thanks for the idea 🙂
Hi– I agree that you give us enormous value, all the time, and that you should not spend any energy thanking us individually. One collective thank you with a little note for the newcomers about best uses of your energy is plenty. Of all people, this group will understand. I am absolutely fine with less blog frequency. You crank out so many blogs that are so packed with information. You won’t be shortchanging us if you slow down a little.
I had a rough 2024, with two exhausting weeks at Mayo trying to figure out a better epilepsy treatment (we didn’t,) a second bout of COVID and my first round of mononucleosis (at 71!) So this year I’m in deeper fatigue and pain, and need to do a lot less in a day.
I have been going through these ups and downs for over 40 years, with times of total crash and times of almost normal. It’s always been about noticing, adapting, noticing again, adjusting. So thanks for letting us know where you’re really at and that right now you have to be less productive.
Thanks Aurora for your understanding, and for this “It’s always been about noticing, adapting, noticing again, adjusting” and for this “I have been going through these ups and downs for over 40 years, with times of total crash and times of almost normal.” as I’m not really used to these relapses…:)
So much of what you wrote resonates with me. I started noticing a downswing in 2022 and have been accumulating additional illnesses. Sjogrens has been slowly eating away at my mouth and I too, spend a fortune on my teeth. This past 8 months have been horrible and I got really depressed in a way that was scary. I can no longer drive and cannot travel alone. Thank you for sharing. I hope you can get better and or maintain your fantastic and hopeful outlook.
Sorry to hear Nina! So easy to get depressed when faced with all these challenges. I’ve noticed depression just makes everything so much worse and I hope, that whatever happens with the Sjogren’s (my mother had it), and your teeth (just about every tooth I have has been worked on), that you find some way to alleviate the depression.
It means so much to me that you replied. Wishing you all the best. Nina
I too have noticed a downturn in my energy levels especially after contracting covid and rev multiple times. I think it is amazing how much body awareness you have and how you take care of yourself so well while still living an active lifestyle. Kudos to you for sharing your journey and inspiring us all.
Cort, your need to explain just punctuates your dedication to the ME/CFS community.
Lately I have noticed just how much energy all my health related activities take. Energy is spent from the small; taking supplements, noting trends, going to doctor’s appointments, and all related. It’s sneaky how all these seemingly small things end up to be big energy thieves. I do wonder if that isn’t the case with you–however I cannot presume.
Lately I have been sleeping in as long as I like, doing activities that I enjoy rather than the ‘musts and shoulds.’ I have begun an ‘irresponsible productivity flow’ listening to my body and capitulating to its desires–and my energy is improving. (I still however, mostly brush my teeth 😉 And floss too).
I’m just wondering if you really listened to your body and gave it total permission to do (or not do) what it really wants–at least for a while. No cheating! Give the Oura a vacation! Forget worrying about the next blog. Don’t read any research. Turn off the computer. Do these suggestions make you feel uneasy? If they do, it goes to show how much mental energy is being chewed up trying to keep up with your self created benchmarks.
I don’t need a thank you letter. I know you appreciate any support. I think we all would understand a thinning of articles if that meant you were doing better. Kindest thoughts your way!
Dear Cort, Thanks so much for your update. Yes, I have noticed fewer Blogs and wondered if it was time to pass on the battery, but to whom?
I have followed you for over twenty years, all the time I have been ill myself. Your blogs are inspirational, and I must say irreplaceable. I mean that in a good way, haha.
I’m so sorry to hear that you have been feeling this way. Boy, I can relate to everything you say.
I am now 76, and I have been improving since I got ME/CFS in 2003, so you can also improve.
Chinese Herbs and Acupuncture helped me through the years and kept me moving forward.
It is time for you to take a well-earned break and get help with the blog or the things you are so passionate about. Please take care; you have been one of my shining lights for all these years.
It’s your time to look after yourself, so have a good lunch with that. Best of health, Howard.
I’m so sorry you’re experiencing all this Cort. It did seem there were slightly less blogs but for me at least, it works better. Please don’t be concerned about blog count or thank you notes, we all know you appreciate any support we send. I’m glad you’re currently doing better and got this off your chest – take care of yourself first and foremost.
Dear Cort,
You have been an incredible fountain of very helpful information about ME/CFS/FM to our community. You are very, very much appreciated. It’s OK and understandable to slow down some. I know how hard it is to expect to recover back to baseline after a particularly energy expending event and then it not happen. All we can do is all we can do. Your health is important to many people so you need to do what it takes to keep yourself as healthy as you can. When I pray for my health, I always include all of us with ME/CFS/FM because we all seek and need healing! That includes you, Cort!
Many Thanks to You Cort,
Debby
Cort – this website is such an amazing resource – I’ve had LC for 5 years now, but probably had mild ME/CFS for many years before that. I’ve learned pretty much everything I know about the illness through Health Rising.
Give yourself a break – I like Betty’s idea of guest bloggers. There are so many people who can fill in and help so that you can get more rest. Pacing is so hard! But needed! As you know, not pacing can have significant consequences.
Please don’t be hard on yourself. Rest up!
Hi Cort,
thank you for your candour and all the good you have done for us patients and the ME/CFS-field.
You are needed in this world for a long while yet. So please take all the time you need to yourself, to get to a healthier place, whatever that entails.
We’ll still be here. But I think we all agree that we much rather want you to take good care of yourself than pressure yourself when you’re already going on fumes.
Wishing you lots of health and happiness!
Its interesting theres no mention of an
MRNA shot here? I have had all those neurological symptoms you describe ( never experienced in 43 yrs of ME) post jab almost 4 years ago. The decline in my health has been on a similar trajectory to yours – and I know without a shadow of doubt what to blame for this as it started happening within x1 week.
Yes, I could echo that (re vax). Have had this illness since taking a neurotoxic antibiotic in Asia over 2-3 months in 1969. This completely blocked my sleep until I eventually found a pharmacy that doled out an early benzo sleeping pill. Betweenwhiles mainly mild but with some weird symptoms (and with career-changing blips), but – given no sensible diagnosis – I just carried on enjoying working until a sudden series of collapses in 2013. Having avoided medics for decades I at last got a sound diagnosis of ME/cfs.
I am particularly interested, Cort, in the questions you raise about ageing and about sleep. In the run-up to my sudden collapse I was pretty well and had abandoned my benzo sleeping pills, and for several years of hard work during my 60s had been managing on about 4 hrs nightly. I often wonder whether, had I not given them up, I might be less severely affected now in my 80s. Of course, I am back on benzos at night.
I appreciate the puppy problem. Ours is now 3 and injured herself a couple of days ago, so we had to cart her down 20 steps to pee that evening, and back up again.
The adrenaline kicked in but of course I am now paying for it, as for every even more minor exertion.
Cort, I really appreciate your blogs, which you pitch so well for those of us without scientific expertise. Wishing you all the very best.
My thoughts and prayers are with you, Cort.
I’m going to make this quick as I have limited spoons today. I browsed through other people’s comments but didn’t see this mentioned: have you tried Visible? It has been a true game changer for me.
I thought the pacing that I had been doing was good enough until my Visible showed me that it was actually a joke. Now it is training me to pace MUCH more aggressively, and guess what—after six months I noticed that my sleeping HRV scores slowly but steadily started inching up significantly. I have never seen an improvement in my chronically bad sleep scores before, and I have been tracking and trying all the stuff for nearly 10 years.
Visible is hard—the pacing changes are brutal—but it is working for many of us. There is a Facebook group for users that is incredibly helpful and encouraging.
(My apologies if you have tried/written about Visible already —I have not been able to read all of your posts.)
Also, I am a donor—you don’t need to use up your precious energy to thank me!!
YES! I am using Visible and love that it shows me how well I am pacing during the day. I wasn’t thrilled when I first started using it because I kept getting into my exertion zone. It seemed like I couldn’t do anything without triggering a warning. Before Visible, I thought I was pretty tuned into my body, but it turns out I was overexerting and not knowing it. I’ve been using Visible long enough now that I can feel when my heart rate is elevated. In addition to understanding how my body feels, I’ve learned about the link between heart rate variability and resonant breathing. This is my 18th year of ME, and it’s one of the best I’ve had since getting sick. I encourage everyone to contact join.makevisible.com/682207c3c5de37. This is an affiliate link that gives you $20 off of the membership when you join. I get the same amount off of my annual membership, too.
Glad to hear Visible is working. I’ve been wondering what happened to it. I will have to check in again.
1st off, I don’t want to write too much, both bc you have a lot to read here already & bc I’m not up for it. But I wanted to tell you how thankful I am for all you have done & still are doing, You may be doing less, but it’s still a lot. The info is so v important, but so is taking care of yourself, so I really hope that you are able to do that. I hope for improvement for you in general, bc I feel bad for you getting worse, & bc I woudl hate to lose your blog, & bc I know how much the blog means to you, as well ( to so many of us). But definitely, taking care of yourself matters the most.
Also, I was goign to make similar comments to those already made re adrenaline & re what JR referred to as “Pacing Watershed”. For me, the two seem tied together, as once I hit the “watershed” I am constantly doing everything (& i mean everything that I have to manage, even the littlest thigns), using adrenaline. My theory is that the adrenaline is produced in my case, at least, as part of fight or flight, bc my body literally doesn’t have enough mitochondrial energy to keep my alive AND do anything else.
So, the fight or flight related adrenaline kicks in. However, it takes mito energy to shut the adrenaline down (unless the body literally runs out of the ability to even produce it)….hence the tired, but wired thing..so exhausted I’m going on adrenaline even doing the least little thing, but no mito energy to shut that adrenaline production down either. So, along with many other issues, no sleep.
And, eventually, my body does run out of the ability to produce more adrenaline for awhile, leading to an intense crash. At this pt, I am always in the watershed thing, so I am always goign back & forth between goign on adrenaline & massively massively crashing. (To me, the watershed thing is a crash already, so the run out of adrenaline thing is hard to even describe, except it’s exponentially worse.
I definitely would hate for you to have that happen, & hope so much that you are able to slow down enough & do the things that you have found that help you.
one more comment (sorry, I guess this didn’t wind up being as short as I was trying to make it), is that someone mentioned probiotics causing issues like SIBO, & that is very true, but they also produce H2S, which is a neurotoxin. Some of us seem unable to eliminate that, & it can lead to many major problems. So, as good as probiotics (like the fermented foods) are for you, they can cause us issues, too…..for me, sleep, energy, gut issues, & cognitive function are the most impacted by those.
Ok, I’ll shut up for now & just leave with best wishes….and for what it’s worth (not pushing my beliefs on anyone), I will be praying for you….hope this came out rt & was clear (am really fried)
( wrote the whole thing and with a flick of a finger I think it all disappeared- so my apologies if it didn’t and this is a duplicate.)
Cort, I am among those who have been absolutely astonished that you can BOTH do the work that you do AND have ME/CFS. If you cut back by 50%, I’d still be astonished. I can’t keep up with your work-I TRY and am so, so grateful for it.
I’m pretty sure your work has been the foundation for a lot of us, and even more certain that we haven’t thanked you nearly enough.
So, you take care of you however you need to, which I think you are doing-but have no guilt, PLEASE.
Blessings to the man whose life work has propped up so many, kept us informed and above all, hopeful. Your research, communication with us and advocacy for us has been an incredible gift. Now take the time you need to be your best.
Dear Cort
Thanks for all you’ve done for the ME community. I have learnt so much from your blogs – but at cost to your health. Your thoughtful examination of the medical literature has made it possible to try new things that made life much less unbearable.
Melanie
So sorry to read that you’ve been having all sorts of health and energy depletion issues Cort 🙁 You probably know more than anyone, what you need to be doing. Or *not* doing! 🙂
I wondered why I have been able to keep up with some of your blogs? At your usual previous production level, I couldn’t keep up.
The puppies sound hectic but fun. The trackers & leashes seem like a good plan. The stress of dogs gone awol is exhausting. I’ve had to keep my dog Hailey on a long leash, when we go for walks as she’s prone to going *exploring* & we live next to a road. She only comes home when she’s ready to, not when I call her obviously!
Hope you prioritise your own health & feel a bit better 🙂
Hi Cort.
So sorry to know your health has taken a downturn. Thank you for talking about it openly, and for your unselfishness in writing the blog. This audience understands the necessity of lowered productivity— Most of us have experienced it ourselves at some level, many of us profoundly.
The most important thing is that you do what is necessary to take care of yourself.
In the meanwhile, please know that you make a very important contribution to this community. I conside your blog by far the best available source for reliable information, and if it comes less frequently, that’s all right. It will continue to be received with real gratitude for your effort and knowledge.
I have been dealing with this illness now for thirty-seven years. For me it is characterized as severe to moderate, meaning I get little windows of time now and then when I can be up and functioning for perhaps three or four hours on a good day, as long as I don’t do anything strenuous. Also meaning that on average, about 85% of my waking hours are spent lying down resting, because that is all my body will allow. Profoundly exhausted, resting and aching and feeling like I’m sick with the flu . . . I read a lot : ) And I have managed to write two books. Life isn’t over, it’s just very different than I expected.
After all these years I still haven’t found anything that really helps except rest. And I have tried many things. Your blog has given me hope though. A solution probably will not happen in my lifetime, but I am heartened by the fact that science is, finally, focusing on figuring this out, and acknowledging that it is a real illness– It most CERTAINLY IS!!
Best wishes to you, Cort, and thank you again for all the effort you put into sharing information with us.
Take care of yourself : )
Do whatever you need to do to protect your health.
Hi Cort – you may think you are posting less but I remain in awe of the fact that rarely a week goes past without me reading about yet another new trial or treatment here! I’ve been doing this thing since I had glandular fever/mono 35 years ago. After an initial 4 years of not working at all, I gradually built myself back up to being pretty productive with work – largely driven by enthusiasm and adrenaline with its inherent boom-bust relationship – but have never managed to rebuild any level of meaningful physical activity. (Rarely more than a 15 minute walk and that is probably less than once per week now.) But like you, I have noticed a significant decline in the last few years. I suspect that 3 doses of Covid have not helped, but I also have to accept that age is now playing a part as well. Just turned 69 (damn that sounds old when you write it down!) I’m a few years ahead of you but I do think it is contributing to my diminished strength and verve. I have always maintained a belief that I would recover from this condition and enjoy a decade or two getting back to doing the things I would love to do – but I fear that window is now closing. I hope I’m wrong for both our sakes, and will keep trying anything and everything I can to turn this thing around before it’s too late. (Just started on Rapamycin and HBOT which I have you to thank for and will report back here if either of these proves useful.) Please keep up the great work Cort and please don’t give yourself a hard time if you’re not turning the pump as fast as you once were 🙂
Thank you Cort for sharing!!!! Glad to know you are part human. I respect you even more knowing your struggles. Even if you averaged 1 blog a week you are still Superman in my eyes 🙂 Take care of yourself as you are part of our family
Oh Cort, please don’t worry about us/the blog. YOU, your well-being are so much more important than anything else! Know that.
Had to laugh in understanding at the nightly tooth brushing-or not-as my DDS rues when I admit to it. But do understand too, that some of these things come along with the aging process. Sorry. I’m a few years older than you, and I’ve seen a definite decline in endurance with the increase in years. What can I say? Such is life in the Big City!
I’ve had ME/CFS since a winter bug devolved in early 1999. So after 26 yrs now, I too, get surprised at declines in energy etc as you well described. I find that making *scheduled* lie-downs of at least 20 minutes (that’s on my extra good days; usually it’s more like 2+ hours) really make a difference. Might be worth a try? Or at least your meditation practice… Maybe start it again. Schedule it. As a daily same-time event. That works best for me anyway.
I’m sorry you have to go through this. And to anyone reading this blog too. At least you have supportive medical care. Most Drs have given up on me, if they even cared at all to begin with. And I live in the semi suburban SF Bay Area, with adequate medical care. Chronic conditions and old(er) age are not as reinforcing to Drs as a quick discovery and fix. Couple this with a congenital disease (EDS) I also have, and their co-morbidities, and more often than not I’ve been told to go see a shrink… As my one Dr who supports me says, “It’s not so much a rare disease as it’s rarely diagnosed!”. Or recognized.
But thank you for your blog. Yes, I noticed your “reticence” and wondered about your health. So thank you for your time and efforts on our behalf. We appreciate you, and your informative blog, no matter how often you write. Take care of yourself. First.
I am just seeing this and have not had energy to read it all yet. But as I scanned it, I thought, wow somebody else is going through the same downturn that I have been suffering over the last 18 months! I am so sorry! My friends were so concerned about me lately that they had me move into a friend’s house so I am closer to oversight and care.
Cort, you have been a blessing and comfort to so many, and I have gained courage along my 13 years of ME/CFS after TBI. Thank you and may God bring answers for your health.
Cort,
First off you must know how much of a lifesaver you have been for more people than you can possibly know. I have had cfs for over 30 years and like most of us pretty much just slogged through.
I was delighted to come across your blog that gave such current information. I had hope again. In other words, you have made a difference in my life and I THANK YOU.
Remember, put your oxygen on before you help your neighbor.:) take care of yourself. Your audience is probably the most understanding audience anyone has ever had.
P.S. thank you notes are not needed😊
Cort,
I share these same sentiments as Sandy and everybody else here on the forum!
You have been a lifesaver for me with the wealth of info you have provided for us all, not only in The States, but also around the globe. Thank you!
But as Sandy said, “you got to put your oxygen on before you help your neighbor”.
It means being modest, i.e., recognizing our limitations!
And as some have suggested – Delegate to others!
And staying balanced in all areas of our life – physically, mentally, emotionally and spiritually! This is key, I think.
Take care Cort…we understand.
PS. And maybe listen to your partner Ann, about those puppies 🙂
Much love,
Jo.
Sorry, I just noticed that you don’t have a partner called Ann.
I read wrong. Anni is your dog. Oops 🙂
Cort, please take care of yourself; I agree with others that thank you notes are not required, you can post a general thank you as a blog post. Including responding to the well wishes in response to this post, which by themselves would exhaust one. And put up a Gone Fishin’ (or on vacation) sign once in a while if you need to. Consider AAA if you can and are in a place where you can be reached – let someone else change the tire or tow the van! As a woman, I noticed my health started a decline after menopause so aging / hormonal changes may also play a part (I am just a few years older than you and also have had CFS for almost 40 years). That coupled with the awful flus and vaccine impacts are catching up with many of us. Focusing on rest, diet and immune support is so important. Thanks for all you do but we do not expect it. We want you to be as well as you can be.
“vaccine impacts”?! conspiracist nonsense – And, tell that to long COVID patients who often did not get that vaccine.
No need to be hostile, sarcastic and imperious or bring up the “c” word just because you disagree. How do you think your comments sit with people who got the shot and still got COVID and long COVID. You can’t tell the people who died as a result of the shot, as they are dead. I would suggest you educate yourself a bit better about vaccine impacts via the VAERS database, not the “news.” But I suspect given your attitude you don’t want any information that contradicts your world views. It always astounds me when people in the CFS community, who should have little to no faith in the medical establishment due to the way our disease and COVID has been handled, react so strongly when someone suggests something that veers outside their view of what is acceptable standard thought. For any honest person who has had an inside look at the medical research world and govt at high levels, your views honestly appear quite naive. You’re entitled to your opinion but don’t pounce on others who just may know more than you do.
Thanks Cory for all your incredible production of these amazing blogs that really help the ME community. Please consider taking time out to recover your health and maybe as others mentioned, have a guest blogger at times. Your health is important and as we all know, “pushing through “ never helps, just hurts! I struggle with sleep but find that a balanced CBD/THC oil up at the 30mg level but only a low dose of 0.2mls really helps me sleep 7-8 hours a night. The only time I struggle with sleeping is when I’m in PEM so then I increase my dose to 0.3mls I hope you get some help from Dr Ruhoi and you decrease your activity levels to let your body recover. Thanks for all your amazing efforts to help the ME community but we would understand a slower production rate as I personally found that your blogs were too many to keep track of. Slow down and stay healthy!!
Thanks,
Sue
What I found frustrating is even many ME/CFS doctors and Specialists don’t realise that with this disease patients can deteriorate. I too have deteriorated quite severely over several years.
Please doctors if you are reading this, be aware that a significant number of ME/CFS patients actually do deteriorate. True many patients stay the same, but many others don’t. I have read many, many cases from patient forums of them telling us of their deterioration too! It’s a common issue.
Many of us ‘Paced’ well but still deteriorated. Pacing does slow down decline, and in some cases improves people. But it’s near impossible not to trigger a PEM crash, and it’s each crash that causes damage.
Muscle abnormalities worsen after post-exertional malaise in long COVID
https://www.nature.com/articles/s41467-023-44432-3
Short Visualisation Video on ME/CFS Decline, on that X (Twitter) sorry.
https://x.com/winstoncb/status/1843015175869440169
Short Video of David Putrino Amyaloid plaques in muscles.
https://www.youtube.com/shorts/xALv93I6xLo
Thanks for sharing, Cort. I’m sure everyone would understand if you just posted one thank you to all donors. This is partly selfish…we want you healthy.
Hope you’re doing better today.
Dear Cort, Thank you so much for all that you do. It is amazing work. I’m sorry about your downturn. It can be so incredibly frustrating. I hope you stabilize soon. Best Wishes.
Cort, if Health Rising published once a month, it would still be worth every penny of what any of us donates. Please know that anyone who donates does it to thank YOU. You bring us such invaluable information and analysis. Personalized thank you notes are so lovely, but are never expected and truly not necessary.
Pulling back and renewing your focus on your health makes you a great role model for the rest of us. Another gift!
(I will get preachy about one thing: PUPPIES?? WTF?? lol. We have a rule in our house: no baby ANYTHINGS. Humans, puppies, or kittens. So much work and energy is required! P.S. this rule existed before my long COVID 🙂
Take good care! We are here to read whatever you put out, whenever that is. No one is out here tapping their foot, demanding a blog!
Thank you for sharing this shift in health with us, I’m always wishing you the very best! x
I’m sorry to hear of the downturn in your health, and I hope you will take the time to rest and take care of yourself. Please know that you are so appreciated and beloved by this community, and you have our support no matter what.
Cort,
The group of people who are lucky enough to find your blog to learn from , be understood by, be given hope by the fact that answers are being sought are people who are amazed by your passion to research and share with us and not only greatly appreciate you but absolutely understand you!
It has been hard for me to accept that there is no shame in recognizing that I cannot give what I don’t have to give, no matter how reasonable and justifiable it seems.
Thank you for all you done to help us and for sharing where you are at.
Please know that you are valued!
Take care of yourself Cort, we all appreciate what you do for us.
Thanks, Peach Blossom 🙂
Thanks for your honest update, Cort. I knew something was off but had no idea it had gotten so bad. Please take care of yourself first and foremost. Your “following” (of which I am one) just want you to get better. You have been a lifeline and your posts have kept us informed for all these years so slowing down is something we will become adjusted to until you’re ready to resume whatever your new normal turns out to be. You know so many of us love you and care deeply about your well being. That’s not ever going to change. Take care of yourself and you’ll be able to continue to serve our community as your heart has always led you to do. I will be praying for you.
What a wonderful thing to say and to hear! Thanks so much Pat for your support now and over the years 🙂
I had noticed your reduced blogging rate but as that’s actually easier for me I hoped it was a choice not something forced on you by ME/CFS flaring. I notice my capacities gently sink when I get too good at operating inside but up to my energy envelope. Its frustrating because there aren’t overt PEM signs—to start with—but then I find my recovery from normally heavy days gets longer and longer. My new rule is to leave 5% in the tank every day, which is a challenge when I’m operating at maybe 40% of before. Good luck with getting your equilibrium back.
You’re doing a great job, Cort. Keep supporting yourself and exploring. Dan’s program marked a turning point for me personally as I started to notice changes in my health and body resulting from his recommendations. I’ve been diving deep into nervous system health, re-regulation, and the mind-body paradigm ever since and continue to improve to the point where I’m nearly ready to declare myself 100%. I’ve heard from many other people, some with bad ME for decades, who are finding similar success.
Best wishes to you.
Dear Cort,
I am so so sorry to read this and also for how much time you were getting worse, and kept fighting against it.
Please take your time and rest as much as you can, it is okay if you were to write one blog a month or even less. You have kept us informed for such a long time now! Now think of yourself and the danger you keep yourself in by producing so much information. You yourself are much more important to you and to us. Please put your own health before our information. Rest, rest, rest. And keep us informed about that and about how you are doing. That is the main thing right now.
Take care, and take care of yourself and cuddle your dogs, one of the great pleasures of life. Many good wishes to you!
Thanks for sharing this! And all the best on your journey to more calmness.
Dear Cort, I’m so sorry to hear that you are experiencing a low period in your health and thank you so much for sharing. You have done, and still do, so much for this community. What you have achieved so far with your blogs is amazing and clearly much appreciated by everyone posting here. Please take as much time as you need to look after yourself and your adorable puppies. I wish you all the luck in the world dear friend.
no matter what your blogs are fantastic and help so many people. Sad to hear that your energy is down.
I cannot explain it but there is something in your picture that tells a story. My son who has CF looks great when the problem is lesser, and he looks different when the symptoms are increased. I can always tell. Perhaps it is lack of definition in the forehead. People say I am imagining it but I can always tell him when he is not good with 100 percent accuracy.
As CF is a multi-system problem I guess muscular tension is affected and shows in facial features.
I cannot help but think AI will eventually be able to correlate all of the data and provide some cures?
For the moment it seems to me from reading as much as I can of your blogs that CF starts as an immunological response to an external stimulus such as infective mononucleosis or other foreign stimuli.
Plasma treatments are invasive and not without risks. Simple treatments such as saline infusions or Hartman’s and honey infusions seem like a safe way to restore some body homeostasis and some improvement in quality of life. Perhaps the latter may restore your quality of life?
I find it good to never underestimate treatment to the sympathetic nervous system which include simple things as 9 hours sleep, adequate rest, adequate fluids, relaxation therapy, reduce stress and a diet with minimal sugar and plenty of anti-oxidants.
Not trying to give advice but saying what has assisted my son throughout this journey.
Thanks again for the invaluable service you provide, and I wish you well for some improvement
Thanks for sharing Cort, and thanks for this awesome blog!
I’m sorry for you Cort. The loss of your dogs, then 2 puppies., And everything else is a lot of changes in a short time and it’s a lot of stress. Now you have to leave time for time. It does not matter if you do not write any more article for a while. First of all think of you.
SFC for 21 years following surgery, I learned a lot thanks to your articles. I tried faciatherapy (very well the first months, then return to square one), photobiomodulation and ozonotherapy without success, food supplements (nothing transcendent) … What works best is rest, rest, rest and the least of stress as possible.
Personally, I really like the polls you do as on nicotine patches or hyperbaric oxygen therapy. This allows you to see if it’s worth testing.
Gutted for you Cort. Some of the new symptoms you’ve been experiencing are similar to my new ones that I started getting after getting the Cov vax. I wonder whether yours are connected to Long Covid 🤔.
My ME/CFS symptoms definitely took on a whole new level when covid arrived.
Perhaps time to try Nicotine Patches? We have 25,000 people in our Facebook group now – using them for me/cfs, LC and both combined. The results still seem astonishingly good.
All the best in whatever you decide to do 🤞🏼
Cort: your contribution has been and still is enotmous. Please do not worry. Your priority now is to take good care of yourself so you can continue. Your previous rate was incredible, so now you are beack to normal ! Best, M.
Thank you for your honesty. I hope your health improves in the future.
You mentioned ‘the plague’. I have not been the same since December 2019 after a cruise. My suspicion is that I caught it then but was asymptomatic. The symptoms have been the same on two subsequent occasions (though I only tested for one of those, thinking my problem was bad PEM the first time). Like you, I used to bounce back from over-exertion before that. I was very resilient. I could go on a cruise and manage to dance a fast Viennese Waltz. Not any more.
One of my most obvious symptoms since then is breathlessness. That has been greatly improved since I started taking Longvida Curcumin after a comment on your post about jak-stat inhibitors. Thank you.
I think that Covid has had a significant effect on my health, and on the health of many of us.
I’m really sorry you’re going through this, Cort. You do so very much for this community. Please take care of yourself as well.
so, so sorry to hear this about your health but it surely happens to a lot of us with ME/CFS Fibro. I am up & down a lot, currently no med is helping (the latest I tried was Abilify, helped energy for about 3 months, then stopped flat). Will see what my specialist in Flagstaff says at my appt in April. Hoping she has a new miracle drug to try!
Good day Cort,
Thank you for sharing your personal journey. I will not speculate or advise, as some others have done here, but just wish you well, and thank you for all your hard work on Health Rising (and prior to that); it is (or should be) appreciated, and you have given hope to many. I would just like to shine that hope back on you — and wishing you well!
Brian.
Dear Cort,
Like so many others here your blog for me has been life changing. I had never even heard of SIBO until you wrote about it and that alone changed so much for me. I hope you are not too hard on yourself and give yourself time to rest and recharge. All you do and have done has been nothing short of amazing and resting and regrouping going at the pace your body, mind, and spirit allows is so important. I have also done a deep dive into nervous system programs and have done DNRS to help me cope with ME/CFS. Not cures, but I sure can do more than I could before. I have learned how to rest, stay out of fight/ flight to the best of my ability, and respect my nervous system cues. Recently I had a health scare which created a lot of anxiety and boy oh boy did that stress lead to a crash. Stress/anxiety for me is killer hard on my system. Pacing is essential for me so that I stay on an even keel even with the brain rewiring etc. I hope you feel able to rest knowing how much you have given to all of us. I trust you will blog when you feel able and I am truly sorry to hear you are struggling.
Cort, your Oura ring monitors blood oxygen at night as does my watch. I just realized my blood oxygen at night was way too low…74 last night. Normal blood oxygen should be 95-100%. Check it out if you haven’t before.
Thanks Betty, perfect place for sharing my experience with sleep:
Some years ago I had over half a year continuous gradual decline in health. No single medication, supplement or adaptation that worked before could even stop the decline. Sleep was very poor.
Running out of options, I decided to test an idea I held for long: Laying long horizontal and have near no muscle movement (that aids well with pumping blood back towards the heart, the part of bloodflow ME/CFS patients tend to be poor at) during hours of sleep risks to make blood flow more poorly (slow flowing blood tends to become thicker) and hamper the venous / removal side of blood flow the most. That risks things like blood pooling and lung edema (water pilling up inside the lungs hampering breathing).
I learned to try and boldely see many sleep disturbance symtomps as possible work arounds of our body to such hypothetical problems. Frequent awaking might be “our bodies invitation” to turn around (using muscles a bit and changing position shifting pooled fluids “spreading” accumulation) and / or “our bodies invitation” to walk around or sit upright a bit.
Over time, I gradually build up to do breathing and circulation (light exercises to improve blood flow with minimal effort, find a good physical therapist to learn it if needed) exercises every single time I woke up. I broke up my sleep plenty of tiny bits. I was lucky to have 1.5 hour of sleep before waking up the first time at night. I did above exercises for 15 to 20 minutes each time I woke up. Following patches of sleep got increasingly shorter with patches of 10 to 15 minutes of sleep interlaced with 15 to 20 minutes of those exercises near morning. For any healthy person, this regimen would have been very challenging both mentally and physically and it sure was for me to. But I felt better during the days with it rather then worse, broke my before unbreakable decline in health and began to gradually and consitently improve.
Knowing such very harsh regimen is unrealistic, I learned better methods. Following day time breathing theraphy with a good physical therapist (in order to enhance different breathing techniques), getting up and walking a bit around in my hallway when awaking or just sitting on a chair for 10 to 15 minutes and slowly separately moving my limbs a few repetitions, and stopping (bit by bit to gain confidence it was the right way for me) to try and block “restless leg events” and not only allow them but try and “support” them when they came up (as a way to get blood better pumping again).
Probably it will only work for a small minority of patients (possibly those that tend to do better on stimulants (as those tend to stimulate blood flow and breathing) have a higher chance of success). I consider it cheap and likely with few side effects. The (bulk of the) whole trajectory took me about half a year and irronically lead me to sleep deeper and with far fewer waking up or vivid dreams / nightmares / excessive deep and fast breathing and excessive sweating.
Cort, I’m sorry to hear about your reduced functionality and can relate, having had ME/CFS since the 90’s. Did you have covid at some point? I am not clear where you talk about the ‘plague’ and a cold if you are talking about covid and the pandemic. If so, could you please make that clear in the blog post.
Having had covid I can say it has changed my ME/CFS in the ways you describe (not being able to muster energy I used to be able to in a pinch, having nothing left after a stressful event, relaxation techniques having now having almost no effect and so forth). My baseline is definitely lower, even many years later. The new baseline has sort of has evolved over time in the way you described with some things getting better and others worse or stubbornly staying the same.
I don’t actually mind less blog posts, I haven’t been able to keep up with the ones you have been posting this last year. I personally like the individual stories or interviews with researchers and doctors that I can’t read anywhere else. The blog posts on new studies are nice but most of the time don’t really add anything practical to the mix and are too technical. So rather than waste your energy writing about a study that might lead to a biomarker or treatment, I would prefer you just save your energy to let us know when a biomarker or treatment is actually available.
I hope you find some treatments soon that help and keep us updated on how you’re doing!
Cort, thank you very much for all that you do. Yes, please reduce your pace as much as is needed. You deserve the best.
So sorry to hear of this and I pray you will start to feel better. Its a good lesson to keep track of our progress with these devices.
Hi Cort, So sorry to hear about about your health slippage! You’ve probably already addressed these suggestions but they crossed my mind while reading your blog, (after I stopped laughing about your Cat puppies! More on that later.) First, sleep. have you done a sleep study to make sure you don’t have sleep apnea. I have mild apnea but it’s enough to drop my O2 levels by early am and I wake up to breath. I’m in the process of being tested for a Bipap. And second, have you done a 24 hour saliva cortisol to make sure your pattern is normal. My normal pattern is badly skewed but taking Cytozyme A/D keeps my wake /sleep cycle close to normal. Now those adorable/frustrating Cats. I had a CatX service dog. He would not walk beside me on a leash unless I had a head halter on him. But otherwise he was an awesome dog, once he was 4 years old! They are horrible teenagers, especially being hunting dogs. They need a lot of consistent training but they are food motivated and as long as you are smarter than they are, they’ll be great, obedient (most of the time) companions, in 3 more years. 😉 Please take time to rest up and go slower!
Dear Cort,
I’ve learnt so much about my illness from your wonderful informative website. I’ve had ME about 50 years now. It was gradual onset from early teens, and collapsed too ill to keep going in my late 20s when I finally got a diagnosis. Had severe ME since then. My ME is complex. I’ve gradually pieced together my own ideas as to what is going on in my body – doctors are useless! The only childhood viruses I had were measles and chickenpox ie those that attack the nervous system, and both very mildly. So I now feel I was vulnerable to ME due to a weakness in my nervous system, and that my ME has nothing to do with a persistent virus, and have never had glandular fever. Definitely think for some of us ME is autoimmune. My ME is tired but wired with severe digestive and neurological symptoms. The worst triggers have always been chemicals – can’t tolerate any meds or supplements. The only things I’ve found helpful are occasional tiny doses of clonazepam and aspirin to calm down my system.
I’ve often wondered how you’ve coped with this huge increase in research since Long Covid came along. A lot more time staring at a computer screen and your brain having to process a lot more info. I worked in computing in my 20s – it definitely made my brain more wired back then, and certainly does now. Maybe that has contributed to your relapse? Anyway take all the time you need to rest and chill out with your lovely doggy companions. Don’t feel any pressure to start writing your blogs again until you are ready. Your loyal fans are so grateful for everything you’ve done over the years to help so many of us all over the world – I’m in UK.
Was just in UK. Want to move there from US. Can I get healthcare?? How much??
PS Cort. I think it’s positive that you’re persevering with Dan Neuffers ANS Rewire. I found your blog about it really interesting. I’m lucky, until 2 years ago I had home visits from an ME specialist OT (occupational therapist). She came 3 times a year for 17 years. It was really helpful having someone explain my many weird ME symptoms. We explored many rehab therapies – she previously helped people with strokes. Learning to slow breathing when needed, relaxation and meditation are so important for all with ME. I barely sleep. She would often say if you are lying awake in bed at night but feeling drowsy and relaxed, it is far better for the body than dropping off into an exhausted sleep. So don’t worry too much if you can’t sleep – just keep retraining your body to relax. Also if you are feeling worse break down your tasks into smaller more manageable parts then it doesn’t seem so overwhelming.
My OT helped get the NICE guidelines changed. I think it’s sad when people with ME think rehab programmes are saying that ME is psychological. My OT helped many patients improve or recover. My small improvement has made a big difference to my life, and I’m more accepting of my situation as a result of working with her. A grateful patient encouraged my OT to write a book about it. Fighting Fatigue by Sue Pemberton.
I’m so sorry Cort I’ve followed you for years. You gave me so much information, badly needed in NJ, and I had been a successful federal grant writer in my career as a social worker. I’ve had ME for 25+ years.
Now is YOUR time, Cort.
Dear, dear Cort,
I hope you soak up the respect, gratitude, and care that is coming back to you in response. It’s a landslide, all for you.
Ahhh! Thanks 🙂
Cort, you are simply amazing for all that you do. You are greatly appreciated. Taking time to repair yourself when needed is most important and quite understandable. As much as we love hearing from you (spoken as a person who has followed you in various forums for, at least, 15 years), your well-being comes first. Whenever you are able to blog, it is a wealth of insight and information that we had before it; therefore, whenever it shows up, it is always a gain and a gift for us. Thank you for, so generously, thinking of us. Please do nurture yourself first, though. Best regards to you.
Thanks! 🙂
Thank you, Cort, for sharing how you are doing lately. I’m sorry that you have to cut down working. I loved to hear about the new puppies, and I am happy that now you brush your teeth every night.
I could totally relate to that because I know that something’s off when I go to bed without taking my cloths off.
Self-care is the most important thing in my view. Because I also struggled a long time at understanding it I’ve tattooed on my arm.
I believe there are two reasons for my steady recovery. Good social and health coverage in my “socialist” country, but most importantly, pure egoism.
Rest well – and many thanks for your work.
Please take care of yourself Cort.The community is very grateful for all your efforts, and everything you have accomplished.
I would add that in additional to all the data-driven metrics discussed, it has been an exceptionally stressful time for advocates, given the current political climate, and institutional breakdown of important public health systems. Even if productivity is lower, perhaps the energy cost is also higher; and the public agrees – inflation is up.
It is a very stressful time, for sure. Thanks
I think you’ll return to baseline. You’ve been overdoing it. At 64, even a non-CFS person might struggle to change a tire. Get some rest, allow yourself to recover, and I hope you’ll get back to something close your prior condition. Unfortunately, you can’t escape aging.
I’m honored to be the 146th to commenter to express how much you’re loved and appreciated in more ways than you probably know.
I can only imagine the subtle drip, drip, drip of stress compounding over all this time recognizing a decline — so much so that it brought you to this point of writing about it.
I hope and pray our comments have given you peace in knowing you can safely let go of any conscious or subconscious pressure you may be putting on yourself to continue doing what you love most (writing invaluable blogs).
Whatever brought you to write this blog, keep leaning on that to guide you each day.
I have tremendous hope for you, Cort.
One reason I have hope for you is because I KNOW you can improve again. How do I know this? You’re sleeping 5 to 6 hours per night. I don’t know many ‘healthy’ people who can function with this little sleep. I’ve seen a handful of top specialists and the one piece of medical advice they all consistently gave me was to “DO WHATEVER IT TAKES TO SLEEP, even if that means being on a benzo or any drug for that matter.”
I’m not an “AI person” but a simple search on scientific evidence of the adverse health effects on long term insomnia for healthy people far outweighed the search for scientific evidence of the adverse health effects on long term medication use such Clonazepam (a drug that inhibits ROS generation in neutrophils).
You are so loved and appreciated!!!