Geoff’s narration
The GIST
The Blog
(The written GIST is at the end of the blog)
Monitoring blood lactate levels gives athletes “the edge”. Could it help with people with diseases which have high blood lactate levels like ME/CFS, FM and long COVID
Wearables abound (Fitbit, Oura ring, Apple Watch, STAT earpiece) and who knows what’s lurking on the horizon in the wearable world but a recent paper, suggested something that might be quite attuned to the problems found in chronic fatigue syndrome (ME/CFS), fibromyalgia and long COVID. How about assessing blood lactate levels to get insights into post-exertional malaise?
That’s next in Health Rising’s continuing series on ways to monitor one’s health
- The Stat Earpiece
- Visible: The 1st Long-COVID and ME/CFS Activity/PEM Tracker is Here
- The Virus and the Oura Ring
- How Hannah Finally, Finally Learned How to Pace – and How it Helped
Blood Lactate Monitoring
The paper “Attenuating post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome and long-COVID: Is blood lactate monitoring the answer?“, came as something of a surprise. The lead author Mark Faghy, a clinical exercise physiologist at the University of Derby in the UK, has never studied ME/CFS before. He has, however, published voluminously on long COVID and early on warned about the effects of exercise in long COVID.
Faghy et. al’s working hypothesis is that the coronavirus (or another virus) has damaged mitochondria, leading to mitochondrial dysfunction that extends beyond expected post-viral infection deconditioning and may be caused by reduced oxygen delivery to the tissues.
The idea – measuring lactate levels to help manage post-exertional malaise (PEM) – seems like an obvious thing to do. Monitoring blood lactate levels, after all, works for athletes. Could doing so give people with PEM an edge in their health?
Exercise studies suggest that people with ME/CFS and long COVID tend to quickly burn through their aerobic energy stores and turn to breaking down glucose anaerobically to produce energy. That leaves behind lactate and reduces pH levels in our muscles – causing symptoms like burning muscle pain and fatigue.
While we know now that lactate itself doesn’t cause the burning muscle pain and fatigue we experience after excessive exercise (it’s the acidosis), we know that blood lactate levels are a good analog for them; i.e. if your blood lactate levels are increased, you’ll probably be feeling poorly.
Indeed, a 2019 Norwegian 2-day exercise test found that people with ME/CFS had an earlier lactate turnpoint – a sign of earlier entry into anaerobic energy production – and significantly increased lactate levels at any work level (power output).
While things got better for the healthy controls during the second test – their energy production systems adapted and got stronger and their lactate levels decreased – the ME/CFS patients got worse – their lactate levels significantly increased.
A subsequent Norwegian “energy strain” study found concluded that low oxygen conditions during exercise were associated with alterations in fatty metabolism, amino acid utilization, and glycolysis. Their findings suggested that ME/CFS patients’ metabolism can be stressed even in the absence of activity.
High brain lactate levels and reduced blood flows (read ‘oxygen delivery’) to the brain have also been documented in both ME/CFS and fibromyalgia. The lead researcher in that study, Dikumo Shungo got interested in ME/CFS when he found high ventricular lactate levels similar to those that he’d observed in patients with primary mitochondrial disorders. In fact, Shungu reported that elevated ventricular lactate levels are found in nearly every disorder in which mitochondrial dysfunction is present. Given the recent blog on oxidative stress, it’s interesting the Shungu pegged oxidative stress, reduced blood flows, and neuroinflammation as the key players ME/CFS and fibromyalgia.
A rare French ME/CFS study that examined lactate levels outside of exercise demonstrated, however, that lactate levels can be quite variable. The study – which controlled for activity and diet – uncovered a higher lactate group and a lower lactate group. While the higher lactate group experienced more PEM, lactate levels varied dramatically over the day-long study. The study’s controlled environment – it tightly regulated activity and diet – was not, however, emblematic of a normal day.
Jones’ exercise study also found distinct subgroups in ME/CFS as well as a jaw dropping 50 times increase in levels of acidosis (h+) in people with ME/CFS as well as much longer (4x’s) lactate clearance times. Studies have also found increased lactate in the brains of fibromyalgia patients and their trapezius muscles and blood and in the brains of people with migraines.
In other words, increased lactate seems like a thing in chronic fatigue syndrome (ME/CFS).
Long COVID
They’ve taken a bit to get going, but mitochondrial studies in long COVID are starting to pop up. A recent study that surveyed the metabolic pathways disrupted by the SARS-CoV-2 virus that causes COVID-19 concluded that the virus “strongly inhibits” the oxidative phosphorylation (OXPHOS) pathways involved in aerobic energy metabolism, resulting in increased mitochondrial reactive oxygen species (mROS) production. That finding fits in very well with Shankar’s recent study which highlighted high mitochondrial oxidative stress levels and reduced ATP production in both ME/CFS and long COVID.
Other long-COVID studies have found reduced mitochondrial energy production in immune cells, lower levels of fatty acid oxidation in two exercise studies and altered expression of mitochondrial RNAs.
Lactate can be tricky, however. As noted above lactate levels can vary throughout the day and a recent book chapter, “Potential Biomarkers of Mitochondrial Dysfunction Associated with COVID-19 Infection“, indicated people with lactate levels in “normal ranges” could still have an underlying mitochondrial disorder. Plus, although elevated blood lactate levels may indicate mitochondrial dysfunction, they can also be caused by a deficiency of vitamin B1 (thiamine). That’s an interesting finding given the relief some people with ME/CFS get from high-dose B1 supplementation.
Mark Vink’s Long Trip to the Bathroom
Mark Vink has produced the most startling evidence of lactate problems in any of these diseases. A former physician, judo brown belt, marathoner, triathlete and captain of a Dutch national field hockey championship team (!) Vink got so blasted by an infectious onset of ME/CFS that it was taking him 12 hours to recover from a trip to the bathroom.
Vink reported the results of his n=1 study of himself in “Aerobic Energy Production and the Lactic Acid Excretion are both Impeded in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome”
THE GIST
- Wearables abound (Fitbit, Oura ring, Apple Watch, STAT earpiece) but a recent paper brought something that might be quite attuned to the problems found in chronic fatigue syndrome (ME/CFS), fibromyalgia and long COVID. How about assessing blood lactate levels to get insights into post-exertional malaise?
- Lactate is produced when the body can’t produce enough energy aerobically (there’s the reduced oxygen delivery) and so it turns to anaerobic energy production to fulfill its needs. The acidification that’s associated with lactate buildup results in things like burning muscle pain and fatigue.
- Perhaps not surprisingly several studies have found increased lactate production in the blood, muscles and brains of ME/CFS, fibromyalgia, Gulf War Syndrome and/or Long COVID patients.
- Former doctor, marathoner, judo black belt and all around athletic specimen, Mark Vink’s story demonstrates just how bad lactate levels can get in these diseases. After coming down with ME/CFS Vink found that simply walking from his bed to the bathroom elevated his lactate levels to those seen in marathon runners.
- Measuring lactate can be a little tricky. Lactate levels can vary throughout the day and not everyone with these diseases will have high lactate levels. Plus people with lactate levels in “normal ranges” could still have a mitochondrial disorder. Elevated blood lactate levels can also be caused by a deficiency of vitamin B1 (thiamine). That’s an interesting finding given the relief some people with ME/CFS get from high-dose B1 supplementation. (See blog).
- Still, if monitoring blood lactate levels is widely used by athletes to determine their optimum activity levels, why not do the same in ME/CFS? Monitoring them may help some people with ME/CFS with pacing and assessing treatment effectiveness. One could even envision a study that gathered ME/CFS, FM and long COVID patients together to lactate levels from their home upon awakening, after different levels of activities, and after meals.
- Blood lactate monitors are readily available, if not cheap. The Edge – the model Vink used which comes with 30 sticks – is currently $299 on Amazon US. Extra sticks cost about $2 each.
- What can you do if your blood lactate levels are high? There are unfortunately no easy solutions. One suggestion is to use deep breathing techniques to increase oxygen levels. Hyperbaric oxygen chambers, H2 water or other means that can help increase oxygen levels might be helpful as well. Doing small bouts of exercise/activity may help as well. Some websites suggest eating more alkaline foods.
- Monitoring blood lactate levels might, however, provide some personal insights into what’s triggering PEM and how to avoid it.
- Coming up – a blog on another monitoring possibility – monitoring blood glucose levels.
Vink is undoubtedly an outlier: he’s severely ill and clearing lactate is a huge problem for him, in particular, but he demonstrates just how whacky lactate production can get in these diseases.
Monitoring Blood Lactate Levels?
If monitoring blood lactate levels is widely used by athletes to determine their optimum activity levels, why not do the same in ME/CFS? It seems likely that a wide range of lactate levels are present in ME/CFS and that monitoring them may help some people with ME/CFS with pacing and assessing treatment effectiveness. One could envision a study that gathered ME/CFS, FM and long COVID patients together to lactate levels from their home upon awakening, after different levels of activities, and after meals.
Blood lactate monitors are readily available, if not cheap. The Edge – the model Vink used is currently $249 on Amazon US. You need to get the sticks as well. They cost about $2 each.
Monitoring your lactate levels brings up the question what can you do if your blood lactate levels are high? There are unfortunately no easy solutions for removing blood lactate or reducing the acid conditions that come along with it. It simply takes time and rest for your body to reabsorb the lactate. Interestingly, though, the most commonly suggested solutions are things that have been suggested for these diseases.
One suggestion is to use deep breathing techniques to increase oxygen levels. (That incidentally, is the first thing exercise physiologist Staci Stevens recommends for her ME/CFS clients.) Hyperbaric oxygen chambers, H2 water or other means that can help increase oxygen levels might be helpful as well. Doing small bouts of exercise/activity may help as well. Some websites suggest eating more alkaline foods.
Until we know the cause or causes of the mitochondrial dysfunction found (reduced oxygen flows, oxidative stress, mitochondrial calcium buildup, problems with fatty acid oxidation, endoplasmic reticulum dysfunction, autophagy… all of the above?) in these diseases we’re shooting blind. Monitoring blood lactate levels might, however, provide some personal insights into what’s triggering PEM and how to avoid it.
- Coming up – a blog on another monitoring opportunity – monitoring blood glucose levels.
Health Rising is not affiliated with The Edge or any other blood lactate monitoring products
Personally, I know when my lactate levels go up because I get leg/foot cramps. Usually over night in the early morning hours. For me high dose Vit B1 was the key to tamping down the CFS and cramping. 300mg/ 1 dose/day seems to be my magic number, for CFS and also stopping leg cramps. If I do too much leg exercise (like gardening) I’ll still sometimes get leg cramps but they are usually mild. I hadn’t made the connection between the cramps and B1. I’ll have to experiment and see if they are connected.I believe they are because I’ve tried cutting back on the B1 numerous times as it is a likely factor in MCAS, only to have the fatigue come back and it is likely I had cramps during those low B1 times as well. Cort- I don’t know if you’ve seen this article but it provides a clear, illustrated look at how high dose B1 works, based on Derrick Lonsdale’s discovery. https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency
Are you sure you haven’t got a magnesium deficiency? Lactic acid causes pain rather than cramping. Magnesium Glycinate is wonderful for relaxing muscles and cramping.
I don’t think so because I’ve been taking Magnesium Glycinate 300mg before bed for years and it never helped when I had active CFS and severe cramping or now. Google lactic acid and cramping. 😉
I think taking it when you are “walking around” works (for me anyway) Regards, we need to keep trying………………
found the same thing……………”.almost” immediate physical response of the body upon taking some Magneisium. Just slept 12 hours…. (helps a “little”)
Found this when looking for difference between lactate and lactic acid. Lactic acidosis causes muscle cramping. https://www.healthline.com/health/lactic-acidosis#What-is-lactic-acidosis?
I feel this is a big issue for me. I first noticed it just holding a phone to my ear and my arm wld start burning after 30 seconds like I had been lifting weights…
I am surprised beta alanine is not mentioned as a supplement for helping with lactate build up. I use it regularly and it definitely helps me. Cheap and no bad side effects.
I had the same issues with raising my arms over my head. It felt more like tingling though. Makes me wonder now… Thanks. I’ll check out your suggestion. 🙂
Thanks for this article. I have a lactate monitor and for me high levels of lactate correspond to my post exertional malaise. For example, today I’m experiencing PEM and my lactate level is 4.2 at rest when it should be less than 2. The main symptom that I associate with this is burning pain.
How much beta alanine do you take, and how often? Thanks!!
Typically I take 4500 mg on beta alanine on empty stomach in the morning, or before I know I will be doing something that requires me to be more active.
Recently have been experimenting with doubling that dose and take 4500 mg in morning, and also later in the day..,without any side effects….other than when you first take it, it is common to experience a tingling/warming sensation (mainly in limbs and face). I don’t find it uncomfortable and it passes fairly quickly. I’m not sure exactly how long the benefits of taking it last…but it seems at least a few hours.
Thanks J Smith! Are there caps that big or do you buy the powder? I look forward to trying it out!
I take 1500 mg caps but you can get them in different amounts and also get it in powder I believe.
Thank you! 🙂
….Would you terribly mind mentioning the brand you are using? It would make navigating online shopping a lot easier with brain fog… 1500 sounds like a good size to start & increase!
https://a.co/d/9RFCiva
Thank you!!
Info on dosing and side effects. https://www.healthline.com/nutrition/beta-alanine-101
2-5 g is usual dose, tingling is from high dose but not harmful? May need to supplement taurine. Look forward to trying it out myself.
Have you looked in to Electrolytes to help with the early morning leg cramps ?
Ive started by adding Potassium chloride to my daily drink ( orange juice diluted with Pot Chl and sodium chl ,which i drink during the day
Supposedly everyone is low in Potassium which is used extensively in muscle and electrical impulses in the body and most ppl have the wrong balance of sodium to potassium due to the huge amount of salt added to every day manufactured foods
ie we need approx 4700mg of potassium a day one banana or avacadoe only adds like 3-400mg
Since i started working on my electrolytes ( i was drinking mostly my 8 glasses a day of just water ..which can strip electrolytes) i havent had a single night cramp in my legs which had been something i lived with for last 20 yrs or so
Thanks. I have just started taking K2 (MK & 4) as I get plenty of K1 from my diet. Will see if it makes a difference but I’ve taken K before and it didn’t help. Just an FYI, US RDA for K is way higher than the rest of the world. Know the symptoms of too much K.
Just an FYI, Thomas, I was told (have not looked into it myself) that potassium chloride is hard on the kidneys. So I use potassium citrate, but potassium bicarbonate is also supposed to be fine
True ,im using the Pot Chloride atm because it was the first container i opened
I do have a larger Pot Citrate to try next
1 Teaspoon of pot Chl is approx 60 perc of daily recommended for healthy person with no kidney issues
My main points were more ,potassium can really help with the night time leg cramps , and that modern diets are terribly low in the 4700 mg Potassium recommended ( for healthy kidneys) .The Potassium to Sodium ratio is something like 4 or 5 to 1 but modern food has it reversed with Sodium being WAY higher than the required ratio the body needs to make a lot of things work correctly ie a Maccas double quater pounder with cheese alone has over 1300mg of Sodium chloride ,that alone would prolly be over the daily 5-1 ratio for sodium
we used to get a lot of our potassium from the water we drank well water creeks rivers etc now its all processed stripped clean of needed elements
This explains why sulbutiamine (a derivative of thiamine) works for fatigue in MS patients. I take 300mg in the morning and it helps.
Works for me me too. Without it my CFS returns. have you seen this? It’s a good description of the theory behind high dose thiamine. https://www.eonutrition.co.uk/post/mega-dose-thiamine-beyond-addressing-deficiency. I hadn’t heard of subbutiamine. I’ll look it up. Thanks!
T Allen
That link is very interesting. After some more searching, I have found that sulbutiamine and benfotiamine (both thiamine derivatives) have different beneficial effects, including anti-cancer. How much thiamine do you take? The link suggests 1800mg per day.
First about benfotiamine. I took it for about a year and a half while I had active CFS with no effects. I read somewhere that it didn’t cross the blood brain barrier (probably here) so switched to thiamine. In 3 days my CFS was gone! I tke 300mg/day (all at once) now. About once a week I start getting more tired and add another 100mg which seems to help. I’ve tried cutting back but I can only take 200mg for 2 days before I’m getting fatigued again. The only reason I’m not taking 4-500mg is that There seems to be a connection between thiamine and B-12. My B12 is bottom of normal on blood test and I can’t take more than a tiny piece of a tablet orally without feeling crummy & tired the next day. And, it doesn’t raise my B12 level. Injectable B12 raises my levels and doesn’t make me as tired, until at a certain point it does. It’s strange. I’ve tried every form of B12 orally. It happens if I eat beef liver too. So I’m trying to balance the thiamine and B12 until I figure this out. And it could be genetic because other people online say thiamine does nothing to help them. Also notice that per the article the thiamine needs to be taken all at once, not divided between meals. Whether it would be beneficial to take thiamine and benfotiamine together I don’t know. Sounds like another research project. 😉 thiamine metabolism pathway- look at all the complicated images. 🙂
Thanks for this, T Allen
Definitely another research project! I’m going to try thiamine myself and see what happens. I do know that sulbutiamine helps quite a bit. Maybe I’ll give them both a try at the same time. I’ll report back my results. Cheers.
I’m so glad to see this question raised, as I have been asking it myself; as far back as 2021 I asked Workwell about it and they said: ‘We are using a lactate analyzer w/ CPET for research to determine peak exercise effort. I don’t know how you would use or interpret it for daily activities. There is large variability in lactate results and it is not easy to use to evaluate AT.’ But it seems I’ve come across several things that athletes do and test for that I’ve wondered, couldn’t that be useful for us too? I’ve even wondered if lactate testing couldn’t be some kind of ‘proof’ of how ill we are. I’ve tried to explain PEM (right or wrong) as basically it’s the same thing that happens with overtraining in athletes, but because of our damaged energy systems it happens with us by doing next to nothing.
My cardiologist told me that 2day CPET isn’t the correct way to measure anaerobic threshold, that it requires measuring lactate. So I asked, ok when are you going to do that test – met with a barely suppressed smirk/laugh. I said so if I were an elite athlete it would be no problem but since I’m just a regular schmoe who just wants to be functional again, tough luck? 😉
I also wondered about a device called Lumen that measures CO2 in breath as a measure of metabolic efficiency, supposedly tells you whether you are burning carbs or fats for energy. I don’t know enough about it all to truly understand, but it made me wonder if it could be useful for telling me if I am exceeding my limits in the moment somehow, to help with pacing. Workwell didn’t see how it could be useful, and all these devices can be highly variable. They can also be very expensive, so I haven’t tried self-experimentation with them.
Thanks for the article, maybe I will give it a try at some point and see if I can make any sense of it.
Wow – this really makes me wonder how GET/CBT supporting trials managed to ignore blood lactate levels given the ME/CFS response? Not exactly esoteric or expensive to test for.
Raised lactic acid levels were discovered by researchers at Newcastle University (Australia) last century! This is what causes brain inflammation. Researchers need to find out why the anaerobic metabolism is being overused. Mitochondrial dysfunction is the likely cause. Ongoing immune upregulation caused by viruses such as Epstein Barr is the most likely cause. It’s time researchers stopped looking at the effects, and started treating the causes. Why can’t researchers find a way to stop EBV from reactivating? Companies such as Atara have developed such therapies, but seem only interested in treating cancer, etc.
My thought EXACTLY….they know sooo much about me/cfs and all its effects….it must be just as easy to dig backwards and follow the trail of destruction to its source….there must be a starting and end point….and now being able to track someone at the begginings of long covid and learn from it.
I read a paper stating that enteroviruses can interfere with mitochondrial functioning as well – so there’s another virus.
Hi Cort,
Would it help to decrease our milk consumption?
No, lactate in blood and tissue are not related to milk consumption.
That’s interesting, I know I have probability of higher levels of lactate based on my dna report on Self Decode. Even when I was fit, before I got cfs/me, it used to take me longer to recover between gym workouts. I’d need 2-3 days between workouts. Now taking a shower feels like a hard workout. I often wake up feeling like I’ve just done a weights workout. I take vitamins and minerals including b6, b12 and biotin dosages based on dna results which report I have a higher need so I shouldn’t be deficient.
Remission Biome were measuring lactate around a year ago – see #TheAcidTest on twitter.
This is the meter used in the above analysis – if in the UK its a cheaper option. And measures 5 other things too, including glucose.
https://www.amazon.co.uk/GlucoRx-X6-Multi-Functional-Monitoring-System/dp/B0B1DQ4XGY/ref=asc_df_B0B1DQ4XGY/?tag=googshopuk-21&linkCode=df0&hvadid=641718318238&hvpos=&hvnetw=g&hvrand=7363299394930520675&hvpone=&hvptwo=&hvqmt=&hvdev=m&hvdvcmdl=&hvlocint=&hvlocphy=9046068&hvtargid=pla-1930360481696&psc=1&mcid=d54b48055f783854ad0f6e431fb109f6
Hi Cort, the link from “The Edge” does not work. Can you help please? Thanks!
Ha! Amazon appears to have dropped the Edge that comes with the sticks and is now only selling the Edge without the sticks. You buy them separately. That link is still good.
Here’s the link to the Edge without the sticks – https://www.amazon.com/EDGE-Lactate-Meter-Complete-Monitor/dp/B0951BYCXF/ref=sr_1_2?dib=eyJ2IjoiMSJ9.Go8z8cR3_WyuqhkMTA_X-HqWutu3rNNRKK3n3SCY4IfGjHj071QN20LucGBJIEps.Rtq_u63yIlKvi0IENvqPerxq07KDXrv2Ai8EHQw–Vk&dib_tag=se&keywords=The+edge+blood+lactate&qid=1716343993&sr=8-2
Thanks Cort! As allways! wich sticks fit into the Edge? Or does any stick fit into it?
I should have said test strips – that’s what is needed. I imagine the Edge works by drawing a small amount of blood and then putting it on the test strips.
Here is a link to the test strips – https://www.amazon.com/EDGE-Lactate-Test-Strips-Pack/dp/B0951C2SNX/ref=sr_1_5?crid=1IOW230KK8W78&dib=eyJ2IjoiMSJ9.Z4Yba_KC_AiHk_90yM5JhGCSWjwCeAdKIcl47lrmUu91rn_RfCiikUdrGi9z8a4w-9Q9Qk12Yt3paBCm48KhzMpYxIN7cd0Mrb8Z6FzlKtw.WoPbm9ytMPgu5qz2WqqfQiii2OYPT-95Kg1pED6s8jk&dib_tag=se&keywords=the+edge+lactate+meter&qid=1716231262&sprefix=the+edge+lactat%2Caps%2C252&sr=8-5
Thank you verry much Cort! As allways…
Interesting article!!! Thank so much. I used to be a strong athlete (Windsurfing, mountain climbing, swimming) and CFS (most likely EBV triggered) has eroded my abilities over the years to the point of the long trip to the bathroom. After hitting a low point, about 1.5 years ago, I found a great deal of relief from CFS symptoms through breathwork. I have worked with David Deppler, Breathe Your Truth, who trains elite athletes. He utilizes something called a capnotrainer which measures a person’s CO2 levels. I can now elevate my CO2 which conversely helps increase blood oxygen levels through a few low cost techniques (restricted breathing, nasal breathing and mouth taping). My functionality has dramatically increased through this breathwork and resulting pacing. I have gone from 3,000 painful steps a day to an average of 11,000 well paced only moderately painful steps per day. As a result, I am much happier which helps improve everything in my life. Specifically, I would say that I am better able to emotionally regulate. I look forward to learning more about acidic blood and excess lactate and methods to support greater functionality. Until I learn specific suggestions, I will be eating more alkaline foods, hydrating well each day and maybe juicing if enough energy to chop all those veggies.
With CFS, I view every day like a marathon and I am learning to consider myself a champion. Thanks to you Cort for your dedication to producing this information. You have been a lifesaver!
Hi Jayne, Glad the breathwork is helping! Just a comment on “juicing”. There are pro’s and con’s. The maority of people do not get enough fiber in their diet. Fiber is critical to having a healthy microbiome and a healthy microbiome is critical to good physical and mental health. It’s a total waste of food to juice. Fiber doesn’t hinder the absorption of nutrients, it is the foundation for the microbes that make the nutrients available to the body. Many other reasons Not to juice. See here. https://www.healthline.com/nutrition/juicing-good-or-bad. Blessings.
Thanks T. for your concern and care about juicing. I have tried many dietary restrictions and approaches to help improve energy production over the years. And, for whatever reason, juicing has really helped me in the past. I purchased a masticating juicer and it seems less wasteful than the centrifugal ones. I enjoy celery, cuke, ginger, lemon and a small apple. It gives me a nice boost on the days I choose to chop. I can see why you would want to put some caveats in to this blog though. It does have downsides as your article link enumerates! Definitely not a panacea or cure all.
That is so good to hear, Jayne! 11,000 steps a day is great! Even if you’re not well, you’re getting enough exercise to stave off some health problems.
Low CO2 seem to be endemic in ME/CFS and I love the idea of the capnotrainer and doing breathwork to help things out. Looking forward to checking this out.
Putrino and the MEO group are using breath training as well. Be interesting to see how similar they are.
Thanks very much for sharing this 🙂
Breathing remains an interesting problem in ME/POTS patients. Too much or too little oxygen and CO2 can cause many problems. And even explain all complaints. This is a complex mechanism and also has to do with the amount of acid in the blood, for example. I won’t go into this further. But the question remains: what disrupts breathing? Is it a necessary adjustment? Or a brainstem disorder.
10,000 steps is a Myth. The American magazine The Atlantic looked for the origin of the 10,000 steps and made a surprising discovery. As it turns out, this magical number first appeared in 1964, as part of a Japanese marketing campaign. That year, the Yamasada company launched the world’s first portable pedometer in Japan. This invention was given the name manpo-kei, which literally means ‘ten thousand steps-meter’ in Japanese. The company chose this name because the Japanese character for 10,000 (万) somewhat resembled a walking stick figure. Other companies and health centers adopted this number in the following years, causing it to take on a life of its own. https://yoga-international.nu/reportage/de-mythe-van-de-10000-stappen-ontrafeld
Of course, that doesn’t mean that exercise can be good for your health. What time of day and how much you should exercise depends on your personal circumstances, there is no one fits all. In fact, for many people with certain diseases such as ME and POTS, a lot of exercise may not be healthy at all. Otherwise you wouldn’t have PEM. That is a warning from your body. There is no hard evidence that people who take 1000 steps or 11000 live longer. Perhaps people who exercise more are already healthier than people who exercise less.
Yes, breathing is sooo interesting! We can control our breathing and retrain our autonomic nervous system – can we do it to get our CO2 levels right? That is a great question because as you say low CO2 levels can produce a lot of symptoms.
Let me know Cort if you would like an introduction to David Deppler. He has studied breathwork extensively including the science and physiology. I know he believes this work could be very helpful beyond the elite athlete community, and, I can confirm how helpful this work has been for me.
Thanks again for your dedication. Your article recaps on oxygen levels in muscles and CFS led me to reach out to David 1.5 years ago. And, while I have tried and utilized many other modalities, Breathe Your Truth was a game changer for me and also doable when you are basically unable to move.
I have CFS, EDS and mito. A couple years ago I developed a problem with ongoing lactic acidosis related to the mitochondrial dysfunction. I use the edge meter to track my levels. I’ve tested it against my frequent lab work for accuracy. It tends to run .5-1.0 higher than blood work results but it’s very consistent in the difference. When my levels are above normal the trend of the results follows closely to the trend of the labwork numbers as long as I wash my hands really well prior to using (it’s sensitive to oils and residue on the hands). It’s easy to use, same process as a glucose meter. The main drawback, and it’s significant, is that it loses accuracy below 2.0, which is the top end of normal. It says it in the paperwork that comes with it and I’ve found it to be true in my use as well. For people running high normal or low abnormal, it may not give the level of accuracy desired.
Speaking of gadgets, there’s one marketed to sportspeople that you strap to your thigh to measure something that I can’t quite remember. It uses NIRS, near-infrared spectroscopy.
I believe a couple of people with CFS have tried it out. Not sure whether there have been any studies.
Maybe a muscle oxygen sensor?
Yes, that’s it! The one my friend saw mentioned is called the Moxy Monitor. She hasn’t used it, just heard about a couple of people in the US who were trying it out. I think they were interested to compare their readings to “normal” family members.
Love to find out what that is if you can remember 🙂
Continuous Lactate Monitor. I think only one is available to buy and others are coming in 2024 or soon. Here’s some that I found: BSX Insight ($299), Idro Patch (April 2024), K’Watch by PK Vitality (2024), Abbot Lingo (2024? 2028?).
Hello Cort, I asked the friend who heard about it, and it’s called a Moxy Monitor. Here is the website:
https://www.moxymonitor.com/
I hope the folk using it might see this and comment.
I’m thinking that this would be the kind of thing researchers could use to potentially measure some interesting things in conditions that involve fatigue.
For example, could someone clever use it to set up a budget version of exercise testing?
https://my.moxymonitor.com/blog/moxy-in-research-reliability-and-validity-of-the-moxy-monitor
Looks like you can rent it. $79 for 10 days.
https://www.moxymonitor.com/product/moxy-rental/
I googled “muscle oxygen sensor” and there were various results, including a product called “Humon” that mentions lactate threshold.
Here’s a 2018 article comparing some products: https://bikerumor.com/humon-hex-starts-shipping-muscle-oxygen-tracker-that-measures-in-real-time/
Very interesting. Having a couple of options on the market always helps – until they proliferate and it all gets confusing!
If finances allowed, would you be interested to try one out?
Yes I would (I’d prefer a sensor over having to prick my finger multiple times per day), and I think lactace is an issue for me. But right now I would not spend hundreds of dollars on this; also I would have cognitive trouble navigating the market (for example the Humon device seems to have been off the market in 2020 but maybe on the market again because their current website is dated 2024).
I’d rather try HRV monitoring first; and maybe first try a cheaper lactate monitor with test strips to confirm if it’s an issue at all (there’s one available in the UK which someone else mentioned in the comments, and I think in Germany there’s also a device by Roche (Accutrend Plus I believe) where the meter is available from around 130 EUR, and 25 testing strips from around 60 EUR in best value online pharmacies.
The tracking method I am most interested in trying is HRV monitoring, because it helps track stress levels, too. (For HRV monitoring, see the “Hannah” blog which Cort linked above).
Thank you for raising this topic. It is, however, exactly the other way around I’m pretty sure. Within the first 30 seconds we burn through *anaerobic* energy stores (in the muscles). It’s *aerobic* where we should produce ATP aerobically (with oxygen) that we can no longer do because the oxygen is no longer available. That is why we quickly produce lactate. (In the text it’s described the other way around which doesn’t make sense…) there is a German sports doctor explaining this really well (in German). Dr. Simon https://www.me-cfs.net/aktuelles/interview-mit-prof-simon
Yes, there is this early period where we rely on anaerobic respiration but the problems lies, as you state, when we try to rely on aerobic respiration. That’s the nub of the matter and that’s why the aerobic energy breakdown is emphasized. Thanks for clearing that up, though.
“Long COVID research advocates hammer Biden over ‘minimal funding’ in budget request ”
https://thehill.com/policy/healthcare/4682533-long-covid-advocates-hammer-biden-over-minimal-funding-in-budget-request/
Red Light Therapy causes mitrochondria to take up more glucose from the blood stream and increase metabolism.
Red Light Therapy causes decreased lactate in muscles.
Source: https://www.mitolight.com/science-effects/
Studies are linked in the page.
Je suis actuellement à ma 6ème séance de photobiomodulation et je suis partagée sur les résultats. En effet, je ressens un peu plus d’énergie le jour de la séance, mais le lendemain j’ai une sorte de PME qui dure 2 ou 3 jours. En ce qui concerne les douleurs, je ne peux pas dire car je n’en ressens pas tout le temps. Pour ce qui est du sommeil, je ne remarque pas de différence, et je n’observe pas non plus d’amélioration au niveau de l’anxiété. Je vais poursuivre les séances et j’attendrai de voir les résultats après les 12 séances.
I am currently on my 6th photobiomodulation session and I am divided on the results. Indeed, I feel a little more energy the day of the session, but the next day I have a sort of PME which lasts 2 or 3 days. As for pain, I can’t say because I don’t feel it all the time. When it comes to sleep, I don’t notice any difference, and I don’t see any improvement in anxiety either. I will continue the sessions and wait to see the results after the 12 sessions.
Claudine,
I bought the Platinum LED red light combination BIOmax 900 plus BIOmax 300 and hung them both up on the wall behind a door in the bedroom, one above the other so I can shine them on one side of my body top to bottom. At first, I could only stand 3 feet away for one minute and not get a headache.
I gradually increased the time and decreased the distance and began doing it for 3 minutes twice a day. This took one year. That was two years ago. Now I use it for 20 minutes twice a day, five minutes front, five minutes back, and five minutes on each side at 3 inches away from the light. Doing this has been a great help to me.
Platinum LED lights: https://platinumtherapylights.com/en-ca
Claudine,
J’ai acheté la combinaison de lumière rouge Platinum LED BIOmax 900 plus BIOmax 300 et je les ai accrochés au mur derrière une porte dans la chambre à coucher, l’un au-dessus de l’autre pour pouvoir les éclairer d’un côté de mon corps, de haut en bas. Au début, je ne pouvais me tenir qu’à un mètre de distance pendant une minute sans avoir mal à la tête.
J’ai progressivement augmenté la durée et diminué la distance, puis j’ai commencé à le faire pendant 3 minutes deux fois par jour. Cela a pris un an. C’était il y a deux ans. Aujourd’hui, je l’utilise pendant 20 minutes deux fois par jour, cinq minutes à l’avant, cinq minutes à l’arrière et cinq minutes de chaque côté à une distance de trois pouces de la lumière. Cette méthode m’a beaucoup aidé.
Platinum LED: https://platinumtherapylights.com/en-ca
Merci Ann,
c’est vrai que ça peut donner des céphalées, car selon une étude , la lumière rouge peut favoriser la douleur en activant les neurones qui utilisent le GABA, et la lumière verte peut avoir un effet anti douleur en activant les neurones qui utilisent le glutamate. Depuis que je fais de la photobiomodulation, lumière rouge, je me sens un peu moins fatiguée, mais bizarrement, je me sens plus mal. A voir dans le temps.
https://www.psychomedia.qc.ca/sante/2020-12-05/fibromyalgie-migraine-traitement-lumiere-verte
Thanks Ann,
it’s true that it can cause headaches, because according to a study, red light can promote pain by activating the neurons that use GABA, and green light can have an anti-pain effect by activating the neurons that use GABA. glutamate. Since I’ve been doing photobiomodulation, red light, I feel a little less tired, but strangely, I feel worse. To see over time.
I’m sorry you feel worse, Claudine. I only get a headache if I have too much red light. I hope you feel better soon.
Je suis désolé que tu te sentes moins bien, Claudine. Je n’ai mal à la tête que si j’ai trop de lumière rouge. J’espère que vous vous sentirez bientôt mieux.
I believe that this is a major reason why I find very strict heart rate pacing so effective at reducing PENE and maintaining baseline. It’s been such a game-changer for me.
I’ve been following the theory by German researcher, university professor and exercise physiologist, Professor Dr. Perikles Simon (MD). Only allowing my heart rate to go over my AT for no longer than 30sec at a time. Then resting. He thinks our muscles become hypoxic within 30sec of use. It feels consistent with what I experience.
You can read more about it here in this Google doc a fellow pwME has translated – https://docs.google.com/file/d/1JWDK9pazYo486EnjPaiXAUBFu6_l-bYc/edit?fbclid=IwZXh0bgNhZW0CMTAAAR2fRGFcRGJTP4aSuFNs3llzGOsXvQQGqGJb-3M_EzWTBNbcF5PBu8_etIA_aem_AabzThF2KAX-xIHd26QglT97iDHREjKDYwjp0Qugpz2QuSC17PjWrGqSPEXwwNSTFGGNEV0lDPFQkk8GyPDjmper
Thanks. A blog on this is coming up 🙂
Looking forward to it Cort!
I just got confirmed Covid for the second time. Once in August after attending a national convention and now in May after flying back from Seattle through a crowded airport and a crowded plane.
I did not mask because Covid had dropped out of the headlines and I assumed all was well. I also didn’t think I could get it again so soon.
Not so, on checking further, I learned that the KP.2 variant is predicted to surge after Labor Day.
I already have heart and blood pressure problems from my August Covid and can only hope the most recent infection doesn’t exacerbate those symptoms or cause new ones.
Be careful. Even if you are not well enough to leave your home, someone who visits you may be infected.
With that said, I can’t say enough good things about a service called Beeper MD. They will send a nurse to your home to check vitals; test you for Covid and other circulating viruses and take a complete health history. Then you consult with a doctor by remote and he or she will send an RX to your pharmacy. They will be back to check on me in 3 days and their service is completely covered by Medicare. They are on-call 24/7.
As I was reading your article I was wondering if a test monitoring lactic acid in the blood was the same as a lactate dehydrogenase (LDH) test. It wasn’t so clear to me after reading. After a bit of research I found that both involve different forms of lactate in the body and monitoring lactic acid is more involved with how the muscles metabolize energy (in exercise) and lactate dehydrogenase is more about how organs metabolize energy. This is terribly simplistic on my part, but an LDH test is used to detect disorders of the heart, kidney, liver or skeletal/muscles. The differences get quite complicated and chemistry is not my strong suit. Because I found this confusing, just in case others did too, I thought I’d mention it. I’m supposing that abnormal levels of either can affect function and energy.
Thanks! I wasn’t making the distinction between the two. After reading this article the correct term in the body is lactate. Here’s a good easy explanation. https://www.livestrong.com/article/470283-what-is-the-difference-between-lactic-acid-lactate/ Then there is lactic acidosis, which is high pH in the blood plus high lactate (shortened to lactic acid?) https://www.healthline.com/health/lactic-acidosis#What-is-lactic-acidosis? These 2 articles explain the basics. But now I know muscle cramps are from lactic acidosis. Thanks!