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Dr. Natelson is a rare neurologist interested in ME/CFS.
Dr. Natelson, MD, is nothing if not unusual. For one, he’s a neurologist interested in ME/CFS. (His clinic bio states, “Dr. Benjamin H. Natelson is the only neurologist on the East Coast expert in the diagnosis and care of patients with severe fatigue and/or body-wide pain for which there is no apparent medical explanation.”) Not only is he interested in ME/CFS and similar diseases, but he has been for decades and has written several books on it, including his 2007 book, “Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong.“
Natelson treats chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), and long-term COVID patients at his Pain and Fatigue Center in Mt. Sinai. In the early 2000s, he ran one of the three NIAID-funded ME/CFS research centers and, in 2013, uncovered a new form of orthostatic intolerance in ME/CFS. He was also one of seven ME/CFS physicians to participate in the Multi-site Clinical Assessment of ME/CFS (MCAM) study produced by the CDC.
He scored his first NIH ME/CFS grant in 1992 and is a rare ME/CFS researcher who has pretty consistently been able to get them. Over time, he’s co-authored over 100 papers on ME/CFS, fibromyalgia, Gulf War Illness and, most recently, long COVID.
Early on, Natelson debunked the somatization hypothesis of ME/CFS by showing a diagnosis of somatization disorder simply depended on whether one’s symptoms were coded as psychiatric or physical. With his research consistently turning up physiological abnormalities, the somatization hypothesis was dropped.
In 2007, Natelson appears to have been the first to uncover hypocapnia (low CO2 levels) in ME/CFS. His 2013 study came to the surprising conclusion that ME/CFS patients without depression had worse neurological test results, more fMRI abnormalities (usually in the frontal lobe), worse physical functioning, more spinal fluid abnormalities (white blood counts/protein concentrations), more reduced blood flows in the brain, and higher brain lactate levels than ME/CFS patients with depression.
Natelson is currently working on a large R01 NIH grant, “A Cardiovascular Analysis of Post-exertional Malaise,” and a smaller one, “Structural and Metabolic Neuroimaging of ME/CFS Occurring with and without COVID-19 Infection,” and he was eager to discuss them.
A Neurologist Gets Hooked on ME/CFS – in 1988
First, though, I wanted to know how he—a neurologist—happened to become interested in ME/CFS several decades ago, when finding a neurologist who believed in ME/CFS was like finding a needle in a haystack.
Serendipity, as it often does, played a role. Overwhelmed by the AIDS epidemic, Jim Molesky, a pediatric immunologist at Rutger University, had to give up his ME/CFS patients in the late 1980s. Dr. Natelson took over, decided “there is something going on with them,” and started collecting blood and doing analyses.
When the NIH announced that it was setting up ME/CFS Centers of Excellence in the early 90s, Natelson applied for one and got it – surprising the ME/CFS community, as he was not well known. He kept the Center until the early 2000s when the NIAID decided that ME/CFS was neither immunological nor infectious and closed the Centers.
In 2000, he moved to Mount Sinai, which he said was, “way better than the Rutgers Medical School because it’s full of people way smarter than me, and I love to be surrounded by smart people”.
Current Projects…Participants Needed!
Dr. Natelson is based in New York City. You’d think in a city of that size that, finding people with ME/CFS to participate in a study would be a cinch, but that’s not always true.
Cardiovascular Study
When he introduced Dr. Donna Mancini to ME/CFS and long COVID, Dr. Natelson brought an experienced exercise cardiologist into the mix. In their second study together ( “A Cardiovascular Analysis of Post-exertional Malaise” ), Drs. Natelson and Mancini will study the effect of two exercise stress tests on breathing patterns, fluid loss, stroke volume, and symptoms activity using a wearable device in 40 severe, 40 non-severe, and 40 matched controls.
They believe that the drop in oxygen consumption at the ventilatory threshold (VO2VT) found in the second exercise test is due to the fluid loss caused by sweating and deep rapid breathing during exercise. They’ll determine if a saline IV taken before the second test can mitigate the fluid loss and help with exercise. This is the first ME/CFS study to assess the effects of exercise on blood volume—a big deal in itself. Why blood volume has received so little attention in this disease is a mystery…
The study will also determine if ME/CFS and long COVID exhibit one of two abnormal breathing patterns during exercise. On the subject of breathing…
He and Julian Stewart were the first to find (and name) “POSH” (Postural Orthostatic Syndrome of Hyperventilation) in ME/CFS. POSH refers to overbreathing, or hyperventilation, that occurs when upright. Dr. Natelson’s 2022 study found that it was more common than any other form of orthostatic intolerance.
Overbreathing/hyperpnea/hyperventilation – whatever you want to call it – produces symptoms such as dizziness or lightheadedness, shortness of breath, abdominal bloating and belching, fatigue, feeling weak, cognitive and sleep problems, numbness and tingling sensations, muscle spasms, chest pain, and palpitations.
- Find out how to do a home (Postural Hypocapnic) hyperventilation test
The GIST
- Health Rising’s most recent “What’s Up, Doc?” talk was with Dr. Benjamin Natelson who treats chronic fatigue syndrome (ME/CFS), fibromyalgia (FM) and long-COVID patients at his Pain and Fatigue Center in Mt. Sinai.
- He’s working on 2 NIH grants and was eager to talk about them. The first one will study the effect of two exercise stress tests on breathing patterns, fluid loss, stroke volume, and symptoms activity.
- The idea is that fluid loss during the first exercise (by overbreathing/sweating) is causing a drop in oxygen consumption – and, therefore, energy output. This will be the first time anyone has measured the effect of exercise blood volume – which is notoriously low in ME/CFS. The study will also determine if one of two abnormal breathing patterns are present during exercise:
- Overbreathing produces symptoms such as dizziness or lightheadedness, shortness of breath, abdominal bloating and belching, fatigue, etc.
- Overbreathing is not necessarily fast breathing—it’s overly deep breathing that removes too much CO2 from the lungs. One way to check if you’re doing this is to stop your ears and see if you can hear yourself breathe.
- Overbreathing or hyperventilation can result from several problems suspected in ME/CFS, including dysfunctional mitochondria (resulting in increased anaerobic respiration) and an inability of cells to extract and use oxygen efficiently.
- Dr. Natelson has his patients use Contec Capnograph to measure CO2 levels as a biofeedback device.
- Note that Dr. Natelson was the first to find cases of hypocapnia in ME/CFS that were produced simply by being upright. That syndrome, which he called POSH, may be the most common form of orthostatic intolerance. Take the home (Postural Hypocapnic) hyperventilation test to see if you might have it.
- Some people with ME/CFS also produce a “funny sighing-like breathing pattern” when they exercise. Participants must live an hour or so from New York City. If you’re interested in participating, contact The Pain and Fatigue Lab at 212-844-6768 or 212-844-6665 or benjamin.natelson@mountsinai.org.
- Dr. Natelson’s Brain Study will examine oxygen uptake and glucose utilization in the brain and will help determine “whether energy failure (in the brain) is present in individuals with ME/CFS and long-COVID.”
- It will look at the sagittal sinus – a key drainage point for the brain. Problems there could produce several issues found in ME/CFS and long COVID, including toxin accumulations, neuroinflammation, increased intracranial pressure, cerebral spinal fluid leaks, and cognitive issues.
- Indeed, one case report found that a woman with a long-term case of severe ME/CFS experienced a “life-changing remission of symptoms” once stents improved fluid flows through her sagittal sinuses. Contact xiang.xu@mssm.edu about being in the study
- Brain Study #2: Another large ME/CFS and long-COVID brain study at Mt. Sinai assesses cerebral energy metabolism. The preliminary results – increased oxygen extraction in the brains of long-COVID patients – suggested that reduced brain blood flows were causing the brain to gobble up as much oxygen as it could get from the blood it had, and/or that dysfunctional mitochondria were present. Contact xiang.xu@mssm.edu if you wish to participate.
One is “overbreathing” or hyperventilating, which appears to be caused by metabolic issues. One way to check if you are overbreathing is to stop your ears and see if you can hear yourself breathe. Another symptom of overbreathing is frequent yawning or sighing. Both suggest that you are moving too much air. This is not fast breathing; it’s overly deep breathing, which causes too much CO2 to be removed from the lungs.
Overbreathing, or hyperventilation, can be caused by several things, including lactic acidosis (a drop in pH due to a buildup of lactic acid, due to anaerobic respiration), dysfunctional mitochondria (resulting in increased anaerobic respiration), and an inability of cells to extract and use oxygen efficiently, as well as some others. The overbreathing, then, can easily be explained by findings in ME/CFS; indeed, it would be expected.
Dr. Natelson said the overbreathing can be treated with biofeedback, i.e., the nervous system can be retaught how to breathe properly and avoid the low CO2 levels and the symptoms they cause. He found a device from China that is affordable (Contec Veterinary Use Capnograph $250.) and tells his patients to buy it and give it a shot. (Perhaps its approval for veterinary use is keeping the cost down.)
The first thing to measure is how fast you’re breathing. If you’re breathing more than 15x’s a minute – that’s too fast. Then you just use the machine to adjust your breathing to get your CO2 levels up to normal levels (35x or higher). He said there are all sorts of tricks to do that. There are also apps that can help with overbreathing.
A Different Cause of POTS?
Dr. Natelson noted his studies indicate that some people with ME/CFS do not overbreathe when they are lying down, but as soon as they sit up, they do. The overbreathing then turns on the heart rate—and you have POTS—but the overbreathing may come first in some cases.
He also believes that the bedrest caused by this disease is also producing dysautonomia in some people. Substantial bed rest reduces blood volume, which causes overbreathing in an attempt to get more oxygen to the tissues when standing. This then turns up the heart rate, i.e. POTS. They haven’t found a low blood volume/POTS connection in everyone, but they do in some patients.
I noted that I probably became deconditioned when I first became ill but that now I get from 7-8,000 steps a day of gentle, slow walking. Dr. Natelson called that “gentle physical conditioning”, recommended it, and suggested that people read the chapter on walking in his book “Your Symptoms Are Real: What to Do When Your Doctor Says Nothing Is Wrong”.
He recommended that everyone try the NASA lean test. He uses oral rehydration solution (Trioral), compression tights (from the ankles all the way to the waist), an abdominal binder to keep the blood from pooling there, and, if necessary, drugs.
- Find out how to do the NASA lean test here.
Breathing Issue #2: Strange Sighing Pattern
The Natelson-Cook exercise study found that some people with ME/CFS have, as he put it, a “funny sighing like breathing pattern” when they exercise. As the intensity of exercise increases, you should be bringing more and more air in, but these people would bring more air in, then dip, bring more air in, and then dip. Why this is happening they don’t know but will explore it in the study.
Participation: It’s not required, but they’re particularly looking for ME/CFS patients who have sedentary relatives to participate in the test. Anyone who lives within 50-60 miles of New York city is eligible and they’ll pay for a hotel stay.
If you are interested in participating in the study, contact The Pain and Fatigue Lab at 212-844-6768 or 212-844-6665 or benjamin.natelson@mountsinai.org.
- Dr. Natelson noted that he’s on the hunt for a junior scientist who knows about breathing to help them understand these breathing patterns.
The Brain Study
The “Structural and Metabolic Neuroimaging of ME/CFS Occurring with and without COVID-19 Infection” study will use advanced 7 Tesla MRI neuroimaging techniques to examine oxygen uptake and glucose utilization in the brain. It will also assess changes in oxygen metabolism in the venous blood of the sagittal sinus and global cerebral blood flows.
The sagittal sinus.
The sagittal sinus is where cerebral spinal fluid and interstitial fluid from the brain drain into the venous blood. As such, it could play a role in several potential problems in ME/CFS and long COVID including toxin accumulations, neuroinflammation, increased intracranial pressure, cerebral spinal fluid leaks, and cognitive issues. Any blockage or dysfunction there can contribute to neurodegenerative diseases.
Given the high rates of intracranial hypertension (high cerebral spinal fluid pressure), it wouldn’t be surprising if some patients had problems in the sagittal sinuses.
Indeed, a case report found that parts of the sagittal sinuses were narrowed in a woman in “a long and debilitating history of chronic fatigue syndrome“. This woman had borderline increased intracranial pressure, but after some cerebral spinal fluid was removed she “felt exceptionally well—headache free, less tired, and (had) reduced body pains—for 4 days before reverting to her baseline state”. Putting stents in to improve the fluid flows “brought about a life-changing remission of symptoms with no regression in 2 years of follow-up.”
The sagittal sinuses are just one of many areas where blood flows may be being interrupted in some people with these diseases.
The study won’t assess blood flows to the brain but will assess what is happening to the blood in the brain. It will allow them to determine “whether energy failure is present in individuals with ME/CFS and long-COVID.”
(This study may be (?) doing in the brain what David Systrom has been doing with his invasive exercise testing in the body: assessing oxygen levels as they enter and leave the brain to determine how much is being used up. Systrom has found that oxygen is not used up in the normal amounts by the muscles during exercise in some people with ME/CFS – resulting in reduced energy production.)
- Contact xiang.xu@mssm.edu about being in the study
The Other ME/CFS / Long-COVID Brain Study
Dr. Natelson mentioned that his co-researcher on the study, Dr. Xiang Xu, also just got a major R01 grant, “Structural and Metabolic Neuroimaging of ME/CFS Occurring with and without COVID-19 Infection“, funded by NINDS.
Dr. Xu will assess cerebral energy metabolism in people with ME/CFS, long COVID and healthy controls. Dr. Xu’s preliminary results – increased oxygen extraction in the brains of long-COVID patients – suggested that reduced brain blood flows were causing the brain to gobble up as much oxygen as it could get from the blood it had, and/or that dysfunctional mitochondria were present.
Dr. Xu will measure oxygen extraction fraction (how much oxygen is being taken up), cerebral blood flow (how much blood is present in the brain), and cerebral metabolic rate of oxygen and glucose uptake (the rate at which the brain is consuming oxygen and glucose). The brain uses 20% of the body’s oxygen, and the neurons use glucose for energy. It was great to see Dr. Xu get an ME/CFS group in there!
- Coming up – a talk with Dr. Natelson about his new vagus nerve study.
Perhaps this issue of the saggital sinus can explain why I regularly hear a squirting sound in the back of the base of my skull, when I am in bed. I hear this especially in the early morning (though not every morning), and over the years the sound has shortened but increased in intensity, as if a blockage there was gradually worsening. It sounds like fluid under pressure being squirted through a narrowed passage, probably because that’s exactly what it is.
I wonder about a cerebral spinal fluid leak?
Yes thanks I will def mention that to my Dr 🙂
Oh my goodness i’ve never heard anyone else mention this- it briefly sounds like fizzy carbonation in the back of my throat when i’m in bed! I never even mentioned it to a dr because I was sure they’d say reflux if anything, but it’s not in my throat, it’s behind it.
Very interesting, let’s maybe use the comments section to follow up and see if either of us gets anywhere with it. Lots of sub-types in ME. many paths lead to the same illness it seems, but seems like this is a part of it for at least some of it.
Yep,me too but ive been hit from behind
(Car accident) not once but twice and now have arthritis in my neck.
I also hear that sound Geoff speaks of
Comment Ich fasse es nicht, wie viele von Euch das auch haben. Ich habe das auch, wässrige blubbernde Geräusche genau oben auf dem Schädel. Habe meinen Neurologen darauf angesprochen und der meinte das könne nicht sein.
Aber ich habe jemand anders mit seinem Ohr an meinem Kopf lauschen lassen und diese Person konnte es nicht glauben, was da für “wässrige” Geräusche in meinem Kopf sind!
Und ein Teil von Euch hat das auch, ich bin total überrascht.
Habt Ihr denn auch Probleme mit der HWS? Ich habe eine atlantodentale Instabilität, vielleicht gibt es da Zusammenhänge? Das ist das erste mal seit 2010 (wo ich an ME/CFS erkrankt bin), das ich das auch von anderen Leuten höre.
Vielen Dank, dass Sie das geteilt haben. Hier muss es ein Muster geben. Vielleicht ist es eine gute Idee, wenn wir alle eine MRT zur Untersuchung unseres Sinus sagittalis anfordern? (Ich habe dafür Google Translate verwendet)
Ich habe am Dienstag einen Termin bei meinem Neurologen und werde ihn darauf ansprechen. Aber das ist keine normale MRT, oder? Die wurde bei mir schon gemacht vom Schädel. Es wurden seinerzeit erweiterte Ventrikel festgestellt.
Ich werde die Infos hier ausdrucken und meinem Neurologen zeigen, ansonsten spreche ich mit meinem Hausarzt. Natürlich werde ich Euch hier informieren. Ich suche jetzt erstmal nach dem Unterschied zwischen MRT und PET.
Habt Ihr das auch? Bei mir hinten im Rachen tropft es zwischendurch. Anfangs dachte an eine Erkältung oder so, aber es geht nicht weg. Es tropft immer wieder zwischendrin hinten in meinem Rachen runter, ich weiß nicht, was das ist.
Vielen Dank, ich bin gespannt, wie es für Sie weitergeht. Und nein, ich habe keinen Tropf. Soweit ich weiß, klingt das nach einem möglichen Austreten von Gehirn-Rückenmarks-Flüssigkeit. Noch eine Idee: Würden Sie in Betracht ziehen, Google Translate vom Deutschen ins Englische zu verwenden, damit andere hier dem Gespräch problemlos folgen können? Sie können davon profitieren. Ich wünsche dir alles Gute.
What?! I thought the squelching was just me. I feel so seen and validated. No one has ever understood what I’m experiencing with this.
Thank you for sharing!
Ah, Cort, you know blood volume is one of my pet subjects!
Blood volume measurement equipment became scarce in the 90s, with only a handful of larger hospitals maintaining the expensive nuclear medicine equipment after it was no longer needed to monitor dialysis patients.
However, that’s about to change. There is now a simple and inexpensive off-the-shelf device for hospitals or clinics to purchase:
https://detalo-health.com/
It’s been approved as a medical device in Europe, and is available to anyone around the world as a research device. Medical device approval in other countries just needs a few interested parties.
Blood volume measurement is still of value in many medical conditions, not just autonomic ones. Any large hospital would be able to put the device to good use for clinical and research work immediately.
Simple and expensive off-the-shelf blood volume analyzer? That is huge. (Daxor is really expensive., I hope some researchers read this blog and decide to use it. To me it’s one of the great mysteries in this disease.
Beste Cort, begrijp ik het nu goed dat als je bedlegerig bent ( 21-23 per dag op bed) dat het proberen om wat meer te lopen in huis, je uiteindelijk voordeel zal opleveren ondanks de uitputting daarvan?
Lieve groet van Lenny Spruijt
Hoi Lenny, dat is niet helemaal zeker, geloof ik. Maar je zou kunnen gaan pacen. Bij mij hielp het bv on te beginnen met 30 seconden in bed rechtop zitten, per dag. Langer was onmogelijk. Na een week hield ik het 1 minuut vol, dat bleek vanzelf. Deze kleine stapjes hadden effect, na 9 maanden kon ik zelfs weer buitenshuis wandelen.
Yes, it costs under US$100,000 to buy it, set it up, and train staff to use it. Any doctor, nurse or medical technician can be trained to operate it. A staff member with phlebotomy qualifications is also needed to take two vials of blood, and access to a blood gas analyser (will be in most hospitals and also found in pathology centres). Consumables are about US$1000 a year.
Not a big expense to a hospital or larger clinic.
It’s approved and available in Europe right now, for any specialists reading with a budget to spend!
Cort mentioned the Daxor system. It looked very positive a few years ago, but doesn’t seem to have caught on. It uses a radioactive tracer, similar to older machines, but has the advantage of being more automated, if I read correctly.
I don’t know how much it costs to buy one. I suspect it needs to be housed in a nuclear medicine department. The radioactive tracer (consumable) would be expensive.
Hello everyone.
I talked to my neurologist today and took him a copy of this page here, he as a neurologist found it very interesting, of course. But in Germany, PET is only available through health insurance for diagnoses related to cancer.
I will research in the next few days whether this is also possible privately and how expensive it is.
I also asked him if you couldn’t even drain liquor. Yes, that is possible, but only if there are certain reasons or diagnoses, such as hydrocephalus.
Very intersting read, I was initially diagnosed with Fibromyalgia,CFS and RLS, some 35 years ago now, way back in 1990 at the age of 40 years old. I have always experienced a very painful squelching sound and painful feeling on rubbing the base of my skull on my right-hand side of my head, directly behind my right ear and am always trying to bring some relief there by massaging, as I suffer with blocked sinuses, migraine style headeaches regularily along with annual rhinitis too. Always trialling various alternative treatments and supplents over the years to no good avail. On a quest to rud myself of “Dopamine Angonist” only last year, and getting nowhere with my current new G P here in the UK, I hapoened to come across an article written by Dr. Sarah Myhill who was discussing the benefits of “Hyperbaric Oxygen Chamber Therapy” on patients with ‘MS’ and how there are over 50 centres dotted around the UK offering this service, to MS patients and other neurological disorders with great results. On digging a little further I found 2 such centres within a 40 mile radius of me here in Plymouth, so I went ahead and attended over 20 sessions and found I found relief from my very 1st session, especially with my RLS and gaining a little more energy at times too, my only problem was that I had to attend these sessions very closely together and needed many more to see a real difference in my overall health, which unfortunately because of my severe Fibromyalgia and CFS all the travelling and sleep deprivation for many years, I just couldn’t keep up and starting feeling mire exhausted and pushing myself just all too much. Had I been able to sleep or find somewhere closer to home I was convinced this Therapy was having a huge impact on me. I tried staying locally for 4 days each week, but due to not sleeping in a reclining chair now for over 7 years and not being able to sleep in my bed or any other bed, I found this all too much and defeating the object of my positives coming from my treatment plan! So I do reckon there is a lot of truth in what this report is revealing as increased CO2 from the Hyperbaric Oxygen Chamber Therapy really did have an impact on me. The annoying thing for me, is just 10 minutes away from wgere I live our local hospital has a huge hyperbaric oxygen chamber but it is only used for deep sea divers suffering the bends and certain referred cancer patient’s and as a training centre. I recently wrote to them explaining my case to no avail, which saddened me really, so I will await to see more findings and try and mention these findings to my Haematologist when I start my iron infusions hopefully in the next few weeks, as I have now after several months of pure hell, withdrawn from these dopamine angonist and now hoping that my blood ferritin and % saturation blood panel levels will be helped to increase by these iron infusions going forward, whilst my quest to get some relief from this living hell continues, whilst I find a more natural remedy long term. I’m convinced that “Hyperbaric Oxygen Chamber Therapy Sessions” could help for many sufferers like myself moving forward if only these centres were more affordable and more locally available.
POSH seems very similar to HYCH, as described by Dr Peter Novak. I hope they can get together and chat about it!
It is isn’t it? It’s the mirror image. For people who don’t know – here’s what Novak found:
https://www.healthrising.org/blog/2022/03/10/hypocapnia-chronic-fatigue-syndrome-pots/
After linking hypocapnia to reduced blood flows to the brain in his own strange group of patients, he called the new condition “hypocapnic cerebral hypoperfusion”. Like his colleague David Systrom, Novak was being handed patients who just didn’t fit the mold. In Novak’s case, he was getting patients who had all the symptoms of POTS but who didn’t experience heart racing upon standing.
Novak had a long list of possible causes (baroreceptor problems interfering with “respiratory drive”, compensation for metabolic acidosis, orthostatic ventilation-perfusion mismatch, problems with the respiratory centers in the brain), and is digging deeper into this condition.
What device is hooked up to the wrist to measure PEM? What is it measuring?
All it says is wearable device. I assume it’s an activity monitor of some sort but don’t know. They’re trying to subset patients based on how they respond to the exertion.
I remember you, Benjy Natelson, from the NJ”Y” Camps, circa 60’s.
You are having an amazing career. XO
When he said at one point “I’m cool with that” (may not be on the interview) – I thought 60’s-70’s guy 🙂
I’ve had an improvement in my symptoms since starting atlas orthogonal treatment. I had a rotation in my atlas C1 that was blocking the vertebral artery. I literally went from being able to only walk 1/4 of a smile a day to being able to walk a mile. But I still have post exertional malaise if I exceed my safe zone of activity.
Ha! Blood flows!
I’ve thought for so many years that blood flows MUST be involved in this bunch of diseases. It’s just seemed right. They can be inhibited in so many places and we will have more blogs on that.
Jeff Woods talks about a “mechanical basis” for these disease; i.e. structural problems that produce reductions in fluid flows
https://www.healthrising.org/blog/2024/10/11/brainstem-chronic-fatigue-syndrome-mechanical-basis/
Surely this could be looked at in a study easily? Relatively inexpensive to check for vascular compression I’d imagine.
If blows my mind us patients worked out these issues like pots, blood flies, orthastic intolerance, eds mcas etc etc etc.
I’m kindve lost as to why progress is so slow to check for these issues. Any ideas sort?
I’m doing NUCCA chiro, same thing. I too feel a lot better for several days/ weeks after, until I something (usually unknown to get it out of position again. Currently snow shoveling seems to be the issue and I need another treatment after getting one last week. ;-( I am starting to be able to attribut more and more various symptoms to this issue, from thyroid, to CSF leaking, dizziness, to migrating pains. Glad you are finding relief and hope you find the key to stopping the PEM soon!
Lots of breathing apps. Does anyone know the apps referred to that help with overbreathing?
One way to check if you are overbreathing is to stop your ears and see if you can hear yourself breathe.
^So when you do this, what is supposed to happen vs. what is not supposed to happen? This is unclear.
I think it’s just supposed to be silent? It’s silent with me on inhale but can clearly hear exhale?
I’m totally confused re breathing, just found a doc who deals with sleep apnea and he has us doing exercises each night to slow down our breathing. 10 counts in, hold for 10, 10 counts out.
Sleep apnea is real and it can seriously affect the heart if not treated properly, ie; using a CPAP machine. I hope your doctor has his sleep apnea patients using CPAP machines every night. In your comment, it was unclear whether he does.
Hi Linda I wrote a more detailed reply but wouldn’t send. No I’m not currently being treated, long story but gotta get on that. Couldn’t use CPAP or mouth device. Had 14 episodes per minute but O2 sat quite low a third of the time, but was lying on back with mouth wide open, now lie on side and usually tape mouth. The report did show much better when on side but need to retest as it’s been 5 years and have put on back burner due to other stuff. I know not a place to put sleep apnea.
Habt Ihr das auch, dass bei Euch im Rachen was runter tropft? Bei mir tropft immer was von oben hinten im Rachen runter, ich habe keine Ahnung, was das sein könnte!
Hi Cort,
possibly a simple device developed for migraine therapy could help here – the rehaler:
https://www.rehaler.io/
It basically allows to set the blood pCO2 as you want – so basically it prevents low CO2 levels in the blood and thus vasoconstriction in the brain vessels.
Could possibly also be a great tool for research (imagine if one could increase cerebral blood flow intermittently, maybe that could ward off PEM after exercise – just fantasizing…
Maybe Dr. Naleson would be interested?
All the best, Herbert
Confused how biofeedback could be the fix for overbreathing if the cause is something like mitochondria dysfunction
I don’t think anyone is suggesting that reducing overbreathing can fix the cellular metabolic issues that appear to be triggering it but the low blood CO2 levels that result come with their own set of problems. I think the idea is to get the CO2 levels back to normal by regulating the breathing.
Gotcha. Appreciate all that you do Cort.
The article mentioned wearing compression tights and I remembered that Dr. Klimas had talked about this also. I bought some that are ankle length and they really helped when we went to an art festival last weekend on the only hilly part of Florida. If ordering from Amazon, try 2 different sizes since the Chinese don’t seem to have American sizing down pat. I am delighted with this simple aid but don’t know what I’ll do when we start 6 months of Florida’s hot weather.
I don’t know about over breathing, but I don’t lose fluid through exercise because I don’t sweat.
My daughter, however, is an ME/CFS patient who is always helped by a saline infusion. I have not tried that yet.
Re. low blood volume. Both my daughter and I have trouble with blood draws. In my case, the blood clots in the tube and it can take several sticks to get enough for testing. I am interested to know if anyone else has this problem.
For years drawing blood was a problem, no clotting though.
I have stiff veins, a normal needle just pushes against the vein, but can’t get in.
Always needed more than one try and big dark blue bumps as reminders.
I even had to go to a university hospital because no blood was found locally.
A baby-needle was the solution. With a small but firm push to get in. Always succesful.
Hi Cynde, Thanks for your suggestion about the bike shorts. I have ordered some today. It is already up to 87 here in Orlando.
Betty
With my POTS, compression is most necessary in the abdomen and upper legs, so in the summer I use high-waisted bike shorts. My very favorites are Cotopaxi women’s bike shorts – they are not actually marketed as compression shorts, but they compare very favorably with my other moderate compression clothes (around the 20mmHg of compression), in other words, good compression without getting into the true (and expensive) medical compression wear. I size down 2 sizes and the seams stretch enough and the fabric stays strong. Bonus, they aren’t Chinese-sized.
In the summer, I also found that compression calf sleeves for athletes seem to be cooler than other fabrics. They are easy to pull on for an activity, and pull off if I get too hot.
CraZ yoga is another brand I like on Amazon that has compression shorts and leggings. Theirs vary from light to moderate compression depending on the fabric, but some of the lighter fabrics are more tolerable in hotter weather.
Many moons ago, I always had this “weird sighing” when I exercised. I didn’t exactly feel out of breath, I just had to sigh. A doc kept trying to give me an inhaler as if I had, asthma, and I kept telling her that wasn’t it. On my labs, my CO2 was consistently low, and I also kept insisting that had to mean something, but she said it was nothing. Makes sense now.
I sighed involuntarily quite a lot in the early days of ME. After I finally saw a doctor who understood the disease, he determined that I was losing too much potassium. Supplements keep the sighing at bay.
Nothing stops the over-breathing though. I think that’s a built-in feature of the illness that comes back to Naviaux’s dauer hypothesis. Heightened state of alertness to keep the body safe from further harm etc. It is, as we say in Australia, a real bastard!
Yeah, I’ve known for my entire life that I’m a very rapid breather. But having tried various breathing exercises, none of them have worked for me. If anything they make me incredibly anxious (not great as anxiety triggers my mood episodes – I have bipolar disorder) when I am able to follow along, but at other times if I try it, its like my body just forgets how to breathe at all and I need physical assistance from another person to get me back going again. I do also have some kind of hypermobility disorder which might be connected as if I try to do the deep breaths thing sometimes a rib slips out of place. If its partially out, its harder to get my ribs to expand/contract.
So I tend to be a “shallow” but rapid breather. I say “shallow” because others comment that it sounds like I’m only using part of my lungs, but I can physically feel the air moving from the bottom of my lungs so it just sounds shallow I guess? If anything I feel I have more issues overemptying my lungs! And some of my breathing pattern seems to protect against that.
Similar thing with exercise – I get uneven breathing, one or two deeper/longer breaths which feel like remembering to breathe and then lots of rapid breaths in between. Makes the deeper/longer breaths sound more like sighing.
Most people I know IRL don’t understand what I mean about “forgetting to breathe/how to breathe” thing. Don’t suppose anyone here has had a similar experience? Its the closest words I can use for how it feels to me. I’ve tried explaining to my partner that sometimes I do have to not breathe for a bit to sort of “recalibrate” as otherwise I just get more lightheaded. Makes sense if I might happen to be low on CO2 a lot though!
It’s good that breathing patterns are being studied.
Personally, I relate more to under-breathing. Bradypnea is characterized by a respiratory rate that is slower than the typical range for adults, which is usually between 12 to 20 breaths per minute. This can also result in low oxygen/hypoxia, acidosis, fainting, etc. And guess what can cause it? HypOthyroidism, brain stem inflammation, blood clots, electrolyte imbalances, and nervous system infections… Sound familiar?
Then there’s the fact that slowed breathing can be related to slowed heart rate at rest… which can be caused by increased intracranial pressure, disorders *like* Guillain-Barré, infections and encephalitis… Things which often do not get properly ruled out.
As for blood volume, blood pools in the lower extremities when standing, reducing the amount of blood returning to the heart and subsequently decreasing blood volume circulating (and reperfusion in capillaries) through the body with POTS/dysautonomia. Reduced venous return leads to reduced cardiac output – but the issue with reduced quality circulation is less efficient circulation, that it will affect the delivery of essential nutrients and oxygen to the bone marrow – which limits the ability to produce more blood cells.
1. The bone marrow needs various nutrients, such as iron, vitamin B12, and folic acid, to produce blood cells. Reduced blood volume can impact the delivery of these nutrients. 2. The production of blood cells is regulated by hormones like erythropoietin (EPO), produced by the kidneys. Reduced blood volume can lead to decreased kidney function, affecting EPO production and subsequently blood cell production. … Reduced Blood Circulation: When there’s not enough blood circulating, the delivery of oxygen and nutrients to the bone marrow is compromised.
Impaired Bone Marrow Function: The bone marrow then struggles to produce new blood cells efficiently due to lack of nutrients and oxygen.
The vicious feedback loop is that less new blood is produced, and overall blood volume decreases further.
Reduced blood volume makes it even harder for the body to maintain proper circulation, exacerbating the issue. Generally, reduced blood volume will result in compensatory increased breathing rates……… unless someone is suffering with the issues first mentioned which could still cause a reduced breathing rate in tandem with reduced blood volume. No wonder people feel awful.
Hannah,
(and Cort)
you, Hannah, have just hit, after my 4 years of study of CFS, and then Long Covid…the nail on the head
with regard to blood volume, blood pressure , oxygenation.
PERSIST.