Evidence from CPET tests shows impaired systemic oxygen extraction in me/cfs and Long Covid.

cfs since 1998

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Systrom has found small fiber neuropathy in 1/3 of patients, or 2/3 if looking at sweat glands, using skin punch biopsies.

I myself have been unable to locate objective evidence of SFN, even though I've had numbness and burning pain.

However, the nerve fibers that control blood flow are in the blood vessels, not the skin. And there is no test available in a clinical setting to measure those.

I do have a slightly low RBC, and slightly high MCH and MCV, suggesting mild macrocytic anemia. B12/folate deficiency can cause that, but my B12 and folate levels are very normal.
 

Wayne

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If the oxygen is reaching my finger tip full of capillaries, I'm assuming its not clots and gunk.

Hi @Rufous McKinney -- Here's something from ChatGPT on my mHBOT thread that was quite a shocker for me, and which may be relevant to your comment about your fingertips...

[ Many with your history (TBI + ME/CFS + Lyme + likely CCI) experience a "hypoxic phenotype"—meaning the brain behaves as if it is in low-oxygen conditions, even when blood oxygen levels seem normal on a standard pulse oximeter. ]
 

Wishful

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It's literally called myalgic encephalomyelitis.
I had, and still have at times, the perception of muscle pain. Whether that involves changes in the muscles isn't proven. LDN blocked that perception, so it could just have been false signal, or altered firing of the neurons involved.

Most ME/CFS symptoms are physical symptoms. Maybe you have something else?
Most of my symptoms seem neurological in origin. I think a lot of people's seemingly physical symptoms could have a neurological origin. Neurological dysfunction can cause physical alterations too, possibly multiple steps away, so it may not be easy to determine the actual cause of symptoms.
 

Hufsamor

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my hip flexors do weird things suggesting they are a Weak Link and where the oxygen/blood supply gets cut off first.

wonder how one could figure that out, without the help of tests and doctors.

wonder how she did that?
She had bought an apparatus from the Netherlands or Germany I think.
(Norway, with all our freedom, is not a place for unorthodox methods, while in Germany a doctor very often are educated in both ordinary doctoring and homeopathy or acupuncture)
At the time she was the only one in Norway to own one, but she said it was rather common in the country where she got her education.
It’s many years ago, so I don’t really remember, but you know those things your doctor have on your arm to measure the blood flow? The blood pressure?
And you get two numbers, one for blood pressure out and one for the pressure back.
I seem to recall it was something similar, but on my leg.
 

Wayne

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  • Lower oxygen use during peak exercise (meaning their bodies weren’t using oxygen as efficiently as they should)
  • Less oxygen extraction by the muscles (which may point to problems in how their muscles or blood vessels use oxygen)
Here's what I don't get. We now have a significant study indicating that lack of oxygen utilization or extraction appears to be a key factor in ME/CFS and Long COVID. Why aren't they saying something like, OK, let's go to town with these findings? Let's get these people extra oxygen (pronto), through HBOT or other measures, and see how they respond.

I read extensively on HBOT before I finally decided the potential benefits were worth the significant investment involved. Not only is it good for people who are healthy, but it's good for people with a very wide variety of health ailments.

As I said earlier, I wish everybody with ME/CFS or Long COVID could experience the same kind of benefit I get from literally every HBOT session. This study seems to validate my long held belief that almost everybody with ME/CFS would likely benefit from getting extra oxygen in their bodies.
 

Rufous McKinney

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So @Wayne, you're not cured by HBOT, but it helps you.

Just breathing more oxygen would not address the two bullet points. It seems like in my opinion.

Everybody Signs UP for HBOT: perhaps this is officially Financially Unrealistic. It costs too much in most countries. So it's not fixing the problem but perhaps lessons the discomforts, temporarily (since we can't be breathing that constantly). (Or under pressure)

And whenever I read about the oxygen shortage, which I feel strongly at times, especially when anything else happens to make me run down, or fighting off other germs, or sick with anything else. I have been gasping like a fish, I KNOW.

I wonder about CO2.
 

andyguitar

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Let's get these people extra oxygen (pronto), through HBOT or other measures, and see how they respond.
Getting oxygen to the place it is needed can be achieved with drugs. The problem is in determining what is stopping the oxygen from reaching where it is needed. If it's endothelial dysfunction then Nitric Oxide can be a fix. But that is not without some risk.
 

Wayne

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Getting oxygen to the place it is needed can be achieved with drugs.

I guess the word I often think of is "circumventing". It seems mHBOT is able to circumvent the normal oxygen delivery routes in the body to good effect. It does this in a healthy person to bring a lot of health benefits, and I think is especially helpful for people who are struggling with health issues. It's really kind of hard to think of any health issue that wouldn't be helped by it.

It's frustrating for me that conventional medicine doesn't think primarily in terms of effective, safe, and low-cost. I find it especially frustrating that HBOT is "approved" for so few health issues. They know it's good for many more, but insurance coverage and what not all seem to prevent this from happening.
 
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Increasing blood oxygen content doesn't necessarily increase oxygen extraction by the mitochondria; in fact, it can cause oxidative stress due to increased production of reactive oxygen species. My understanding is that one of the main mechanisms by which HBOT can be beneficial is by provoking a strong anti-oxidant response to this oxidative stress (at least for those capable of such a response; my son had a 3-4 day crash after a 90 min HBOT session).
 

Wayne

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my son had a 3-4 day crash after a 90 min HBOT session

Hi @dplaut -- I went through a period of feeling worse at one point while doing mHBOT, and attributed it to the possibility of biofilms being broken up, and releasing lots of toxins in the process. I experienced hours and days of "adjustments" as my body was going through this. Fortunately, it stopped after about 3-4 weeks. I posted about that experience fairly extensively in THIS POST. I mention coffee enemas in that post, and believe they helped me greatly in overcoming what I considered to be some of that toxicity.
 
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Wayne

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🔹 Other Agents That Improve Oxygen Utilization or Tissue Oxygenation:​

  1. Hyperbaric Oxygen Therapy (HBOT)
    Not a drug, but arguably the most direct way to increase oxygen delivery and utilization systemically. Can be life-saving in CO poisoning, gas embolism, ischemic wounds, etc.
  2. N-acetylcysteine (NAC)
    Supports glutathione production and reduces oxidative stress, which indirectly helps with mitochondrial function and oxygen utilization.
  3. Coenzyme Q10 / Ubiquinol
    Supports mitochondrial respiration. Often used in mitochondrial diseases and fatigue-related conditions.
  4. Thiamine (Vitamin B1)
    Essential for aerobic metabolism. Deficiency can lead to conditions like Wernicke’s encephalopathy or lactic acidosis due to impaired pyruvate metabolism.
  5. Dichloroacetate (DCA) (experimental)
    Activates pyruvate dehydrogenase and shifts metabolism toward aerobic respiration. Investigated in mitochondrial disorders and some cancers.
  6. Ozone therapy (controversial and not FDA-approved)
    Used in some integrative settings to improve oxygen utilization through oxidative preconditioning.
For anybody interested in some more in-depth information...

🩸 Oxygen Utilization & Hypoxia Treatment Comparison Chart​


Agent / TherapyMechanism of ActionClinical Use(s)Notes / Limitations
Methylene Blue (MB)Reduces methemoglobin to hemoglobin; electron carrier in mitochondriaMethemoglobinemia, septic shock (off-label), mitochondrial disordersFirst-line for methemoglobinemia; neuroprotective & mitochondrial support under study
Hyperbaric Oxygen (HBOT)Increases oxygen partial pressure → supersaturates blood plasma with O₂CO poisoning, gas embolism, wound healing, some infectionsNot a drug; requires chamber access; powerful systemic effect
Thiamine (Vitamin B1)Cofactor for pyruvate dehydrogenase → improves aerobic metabolismWernicke’s encephalopathy, sepsis-related lactic acidosisLow cost; crucial in alcoholics or malnourished individuals
Coenzyme Q10 / UbiquinolTransfers electrons in ETC; supports ATP productionMitochondrial diseases, heart failure, fatigueMore bioavailable as ubiquinol; safe for long-term use
N-acetylcysteine (NAC)Boosts glutathione → reduces oxidative stress → supports mitochondrial functionAcetaminophen overdose, COPD, potential for neuroprotectionAntioxidant effects help preserve oxygen utilization
Dichloroacetate (DCA)Activates pyruvate dehydrogenase → shifts metabolism from anaerobic to aerobicLactic acidosis, mitochondrial diseases (experimental)Some toxicity concerns with long-term use; not widely approved
Ozone Therapy (unapproved)Oxidative preconditioning → stimulates antioxidant enzymes, may improve oxygen deliveryClaimed for infection, fatigue, and circulation supportNot FDA-approved; controversial in conventional medicine
Riboflavin (Vitamin B2)Cofactor in FAD/FMN → supports multiple mitochondrial redox reactionsEnergy production support, some neurodegenerative conditionsOften combined with CoQ10 and magnesium in mitochondrial protocols
Meldonium (banned in sports)Modifies carnitine metabolism → optimizes energy metabolism under ischemiaUsed in Eastern Europe for angina and fatigueBanned in athletics; not approved in U.S.
 

Rufous McKinney

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Dichloroacetate (DCA) (experimental)
Activates pyruvate dehydrogenase and shifts metabolism toward aerobic respiration. Investigated in mitochondrial disorders and some cancers.
I own three very expensive jars of this. Another unlaunched N=1.

When COVID struck in Jan 2020, I read a Scientific Paper from Japan. It recommended DCA, and two other things one of which is not available in the US at all. To knock out the COVId. I saved the paper, but have never been able to locate it again. Vanished, like so much in my life vanishes.

I ordered that DCA, and put it in the cabinet.
 

Hufsamor

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I own three very expensive jars of this. Another unlaunched N=1.

When COVID struck in Jan 2020, I read a Scientific Paper from Japan. It recommended DCA, and two other things one of which is not available in the US at all. To knock out the COVId. I saved the paper, but have never been able to locate it again. Vanished, like so much in my life vanishes.

I ordered that DCA, and put it in the cabinet.
Now might be a good time to try it, in lack of a hbto, then you’ll be our n=1 :woot:
 

cfs since 1998

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From Wikipedia: Neuropathy has been a problem in some clinical trials with DCA causing them to be effectively halted,[13] but a 2008 BJC review found that it has not occurred in other DCA trials.[25] The mechanism of DCA induced neuropathy is not well understood.[26] On the one hand in vitro work with nerves has suggested a mechanism for the neuropathic effect of DCA; with DCA showing a dose and exposure dependent demyelination of nerves (stripping of the nerve 'sheath'), which demyelination was partially reversible over time, following washout of DCA.[27] On the other hand, the 2008 review in BJC [25] states "This neurotoxicity resembled the pattern of length-dependent, axonal, sensorimotor polyneuropathy without demyelination." with regard to the 2006 study by Kaufman et al.[13]

No thanks.
 
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