The following quote was posted in the comments of the last blog, as Dr. Myhill paraphrasing Dr. Cheney. I am not guaranteeing the accuracy of the quote, or who said what exactly, but the ideas expressed are rampant in the ME/CFS world, and are completely illogical and incorrect in my opinion.
“Oxygen is clearly vital for efficient aerobic metabolism. It allows us as human beings to function at speed and this has massive evolutionary advantages. However, if we cannot handle oxygen this would result in massive pro-oxidant stress and we would quickly collapse and die. So what we actually do when we cannot handle oxygen is that we switch back into safe but slow anaerobic metabolism and hope that our body can repair its antioxidant defences quickly so that we can get back to normal life again. Almost certainly this is the mechanism of fatigue after any exertion whether that be the normal exertion of daily life, an acute illness, acute physical exertion, or whatever. Essentially if we cannot handle oxygen we switch back into safe, but slow anaerobic metabolism and effectively we mimic life as a foetus. As I say we have to do this because if we do not recover our antioxidant defences we die from oxygen toxicity! One example of how toxic oxygen can be – if you give 100% oxygen to a new born baby they will quickly go blind.”
The problem is not that we cannot handle oxygen, it’s that there isn’t enough oxygen getting into our cells, in particular, our mitochondria. We switch to anaerobic metabolism because the oxygen that is there gets depleted too quickly. We are unable to produce adequate ATP to sustain aerobic activity, because oxygen is required to produce it. Oxygen must reach the mitochondria of each cell from arterial blood by diffusion along a pressure gradient. With HBOT the partial pressure of oxygen is increased in the plasma. With additional pressure, oxygen, essential for life, is pushed deeper into ischemic tissues, or, more importantly for us, pushed harder into cell compartments, facilitating entry through even damaged membranes.
I did my third mild hyperbaric oxygen treatment yesterday. I breathed twice as much oxygen as normal, ~39%, instead of 21%, with pressure, the equivalent of scuba diving at ~9 feet of sea water, and I didn’t “collapse and die”:). Far from it. I felt wonderful during and after the treatment. Normobaric oxygen helps me too, but this was much more noticeable. The most obvious change was improved sleep after the second and third treatments. I have been sleeping well lately, and even dreaming, but it has gotten even better the last two nights, deeper and more restorative, with long, vivid, complex dreams, after no dreams for many years, then more anemic ones recently. I feel really good, almost well, as I write this. If I look at it in three month increments, my continued improvement is easy to see. My stress tolerance in particular is vastly improved from even a few months ago. I am not the same person I was when I began treatment for XMRV 15 months ago.
There is a tremendous amount known about oxygen toxicity, because of scuba diving. I’m rusty with the calculations, but the treatment I did is safe for many hours without any risk of oxygen toxicity. Assuming that CFS patients are more susceptible to oxygen toxicity than normal people, there is still a very large margin for error, even for the sickest patients.
Retinopathy of prematurity is often used as an example of oxygen being dangerous, not that this is in any way a good analogy of what happens with exposure to hyperoxia in anybody other than premature infants. We are not fetuses. ROP occurs only in the context of undeveloped blood vessels in the retina. Exposure to too much oxygen at that stage of development causes overgrowth of the developing vessels in the retina, a problem not seen in term infants. That doesn’t mean that premies don’t need oxygen, only that it needs to be carefully dosed, maintained at a constant level, and carefully weaned.
All of this reminds me of the mumbo jumbo always rampant in the alternative medicine world. Usually somebody gets stuck on a wrong idea and a whole bunch of people get treated with something harmless. In this case though, the wrong idea has caused a whole bunch of people not to try something that could in fact help. Actually, that’s happened before also, e.g. the Marshall Protocol’s misguided ideas about Vitamin D avoidance. I don’t mean to be hard on the alternative doctors, who have had to function as the doctors of last resort for patients with very difficult problems, practicing in a vacuum, unsupported by the rest of the medical community.
So, how to access oxygen? Oxygen requires a prescription. It can be delivered by tank or concentrator, which pulls it from the air. Here in Santa Fe, most recently I paid $15 for a tank of oxygen, out of pocket. Insurance will sometimes pay for oxygen for migraines.
The recent paper describing MRI changes in the brainstem in CFS patients supports the use of mild hyperbarics as part of an approach to treatment. A brain MRI study of chronic fatigue syndrome: evidence of brainstem dysfunction and altered homeostasis. Barnden
HBOT also requires a prescription. Hospitals charge usurious rates which are subsidized by insurance companies for a very narrow range of indications. I haven’t checked recently, but the going rate for private chambers in the US when I left practice 7 years ago was about $150 a treatment. The company I rented my chamber from, Genox, has a rent to own program. It is owned by Lance Brubaker, a Lymie scuba diver who discovered the benefits of HBOT for himself in the 90’s, first with hard, then with soft chambers. The smallest chamber, which is pretty small, but should work fine if you’re not claustrophobic, costs $6900 or $690/month for 10 months, plus the cost of a concentrator, $1500 new, or maybe $200/month. A series of 60 treatments in 2 months, and shipping both ways, comes out to about $45/treatment, to find out if it helps you. If a group shares a chamber, and the costs of training, it’s possible to make it quite inexpensive.
I’m very impressed with how simple and elegant my chamber is. I have no resistance to going in, because it is so easy and comfortable. There is always a tension running a hard shell chamber that isn’t there with this set-up. The low ambient oxygen tensions and low pressures involved minimize the risk. Following a few safety rules is all that is required. The treatment is restful, like being in a safe cocoon. The new plastic smell is gassing off quickly and then Ali will try it. Warning: Proper training is necessary. There is always an increased risk of fire when working with an enriched oxygen environment.
Although the medical care available to our fellow sufferers in the UK is largely barbaric, there is safe, extremely inexpensive HBOT available there, at least for MS, and someone who has availed themselves of the Hyperbaric Trust’s charity chambers posted in the comments that they treat other neurological disorders as well. Phillip James, MD, the founder of the Hyperbaric Trust was one of my heroes when I was in practice (link). He had done a tremendous amount of thinking about the question of oxygen and the premature retina, with respect to outcomes in cerebral palsy. I hope he is well.
It is a very sad state of affairs that something so safe and easy has been denied to patients trapped in relentless suffering, while ineffective, or harmful, pharmaceuticals are passed out like jelly beans by conventional doctors who know nothing about the disease. Eye of newt would be better than what we’ve had. Snake oil, it turns out, is good for you, very high in omega 3’s.
>I have read your posts about oxygen with great interest. Although my brainfog makes it impossible to understand everything, I think this explains why I feel so wonderful when I'm diving. Yes, it's an amazing experience in itself, but I have also thought about the effects of oxygen, especially when we have been divibg with nitrox. Diving is the only physical activity I have been able to handle well since I got sick, the hard part is getting the equipment on, but being weightless in the water is wonderful. I do only light/easy dives, don't have the strenght to swim against the current for long for example. But I feel no PEM after diving, an maybe the oxygen play a part? I will try to learn more about it.
>As with most things with ME/CFS, the tolerance of oxygen conceivably may depend on how sick people are and how much exposure to particular toxins they are getting.
For people who are only mildly or moderately currently affected, living in a reasonably good environment, oxygen conceivably could be a very good thing.
For someone who is very debilitated, living in a very moldy house in a place with very problematic outdoor air, oxygen conceivably could be a very bad thing.
It doesn't have to be one or the other. Maybe it depends on the circumstances.
Similarly, when I was living in my moldy house, even 250 mg of Famvir (a tiny dose of a mild herpes antiviral) made me scarily weak for many months after discontinuing the drug.
Eighteen months later, living in pristine conditions (good RV/tent in the Godforsaken wilderness), I was able to take a combination of 900 mg of Valcyte (a strong herpes antiviral) and 1000 mg of Famvir with almost no negative effects at all (just a little bit of mild tiredness). I benefited from these drugs substantially, I believe.
Not giving antivirals to anybody with ME/CFS because some people are harmed by them would be a suboptimal approach. But passing them out indiscriminately because I benefited from them while living in a tent in the desert is suboptimal (and — I think — dangerous) too.
Most of Cheney's patients are extremely ill. Perhaps that is why so many of them show negative reactions to oxygen (not just in terms of their heart reactions, but in how they feel) when he administers it to them.
Benefiting from relatively anaerobic conditions is counterintuitive, but it's not a concept that Cheney made up himself. For instance, here are a couple of papers from the agricultural literature about how worms react when given phosphine (a chemical that — like toxic mold — exerts most of its toxicity through oxidative stress).
Zuryn S, Kuang J, Ebert PR. Mitochondrial Modulation of Phosphine Toxicity and Resistance in Caenorhabditis elegans. Toxicological Sciences 2008 102(1):179-186. PMID: 17998274
Cheng Q, Valmas N, Reilly N, Collins PJ, Kopittke R, Ebert PR. Caenorhabditis elegans Mutants Resistant to Phosphine Toxicity Show Increased Longevity and Cross-Resistance to the Synergistic Action of Oxygen. Toxicological Sciences 73, 60-65 (2003) PMID: 12700416
In the studies, worms with a lower rate of respiration were able to withstand phosphine administration really well. Worms that used lots of oxygen died fast from the phosphine. The authors call this phenomenon "oxygen toxicity."
Conceivably, ME/CFS patients are like the worms with the low rate of respiration — able to withstand the oxidative-stress causing biotoxins, but with sluggishness and other "side effects."
Insofar as people with ME/CFS can change their environment — such as removing themselves from conditions of high biotoxin exposure — so that they can tolerate and benefit from oxygen administration, that seems like it would be a really positive step forward for them.
Insofar as they remain in toxic conditions, sticking to non-stressful supportive treatments (such as the ones that Cheney uses in his practice) conceivably may be preferable.
It would be interesting to do a systematic study on whether ME/CFS patients in good environments indeed can tolerate more interventions than those in bad environments. That would provide insights into the disease in general as well as how to treat it, perhaps.
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo
>I loved the blog post and found it helpful. I've been talking to my doc about it.
Then I come to the comment about mold. I'm so tired of the mold theory. IF mold was the cause of cfs it would be called Mold Illness. It would NOT be cfs!
Why is it that everytime I read this blog I have to put up with the mold nonsense.
Comparing people to worms? What kind of science is that? Petrison needs to take a biology class. People are not like worms. Lol.
Scott
>Here is some basic information on Caenorhabditis elegans, including its use as a "model organism" to investigate life processes basic to all kinds of animals (including humans). The use of oxygen — which is definitional for animals as a whole — is one of those basic life processes.
http://en.wikipedia.org/wiki/Caenorhabditis_elegans
No one arguing here for the importance of looking at the role of biotoxins in ME/CFS has suggested that "mold is the cause" of the illness.. I myself have stated over and over again that I do not believe that is the case.
What I am suggesting here is that the cytokine abnormalities caused by XMRV make us especially susceptible to the oxidative stress generated by toxic mold and other biotoxins, and that by removing ourselves from exposures to these toxins we can eliminate the negative effects that result.
>Am curious as to why you think your sleep was better because you remembered your dreams? I always thought it was the other way around?
>The type of vascular injury in CFS may prove to be a spectacular exception to the normal way oxygen is handled.
>Here is Sarah Myhill's summary of Paul Cheney's work on oxygen toxicity.
http://www.drmyhill.co.uk/wiki/Dr_Cheney_on_heart_function
http://www.drmyhill.co.uk/wiki/Patent_foramen_ovale_as_a_cause_of_fatigue
For those who have the time and money, subscribing to Cheney's site and watching his 2009 video presentation is thought stimulating and thus recommended.
In her summary, Myhill discusses the apparent role of various toxins in the phenomenon. She brings up pesticides, heavy metals, foods, alcohol and medications.
Unfortunately, there is no mention of toxic mold — even though toxic mold is well known to induce large amounts of oxidative stress and many ME/CFS patients (especially in England) are living in very moldy homes.
Here is a small selection of the literature showing that Stachybotrys exerts a great deal of oxidative stress, for instance.
Rakkestad KE, Skaar I, Ansteinsson VE, Solhaug A, Holme JA, Pestka JJ, Samuelsen JT, Dahlman HJ, Hongslo JK, Becher R. DNA damage and DNA damage responses in THP-1 monocytes after exposure to spores of either Stachybotrys chartarum or Aspergillus versicolor or to T-2 toxin. Toxicol Sci. 2010 May;115(1):140-55. PMID: 20150440
Markkanen Penttinen P, Pelkonen J, Tapanainen M, Mäki-Paakkanen J, Jalava PI, Hirvonen MR. Co-cultivated damp building related microbes Streptomyces californicus and Stachybotrys chartarum induce immunotoxic and genotoxic responses via oxidative stress. Inhal Toxicol. 2009 Aug;21(10):857-67. PMID: 19459771
Shimazu K, Oshima Y, Nakahata N, Yoshida M. Satratoxin H generates reactive oxygen species and lipid peroxides in PC12 cells. Biol Pharm Bull. 2008 Jun;31(6):1115-20. PMID: 18520041
Wang H, Yadav JS. Global gene expression changes underlying Stachybotrys chartarum toxin-induced apoptosis in murine alveolar macrophages: evidence of multiple signal transduction pathways. Apoptosis. 2007 Mar;12(3):535-48. PMID: 17186382
Wang H, Yadav JS. DNA damage, redox changes, and associated stress-inducible signaling events underlying the apoptosis and cytotoxicity in murine alveolar macrophage cell line MH-S by methanol-extracted Stachybotrys chartarum toxins. Toxicol Appl Pharmacol. 2006 Aug 1;214(3):297-308. PMID: 16476459
Fortunately, at least in part as a result of public discussions on forums like this one, Cheney and Myhill have both started bringing up the role of toxic mold in ME/CFS fairly regularly.
Now, if we can just get some research into the topic, we'll be making some real progress.
>I'm tired of hearing about the mold theory too. However, that doesn't make it any less relevant. I continue forcing myself to listen and learn because I continue seeing evidence that there is something to the location effect.
It's fairly obvious to me that the people telling Lisa and Erik to stop calling mold the cause of ME/CFS have never actually read what they write.
>I have to believe that no one on the planet is more tired of thinking about mold than I am.
Seriously!
>Jamie, thanks for pointing out that quote on oxygen from the last blog. I have heard it way too many times and it never made sense to me. I am an RN and have seen wounds healed with HBOT that I would not have thought possible.
I would like to try hyperbaric, but I think it would be best to try it out before investing in the equipment for home use. How many times would it take to see if it helps and what type of conditions, pressure, time, etc.?
Thanks, Ann
>I tried calling it "the effect" for many years, but without something specific, the ambiguity meant there was no starting point of anything to investigate.
People demanded something more precise.
So it was "There! That stuff!, in the carpet, in the walls… whatever it is that gets on our clothing and in our hair"
"Surely you don't mean carpeting and walls make you ill."
"No… something.. "there", growing… bacteria, mold, perhaps a mix of the two. I don't know. Help us, please, we don't know what it is."
"You're not making any sense. Mold doesn't do that"
And that's where it has stayed for 25 years.
>Lisa Petrison said…
What I am suggesting here is that the cytokine abnormalities caused by XMRV make us especially susceptible to the oxidative stress generated by toxic mold and other biotoxins, and that by removing ourselves from exposures to these toxins we can eliminate the negative effects that result.
—————————————————–
Lisa, thank you for stating this so clearly. I wish all the mold-related discussion that has taken place here recently had been this clear and unambiguous.
>Another perfect example of what always happens.
1. Susceptibility is only the result.
2. Does not imply any change in the nature of the "toxin".
3. "You're asking us to run from mold"
So… reactivity is the result of the illness and why bother to run from just one substance which has always been around?
I stated there was an "effect" that it would behoove researchers to research… and better sooner than later.
For when this stuff finally makes its presence known to you, I guarantee that you will wish more had been known about it.
>Thanks for the tip, Dr Jamie. I'm in the UK, and I googled Hyperbaric Oxygen (my town) and found that the local MS society offers this. I called them, and they have many regular ME clients. The cost? £10 a session! A small silver lining in our cloud of abuse. Needless to say, I will give it a go.
>I was just about ready to buy one of those home HBOT devices back in '97.
But the "Good Day / Bad day" effect was just so dang interesting.
With limited resources,I had a choice to make, and took a wild leap at GD/BD instead.
Now it remains for "Science" to compare the results of the Desert Dwellers against the HBOTers.
You know, just in case this information might be important, like a clue or something.