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.