Access To Oxygen

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.

More Oxygen

I knew when I posted something positive about the use of oxygen for ME/CFS, I would hear about Dr. Cheney’s views on oxygen toxicity, just as I heard about his views on the use of Klonopin, when I said that I am opposed to any avoidable use of long term benzodiazepines (understanding full well that sometimes it can’t be avoided). I disagree with Dr. Cheney about a lot of things. Gasp! And agree with him about others. I am in the process of launching a Physician Working Group for the WPI and Dr. Cheney will of course be invited. It is wonderful that he and I can disagree and are going to work together to figure it out. There are going to be lots of other people who disagree with me, and each other, about many things. In fact, I’d say, there is absolutely zero chance for consensus in the group I’m putting together, but I am hoping for a melding of minds, nevertheless, for the betterment of patients. One thing I am sure of, we all want the same thing, to help people get well.

My understanding, from email communication with Dr. Cheney some time back, is that he is looking at one parameter, IVRT, of one organ, the heart, by echocardiogram, after administering low-flow oxygen by nasal cannula, as well as exposing patients to other substances in sequence. If I put an oxygen cannula on your face, at a time when you are under stress, and your IVRT, a measure of diastolic function gets worse, what does that mean? Hyperoxia causes vasoconstriction in normal tissues, so a compromised circulatory system might look worse at that moment. So what? I talked about and referenced all the reasons why repeated exposure to higher than normal amounts of inspired oxygen might be a good idea over the long haul, even if the treatment produces a few more free radicals than usual, for which antioxidants can be given. Free radicals are necessary for life, involved in intracellular killing by phagocytes and redox signaling. In hyperbaric wound care, high doses are needed to produce free radicals to kill bugs.

Dr. Cheney described a reaction to oxygen, in which patients become anxious or even obtunded, which I don’t understand. I administered very large doses of oxygen to chronic Lyme patients, who in hindsight had ME/CFS, and lots of patients with other diagnoses, including a couple of post-stroke COPDers with CO2 retention, and never saw anything like what he described, even in a very claustrophobic environment, the inside of a multiplace hyperbaric chamber, that looked kind of like a submarine (link to photos here and here of our chamber at New England Hyperbaric Center 1999). Nor did I ever see anything like that in many years of high volume emergency medicine practice, except in acutely decompensating chronic COPD patients.

The idea that the cells of ME/CFS patients utilize oxygen in such a different way from all other animal cells such that doses safe for other humans would somehow be dangerous for us seems ludicrous to me. I’ve gotten a bunch of confused mail about how ME/CFS patients have “high oxygen” already and more is toxic to them. CFS patients have normal oxygen saturation, O2 Sat, in the blood, meaning the carrying capacity of hemoglobin is normal. Oxygen travels from the arterial blood into cells by diffusion along a pressure gradient. The issue in ME/CFS is cellular hypoxia, meaning the interior of the cells are starved for oxygen and the mitochondria can’t generate ATP properly, due to poor mitochondrial function. So no gas in the tank. The mitochondria are the energy factories of the body and they are mucked up, still producing enough energy for life through the same chemical processes utilized by all eukaryotic cells, but with an inadequate supply of substrates necessary to generate ATP, and inadequate reduced glutathione to prevent damage by free radicals and other reactive oxygen species. Sometimes I wonder if it is more diabolical than gunked up machinery, that the virus doesn’t like oxygen and therefore causes the host not to be able to move. I presented the evidence in the literature for the use of oxygen in autism. Since I believe autism is essentially the same disease as ME/CFS acquired earlier in life, with the same mitochondrial problems, it seems logical to try mild HBOT for ME/CFS, especially in light of the very low risk of harm.

At the time that I left hyperbaric practice, I was worried about the possibility of an explosive decompression, a potentially lethal event, in a soft chamber, as they are not rated for hundreds of compression cycles. I was opposed to home treatment on that basis, not because of any inadequacy of the treatment. Since then, my understanding is that there have been more than 10,000 FDA approved soft chambers sold, and the thing I was fearing hasn’t happened. If they leak, they give at the zipper and don’t lose pressure suddenly. The only serious accidents have been related to modifications made to allow higher than rated pressures. There are risks, even to mild hyperbarics, and nobody should undertake it without training from a professional, but it’s not that hard, once you get the hang of the concepts.

Whatever is happening with respect to the length of diastole when oxygen is administered, it seems to me that we should be worrying more about the brain than the heart in light of the clinical course of most patients. The brain is very sensitive to ischemia. Whatever the oxygen saturation in the blood, ischemia can be present downstream of vascular spasm. That’s what I was addressing with some of the literature I posted. Not that we are having strokes, but that some of the cognitive issues may come from repeated localized ischemic insults, mini TIAs (transient ischemic attacks), during periods of vascular spasm. It seems rational to me to combat that with oxygen.

This is a blog, evolving opinion, not a statement of fact. I am sharing my thoughts, before even trying things in the present context, before proving anything. I am, however, putting my money where my mouth is, and I will continue to share our unfolding experiment in real time. I do this, not because I am trying to convince anyone that I am right. I could be wrong about anything. I am sharing my thinking as it happens, because we are in uncharted territory and there is so much suffering and desperation. None of us have years to waste. I have experience to tap in to and there is shockingly little information available when considering options. But at no time am I suggesting that anyone else should do what we are doing.

I posted our planned infusions, before knowing the outcome, as I’ve done all along with everything. Some of it for me is an attempt to learn from others, because patients and doctors write to share their experiences and ideas. We have done similar infusions in the past that were not noticeable or effective, concurrent with antibiotics for Lyme Disease. We did our first infusion of the formula I posted yesterday and we are working out the kinks with our doctor. Surprisingly, at least to me, we did feel it, Ali positively, me, not so positively thus far. I’ll let you know. I don’t want to start tweeting, but I put it out there last post thinking that it could only be positive or nothing, and I may want to reconsider that, though I still expect that any adverse effect would be mild and temporary. My sleep was disturbed last night and I was kind of wired today and not as stable as I have been. My guess is that it was from the Leucovorin, a folic acid derivative, the only component I haven’t been exposed to before. Deplin can cause similar adverse reactions which are dose related. I find it encouraging that the infusion was noticeable to both of us, but the formula needs tweaking.

As you might expect, I’ve been doing a lot of thinking about MCS these days, at least in the form that Ali is having it. I was speaking to the father of a patient today who is having severe light and sound sensitivity, much like the very severe patients in the UK and Norway. Ali is being triggered by smells, even natural smells like essential oils. My light bulb for today was that these problems are all very similar, all extremely heightened responses to different sensory stimuli. My first symptom was heightened and altered sense of taste. Many patients, and autistic children, have problems with touch, can’t stand tags in clothing, are hypersensitive to light touch, etc. I suspect it’s a kindling phenomenon, less than seizures, but similar, a little less than a full blown disease, as often happens in ME/CFS. Networks of neurons are being synchronized inappropriately by sensory triggers. Repeated stimulation leads to threshold reduction. I am not saying that biotoxins or petroleum products aren’t the trigger for some, but it doesn’t look to me like that’s what’s happening to Ali. It changes my thinking about how to approach it. If it’s a problem with detox and being unable to handle total toxic burden, one set of possible solutions, but if it’s being set off by smells, it’s the response that needs to be attenuated. I am not saying that we aren’t decontaminating and restructuring things so that she can avoid being triggered, which is a big task for an already over-taxed family, but it isn’t possible to be in the world and avoid smells. It is making me think about neurofeedback again. Another topic for another day…

The Next Step For Us

My improvement seems to be continuing, even at altitude. I had an episode six days ago that was probably a sugar reaction, not common for me anymore. I was sick for a couple of hours followed by a kind of sleep I call “coma”. Other than that, I have been remarkably stable. The travel didn’t cost me much at all. I went out for dinner with my husband last night and realized it was the first night out I’ve had in years where I just had fun without struggling at all, after working most of the day. No faking being all right or overlooking symptoms in order to appreciate the moment.

Ali has been struggling with MCS (multiple chemical sensitivity), as a new symptom cluster. She’s had little bits of it before, but nothing like this. It was triggered by an exposure to a new cat litter about a month ago. Since then other chemicals have been triggering her, especially deodorants, perfumes, laundry products. The episodes aren’t medically scary, but involve a dramatic mood shift to blacker than black, ill-defined intolerable, sick feeling. No POTS symptoms particularly, or anything else really. The odd thing to me is that otherwise, she is doing well. Not much OI (orthostatic intolerance). Baseline mood pretty good. With avoidance of the things triggering her, she actually feels fairly well and would be thinking of getting out of the house, but for now, any outings are particularly threatening and would need to be outdoors. We are dealing with eliminating the things she needs us to from the environment.

MCS is a horribly isolating symptom. It makes a hug dangerous. It affects everyone in a household in a more direct way than other symptoms. It comes with tons of psychic overlay. Easy to disbelieve. Looks psychiatric to the uninitiated. Very, very difficult to be a canary in the coal mine.

We recently ran a bunch of labs that were not particularly illuminating, other than our Vitamin D levels are still very low despite replacement. We both still have macrocytosis from AZT, but less than before, expecting it to take 6 months overall to get back to a baseline, because that’s how long it takes to replace all of your red blood cells. Neither of us have serology suggestive of activated EBV, HHV6 or CMV. I have completely negative serology for EBV, strangely given all my years in the ER. We both had high IGF-1’s at baseline, normal now. Ali’s PCOS parameters have improved on treatment (lower LH/FSH ratio), as has my blood sugar on Actos (fasting glucose from 110 to 93, non-fasting from 140 to 110). IgG subunits were normal, my IgG and IgM borderline low. C4a’s and TGF beta-1’s were lost, again; we need to have them redrawn. We’ve been planning to send cytokine and NK cell profiles, but we don’t have baselines, so I doubt that it will tell us much we don’t know.

Our baseline labs consisted of extensive hormone testing and Richie Shoemaker’s panel, which includes all of the very few tests we’ve had that were abnormal in the past, outside of TBD (tick borne disease) testing, and a few fleeting auto-antibodies; I’ve had a mildly elevated nucleolar ANA and we’ve both had mildly elevated anti-cardiolipins. TGF beta-1 was the only test we found that was very high for both of us. When I first learned of the virus, I expected that there would be a viral load measure, but it seems all we have to monitor is downstream effects.

I’ve been receiving questions about my meds. Except for stopping AZT a couple of months ago, nothing has changed significantly since I last reported. I’ve fiddled with my hormones a little. Tried natural menopause for a little while, but it wasn’t pretty, convincing me that bioidentical HRT (hormone replacement therapy) is very important for me. Here’s my current regimen, once daily unless otherwise specified:
Viread 300mg 
Isentress 400mg twice
Cozaar 100mg
Actos 15 mg twice
Deplin 7.5mg
B12 5000 units chewable
Armour thyroid 30mg for years, now 15mg
Estradiol cream 5mg
Testosterone cream 2mg
Prometrium 200mg
Selegilene .5mg cream
Low dose aspirin
Sublingual Zofran 4mg prn nausea
Topical D3 10,000 units, now increasing and adding oral
Meriva SR, undenatured whey protein, L carnitine, glutamine, ALA, Vitamin C, CoQ-10, irregularly
Specific Carbohydrate Diet yogurt, super-fermented to reduce lactose, included here because I think it is a valuable treatment in the setting of inflammatory bowel problems: Making SCD Yogurt

We are both planning to step it up again with supplements, including some we haven’t tried before. It’s a big subject. I will post about this soon.

In consultation with our family doctor, Ali and I are about to start weekly intravenous pushes consisting of a modified Meyers’ cocktail and glutathione. Here is the formula we are planning to use:
Vitamin B complex – 100
Dexpanthenol 250mg
Hydroxocobalamin 5000mcg
Pyridoxine HCL 100mg
Leucovorin (folinic acid) 10mg
Vitamin C 500mg
Magnesium Chloride 800mg
Second Push
Glutathione 2000mg

We have also decided to rent a mild hyperbaric chamber (aka soft chamber, altitude sickness or Gamow bag) and supplement with an oxygen concentrator via mask. This safe technology delivers up to 90% FiO2 (fraction inspired oxygen) at 1.3 ATA (atmospheres of pressure), by non-rebreather mask, with a 10 L/min oxygen concentrator. I’ve been meaning to write a post about oxygen for some time. Because of the observation that CFS patients have redox problems (elevated free radicals), some practitioners think that the use of even low dose oxygen, which produces free radicals during administration, is toxic in this setting. I even heard from a patient that they had been afraid to take oxygen when they were in the ER for chest pain. This seems to be completely incorrect thinking to me. Regardless of the downstream difficulties, oxygen is essential and you have to feed the stream, especially in the face of tissue hypoxia and vascular instability, a hallmark of the disease, causing local ischemia. There are too many anecdotal reports of benefit from low flow oxygen, without added pressure, during downswings, to ignore. It is a very simple, safe thing to try. Supplemental oxygen has helped me through some bad moments. I saw too many benefits from HBOT (hyperbaric oxygen therapy) in practice with related chronic conditions, including autism and chronic Lyme Disease, to dismiss it now.

Administering oxygen is one of the most powerful supportive interventions that we have. Repeated doses of hyperoxia has a salutary effect on the injured brain, whether the injury is ischemic, demyelinating or traumatic. Used therapeutically, repeated exposure to oxygen under pressure is antiinflammatory and antimicrobial. HBOT produces revascularization of ischemic tissues and may encourage mitochondrial biogenesis. Oxygen is regulated like a drug, the argument being that if the dose is high enough, it can kill you, although so can too much water. High dose oxygen can cause CNS hyperexcitability (seizures) in susceptible people. HBOT is “approved” for 13 indications that are treated in hospitals. Approved means reimburseable. Hospital hyperbaricists can be pretty territorial, but using it beyond the approved conditions is legal off-label use of a drug, like using antiretrovirals approved for HIV to treat a different retrovirus, and like the majority of prescriptions written. HBOT probably has broad applicability and nobody wants to pay for it. The technology isn’t patentable, so it hasn’t been studied and optimal dosing for various applications is largely unknown. 

The following papers provide important clues for ME/CFS. The last link will take you to slides of Dr. Rossignol’s lecture for the Autism One conference, this coming week.

Dr. Rossignol’s work seems to me to be hitting on all cylinders. He is beginning to explain why clinically there is an independent pressure effect, since the pO2 (partial pressure of oxygen) for the treatment he is using (FiO2 24% 1.3 ATA) can be reproduced with normobaric oxygen delivered by mask. He is also working on the methylation block question, and his work is suggesting that rather than, or in addition to, a conversion defect, it is yet another (in a long list) of receptor insensitivities, eg insulin, LH, Vitamin D and leptin, overrepresented in ME/CFS patients. This is beginning to get to the heart of the methylation defect. It should be remembered, that methylation is important for retroviral latency.

There are two related neuroimmune diseases with which we already have significant HBOT experience:
   Autism. I personally had wonderful experiences treating autism with low pressure HBOT. Autistic children have many of the same metabolic problems that ME/CFS patients do, including the mitochondrial defect. They have similar brain vulnerabilities as well. I treated children who demonstrated remarkable cognitive gains and improved sensory processing over a very short period of time.
   MS. In the UK there is a network of charity chambers, salvaged military chambers that aren’t rated to go to the depth required to treat wounds or acute carbon monoxide poisoning. At the time I closed my chamber, they had done more than a million treatments over a couple of decades. Their experience is completely uncontrolled. But it’s not that much fun, and people don’t keep doing it for years and years if they aren’t pretty sure it’s helping. There were a couple of studies that indicated benefit, but a negative Cochrane report shut down serious study. Also there’s a medical society, called the UHMS, controlled by the insurers, that exists to be sure nobody gets HBOT for anything but a short list of reimburseable conditions. They also want to make sure that nobody gets treated in anything but a hard chamber, declaring on their website that HBOT requires 1.4 ATA when soft chambers are only rated to go to 1.3 ATA. Rather transparent I would say.

Here is a potpourri of literature that in my opinion collectively support the use of HBOT as part of a coherent treatment strategy for ME/CFS:

We know that changing the environment, internally, externally, in this way or that, has made the difference for some people. We also know that there are many people who stay relatively well, at least well enough to function, doing nothing at all, except living their lives within the limits of their disease. I speak to many patients who have had essentially no medical care for years who describe what for ME/CFS is a pretty good course, stable with periods of very mild symptoms only. That makes it unwise to choose a therapy that might do significant harm. Or at least, save the heroics for the sickest patients. It is ironic that using extra oxygen is more questionable than prescribing dangerous drugs for symptom relief. There was a time when prescribing B12 shots was tantamount to quackery, but how many ME/CFS patients have been helped by B12 shots? Lots. When I was in practice, I was struck by how controversial it was to prescribe oxygen for an autistic child, but SSRI’s, tricyclics, benzodiazepines, speed, whatever pharmaceutical was acceptable. I was also struck by how much some patients improved just by stopping medications. When things are going south, always consider what you can stop. I can’t know of course if this next leg of the journey will help us or not, but I’m pretty sure that it won’t hurt, except in the pocketbook. I’ll keep you posted.

Community Action

I returned from Hawaii to requests to post these powerful statements of our efforts to get help and to help ourselves:

  • The WPI’s response to the Singh study. link
  • Angel Mac’s notes from her wonderful, authentic CFSAC testimony. link
  • Mindy Kitei’s moving testimony before the CFSAC. YouTube
  • Demonstration before the Department of Health and Human Services. YouTube   link to Rivka’s write-up
  • Updated healKick social networking for young adults. link

I got called on my description of myself as being at 90% by a number of people. I was foolish to attempt to quantify it. I certainly didn’t mean that I felt recovered to 90% of my baseline when I got sick in 1995; I meant that I was feeling pretty close to what I might expect of this body now, which has definitely been through the mill. I am still doing very well since returning home, even after the red eye and missing a night of sleep. I expected to feel the altitude by now and I do feel a little weaker, but I don’t feel particularly sick. More like I’ve been sick for a long time and need rehab. I can get up at will and do what I need to. I’m not short of breath, though I haven’t exerted myself like I did in Hawaii. Still sleeping well. No real physical suffering at all. Ali however continues to struggle. Nothing fair about this disease.

    The Shell Game

    The Singh paper was yet another study where an apparently decent scientist proved beyond a shadow of a doubt that she couldn’t find XMRV in anyone. Or at least that she couldn’t find a VP62 plasmid clone in any CFS patients or controls. But since she did not use a human isolate as a positive control, her results are meaningless. She also proved again that a test derived from monkey antibodies to a VP62 clone doesn’t detect anything in humans. What she didn’t prove is that XMRV and other similar viruses are not infecting humans and she certainly didn’t prove anything that doctors or patients should care about with respect to their treatment decisions. That she would presume to comment is outrageous.

    It hurts more because she seemed to be our friend. I met her in Reno last August. She was very excited by our responses to antiretrovirals, chosen because of her in vitro drug testing paper. Interesting that she was able to find XMRV in human tissue when she was studying prostate cancer in 2009 (XMRV is present in malignant prostatic epithelium and is associated with prostate cancer, especially high-grade tumors. Schlaberg/Singh). Odd that she so recently applied for a broad patent with respect to the virus. Then she stabs the WPI, a collaborator, in the back. Very peculiar behavior. My best guess? Follow the money.

    In my opinion, the scientific community is still asking the wrong questions. It is important to validate the original work of course, but that is a very small part of what needs to happen. Given that it is obvious from the pathology that we are dealing with one or more previously unrecognized retroviruses, most likely simple animal retroviruses that jumped to humans in some way, the correct question is, which virus or viruses? Not how do we make this one go away so we can all go back on coffee break, rather than recognize the public health disaster in front of our noses. Pretty poor performance, even for government work.

    Since the science is progressing glacially, it is not possible for me to evaluate what antiretrovirals are doing for me now, having taken Viread and Isentress for more than 14 months. However, I am approaching 90% of function this week, still in Hawaii. I have been out every day, most of the day, for 12 days. I went snorkeling (a little). I have walked up some steep hills. I have had no PEM. Only very brief episodes of feeling sick, which are not severe and pass quickly. I am eating, sleeping, dreaming normally. I am not short of breath at rest, or even with reasonable exertion. I am very deconditioned, but feel like I can start a measured program to get back in shape. I am choosing upright and the usual energy calculation that runs through my head when I think about whether to get up or not isn’t happening.

    I do think it likely that this latest improvement has something to do with the change in altitude; I became polycythemic when I moved to Santa Fe, which is at 7500 feet. I could exercise and was never short of breath without appropriate exertion before that. It will be interesting to see how I do when I go home this week. It may be that going back up will be good too, due to epo which is anti-inflammatory. Athletes know that going up and down is the hot ticket. I’ve been thinking about transitioning to the islands since I left in 1981, but never seemed to be able to make it happen. Our son is finishing up the 11th grade, doing really well, and we are committed to keeping our home in Santa Fe at least until he graduates. But life is full of possibilities again beyond the bed and the couch. My life has improved immeasurably from the positive XMRV culture I received from VIP Dx a year ago January.

    Sleep architecture is an important indicator of severity of illness in ME/CFS, certainly for me, but for many others as well. I had been sleeping better for some time before this trip, so the improvement I’m experiencing isn’t all from palm trees and tropical air. It is hard for me, currently beating the odds (knock on wood), to believe that antiretrovirals are hurting me. Though it is possible that I have improved further from going off AZT, I still believe that it helped me in the beginning. It should be remembered that an efficacious treatment paradigm may turn out to be completely different from what has evolved for HIV. It may be possible to take antiretrovirals for a time to knock it back, clean out reservoirs, in conjunction with other things that are conducive to proviral latency. Even inhibiting replication, provirus is sitting there silent, or waving in the breeze. Our knowledge of HIV suggests there are things we can do to encourage latency. Our observation of the disease over decades has taught us that the balance can be tipped in our favor in various ways. Working with the internal and external environments is crucial for recovery.

    As for Dr. Singh’s desire to practice clinical medicine? I guess she thinks this patient should not be allowed to continue his meds. From my email this morning:

    I tested positive for XMRV. I have been taking zidovudine, tenofovir, and raltegravir for just over 5 months. I started over a 2 1/2 month period and I was on all three by January. Since the end of January, I have experienced very short periods of unmistakable clarity and no symptoms (much more pronounced compared to any period of reduced symptoms that I may have experienced in the past twelve years that I have been ill).

    I wish I could report that Ali is doing as well as I am. She didn’t change noticeably one way or the other from stopping AZT. She is in no way as sick as she was when we started this journey. She is stable, but still just below the surface. She has been having some MCS symptoms recently. We are going to step it up again, considering mild HBOT, Meyer’s cocktail/glutathione IV’s and possibly Nexavir. Ali has inflammatory skin stuff and Nexavir is indicated for skin problems; always good if a therapeutic option addresses more than one problem. She only needs a small additional increment of improvement to be able to get a life again. She is hoping to experience Hawaii too. Neither of us would stop the things that have helped, Actos, Deplin, B12, vitamin D, bioidentical hormones. Nor do we have any inclination to stop antiretrovirals, certainly not on Dr. Singh’s say so. We have done too well on them so far to rock that boat. We need to keep building on our gains.

    Further comments from Dr. Snyderman

    Dear Dr. Deckoff-Jones:

    I would like to respond to the questions about EBV. Before I had read about retroviruses, I focused on EBV and CLL, because there were a couple or reports of EBV being found in about 25% of CLL patients. Just looking at serology is problematic as almost everyone has had an EBV infection and antibody testing is always positive. My plasma was negative for EBV DNA. A concentrate of my lymphocytes was tested at the Mayo Clinic and was also negative for EBV proteins and nucleic acid sequences.

    To anonymous commenter “anciendaze”: The point is that this specific virus (similar only to the Rauscher murine leukemia virus) was found only in malignant cells and not in normal cells. If one reads the articles, one will see that other viruses were looked at but only the Rauscher virus worked in the assays. Conversely, in breast cancer, Spiegelman found evidence of the mouse mammary tumor virus not the Rauscher virus and this work has been confirmed by multiple other labs, including very recently by Pogo and Holland. I have attached this reference (Particles Containing RNA-Instructed DNA Polymerase and Virus-Related RNA in Human Breast Cancers. Axel/Spiegelman).

    I too have read the article in which the term “rumor” viruses was first coined. That term speaks to the negativity and timidity that often accompanies a new way of looking at things. One must have an open mind, which is called for by the scientific method and not ignore data; otherwise one is guilty of holding back progress that could help thousands and thousands of patients.

    Sol Spiegelman was highly respected and was awarded a Lasker prize for his work with nucleic acids. This is often a prelude to the Nobel prize. Robert Gallo respected his work enough to pursue it. Unfortunately Spiegelman died relatively young and his laboratory closed. Robert Gallo moved on to HIV. Nothing further happened with MLRVs and thirty years was lost until the Cleveland Clinic and WPI published their studies. We, that is we cancer patients, and we CFS patients, lost thirty years and don’t want to lose any more time needlessly. Much work remains and must start now.

    Michael Snyderman, MD


    Some of the responses to Dr. Snyderman’s letter indicated that my introduction was misinterpreted by a few people, so I’d like to clarify. I didn’t say that Dr. Snyderman would be dead by now if he’d not taken arv’s. I said that he would never have gotten a chance to try them if he’d waited for the science to run it’s course, to be given permission to do what he did. His numbers, and  ALC doubling time, suggested that he should be dead about a year from now. The evidence he presented suggest that he has impacted the expected course of the disease, but it is too soon to know if his life has been prolonged. He had no prior treatment for his CLL, because he didn’t like the cost/benefit ratio.

    Several people requested references for Dr. Snyderman’s statement that the “supporting data actually goes back to the 1970s. Three different research labs including Robert Gallo’s the co-discoverer of HIV found MLRVs in many different types of lymphoma and leukemia.” Here are references he sent:

    I’d like to thank Dr. Hodgson for his considered comments, however I disagree with them in a fundamental way. If you don’t have HIV, you don’t get AIDS.  Period, end of discussion.  The retrovirus is the only meaningful biomarker. There are predictable lab abnormalities once things start to go south, like CD4 depletion, but the presence of the virus is what matters. Similarly, abnormalities of NK cell number and function may occur down the road in ME/CFS, but normal results in no way rule out the disease. Likewise there are cytokine/chemokine abnormalities, but no single signature pattern that defines the disease to the exclusion of other patterns. It would be a serious mistake and disservice to patients everywhere to define the disease narrowly based on either lab tests or symptom combinations. That would be like saying that AIDS patients with pneumocystis pneumonia have the disease, but patients with Kaposi’s sarcoma don’t.

    A complicating factor may well be the presence of more than one virus. It seems likely that different combinations of virus(es), genes, types of injury are responsible for the different presentations. It is crucial that the problem be defined in the broadest possible way. There are likely an enormous number of infected people who are a little sick, or not sick at all. These are the people who should be getting the most attention, not excluded from consideration because their NK cell and cytokine profiles are normal. And then there are the uninfected…

    I haven’t posted in ten days, and I was on such a roll for a while that I’m getting mail asking if I’m OK. Actually, I seem to be on a slow uphill course again. My sleep is especially improved lately, sleeping all night and even dreaming. The truth is, I’m in Hawaii. I needed to come here for personal reasons, but my husband and I have managed to squeeze in some vacation, our first since New Year’s 2003, when we were all still healthy, even me, relatively speaking. It’s been three years since I’ve been to sea level. I live in Santa Fe, at 7500 feet of elevation. I am much less short of breath with exertion here and hiked in a half a mile to a waterfall yesterday, with no PEM. I am sitting on a stunning beach as I write this. I have even been able to swim a little. My husband is snorkeling. I get little pangs of sadness that I can’t do it with him like I used to, but I am so happy that he can. It is amazing to me that I am here. I lived here when I was a young doctor and always imagined that I would return. I thought my life was over, but it is starting again. Who knows? Maybe the best is yet to come.

    Aloha nui loa this beautiful May Day. A hui hou.