Response to Chicago Tribune article of yesterday

I would like to respond to the cautions that ended yesterday’s Chicago Tribune article by Trine Tsouderos.–20100607,0,6405426,full.story

There are dozens of antiretroviral drugs that have been brought to market for HIV. Unfortunately, only three have been shown to inhibit XMRV in vitro. The risk of taking these drugs is not that great over the short term. The only real potential dangers from the drugs are picked up with simple safety labs. Muscle wasting can occur from AZT, but it takes YEARS to develop. I know of patients who have been on AZT for 15 years who are fine. The doses of AZT used in the early days of AIDS were much higher than what is used now, leading to the scary side effect profile, but the reality is that our current regimen is quite easy to take. In my opinion the magnitude of the risk, with minimal monitoring labs, is small. It sounds to me like Dr. Sax, quoted in the article, is trying to frighten people from getting the help they need to get himself off the hook. His AIDS patients have a much better quality of life than CFS patients do. Has he ever treated even one CFS patient? I bet not. What he said is inaccurate fear mongering. He says it’s worth it with HIV because without treatment there is a horrible death. With CFS there is a horrible life. There is no playing it safe for us. This is a calculated risk, a small one at that, considering the certain alternative. If the drugs cause a significant problem, stop them. I really don’t understand the overabundance of caution. This patient group is routinely prescribed all kinds of dangerous drugs that don’t even attempt to address the cause of the illness, only aiming for symptomatic relief. I can’t tell you how many patients I have heard from who have been injured by their psychiatric medications. My daughter has had NO SIDE EFFECTS from antiretrovirals after three months. I had initial symptom flares with each drug that settled after a week or two. We are doing regular safety labs, more often than is routinely done to monitor AIDS patients, and we are just fine.

Easy for a doctor who doesn’t have a sick daughter to say this isn’t the way to proceed. If he did, he would probably be finding a friend of his to prescribe for her, not telling her she should wait for double blind placebo controlled studies and clinical trials that will take years. Every day is intolerable. There is already vast experience with the drugs. You can grow a healthy baby on AZT. Tenofovir is being studied by the CDC for prophylaxis in healthy individuals at high risk for HIV (cdc link). How toxic could it be? We are currently being monitored for problems and there are none. All drugs have potential side effects. So what? Suicide is a leading cause of death in the CFS patient group. What if the drugs work? They work for HIV, the closest human model we have.

No matter, the patients will find out the truth. All the ID docs who have refused to consider an infectious etiology for CFS will be shown to have been wrong. They have consistently refused to care for these patients, even though a viral etiology should have been obvious from the epidemiology. The CDC failed in its primary mandate. There has been a retrovirus loose in the general population for over forty years and the technology has been there to find it for a couple of decades. It is a multigenerational infectious disease that is contaminating the blood supply. New incurable XMRV infections are occurring every day while scientists and doctors play it safe. It may be much easier to develop a vaccine for this one than it has been for HIV, but that work hasn’t even begun, five years after XMRV was discovered. It is a miracle that safe drugs already exist. In my opinion, it’s crazy not to try them.

For fun, letʼs look at Kochʼs postulates with respect to XMRV and CFS.

  1. Isolate the organism from every case. The WPI has verified XMRV in 99 of 101 of the original samples from the Science paper.
  2. Propagate in pure culture in vitro. Done.
  3. Reproduce disease by injecting the organism into a suitable recipient. Accomplished in tissue culture. Also lots of epidemiological evidence for vertical transmission.
  4. Re-isolate the organism. Accomplished in tissue culture.

I don’t think that the outcome depends on finding the cause of CFS or autism. The prostate cancer research and the fact that the blood supply is contaminated will carry it forward. The in vitro testing was done for prostate cancer patients. If the drugs work, it will be patient driven. Causation may be proven clinically before the science happens. The WPI’s study hasn’t even been replicated yet!

As I have said, I don’t think the drugs we are taking are particularly dangerous. Patients all over the world are taking much more dangerous drugs that are just bandaids. The evolving treatment regimen involving the three drugs identified in the Singh paper is the first thing that ever presented itself to me that might actually arrest the disease process at its foundation. A bottom up, rather than a top down approach. Unfortunately, it’s not going to be a slam dunk. We need specific drugs. But it’s a miracle to me that there are three safe drugs already on the market that work in vitro. It is stunning to me that the government isn’t funding clinical trials nine months after the Science paper was published. In the meantime a whole new crop of sick people will continue to do the same things that don’t work or even harm. And the band played on…

In hindsight, it was obviously an infectious disease all along. It should have been apparent from the epidemiology. It will be a phenomenal teacher of the pathophysiology of human disease. It will illuminate genomics and evolutionary theory.

I see many commonalities between CFS and ASD. Autistic children have the IBS, food and chemical sensitivities, problems with heightened sensory systems and disordered processing. Also there seem to be far too many patients with CFS who have autistic children. Why aren’t the epidemiologists looking at this? For clinicians, I think ASD will be very satisfying to treat in light of this new paradigm. In my private practice, I found that autistic kids were responsive to the relatively gentle therapies I offered. I am hopeful that the ASD community will help move things along for all X+ patients. The parents that I knew in practice would have moved heaven and earth had they known what to do. I believe that this is it. Time will tell.

There have always been a few chronically ill people. But in the thirty years since I finished school, there has been an enormous increase in chronic neuroimmune illnesses. The alternative medical community has identified many of the clinical associations, metabolic and hormonal deficits, but I think most of them will turn out to be downstream effects of X. When I was a student I was taught to always look for one cause of a patient’s clinical presentation. I think X is it for so many, though it is possible that it is not the only unrecognized retrovirus out there. ME/CFS, Lyme Disease, ASD, GWS, MCS, atypical MS, various cancers, others. Disease expression is due to many factors, age of infection, genetics, concurrent infections, immunologic stressors. The scope of it is truly breathtaking.

Never forget, medicine is an art. Good science and good medicine are not at all the same thing. Inspired medicine does sometimes require a leap of faith.

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8 thoughts on “Response to Chicago Tribune article of yesterday

  1. >Great post. I think I agree with everything that you've said. It's easy to say: "don't take it, it's dangerous", when you are not the one who is suffering. Being wise means to do the right thing, not the easy one.

  2. >I could not get anyone to give me Ketoconazole (Nizoral) which has done wonders for me in the past because it "might" cause liver damage. I took it three times before, 5-6 months at a time with no change in liver enzymes yet I was told I needed Paxil or Cymbalta or some other antidepressant to get well, they will give those out like candy along with lipid reducing drugs, antihypertensives, dangerous drugs for glucose intolerance. Tell you those "approved" drugs have few side effects and then ignore the fact you are having bad effects from those drugs.

    I was willing to sign a waver absolving my doc from any responsibility, I was so desperate to find something to help. No go. Whatever happened to doing what is best for the patient and not what is dictated by guidelines?

  3. >The person who wrote this article, Dr. Deckoff-Jones, has a great deal of courage (guts). I commend her for her articulate and somewhat repetitive defense of her position – exposing the caution and supposed "fear" of others. (As Stravinksy said, "Some things need repeating.") The time for fear is past. With the current information someone has to do something. Someone out there wants to derail the connection of XMRV and CFS and it is not just a few people. This newspaper article was a terrific piece of shoddy innuendo and flimsy opinions. It was irritating to read.

    Combining various factors arrived at through thorough consideration, Dr. Deckoff-Jones is forging her own path for her and her daughter. I wish that I had her courage as I prod myself continually to do what I can for my own daughter. These disease does not encourage patience or waiting – as it has deadly consequences to the central character of the patient. Dr. Deckoff-Jones gives us a road map of where to go ourselves, to the outer reaches of possibilities and not to flinch. All these perfectionists sitting in their Ivy Towers can drop dead for all I care. I am really sick of these "caution boys (and girls), and it is pathetic that Dr. Deckoff-Jones is having to do this on her own, for the benefit of all of us. Things are moving much too slow in XMRV and somebody, somewhere is putting up roadblocks and IEDs.


  4. >Dr. Deckoff-Jones,

    Thank you!!!! This piece is amazing and so eye-opening for me! I was blown away to read about CDC doing preventive ARV therapy in the US!! Please keep speaking up for us!
    Silence = A Living Death

    -Justin Reilly

  5. >Hi, thanks for your eloquent postings.

    A quick google of HAART therapy side effects pulls up this realistic blog posting from a few years ago:

    In addition, a significant subset of lyme/ME/CFS patients are so drug intolerant, and have experienced permanent damage from seemingly benign interventions, that "side effects" is not an appropriate term. For them, damage isn't easily reversible. A woman took a homeopathic remedy and crashed, ending up in bed on oxygen 24/7, worse than she'd ever been. Another woman took an iodine supplement recommended by her doctor, and had months of heart arrhythmias resulting in constant insomnia. A woman took smallish doses of salt/vitamin C (4 grams daily) and went into some kind of cardiac decompensation that initiated heart problems that even 18 months later were just as troublesome, even though she'd immediately stopped the salt/vitamin C. For this patient population, drugs are viewed with suspicion, if not terror.

  6. >.. not to forget the macaque studies where they inoculated and within one week reached peak xmrv levels in the tissue .. or maybe that's what you were referring to.

  7. >"I see many commonalities between CFS and ASD. Autistic children have the IBS, food and chemical sensitivities, problems with heightened sensory systems and disordered processing"

    I probably would be considered as having CFS and aspergers.

    There is clearly an effort of some big power to discredit lyme disease, autism, cfs, XMRV, a very effective dietary supplement called OSR#1 Just look up all the articeles by trine of the chicago tribune and other newspapers that do the same .

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