The Treasure Hunt

I was in Reno last week. It was an honor to be there to meet Dr. Lipkin and hear about the study from the horse’s mouth. I also had the rare opportunity to listen to him brainstorm a little with Frank Ruscetti. It had a historically important feel to it. Dr. Lipkin is committed to being the perfect referee, “agnostic”, but I thought I saw the glint of desire to dive in to the discovery process. Dr. Ruscetti is a rare human being who sees his work in the context of the big picture. He is a realist, who never loses site of the patients that are the reason for the work in the first place.

The study, at a cost of $2.3 million, is designed to answer two questions:
1. Do XMRVs, and/or polytropic MLVs, exist in humans?
2. If so, do they occur at higher rates in CFS patients than healthy non-contact controls?

25 patients and 25 controls are being selected by 6 doctors, Montoya, Kamaroff, Bateman, Klimas, Levine and Peterson. Inclusion criteria are very restrictive to a particular subset of CFS that includes sore throat and lymphadenopathy. Samples will be split in Dr. Lipkin’s lab and two from each patient will be sent to 3 labs, the WPI, Lo/Alter and Switzer, where each lab gets to do their own thing. The study will be concluded to be positive if any lab can find 2 positives from the same patient. Discordant results will be decided with a third specimen.

I think we are OK, that it’s a fair playing field. The most commonly asked question in the patient community right now is with respect to the possibility of specimen tampering at points of inception. Even if that did happen at one or two sites, it would skew the stats, but wouldn’t cause the study to be completely negative. It is wrong that so much rides on one study, that nothing else will go forward until it is completed, and that one man has been made judge, jury and executioner, though I came away with the impression that he was a good choice for a difficult task.

Drs. Mikovits and Lombardi, Max, Shanti and Svetlana, have their work cut out for them, 600 specimens, each needing multiple tests. The best possible outcome for the patient community is that the WPI finds XMRVs/HGRVs at a higher rate in patients than controls, that Lo/Alter find the Ps at a higher rate in patients than controls, and that Switzer finds nothing, as expected. Dr. Lipkin mentioned more than once that, when the study is over, there will be a valuable repository of specimens remaining to look for what is there, should the study be entirely negative. At the end of his public lecture, he said that if anyone in the audience wanted to write a check for a million dollars, he’d find out what’s going on; good news, though the comment caused me pain personally, confirming what we all know, that we have the technology, but it isn’t being applied. He lectured about past virus hunts that only took days, also rather painful for this audience to hear. Almost the best news for me was that he said that CFS “smells viral” to him. He is involved in autism research and said that he suspects thimerosal in vaccines may in fact be implicated, not a popular stance with the vaccine companies. Let us hope that when this exercise is over, “the virus hunter” will be inspired to hunt viruses for us.

I had an opportunity to discuss antiretrovirals with Dr. Lipkin and to share my personal experience. He stated his disapproval vehemently. I told him that we had significant anecdotal experience at this point and it appears to be better than placebo, though disappointing in speed and scope of response. I stated my opinion that prescribing arv’s constitutes the usual and customary off-label use of drugs, a decision to be reached between doctor and patient. We obviously disagree completely in terms of whether or not the prohibition against these particular drugs is justified, but, even though he had strong feelings on the subject in the present tense, he concluded it needs to be studied, though everybody agrees that, in the current economic climate, there’s no money for what will need to be a long, complicated study. I didn’t get the impression that he was in any way discounting the possibility of a family of retroviruses with too much sequence diversity to be found when looking with our current lenses.

It was my 5th trip to Reno in 10 months. It was short, but the most stressful for me so far, maybe because it felt so important, though it was good stress, not bad, while it was happening. I felt “on”, but not anxious or consciously uncomfortable. I returned home still feeling strong. The day after I got home to Santa Fe, the Las Conchas wildfire started, now the largest in the history of the state of NM, over 100,000 acres, threatening the town of Los Alamos and Los Alamos National Labs. The air quality has been extremely poor. Here is a picture taken from our house, the night the fire started. The smoke is pluming all over Santa Fe and environs, making the air quality unacceptable for people with pulmonary disease. Mitochondrial disease too, I’d bet.

Despite lots of oxygen, which helps everything during administration and for a while after, I’ve been in crash mode for six days now. First time I’ve gone down for more than a day since December, when I caught a cold after my second trip. No cold now; just CFS. I don’t like to report bad news if it takes away hope, but my commitment is to reporting the truth. Sleep, always a sentinel symptom for me, was the first to go. Then pain, nausea and orthostatic intolerance have put a serious damper on things. Cognition is the last to go for me, thanking God for the not small favor. Clearly, I am still at risk, despite dramatic improvement over the last year.

Ali has been doing better since starting Meyer’s cocktail with Leucovorin, plus glutathione, IV pushes and supplemental oxygen by high flow concentrator (10L/min delivered by non-rebreather mask). She does an hour or so of oxygen a day, and the effects are so immediate and positive that she doesn’t have any resistance to doing it. At this point, we both consider the concentrator a no-brainer. She hasn’t tried the chamber yet. I’ve been going in about twice per week and using normobaric oxygen by mask about twice a week as well, and I haven’t decided yet whether I think the chamber adds enough to justify the expense/trouble or not. Ali had a friend visit her for 10 days recently. She used supplemental oxygen ad lib the whole time, was much more active than she has been able to be since last fall, and didn’t crash afterwards. She remains more resilient, despite the fire. She is wanting to get out of the house and just ordered some protective masks that she hasn’t tried yet, which people are wearing in Santa Fe now anyway.

Ali’s MCS symptoms are subsiding somewhat and, if not triggered, she is doing really well. She can wear clothes from the dryer again, though choice of laundry products is crucial. She and I both believe that her symptoms are not triggered by chemicals per se, but certain strong odors, so hyperosmia, much the way some patients have hyperacusis and photophobia, which are also cranial nerve dysfunctions. I believe these sensory symptoms to be related to dysregulation of the cranial nerve afferants, which are relayed through nuclei in the dorsal brain stem, and then to the thalamus, which integrates sensory information to the cortex, regulates arousal/sleep and organizes/controls the timing of the brain’s circuitry. The heightened signal triggers what can be thought of for practical purposes as a subclinical seizure. For some, the instabilities in the brain stem can progress to observable atypical seizures or even full blown tonic-clonic seizures. Here is a study by Frank Duffy at Harvard showing coherence abnormalities on QEEG (measured on the cortex), in patients with CFS, not seen in depressed patients: EEG spectral coherence data distinguish chronic fatigue syndrome patients from healthy controls and depressed patients. Duffy/Kamaroff. Inability to detox properly is likely a piece too, but in Ali’s case, I think that the reactive dysautonomia is triggered by input from the first cranial nerve, rather than a reaction to a toxic substance.

I leave for Hawaii later this week to see patients, looking forward to sea level and clean air. My patients all know I’m sick. When I hear their histories, I often remember exactly how that symptom felt to me, even though my illness has changed a great deal as it has progressed. They know that I don’t have the answer and that I don’t believe there will be a cure. Healing and curing are not the same thing. What we do have to fight with is a coherent model from which to plan a strategy for each person from where they are now. It will be two years soon since Lombardi et al was published; it has been nearly shot down by politics, not science, and  nothing has changed from a treatment point of view, other than antiretrovirals haven’t turned out to be the slam dunk for anyone, including me, that we needed. Of course there are hundreds or thousands of drugs sitting on pharmaceutical company shelves right now that might work, but so far, nobody is looking.

Despite my disappointment (not surprise) that the science is not keeping up with the medical need, I remain hopeful and determined. It won’t be fast enough, but I do believe they will get it right this time, even if the route is circuitous. The scope of the discovery is spectacular in terms of the impact it will have on our understanding of chronic disease. It will transform many fields of medicine, but especially psychiatry, which still views our symptoms as arising from a defect of character. We are the ultimate mind body experiment, and it’s not about character, or lack thereof, that our psyches are too closely linked to soma, the body. There is a biological basis. Heightened senses come with the territory. The misunderstanding, even derision, from our supposed caregivers has caused great harm. It is one of the most painful truths in my life that should I be forced to seek help from my colleagues in the conventional medical world, they will likely laugh at me, not to mention do the wrong thing. But there is redemption in turning suffering into meaning, in using painful experience to become wiser. The disbelief has caused terrible isolation. Healing, separate from curing, is possible, in connection with the truth, and in connection with other people who understand and care.

*    *    *

We must never forget that we may also find meaning in life even when confronted with a hopeless situation, when facing a fate that cannot be changed.  For what then matters is to bear witness to the uniquely human potential at its best, which is to transform a personal tragedy into triumph, to turn one’s predicament into a human achievement.  When we are no longer able to change a situation- we are challenged to change ourselves…
~ Viktor Frankl in Man’s Search for Meaning

Did you like this? Share it:

128 thoughts on “The Treasure Hunt

  1. >Dr Jamie Deckoff is a truthteller- and such may be what Lipkin hoped would occur –the transmission of his "belief" to our community- the building of trust and shared ideology…

    Did anyone consider that Lipkin was either lying or spinning when he commented on thimerosal? As I've said before watch his videos from years ago – his job is to spin this XMRV into nonexistence. How better to gain trust with us and the autism community then to feign allegiance with mercury implications in causation of disease.

  2. >No anonymous 4:08 AM — Lipkin stated in an email that he never made the comment about the thimerosol. Deckoff-Jones either misheard him, misquoted him or made it up. Either way, since this is a public blog, her errors should be corrected.

    Is it possible to spin something into non-existence that may not be there in the first place. I think Lipkin is trying to settle an age old question — well, since 2009 anyways.

  3. >I had dinner with Dr. Lipkin in a small group, attended a small scientific round table and the lecture. My recollection was that the comment was made during the lecture, but I could be mistaken. I think the context was that although the studies had been negative, he thought there might still be an association. If anyone else heard it, please chime in. If I got it wrong, I apologize.

    This is not investigative journalism. I reported what I remember. I didn't feel the need to double check. In general, a blog forms in my head. I sit down, write it, reread it a couple of times and post it. I don't have the time to check everything as if I were a reporter. I will have even less time going forward now that I am in practice again. I write to share, not to convince. I don't care if anyone agrees with me. I like the debate. I don't however appreciate the personal attacks. Nobody has to read. I continue, because I have made many wonderful friends and been made to feel that it helps.


  4. >Dr. Jamie, We all make mistakes as we are only human. You don't have to go into a long explanation as that makes you look defensive.

    I know you consider this a personal blog but it's hard to sort out where your blog ends and the WPI ends. Especially in light of such blogs as FAQ about the WPI.

    So just say you misinterpreted, whatever or don't say anything and we can move on.

    I'm just trying to put into context why some of us reacted negatively to what you reported Lipkin said.

    It wasn't a personal "attack" but some of the posters who are supposedly defending you made a bad situation worse by making it seem like we were.

    They mean well but when they support people not on merit but by perception, their idiocy is associated with the person they are defending.

  5. >Another possibility is that Prof. Lipkin is the source of confusion, saying one thing in a conversation and then denying it in an email, which looks like what happened on Prof. Racianello's blog on May 6th. In an email to Prof. R., which was the subject of the blog, he said that he was 'agnostic' about whether XMRV was associated with ME and that the only contribution of Singh's study was more confusion, so a much more definitive study was needed. Prof. R. commented that in an oral conversation with Lipkin, that Lipkin said, inter alia, that there was no confusion among scientists about what the Singh study "meant." Lipkin's remarks, as reported by Racianello, seemed to imply that scientists all knew that XMRV was not associated with ME.

    one more question: I am underwhelmed at the study design. This is what this supposed genius to end all geniuses came up with as the study to end all studies on ME and HGRVs? To Fauci and the other spinmasters, this study may be intended to literally end all studies, but there are possible outcomes from this study that will not end the controversy.

    Why not spend the $2.3M on the tests that Lipkin does to isolate all the pathogens in a disease? He said he could solve all this for $1M. Why didn't he just 'deep' sequence XMRV?

  6. >@ Justine.

    Oh for cripes sake. You are just making this worse for Dr. Jamie.

  7. >Anonymous 11:09AM,

    I believe someone called me a liar a while back…

    The blurred boundary between my opinions and the WPI is a problem. I do the best I can with it. They don't endorse my blog, or see it before I post, but haven't fired me either…

    Justin, about the money. I don't know all about allocation of the funds. It seems like a lot to me for what they are doing, but what do I know? The doctors get quite a bit for referring patients. My understanding is that the labs get costs. I think the university gets some customarily, but I don't really know. I think the main thing is that they are spending the money. They could have pulled the plug with all the recent negativity, but didn't. I think we all owe Dr. Lipkin a debt of gratitude for that. And I'd prefer that someone tell him I said that rather than that I misquoted him.


  8. >Jamie, please keep blogging. You are filling a vacuum when it comes to information on ME and current events. I always look for your blogs. You speak with a ring of truth.

    Some want to shut you up because of xmrv. Please don't let them.


  9. >@ Ann
    "Some want to shut you up because of xmrv."

    How silly. The world is not as black and white as you protray it.

    All these conspiracy theories when events that happened with the CDC, medical community are the bane of bureaucracy and based on the information the medical community had at the time. Hindsight is 20/20.

    Ever hear of Occam's razor?

    This could have been settled quicker if only alter/lo had run a blast. But patient groups wanted the study published before he could do that. Look what happened. :>(

    I don't understand why people are clutching at a hope that most likely not come true. But I will keep an open mind and wait for the Lipkin/BWG but it's not looking good for the later as far as XMRV.

    Focus on the fact that the WPI could be working on other theories which I believe they are/will be doing.

    I am a patient and frankly I am tired of the wasted years going after XMRV. Read the science.You people do not represent this patient as well as others. You are in the minority.

    As an advocate, I will continue to correct your misinformation wherever and whenever I can. If Dr. Jamie chooses to delete these posts, it's her prerogative. It's her blog.

    There are several blogs that will be coming out shortly from patients who are fed up with the me/cfs forum and their echo chamber reasoning.

    @ Dr. Jamie.

    Dr. Jamie, I am sorry someone called you a liar. Many of the people who have written in the comments of your blog are the first to slander other's who do not hold their view. It's poor form coming from either side.

    Be well.


    "Patricia said…
    Gerwyn, why don't you tell everyone how you improved by 80% with b12 injections?

    July 3, 2011 3:13 PM
    Gerwyn said…
    well it was a little more than that

    the myers cocktail started the recovery and a range of mito suppliments iv magnesium etc."



  11. >>
    All these conspiracy theories when events that happened with the CDC, medical community are the bane of bureaucracy and based on the information the medical community had at the time. Hindsight is 20/20.

    The only "conspiracy theory"……. is the misinformed belief that there WAS none.

  12. >I'm standing up as yet another patient in support of Dr. Jamie's blog, which gives us good insights and info we'd not otherwise have. And I'm yet another patient not in support of harsh lingo, here or anywhere in our community, like saying "liar" and "duh!" Aren't there more constructive ways to talk to each other and make our points? (Yes, there are.)

    If Dr. Jamie did misquote Lipkin (and I don't know that she did, as I have not watched the video), that was not her lying. Lying is intentionally trying to spread false info. I trust her a heck of a lot more than that.


  13. >Dr. Deckoff-Jones,

    Thanks for your candid response. I agree that the important thing is that NIH is still spending the money on a study. It is good that the University will get some money, imo, since it seems they have done a good deal to contribute to WPI getting established.

  14. >Thank you for doing your blog, Dr. Deckoff-Jones. I just want you to know that I appreciate you sharing your experiences with antiretrovirals and your special knowledge as a physician. I honestly believe that there really is no confusion between what is your personal opinion and what is factual information about the Whittemore Peterson Institute. If it does exist, I think it exists only in the minds of people who want it to exist. Those people, I fear, do not want us to hear your wise and compassionate voice. This saddens me. You have brought so much comfort and so much understanding to me in your blog that I am forever grateful. Please do not listen to these detractors. They are not trying to help sufferers. You are. Please know that you are helping and that many people are most grateful, including me.

    Patricia Carter

  15. >That's sweet Patricia. BTW, are you taking antiretrovirals, and if not, why not?

  16. >I agree with Ann, Erik, Patricia and many others.

    When I read comments from this blog, and I get wind of who I call "Sadistic Anonymous", I stop reading and go to the next comment. I have no desire to read anything from this individual much less respond to it. SA is trying to divide us, and we can't allow that to happen.

    We support you, Dr. Jaime. Don't ever doubt our committment and gratitude for this blog.

  17. >Trust, but verify

    Trust, but verify was a signature phrase adopted and made famous by U.S. president Ronald Reagan. Reagan frequently used it when discussing U.S. relations with the Soviet Union. Reagan rightly presented it as a translation of the Russian proverb "doveryai, no proveryai" (Russian: Доверяй, но проверяй). Soviet revolutionary Vladmir Lenin also frequently used the phrase.
    After Reagan used the phrase at the signing of the INF Treaty, his counterpart Mikhail Gorbachev responded: "You repeat that at every meeting," to which Reagan answered "I like it.",_but_verify

  18. >From the transcript by XMRV Global Advocacy, here is the exact Lipkin "smell" quote from the WPI presentation:

    Q:  Now that you've said this, do you feel that this is something that you suspect the agent of being viral?
     A:  The thing is, to the guy who's holding a hammer, everything looks like a nail.  So, you know, I'm a virologist.  So it looks to me like a virus.  But I also  like, I mean, I also work with bacteria and fungi  too.  But it smells more like a viral infection.  But it would not at all surprise me  if it were a common viral infection to which people had an uncommon response. There are all kinds of models, but what we prefer to do is to see whether or not there's a consistent finding, you know, in some subset of people.

    Like Harvey Alter (and just about all the other viral researchers looking at this disease), he seems to be expressing doubts about whether any virus is the underlying cause of the disease regardless of whether it is present in some or all sufferers.

    I’ve yet to read much explicit rationale for these folks' doubts, but here are a couple of possibilities.

    The first that generally when an illness is caused by a virus, it’s possible with not too much effort to trace how it’s spread. With CFS, it doesn’t seem to be spread consistently through sex, or casually, or even blood. The vast majority of people who are exposed to CFS sufferers (or their blood) do not get the disease, even decades later.

    The only suggestions that this disease might be contagious are family clusters and “town/building clusters” (such as Truckee High School). Conceivably the family clusters could suggest mother-child transmission, except that we also see father-child, spouse-spouse and (I believe) owner-pet concurrencies. This is not the pattern of a contagious pathogen. It’s much more consistent with the idea of a shared environmental exposure making people more susceptible to catching pathogens (or having them activate), along with perhaps shared genetic susceptibility.

    In certain towns (and especially in certain buildings in those towns), the disease seems to spread like wildfire. In other places, it does not spread much at all. This, again, is not consistent with the idea that a virus is driving the disease. The idea that a toxic exposure in these places is making people susceptible to pathogens (leading to an “uncommon response”) makes much more sense.

    The other obvious rationale is the diversity of courses that this disease takes. Insofar as viruses cause illness, they tend to have a fairly predictable course. (AIDS certainly does, for instance.) CFS, on the other hand, has a very unpredictable course. Two people with the exact same symptoms/tests during the first year may have very different life experiences thereafter — some deteriorating rapidly, others remaining stable or almost recovering. Treatment response varies as well.

    That’s much more consistent with how an environmental toxin works — with some people being mildly exposed and others being severely exposed. Think Hiroshima, for instance.

    It’s hard if you’re a virologist (or, in our society, any medical researcher or doctor) to seriously consider the idea that the main cause of the illness could be that people are being poisoned, and that this is causing specific pathogens (including some particularly nasty ones) to activate. It’s been less than 150 years since we’ve started really polluting our planet, and idea that the crap in our environments could be causing illness has yet to take root. Paradigm shifts take time.

    The idea that this is a toxin-driven rather than pathogen-driven illness seems more epidemiologically consistent with the evidence though.

    I’m glad to hear that Lipkin at least at one point seriously considered the idea that mercury could be related to autism, therefore. That sort of open-minded thinking is a start anyway.


    Lisa Petrison

    lisapetrison at yahoo

  19. >"I’m glad to hear that Lipkin at least at one point seriously considered the idea that mercury could be related to autism, therefore. That sort of open-minded thinking is a start anyway."

    This is absolutely not true. I was afraid this might happen.

    Dr. Deckoff Jones needs to clarify that her statement was not accurate as this misconception gets repeated until it gains acceptance.

    The same with the studies by Lipkin. His hypothesis was not that mercury/thermasil was related to Autism. His hypothesis was that this needed to be investigated as there was a paltry of evidence.

    Laurie B.

  20. >Lisa Petrison

    There is only one pathogen that can cause the symptoms and range of disease and that is a retrovirus. I really don't know where you get the idea it can be anything else.

    The immune profile found by certain labs is also consistent with them having an entirely different cohort to Canadian criteria ME/CFS.

  21. >Lisa went back to "Ground Zero for CFS", accompanied by an Incline Village survivor,
    to the very places where clusters of mysterious illness occurred, and felt "the effect" of these toxins for herself.

    That's where she got the crazy idea from,
    that this might be worth investigating.

    Lisa simply went ahead and did something that no CFS researcher ever saw fit to do.

    Simply ask someone who was there.

    Wotta concept!

  22. >In this 2004 paper, referenced above by one the commenters, Lipkin and his co-authors discussed whether mercury might have a role in autism.

    Lipkin's current view about the role of mercury in autism is, to me, unclear. Regardless, I am glad that he was open-minded enough to consider that toxins might have a role in that disease, at least at one point in time.

    I never proposed that a retrovirus is not involved in ME/CFS. People who know more about viruses than I do need to figure that out.

    My proposal, as always, was that being poisoned by general or specific toxins might cause people to catch various pathogens (such as retroviruses) and/or have them remain perpetually activated.

    Perhaps, then, without being poisoned, they conceivably might not be sick at all, or might be much less sick. If indeed that's the dynamic, it seems important to know about.

    I'd like to hear more about the the patients in the labs mentioned above, that Gerwyn brings up as possibly not likely to be positive for XMRV. This seems really important to discuss, regardless of whether one thinks that toxins might be playing a role in the disease.


    Lisa Petrison, Ph.D.

    lisapetrison at yahoo

  23. >I just finished reading a great history of the epidemiological work in the 1850s that showed the cause of cholera. It's called The Ghost Map. And it was interesting to me to see that back then, before the scientific work was done, and based on anecdotes and individual outbreaks alone, everyone was convinced that some mysterious toxins or substances in the air of filthy places were causing the disease. They called this a "miasma." It is a very ancient idea, going back at least to the Greeks. The author argues that miasma as a source of disease is a naturally intuitive idea for people, because our noses and our sense of smell are so important in our sense of disgust and our warning system for danger. But of course, cholera turned out to have nothing to do with miasmas or air-borne toxins, despite the absolute convictions of the vast majority of people and evens doctors and public health experts. It was a specific microbe carried in drinking water.

    I'm just saying, the miasma theory being so ardently promoted here has very ancient and primitive roots. It is probably about as true as it was in the case of cholera.

  24. >"Empirical":

    Relying on or derived from observation or experiment: empirical results that supported the hypothesis.
    Verifiable or provable by means of observation or experiment: empirical laws.
    Guided by practical experience and not theory, especially in medicine.


    "Guided by practical experience and not theory, especially in medicine."

  25. >Erik's brought up cholera epidemics so often as an example of why people need to look specifically at "the effect" that I was interested to read about "The Ghost Map" book. I downloaded it onto my kindle and will look through it soon.

    The concept of "miasma" is interesting as well, of course.

    Here's one of Erik's comments. Is it consistent with what's reported in the book?

    Thanks for the suggestion.

    Best, Lisa


    Put yourself in Dr. John Snow's place.

    Back during the Great London Cholera epidemic, the mainstream didn't know about germs.  Oh, they had their suspicions, but it wasn't "proven.”

    But John Snow could see the effect.

    People who clustered around a certain public water source were dropping like flies.    

    He didn't need to nail down the precise etiology to make that connection.  He didn't have to prove anything to take advantage of the phenomenon which he could clearly observe.

    By acting in accordance with the reality that sick people obtained water from that well, and persuading the city officials to put a lock on the pump handle, he interceded in the effect and stopped the chain of cholera transmission.

    He wasn't validated until later, after science caught up with what was, after all, a very simple observation.

    At the beginning of the CFS epidemic, I saw that people who were in the presence of mold were dropping like flies.  I told everyone about it, but they said that mold had been around forever, so this couldn't be right.

    While they stayed in the presence of mold and continued to manifest symptoms, I simply acted in accordance with the effect and asked doctors to find out why.

    They refused, for exactly the same reasons that the mainstream doctors argued with John Snow.

    "If we don't already know it, then you can't prove it – and we aren't going to do anything until you can prove it.”

    -Erik (2008, CFSU)

  26. >Everything in my experience tells me the ancient Greeks were really onto something.

    Hippocrates description of "burning winds" is really breathtaking. Either he was totally out of his mind, or this was a really spectacular example of an "effect" at its utter-most extreme.

    I think Hippocrates was telling it straight, just like it really happened.

    And it is in the "extreme" situations that unusual effects are more easily observed for the way they "break the rules" and transcend all customary parameters.

  27. >I'd feel a lot better about this study if Bell and Cheney were giving samples. Especially samples from Bell's Lyndonville outbreak group he has been following for years.
    Bateman and Klimas run "Fatigue Clinics" . Klimas even calls our disease Chronic Fatigue at the Cfsac meeting and recommends CBT.
    The CAA has many connections with some of these doctors providing samples and there is too much conflict of interest with Peterson and Bateman.
    Why were Bell and Cheney left out? These are the two doctors I think patients trust the most to identify true ME patients for this study?
    Also if the Governmnent can come up with 2.3 million for this study there should be a million somewhere to hand Lipkin for Deep sequencing.
    Someone should convince him to write up a grant proposal for the NIH. See if he has an luck getting a grant when the WPI has obviously blocked from them since the science paper came out.

  28. >Dr. Deckoff-Jones, these articles of yours are so interesting and so touchy. I thank you so much for sharing your experiences, knowledge and thoughts with us!

  29. >Dr Klimas believes that Neuropeptide Y, a stress mediated response, is 'upstream' of viral reactivation.
    Dr Klimas subscribes to a concept that places emotional stress as a primary cause of illness-exacerbation, as she did in her "Hurricane Andrew" study.
    So it makes sense that Dr Klimas would emphasize CBT.


    2008 Chronic Fatigue Syndrome Research
    Biomarkers, Genomics & Training for Doctors
    By Adrienne Dellwo, Guide
    Updated February 20, 2009

    In an effort to better understand, diagnose and treat chronic fatigue syndrome (CFS or ME/CFS), researchers are looking in a variety of directions in several exciting new studies.
    Dr. Klimas's Team
    ME/CFS treatment-and-research pioneer Nancy Klimas, MD, with E.M. Papper Laboratories of Clinical Immunology in Miami, has put together a team of scientists that, as of early 2008, had four projects in the works:

    The "Good Day/Bad Day" study

    Because ME/CFS can have you on a roller coaster when it comes to how you feel, researchers are taking blood samples on good days and bad days, then comparing them both to each other and to samples from healthy people. Their goal is to find biomarkers (physical traits that measure the effects of a disease) that can predict ups and downs.
    NPY & CD26 study
    Researchers are studying the roles NPY (neuropeptide Y) and CD26 (dipeptidyl-peptidase) play in the development of ME/CFS. NPY and CD26 are biomarkers involved in regulating several systems in your body, including cardio-respiratory (heart and lungs), immune, endocrine (hormones) and nervous systems.
    Gulf War Illness research
    Researchers are comparing how genes behave in both Gulf War illness and ME/CFS before, during and after exercise. They're hoping to figure out what causes people with both conditions to get worse after exercising — a symptom called post-exertional malaise.
    Training for Doctors
    It doesn't much matter what experts know about ME/CFS if your doctor doesn't recognize or know how to treat it. Therefore, Klimas's team is trying to develop training modules for doctors in South Florida that would serve as a model for national training programs.
    The Future of ME/CFS Research
    Dr. Klimas believes the future of ME/CFS research lies in genomics. Genomics research already has identified 7 subtypes of ME/CFS, and Klimas believes it will further identify how people with different subtypes will respond to treatments. Right now, everyone with ME/CFS is lumped into one category and treatments fail to be successful in clinical trials. Separating them into subgroups would help in pinpointing treatments for each group and in getting them approved. She also says it will provide diagnostic and biological markers that will allow treatment research to go forward much more quickly.

  30. >Dr Ritchie Shoemaker and I tried to explain to Dr Klimas that Hurricanes can unleash high ambient levels of…..

    But Dr Klimas wasn't buying our crazy hypothesis.

    She thinks the reason her Florida patients got sicker was "Hurricane Stress".

    Dr Shoemaker and I aren't buying HER crazy hypothesis either.

  31. >(I guess our crazy hypothesis would fall under the "miasma" category)

  32. >Dr Mikovits herself said that XMRV and HGRV replicates with cortisol. Stress exacerbates our illness.

    Before people start taking our experts down, please take a good look at who dedicated their lives for us and donate time away for their families to attend advocacy committees and scientific committees. Easy to criticize.

    Not so easy to ACT.

    remaining anonymous with apologies.

  33. >I finished reading “The Ghost Map,” which turned out to be really enlightening. For one thing, I had no idea how literal Stephen Sondheim was being in his description of 1850 London, in Sweeney Todd:

    There’s a hole in the world like a great black pit
    And it’s filled with people who are filled with sh*t
    And the vermin of the world inhabit it.

    Cram 5 million people into a small space with no sewers or other effective way of disposing of human waste, and it’s unsurprising that people would focus on the smell! That would be offensive enough that it would be hard to believe that no human health hazard was resulting.

    As it turns out, inhaling the fumes of human excrement seems not to be that dangerous. The disgust generated seems instead to be a warning, to keep us from picking up various nasty pathogens (such as the one that causes cholera) as a result of EATING human excrement.

    Thus, while the miasma (fumes) did not cause the cholera, not addressing the conditions that created the miasma led to situations where people ended up eating one another’s feces, through contaminated water sources.

    The emergence of cholera thus was a direct result of the changes in living conditions. The solution was not antibiotics (which eventually would create resistant strains) but to change the “background factors” — creation of sanitary systems that separate human waste from food and water supplies.

    Once in a while, perhaps, a “bug from hell” comes about that is a killer regardless of contextual factors. Perhaps HIV is one of those. More often though, pathogens seem to operate like cholera — emerging as a result of environmental changes.

    This, some of us think, is what’s happening today. The big contextual change of our age is the large amounts of manmade toxins in our environments. This is problematic not so much because these chemicals cause disease all by themselves, but because (it seems) that they allow the emergence of microbes that we are not evolved to coexist peacefully with and that create toxins that are especially poisonous to us (much more so to us than the manmade chemicals themselves).

    This dynamic appears to occur both in our bodies and in our environments. Insofar as our bodies take in more toxins than we can effectively process, our internal terrain is altered. The chemicals dumped in our rivers, lakes, sewers, forests, oceans and fields do the same thing to the environmental terrain.

    The idea that only mutated strains of microorganisms might be able to thrive in profoundly altered terrain seems pretty reasonable, in my opinion. It’s only when you think through the implications that it starts to sink in how profound of a paradigm change this may be.

    A couple of possibly relevant points.

    1. Absolutely reliably, if I go to a place that’s not been altered with chemicals (even if it’s frequently been visited by humans carrying a variety of spores), I have no problems at all. It’s only places that have been treated with chemicals (like the fire retardants used so liberally in the Lake Tahoe area) that I encounter microorganisms that are problematic to me.

    2. The vast majority of bad buildings have no offensive smell whatsoever. You’d think (according to the miasma theory) that if this were the “same old mold,” our bodies would be evolved to find the smell offensive so that everybody would automatically get away.

    The solution to the spread of cholera was the addressing of the contextual factors (such as building sewer systems), using drugs only for emergencies. Similarly, it could turn out that the best or only solution to the internal and environmental microbes that are problematic in ME/CFS is to fix the context — by somehow addressing the toxins that are causing those microbes to flourish.

    It’s a thought anyway.



  34. >

    Physical Symptoms of Chronic Fatigue Syndrome Are Exacerbated By the Stress
    of Hurricane Andrew
    This study examined the effects of Hurricane Andrew on physical symptoms and functional impairments in
    a sample of chronic fatigue syndrome (CFS) patients residing in South Florida. In the months after Hurricane
    Andrew (September 15-December 31, 1992), 49 CFS patients were assessed for psychosocial and physical
    functioning with questionnaires, interviews, and physical examinations. This sample was made up of 25 CFS
    patients living in Dade county, a high impact area, and 24 patients in Broward and Palm Beach counties, areas
    less affected by the hurricane.

    Effects of depression. Despite theoretical concerns
    about comorbid depression in CFS (19), there was no
    significant difference in the SCL-90 depression subscale
    scores reported by the CFS patients and the
    non-CFS neighborhood residents after the hurricane
    (p = .72). To rule out the possibility that within the
    CFS patients, the observed pre-/posthurricane
    changes in physical symptomatology, such as level
    of sleep and fatigue, were merely symptoms of depression,
    we correlated levels of pre-/posthurricane
    symptom change with SCL-90 depression. There
    were no significant correlations between depression
    and change in any of the symptoms that showed
    significant increments from pre- to posthurricane.
    This suggests that the changes in these symptoms
    were not solely attributable to depression.

    "This suggests that the changes in these symptoms
    were not solely attributable to depression."

  35. >Exposure to environmental chemicals, toxins and off-gassing products would be stressing the immune systems of all people, but changing those conditions doesn't allow our immune systems to recover and rid itself of the multiple chronic viral infections we have, something else is going on and WPI is trying to find out.

    If a few people feel better avoiding mold that's great for you, but take it up with toxicologists and MCS doctors and start your own support group or blog. I don't see the point of your repetitive posts banging on about this here, its an ill "effect" that has disrupted this conversation which is clearly of interest to many patients.

    Thanks Dr Jamie for sharing your thoughts and experiences, sorry there are some negative people determined to pick on you. I found it interesting to hear of other people's valid concerns which I share about the Lipkin study. Can we get please get back on topic now?

  36. >>Exposure to environmental chemicals, toxins and off-gassing products would be stressing the immune systems of all people, but changing those conditions doesn't allow our immune systems to recover and rid itself of the multiple chronic viral infections we have, something else is going on and WPI is trying to find out.

    Once someone has contracted cholera from drinking bad water, ceasing to drink more of that water may not be enough to resolve the problem.

    Similarly, evacuation from a toxic environment may not be enough to resolve whatever problems that toxic environment has already caused.

    That doesn't mean that we should ignore the issues of contaminated water or toxic environments though.

    Through the understanding of such contextual factors, we can possibly help to prevent others from getting the disease and possibly develop more effective treatments that go to the root causes of it.



  37. >Oh God. When I wrote my post about The Ghost Map, I have to admit I was trying to poke a little fun at the Mold Contingent, pointing out that "miasma" theory was intuitive and primitive, and apparently empirical, but WRONG, at least in the case of cholera. John Snow was using a huge amount of medical and detailed statistical knowledge, not just from the 1851 outbreak, but from earlier ones, to construct and test his hypothesis. Let's just say he was no ErikMoldWarrior. ErikMoldWarrior's (and Lisa's) arguments are much more like the reasoning of the miasma theorists, whom Snow proved wrong.

    Like most other folks here, I am sick to death (well, not quite, but close) of the hammering away at the mold/local toxin theory. Erik and Lisa, it isn't that other people aren't willing to hear your insights, it's just that, having heard them 257 times in the past few months, we're ready to move on. Just because other people don't accept and act on your insights doesn't mean we haven't heard them (and heard them and heard them). I would be perfectly fine with your contributions if they constituted, say, 5% of the discussion here, alongside other theories (I think XMRV deserves more space because of the current science and because this is Dr. Jamie's blog), but we end up with 25% of the comments section, at least, being mold/toxin/miasma theory, asserted with a tone of disbelief that the rest of us are so thick-skulled that we aren't in your camp–literally, your desert camp.


  38. >One takeaway from story of the London cholera epidemic is that human disease is caused by pathogens, and that breathed-in toxins are irrelevant to health concerns.

    This seems to me an overstatement. Certainly it was the case that breathed-in toxins were not the cause of cholera, but suggesting that this means that we should ignore them in the investigation of every other disease throughout all eternity misses the point.

    I think it’s more enlightening to look at the story as how John Snow used epidemiology to figure out how the disease was spreading. Once he was able to trace the spread, the “cause” became clear.

That’s something that’s never been done in the field of ME/CFS. No one in any official role has ever presented even a vaguely plausible theory of how this disease spreads.

To my knowledge, the only person who has proposed any even vaguely plausible theory on this topic is Erik Johnson. His observation was that people who were living or working in particularly bad environments in Tahoe in the mid 1980s were the ones who came down with the “Yuppie Flu” (later renamed by the CDC as “CFS”). People who were not getting as heavy exposures were much less likely to get the flu and much more likely to recover from it if they did get it, he reports.

    At the time, mold was considered not to have the potential of causing anything other than allergies, and other sorts of biotoxins (such as dinoflagellates) had not been recognized as dangerous either. Thus, as was the case with Snow’s, Erik’s observations and hypothesis were ignored by all officials who were supposed to be studying the disease.

    Even though molds and other biotoxins now are recognized as having effects that indeed would lead to the activation of pathogens like XMRV, Erik’s hypothesis still has not been studied epidemiologically. I think it’s time that that changed.

    Unfortunately, neither he nor I has the resources to conduct such work. The most we can do is bring it up in public forums such as this one, in the hope that others such as the WPI choose to study it.



  39. >It seems obvious that stress would make CFS worse. Stress makes EVERY illness worse. Bar none.

    So why would CFS be targeted for CBT and not every illness on the planet?

  40. >@ Anonymous July 10 5:20AM and 11:57AM

    I agree with the above anon comments and respectfully ask Lisa and Erik to stop the ad nauseum (no pun intended) mold/environmental toxin speak.

    With appreciation, I've read what you have to say and am currently checking into the information you've shared. You are obviously very knowledgeable and passionate about letting others know what's worked for you and about trying to help the CFS community.

    At the same time, you need to know when to let up. With all due respect…it was many paragraphs ago.

  41. >OK.
    It's just mind boggling that CFSers feel such luxury to dismiss clues because it isn't what they wanted to find.

    In terms of scientific methodology however, to deliberately disregard pertinent evidence is called "bias" and "skewing the data".
    So for "researchers", it is a more serious matter, because it means they aren't serious about this little CFS "treasure hunt".

  42. >Hi Rendere,

    Respectfully in return, that request is precisely what all the London officials touting the miasma theory of disease said to the amateur investigator John Snow:

“We know what causes the disease, and so we don’t want to hear about your theory, especially not in detail. Go away.”

    It would have been a mistake for Snow to comply, just because he was asked to do so. Too much was at stake.

    However, I wholly welcome skepticism, which is a part of the scientific method and is helpful in idea development. Thanks very much to all those who have offered it.



  43. >Lisa,
    Please understand that your comments are useful only if people have receptive minds. You have tried repeatedly and have been rebuffed repeatedly. Unless you have some sort of savior complex, you should give up the blogs and write an article. It is a limited theory, anyway. You should look more carefully at the hydrogen sulfide hypothesis. It explains all of what you are saying and more.

  44. >Thank you for your suggestions. I hope you will understand if other people posting here use their own best judgment in terms of whether to follow them.

    Best, Lisa

  45. >Let me add that both Erik and I have been contacted privately by precisely the people that we wanted to reach when we first started posting in the comments section of this blog. Our efforts to describe the phenomenon here thus have been tremendously successful in accomplishing our goals.

    Whether we're rebuffed by a few people posting comments is irrelevant to those goals. Insofar as there is merit to the phenomenon being described, those folks will come around as it's studied more.

    I do sincerely appreciate your concern for our well-being though. :)

Comments are closed.