Life Goes On

In three words I can sum up everything I’ve learned about life. It goes on.  ~ Robert Frost

The week before I left to come to Hawaii was a difficult one for me. I took a series of emotional hits in quick succession, then had to leave home to take care of patients here, alone with no support. I arrived feeling sicker than I had in many months. My first patient was a well known advocate in our community, and I will always remember that she was there when I got off the plane, as well as her caring in the first difficult days. She knows who she is, a very special woman.

Childbirth was the initial trigger for my illness, and a concussion once, but sustained emotional stress was involved in my worst declines. So I was a little concerned, as was my family. I did dip a little, predictably, but I’ve been able to function throughout and am feeling better again. More resilient than expected. Able to weather some difficult stuff without going down, a degree of stability necessary for the patients who are choosing to put their trust in me. At least they can be sure they are sitting with a doctor who cherishes every encounter, whatever the future may hold. I know what it’s like to be unable to work. Actually, I know what it’s like to be unable to roll over. I get a little frustrated sometimes at having to pace myself pretty extremely when I’m at risk, like now, but if I stick to very restricted hours and activities, particularly when I don’t have help, I can do the things I need to get done in the physical world. The medicine is the easy part. A reflex. So far caring for my own patients is sustaining me. As always, I work diligently to stay focused on what I can do, rather than what I can’t, and I don’t allow myself to sweat the small stuff.

A few people wrote that they were disturbed that I said I didn’t expect a cure. I should have said in my lifetime or in the foreseeable future. In the same way that HIV patients are incurable, yet attain functional cures for long periods of time with treatment, I expect that a similar degree of successful management of the disease will be possible for ME/CFS patients. The politics and regulatory issues are a nightmare, as I’ve learned firsthand through my association with the WPI. Coming here to see patients one-on-one feels like respite compared to that. The hardest thing for me to absorb is that a giant hand came down and hit the pause button on the science, and therefore the search for appropriate specific treatments, until Lipkin opens the envelope and declares a winner. We have the technology! It’s just money and priorities. If everybody would wake up and recognize it for the public health disaster that it is, it would take a couple of years to get a handle on what’s there from an infectious disease standpoint, a couple more to figure out the basic pathophysiology and a couple more for compassionate use treatments to be available. But it doesn’t look like that is what is going to happen. The psychiatrists will have their way for a while longer. We will have a new diagnosis, CSSD, Complex Somatic Symptom Disorder. New name for Munchausen’s.

The best news is that my Munchausen’s by proxy is in remission:). Ali is doing very well again, with large amounts of supplemental oxygen. We put the concentrator in the middle of the house with a long hose allowing her to be wherever she wants to be. She has been using it at 10 L/min for about an hour a day, more if she has breakthrough symptoms. She has needed no prompting, but wants to do it, because it makes her feel better. She has also had a few Meyer’s Cocktail plus glutathione infusions that seemed helpful, supportive, but she hasn’t had any for 4 weeks now and continues to improve with oxygen being the only new treatment. Her MCS symptoms, or hyperosmia, have almost resolved. She was able to go to a party for a few hours at a neighbor’s house last week where she was exposed to perfumes without problems. She hasn’t tried the chamber yet, but I have asked her to figure out if pressure adds anything for her, since she is much more sensitive than I am. As for me, I do think I benefit from the effect of coming to sea level from altitude (my house in Santa Fe is at 7000 ft). It most likely would be short-lived if I stayed, but should happen each time I come here, planning to use oxygen when I return to elevation. The travel really doesn’t bother me much anymore. I use the wheel chair service and am grateful for it. Supplemental oxygen during flight would protect against adverse effects of hypobaria and hypoxemia, but it is very expensive and a hassle. If I just pretend I’m home on the sofa, play with my iPhone and let them transport my body, the travel doesn’t seem to be a problem for me.

And lest anyone think that mouse retroviruses are not part of the picture whilst we are waiting for Dr. Lipkin, reminiscent of Waiting for Godot:), take a look at this important paper: Frequent detection of infectious xenotropic murine leukemia virus (XMLV) in human cultures established from mouse xenografts. Zhang/Gazdar. It’s reads like science fiction if one considers the consequences of this wee oversight, realizing that mouse xenografts have been used since at least the 40’s, though I still think the early yellow fever vaccine work was probably the beginning of human assistance in the natural process. Or it may have begun even further back, with the selective breeding of mice in the early 20th century, mice that were unable to survive in the wild, producing infectious viruses to which they are not susceptible due to receptor mutations. The use of animals, including mice, for the production of vaccines started in the early 30’s or before. Yellow fever was attenuated in mice and injected into monkeys and humans. See previous blogs here, here and here. Also there must have been lots of experiments at the time that didn’t make it into print. The records from the Rockefeller Institute would probably shed a lot of light. This paper was published in 1932 and the first documented outbreak of Epidemic Neuromyasthenia at LA County Hospital was in 1934: Vaccination Against Yellow Fever With Immune Serum And Virus Fixed For Mice. Sawyer/Lloyd. J Exp Med. 1932 May 31;55(6):945-69. Infectious mouse retroviruses probably infected humans before that, but at very low levels, since the sick mice died like they were supposed to. 

Hats off to Zhang et al for their vital work, and for calling a spade a spade. Finally someone stating the obvious. 22Rv1 doesn’t explain away all the ruckus, nor was it the incredibly rare event postulated by Paprotka et al. Like XMRV, it is a signpost to a much greater problem. It is the patients that are contaminated, and not by just one virus. Many infectious retroviruses. Just because way back when, Coffin, Stoye, Heneine and the gang all said it couldn’t happen, doesn’t mean that it didn’t. Some choice comments from the Zhang paper:

ERVs represent remnants of ancestral germline infection by exogenous retrovirues and after integration into the genome are transmitted vertically as proviruses. Murine leukemia viruses (MLV) as ERV provirus forms are present at about 60 copies per mouse genome from which up to 15 copies are related to infectious xenotropic murine leukemia viruses (XMLV)… Thus, active mouse ERV provirus present in common inbred mouse tissues can be the origin of XMLV or recombinant polytropic MLVs which are infectious to human tissues implanted in laboratory mice.

Earlier studies have documented that XMLV type-C retrovirus particles were indentified in human xenograft cultures derived after xenografting in immune-compromised mice… NCI-N417 SCLC cell line was established from a mouse xenograft by the Gazdar lab at the National Cancer Institute (NCI) in the early 1980s and this cell line was subse- quently found to contain XMLV a few years later.

Reports of XMLV strains being present in human xenograft cultures appeared in the 1970s…

Our results indicate that human tumor cells frequently become infected with MLV virus after xenografting and subsequent culture. We have observed that mouse stromal cells may persist in culture for lengthy periods. Mouse stromal cells, while they contain abundant provirus forms of MLV, including ecotropic, polytropic and xenotropic strains, seldom spontaneously release large amounts of infectious virus (authors’ unpublished findings). Virus infection of xenografted cells may require activation of XMLV virus by chemical or immunological induction in mouse and by prolonged mouse and human cell contact. Viral transfer may occur in the mouse host or during subsequent xenograft culture. Our findings of infectivity of XMLV-positive supernatant fluids demonstrated that XMLV can readily infect other human cultures without presence of mouse cells or other aiding factors, indicating that these viruses are highly infectious.

In conclusion, our studies demonstrated that several MLV strains were present in over one fourth of xenograft cell lines. Infected cell lines were identified in most laboratories working with or establishing xenograft cultures, indicating that such contamination was widespread. Infected cultures usually release large numbers of infectious virions, and intra-laboratory spread of MLV virus to other cell lines maintained in the same facilities may occur, confirming the highly infectious nature of MLV virus. Retroviruses have been associated with multiple diseases including solid and hematologic malignancies, AIDS as well as with non-malignant diseases. The high susceptibility of human cells to infection with XMLV, the high levels of reverse tran- scriptase activity present in culture supernatant fluids and the demonstrated infectivity of the shed virions suggest that such viruses may present potential biohazards to laboratory person- nel involved in cell culture facilities or to those handling human xenografts. In addition, the effects of the integrated provirus or the released virions on the biology of infected tumor cells are unknown. Provirus integration into the genome is not random, and occurs preferentially at transcription start sites, CpG islands, DNase-hypersensitive sites and gene-dense regions, suggesting that provirus integration may influence transcription in the host cell. Thus laboratories handling or culturing human xenografts should monitor for monitoring personnel for viral antigens or antibodies to them. 

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131 thoughts on “Life Goes On

  1. >Jamie, I am so happy to hear you really stand up to the disrespectful treatment of your blog by Lisa and Erik. I can't wait for the beginning of the more vigorous (and varied!) conversation that I think can occur without the distraction of their repetitive, close-minded, and condescending posts. Don't worry if you said "OCD" inappropriately, or whatever, because you've really been saintly in your tolerance until now. But we all have our limits!

    I love your posts, am always excited to see a new one.

  2. >Thanks Jamie. (for the oxygen info)

    I have never used a non-rebreather mask. I thought it was used only for serious medical emergencies, like CO poisoning. Do MCS patients benefit from such a strong blast of O2? And is there research somewhere about this?

    Thanks again. ~DB

  3. >Thank you Jamie for your continued insights. You have shown an unbelievable amount of patience to the moldies IMHO. If this were my blog I would not have been so kind.

    Rivka, I don't have time for evangelism of any kind. I come here for a dose of science and reality from Dr Jamie, not a lecture from some self-proclaimed "mold warrior".

    Let us hope the moldies have the courtesy to go away and start their own blog. I suspect they won't. I hope they prove me wrong.

  4. >It seems a possibility–not THE explanation, certainly not the only possibility–that "some" people do better/recover at sea level MIGHT be because their mitochondria respond "more" efficiently than at other altitudes. There are some interesting studies on people living in Tibet that focus on their mitochondria, ability to transport and maximize oxygen absorption. One of the studies I read stated that though the Tibetan mitochondria allows them a certain adeptness in the mountainous altitudes, they would not be able to walk a mile at sea level. Mayhaps, there is some paradox at work for those with CFS?

    It sounds as if most people with CFS have a different paths to healing–though there might be some standard treatments that help support the process. So much is anecdotal! As someone who has suffered and lost so much because of this despicable illness, I say that even modest improvements from living at a different altitude is awesome. Which one of us would not wish to have an increase in functionality? Jamie, I hope you have a buoyant, supportive structure in your life because it must be difficult to have so many people looking to you for answers–sometimes desperately shoving to get the truth out of you. Alas, heavy is the crown!

  5. >I am kind of surprised that Lisa and Erik might be taken aback by all the comments about them here, as they've certainly experienced the same thing on several other forums where they say the same thing over and over and over. And over.

    I never thought about it until now, but is very OCD-ish behaviour, and yes, they are very close-minded at times.

    Certainly it's understandable that if one has experienced a significant degree of recovery after being sick for years that they would want to spread the word. But with respect to Rivka, I regret to say that I don't really think Lisa or Erik 'evangelize' because they want to help others recover, I think it's because they both have this bizarre need to be RIGHT.

    If that weren't true, we wouldn't see the dozens of posts from them (for example) on Jamie's July 2nd column.

    I encourage them to start their own blog, but also suggest that they try to remember that perhaps not EVERYONE is affected by mold, and that there are many who are severely ill without the mold component, and also people who have recovered, believe it or not, without mold being a factor.


  6. >Oh, I very well know what to expect by now!

    People have treated us like total crap since we started the "Chronic Fatigue Syndrome".

    You've already made up your minds about us.

    Treating us like "loonies" and refusing to ever examine the evidence.
    NOR make any attempt to find out what was happening to us in that teachers lounge.

    Gerald Kennedy absolutely nailed it!
    You would think there would be questions, but there never are!
    Only a constant stream of insults and abuse, for over a quarter century now!

    Osler's Web; Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic
    by Hillary Johnson

    Page 49
    "Foot Soldiers From Atlanta"

    Truckee High teachers Gerald and Janice Kennedy met Holmes, but Gerald Kennedy confirmed, "It wasn't by his request — it was by ours."
    Upon arriving for an appointment with Peterson, they learned from the doctors staff that a federal investigator was on the premises. Gerald Kennedy,
    by now convinced that he, Janice, and their Truckee High colleagues had been victims of an environmentally transmitted disease, sought a meeting with him.
    Apparently Holmes was agreeable. "We went into the examining room and asked him some questions," Kennedy said. High among the teachers concerns was the possibility that fumes from the ditto machine toner — which, after all, was packaged in a can decorated with skull and crossbones — had made the teachers ill.
    Another culprit proposed by Kennedy was the encrusted, infrequently changed air filters in the room's heating system.
    Could they have allowed a viral agent to infect the teachers?
    "I remember telling him about the filters," Kennedy said. "You could tell he thought we were a bunch of loonies, That was early into it, and we were still thinking, Well, maybe we ARE crazy. But you would think that we would be questioned, at least, and there weren't a lot of questions. He just nodded his head and said, "Uh-huh, uh-huh.'' Very little information was exchanged." By his countenance of indifference, Holmes communicated his bias to the Kennedys: "He seemed to have already made up his mind about us."

  7. >One room at the Truckee highschool does not explain how hundreds of people in incline village and the surrounding towns were coming down with ME Erik. Mold would not spread from one room's ventilation in a high school to the towns surrounding Incline village. Let it go.

  8. >"The definition of insanity is doing the same thing over and over again and expecting different results." Albert Einstein

    Could you, Jamie, please ban the mold warriors from this blog. Their style of over and over has gone beyond the insane.


  9. >You're doing it again Erik, repeating something you said at least a thousand times.

    Start. Your. Own. Blog.

    Maybe Jamie will even link to it.

  10. >I feel a bit mixed about it, because an ignoble part of me will miss the drama, but I have to say that, if they won't stop, I agree that you should ban the obsessive moldies from the blog. The constant drama keeps us from being able to discuss this illness sanely, even the possible environmental-contaminant contributions to it. (I'm a skeptic about this aspect, based on my own experience, but I always try to keep an open mind–though not open to evangelists.)

  11. >Anyone else finding that they are now just skipping over Lisa and Eric's posts?

    Great way to get out information that might help some, guys.

    Some of the "XMRV is the only cause for ME/CFS" crowd, could learn something from this:

    Repeated postings on various blogs don't work which is not saying that people should not try to get a message across. People just tune you out after a while.

    But this manic posting makes us just look crazy,

    Maybe continue the conversation just ignoring their posts?


  12. >Jane, I think that would be a nice solution, except that there are always people new to the blog or occasional visitors who get drawn into debate with the moldies, and then it goes on and on and derails other discussion. I have several times seen interesting lines of discussion get completely derailed by an interruption from a long series of posts from the mold contingent and their respondents. Then the whole conversation just dies. It's very disheartening.

  13. >I would like to put a stop to the constant distraction, but don't want to ban anyone unless completely unavoidable. Therefore, I've decided that if Erik and Lisa still want to participate, they limit themselves to one comment per blog each that addresses something I wrote about. After that, I'll remove any comments, but ask them both to please police themselves, because I have better things to do.

    The strangest thing to me about the whole thing is how unheard the mold warriors feel when most of us hear them loud and clear. It seems particularly pathological to me that they should have concluded that I am their enemy. Or that they should feel that because they have experienced disbelief that they are somehow special. The Lake Tahoe outbreak was 50 years in. Not the first. A number of people have written to me that got sick before 1984. I think 1959 is the longest. It will be figured out eventually and it won't be anything supernatural.


  14. >XMRV+ here too Jamie. All my family members except one have either cancer or a neuroimmune disease. The first casualty was my brother from leukemia in 1964. After that came MS, Parkinson's, breast cancer, Graves disease, and 2 cases of fibromyalgia. No prior history of any of these illnesses in my family.

  15. >Hi Jamie,
    I too can remember early symptoms back in the 50s. Having to miss a rare school exursion to the zoo, because I couldn't get out of bed for a week, with a terrible feeling of malaise.
    This was repeated several times through the years, till just after my last baby, I the worse bout, accompanied by a blackish, swollen throat.
    my teenage daughter had the same thing too, neither of us ever recovered properly after that.
    I have been pretty much bed or couch bound for twenty odd years.
    my second daughter now has joined the family ME/Cfs club,along with my brother and two of my three sisters.
    All of them have one or two kids with it as well.
    My Dad is in his eighties and is still travelling the world, full of energy! …and he had Prostate Cancer a few years ago.

    I"m always encouraged by reading your blogs. When brain fog takes over and I can't research things myself, I rely on you to keep me in the loop.
    God bless all of you who are working so dilligently, to find all of us a cure.

    with thanks,
    in Oz.

  16. >I have been ill since 1977. I am not sure (yet) if I have the XMRV virus. I am in Montoya's study, so hopefully one day I will know which of the 50 pathogens he is testing have infected me.

  17. >Symptoms that started in the early 1950's were joint/muscle pain (same pain I have to this day), muscle weakness, fatigue, frequent colds/flu, ongoing low grade fever, tremors. (My poor, amazing mother dealt with it all.)

    At puberty, periods were extremely painful with nausea/vomiting q month. Depression, anxiety became constant companions. Never able to conceive.

    One brother has tremors but no other symptoms. No other family has reported neuro-immune disease, but we're kind of tight-lipped about things like that.

    Can't tell you how significant it is to begin to put the pieces of the puzzle together after all these years.

    Thank you, Jaime

  18. >Add on to Anon July 20, 10:32 AM

    Forgot to mention the flu that hit in 1984 that triggered CFS. Usually report having CFS for 27 yrs, but now it looks as if it could be more like 57 yrs.

  19. >As long as we're revealing durations, for me it's around 1970, probably a little earlier.

  20. >i read your lastest post–whoa!–last night before i slept and woke up thinking about it. with so many people sick around the world, it's like, wake up! emergency! i feel like an emergency. i'm walking around my house with a heart rate of 120… i've got a mild tremor under my skin that feels like i'm plugged in to a power source. how long can that go on? i'm gonna live life to the fullest from my little couch-bed.

    ty, jamie, dr dj. you're the only one left who's telling us the understory since hillary stopped writing. waiting for godot? isn't that the absurd reality of waiting for someone who's never coming, the god that never saves you? reality check; that's what we all need. if all of this leads to treatment someday for whomever, the whole debacle has been worth it. i'm unselfish enough to realize that… big love, ~lt xoxoox

  21. >There's always so much talk about this bug, that bug, (and yes, way too much talk about mold). I wish you would do a blog post about 'terrain', and how we can strengthen that and strengthen or balance our immune function. You've mentioned methylfolate and b12 several times, but nothing about depleted minerals or other vitamins.

    I wonder how many people reading this have become severely depleted in say, for example, vitamin D?

  22. >This gives a good timeline and history of outbreaks and events.

    Incline Village was not some ground zero, so there's no real reason to endlessly obsess about what did or did not occur. It was in reality a missed ME epidemic, recast as CFS. Then note the disappearance – "CFS defined the disease (ME) out of existence….."

  23. >Jill,

    Thank you, that is THE most powerful video on the history of CFS I've seen.

  24. >@ Anon July 20, 2011 12:19 PM

    "I wonder how many people reading this have become severely depleted in say, for example, vitamin D?"

    My Vit D was very low. It has been corrected. I still have symptoms… am still XMRV+.

  25. >Actually Jill, you are wrong. Incline Village was ground zero for CFS. The Incline Village epidemic was a typical outbreak of ME plus additional evidence that was discovered thanks to Drs. Peterson and Cheney. So, CFS is really ME plus the newly identified abnormalities (HHV6A, abnormal MRIs, high levels of platelet debris, and extremely low percentages of B cells).
    Here is an interesting quote from Osler's Web:
    "Obviously something- a virus or some kind of toxin was killing cells in the Tahoe sufferers."

    Jeri McClure Kurre

  26. >Jeri,

    I removed Jill's post because it was in response to a repetitive post from Erik that I had already taken down. I would ask that if Erik or Lisa post again to this post, or more than one comment a piece on future blogs, that no one respond, so that I don't have to remove whole threads. It is hard to imagine that this is necessary, but it seems to be, to avoid the constant disruption.

    Thank you,

  27. >Dr. Deckoff Jones,
    You once said ,"My bias in all this is to believe the patients, because that's where the best information comes from."
    So, now you consider it "disruption, OCDish, and pathological"behavior?! Also, what exactly did you mean by, "It will be figured out eventually and it won't be anything supernatural."
    I would think that when numerous patients (including XMRV positives) are able to put this horrific disease into remission by avoiding specific biotoxins , it should be talked about. I think that patronizing comments towards patients are very unfortunate, to say the least.
    Jeri McClure Kurre

  28. >Jamie–I am so sorry that you have had to add blog police to your resume. Probably not the job you imagined. But when people can't police their own obsessions, then you gotta do what you gotta do.

    Deep breath, and good night. Don't let the moldies bite your ass. :0

  29. >Anonymous, Incline Village was ME. CFS has proven an inadequate and harmful depiction of it. New findings do not require any illness to be renamed and redefined. Even if a cause is found, many illnesses aren't changed. Lyme didn't change to Borrelia disease.
    Jeri, biotoxins have been talked about. But there are those for whom it is not an issue, and many are not able to throw everything away and move to the desert and live in a tent. It may be that XMRV is causing the disruption of the immune system that in turn causes allergies/sensitivities.

  30. >Jeri,

    I don't know how to say it any clearer. I DO NOT DISCOUNT THE ENVIRONMENTAL COMPONENT (NOT JUST MOLD) AS A MAJOR CONTRIBUTOR TO THE PATHOGENESIS OF THE ILLNESS. That has nothing to do with the inappropriate behavior by the proponents of this particular theory. I have no idea why the outbreak at Lake Tahoe has generated this bizarre dynamic within the community. Other things were noticed in Lyndonville. My understanding is that all the children who got sick initially drank raw milk products from the same goat. "Ick" didn't seem to be a factor there. Do you think it was a different disease?


  31. >Jamie, I know you hate the role you have right now of closely policing the blog and then having to defend your actions, but I really think it's just a stage, and things will get better. The vast majority of us, I believe, are very grateful to you for what you are doing, both in maintaining the blog and opening it broadly to comments, and in stopping the abuse and domination of the blog by a couple of people (no matter what their viewpoint). I don't think you need to defend your position on environmental factors (or anything else), because this blog problem isn't about whether or not mold is a factor, it is about courtesy, respect, self-control, and appropriate engagement in a discussion. A couple of people on this blog have been treating it as though they are spammers in an advertising campaign, flooding the site with repetitive posts about the "product" they are pushing. It's not the topic that's the problem, it's the method.

  32. >Thank you, Agatha. Very well said. I agree, it's a stage. Something very valuable is happening here and we won't let a couple of people with a separate agenda spoil it.


  33. >Thanks again Jamie, is that true about the goats milk? Could that have carried something like XMRV?
    I guess there are quite a few of us, who were brought up on raw mild products. My Dad milked our cow every day too.
    So the thought that has been going round in my head for a long while now, is this, if we patients all put our medical history into a computerized data base, would it pick up a common thread?


  34. >I think what we are assuming, those of us who think XMRV is the big player on the board, is that if you get immune suppression and dysfunction, then anything else is going to be worse – response to mold toxins, exposure to raw milk bacteria, exposure to mycoplasma (manmade to be more harmful), tick borne pathogens, plain old Epstein Barr or c. pneumonia. You name it, with a retrovirus underlying it you are not going to recover. If you read what HIV looks like you will see the similarities.

    BTW, on a side note, I visited Hawaii for a week once and was about as sick there as any place on earth. Furthermore, I live in the desert yet we have public buildings including the airport which have been contaminated with stachybotrus.

    Let's just hope a retrovirus turns out to be the key. Maybe then we can start to get diagnosed, treated and recover.

  35. >I agree with Agatha's comment. There may very well be something in the mold theory but this is not the place to keep bashing on about it. Especially inappropriate when you've been asked repeatedly not to. No matter how valid your point, it just becomes rude and disrespectful to the author at that point.

    I basically visit this blog to live vicariously through Jamie's experience with ARV treatment. She and others who are trying them are the closest thing to a clinical trial we have right now so this is valuable feedback. This is also a great place for us to share useful information with one another. It is not the place to shove our theories down one anothers' throats.

    I don't think anyone is suggesting that Lisa and Erik keep quiet about their opinions on toxic mold, just that they air them someplace where they have an interested audience. A reasonable request. Personally, I find Lisa's posts interesting if somewhat off topic but generally desert forums once Erik shows up on them because his MO seems always to be to hijack discussions and repeat the same thing over and over, while not really engaging in any particularly meaningful discussion, or answering questions directly. It's beyond tedious and raises the issue of credibility for me.

    I'm not sure why the preciousness about the use of the term OCD here – it IS a type of obsessive compulsion to say the same thing over and over and over again and to post the same excerpts again and again(and out of their original context)to prove a single point.

    Part of the reason why people are not interested is because of the preaching to the converted factor. Many of us agree (including the blog author) that environmental issues may be key to the illness. It needs to be kept in perspective though! Avoidance of many things, not just toxic mold, effects improvement for many (sometimes drastic improvement), but for others not. This must mean that those things share the ability of toxic mold to make you very sick, lessening its importance over other factors surely? And how do you account for the reported cures in the Group A patients in Martin Lerner's trials who were treated with long term Valcyte for Herpes viruses (no co-infections)if mold was their primary problem?

    Also, you're not going to get much sympathy on the not being listened to front here; you're speaking to an audience of people for whom not being heard is a major part of the distress of their illness. What makes you feel more entitled to be heard, or feel wounded for not being heard, than anybody else? As the kids say, "suck it in". Start your own blog or do an Annette Whittemore and fund your own research.

  36. >well said, paula. that is exactly what i believe is going on. as dr dj has said previously, and many of us believe, it's aids with the hiv. compare and it's like, duh! mold symptoms can't come close to describing what is happening to me. i hope the spamming and challenges stop. all of it, from whatever source. it makes us sicker.

  37. >

    This article really caught my attention, particularly in reference to the MLVs blocking methylation. Now that starts to put some big puzzle pieces in place to explain why, rather than "subsets", we have patients who are immune-impaired and thus subject to attack from whatever pathogens happen to be extant in their inner or outer terrain.

    The article also presents a not-entirely-sideways picture of th hows and whys of the political/scientific resistance (almost pathological in itself) to acknowledging the MLVs as scary, infectious, devastating agents–so few people like to admit they made even a trivial mistake, let alone one on this scale. Read the link if you haven't yet–there's some blow-it-open stuff in there,

  38. >Hi leela–

    The MLV's blocking methylation makes total sense to me. I have been taking the methylation supp's more regularly for the past 2 months. In addition to triggering detox symptoms, I've also had recurring flu-like symptoms while on the methylation protocol. When I take a rest from the supp's, all the symptoms ease up a bit. I need that break at times. When the detox gets too overwhelming, I use the TD-glutathione. AMAZING stuff! I didn't know how depleted I was before I actually tried it. MY liver is very happy with that.


  39. >Jamie-

    Are you saying that you think that the "moldies" may be right?

    I didn't realize that, if that's what you're saying.

    Should I look for mold in my house? What should I do if I find it? What would you do, if you found mold in your house?

    Is there a possibility I might get better if I moved to another town?

    I don't care who says what. I just want to get well.

    Thank you,


  40. >

  41. >Myalgic Encephalomyelitis: International Consensus Criteria Source: Journal of Internal Medicine
    Date: July 2011

    Myalgic Encephalomyelitis: International Consensus Criteria
    Bruce M Carruthers MD, CM, FRCP(C), Marjorie I van de
    Sande BEd, Kenny L De Meirleir MD, PhD, Nancy G Klimas
    MD, Gordon Broderick PhD, Terry Mitchell MA, MD, FRCPath,
    Don Staines MBBS, MPH, FAFPHM, FAFOEM, AC Peter Powles
    MRACP, FRACP, FRCP(C), ABSM, Nigel Speight MA, MB, BChir,
    FRCP, FRCPCH, DCH, Rosamund Vallings MNZM, MB, BS, MRCS,
    LRCP, Lucinda Bateman MS, MD, Barbara Baumgarten-
    Austrheim MD, David S Bell MD, FAAP, Nicoletta Carlo-
    Stella MD, PhD, John Chia MD, Austin Darragh MA, MD,
    FFSEM. (RCPI, RCSI), FRSHFI Biol I (Hon), Daehyun Jo MD,
    PhD, Don Lewis MD, Alan R Light PhD, Sonya Marshall-
    Gradisbik PhD, Ismael Mena MD, Judy A Mikovits PhD,
    Kunihisa Miwa MD, PhD, Modra Murovska MD, PhD, Martin L
    Pall PhD, Staci Stevens MA


    The label 'chronic fatigue syndrome' (CFS) has persisted
    for many years because of lack of knowledge of the
    etiological agents and of the disease process. In view of
    more recent research and clinical experience that strongly
    point to widespread inflammation and multisystemic
    neuropathology, it is more appropriate and correct to use
    the term 'myalgic encephalomyelitis' (ME) because it
    indicates an underlying pathophysiology. It is also
    consistent with the neurological classification of ME in
    the World Health Organization's International
    Classification of Diseases (ICD G93.3). Consequently, an
    International Consensus Panel consisting of clinicians,
    researchers, teaching faculty and an independent patient
    advocate was formed with the purpose of developing
    criteria based on current knowledge. Thirteen countries
    and a wide range of specialties were represented.
    Collectively, members have approximately 400 years of
    both clinical and teaching experience, authored hundreds
    of peer reviewed publications, diagnosed or treated
    approximately 50,000 ME patients, and several members
    coauthored previous criteria. The expertise and experience
    of the panel members as well as PubMed and other medical
    sources were utilized in a progression of suggestions/
    drafts/reviews/revisions. The authors, free of any
    sponsoring organization, achieved 100% consensus through
    a Delphi type process.

    The scope of this paper is limited to criteria of ME and
    their application. Accordingly, the criteria reflect the
    complex symptomatology. Operational notes enhance
    clarity and specificity by providing guidance in the
    expression and interpretation of symptoms. Clinical and
    research application guidelines promote optimal
    recognition of ME by primary physicians and other health
    care providers, improve consistency of diagnoses in
    adult and paediatric patients internationally, and
    facilitate clearer identification of patients for
    research studies.

    (c) 2011 The Association for the Publication of the Journal of
    Internal Medicine

  42. >Hi Tia–

    I got the TD (transdermal) glutathione through Lee Silsby pharmacy in Ohio. They cater to autistic children and have very clean products. You need and MD's or ND's prescription. It has helped me a lot with the MCS symptoms, much more than the N-A-C which I had taken for many years prior.

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