The Lancet Infectious Diseases just published this letter:
Mouse viruses and human disease. Magiorkinis
Once a virus is endogenised, it is forced to follow the evolutionary rate of the host. Since XMRV is integrated in cell-lines the virus evolution is restricted to the host’s pace of evolution, and viral descendants have none or minimum sequence diversity. Thus, if a contaminated product, previously cultured in cell-lines, is administered to people then the infections would provide the evolutionary patterns reported by Hue and colleagues. If the immunological data reported by Lombardi and colleagues are correct, then we need to trace the common source for these infections to prevent possible public health concerns. Products from cell-lines should be the first candidates.
Good news, though I think his conclusion about person to person transmission is incorrect, based on the epidemiology. At least it says that a few people in the scientific community, including the editors at The Lancet, are thinking about what we need them to think about: Where did it come from? How did we get it? A big step up from: Is it there?
I am still responding to the firestorm brought on by my use of the words “entitlement” and “unsympathetic”. I am not a professional writer and the printed word lacks affect, though I’m pretty blunt in person too. Words can be taken out of context as sound bytes, as happens when one talks to reporters. I notice that there is a tendency for some people to fixate on a particular sentence or phrase. It’s scary, but all I can do is ask that everyone please take it all in the spirit it’s offered.
Two important clarifications. I did not in any way mean to imply that the government should not be on the hook for figuring it all out, or that there may not have been criminal events that took place at the CDC. I actually think it likely that crimes against humanity have been committed. Also I was not trying to minimize the neglect and abuse to which we have been subjected. Everybody knows how I feel about most doctors. All covered in many previous blogs. I was talking about how we behave and how we appear to caregivers, doctors, scientists, the media. A separate issue.
I say “we” because it happened to me. It is the interface between the physical and mental, physiological and psychological. The disease brings out the worst at times and that is a piece of what leaves us alone, whether there’s still family around or not. I’m writing about it because I found a way out, at least for the time being, and it is helping me to minimize my own suffering. A spiritual perspective and positive attitude help. Helping helps, if there’s anything at all that you can do. Now we can even explain the physiology of why that might be true with respect to a stress activated retroviral infection. I am not religious, so that isn’t where it’s coming from. Toni Bernhard wrote about it in her wonderful book How To Be Sick, and in this clear interview about suffering, and our resistance to it. Lots of people have figured it out. The Buddha said life is suffering (not exactly, but close enough). Then he outlined the way out. I’m not a Buddhist. Not even a Jewish Buddhist. I’m talking about what may work for alleviating suffering, even practically speaking, like all the things on my list of things to consider.
Many people have expressed concern for my health and I am profoundly grateful for your good wishes. I am holding up well, maintaining my usual state of poor health. It is wonderful to be useful again.
>"I am holding up well, maintaining my usual state of poor health." LOL, I love that irony and am going to steal that answer when appropriate.
>OK.Marcie Myers again here to CORRECT SOME MISINFORMATION that I just gave out. Having just spoken with Dr. Lapps research coordinator to be sure that I had it right this time: the current study underway is NOT a double blind placebo study. That one is forthcoming but don't know when. The GOOD NEWS is that anyone accepted to this study WILL BE GIVEN THE Ampligen regardless of their XMRV status. However, Dr.Lapp is not a Medicare provider as is the case with so many others which in my case will mean that my BC/BS will also not pick up certain of the charges (one exception is the cost of labwork). The cost is $119.81 PER infusion which are given twice weekly. The cost for the Ampligen itself is $2400 for 8 weeks (ie 16 infusions)which I think breaks down to $150 per dose plus the $119.81 infusion fee. Patients will pay in full when they receive services but given a HEPA form to send to their insurance companies. So, if any of you are lucky enough (in this case) to NOT have Medicare as primary and DO have another policy, well, you win the prize. All hail to whoever you may be! I still must encourage all of you who can afford this somehow to please participate in order to see an end to this Ampligen issue. 22 years and counting. Enough!!I apologize and hope the above will have cleared up confusion created by moi. And stirred the pot a bit with thought.
On another subject, I feel that we have a perfect opportunity to enlist the public's help. How?? By getting out the info that 7% of our banked blood in the USA is XMRV+ for which they are not yet able to test for to eliminate. My personal idea is via PSA billboards(which are at a cost-only rate. $250 in Augusta, GA. All but the sickest can contribute by checking prices in YOUR area and letting the MCWPA know as we'd need their non-profit status for the PSA pricing. And THEY are in serious need of monetary contributions to continue with the patient-driven media drive so PLEASE give ANY amt. you can). I feel also that this idea would be more effective if CFS were NOT the focus but instead on the fact that they, the public, risk a 7 out of 100 chance to be given XMRV+ blood and hope it will create a public outcry driven by their own fear. Just maybe we could see "them" do some of the work for a change. Of course, this info could simply be mailed out to various media, govt. officials, etc. I realize this is not the purpose of this blog site but one must seize the opportunity. Carpe Diem. Forgive me, Dr. Jamie, for digressing. And, people, I'm a "nobody" just like the rest of us. One of a million. But one million nobodies can make a huge impact IF each one teach one, each one reach one, even if only to phone your local billboard companies or ask a friend or family member to do it. Sorry, guys, if I'm not counting the rest of the world with CFS but I've no "numbers" to use. My bad. Inform me and the other one million Americans. Because it is the WORLD's stored blood that is endangering the public.
Still The Warrioress, slosouljourn@live.com
>Oh dear – Jamie, you've said some profound things as usual in this blog. I really appreciate the perspective that at least the Lancet is now questioning where XMRV came from rather than whether it exists.
But I'm in fact laughing out loud because, like Jill N, what jumped off the page at me and what I plan to reuse is "I am holding up well, maintaining my usual state of poor health." I think you've coined a new classic phrase.
>Grant wrote to Erik:
Dude, you've been through a lot and it seems you have a lot to contribute to the discussion. I just wish I didn't have to struggle so much to understand your points better.
*
I’m going to explain things as clearly as I can. It will take a couple of posts though.
*
Putting causal theory aside, here is what we know.
A high percentage of people with ME/CFS (Canadian Criteria) have a hyperreactivity to a variety of biotoxins, including toxic mold and toxic cyanobacteria. We believe that percentage to be 100%.
The hyperreactivity is like some people have to wheat, except much worse. Even an infinitesimal amount creates a hyper inflammatory response that knocks the whole system off balance. We get the same reactions to these biotoxins as normal people, except that even tiny amounts trigger them.
In 1980, Erik was living in the San Francisco Bay Area. He already knew he was heavily influenced by mold in buildings. This was long before there was even one article about toxic building mold being a problem to humans in the medical literature or in news media.
Erik started to encounter a substance outdoors that was hugely worse than any mold in buildings. He first encountered it at Berkeley, and then in other places throughout the Bay Area. He witnessed people drop dead of heart attacks when exposed.
(Note that shortly after this was about when Carol Jessop started seeing serious cases of this illness in the Bay Area — read Osler’s Web.)
He also got hit with it when hang gliding, above a forest that had been treated with fire retardants.
In mid 1984, Erik found that this same outdoor substance began being present in Incline Village and Truckee. It came mostly out of sewers.
In late 1984, a weird “flu” went through town. Erik observed that those people who were living in moldy buildings or getting a lot of exposure to this outdoor substance were more likely to get the flu and much more likely to stay sick if they did get it.
After getting the flu himself, Erik’s reactivity to both toxic mold and this outdoor substance went up tremendously. Even tiny amounts of exposure to the outdoor substance gave him all the horrific symptoms described in Osler’s Web. Eventually he found that if he avoided both mold and the outdoor substance — using the protocols he’d learned in the military to deal with nuclear radiation — he could be basically well. If he stopped avoiding, he got sick again. He started climbing Mt. Whitney on an annual basis to prove how well he was.
His observations were that both mold and this outdoor substance affected other people in his cohort (the one used for the WPI “Science” paper) in exactly the same ways that they did him.
>(Continued from above)
In general, toxic mold gives “neurasthenia” type symptoms (fatigue, cognitive slowing, etc). The outdoor substance gives the weird symptoms described in Osler’s Web (and that also are associated with the disease Amnesiac Shellfish Poisoning, caused by the cyanobacteria toxin domoic acid).
The outdoor substance is much more present in some places than others. It is still present in extremely concentrated form in scattered places in the Bay Area and the Lake Tahoe area.
People in these locations who have CFS (defined by the Canadian Criteria) generally have extremely severe and weird symptoms. People who have CFS who live in certain other locations (e.g. Wichita, the Caribbean) have milder symptoms or can even have their illness spontaneously disappear — providing they’re staying out of moldy buildings and not dragging around lots of contaminated stuff.
Jamie commented in her last post that “We don’t know why some people get so sick and others don’t.” Our suggestion is that it is exposure to this particular outdoor substance that transforms the disease from mild to a just-barely-living hell.
Erik has been trying since 1980 to get doctors and researchers to look at this substance. Within the CFS community, only one doctor (Keith Berndtson of Park Ridge, IL) has taken the time to query carefully. Erik’s been exchanging emails with Jamie for years now, trying to explain and to talk her into going to take a look at the “effect” for herself. So far, she’s not done that — even though she now is in Reno on a regular basis.
The main reason that CFS doctors give for ignoring both toxic mold and this outdoor substance is that “it’s not the cause.” The idea that patients could avoid being in horrific agony merely by avoiding it (and there are ways to avoid it that don’t involve bioweapons protocols or living in a tent in the desert) seems not to register. As a result, patients continue to suffer infinitely more than they would have to.
I don’t know what we have to do to get CFS doctors to pay attention to this phenomenon. It doesn’t matter how many cases we get of really sick people who get better from avoiding it. It doesn’t matter how many articles on toxic mold and toxic cyanobacteria there are in the literature. It doesn’t matter how good the theoretical explanations, or how much Erik is proven right on all the other original-to-the-world things he said 25 years ago. It doesn’t matter if I say it in academic language, or he says it in straightforward language, or he says it in cryptic language. It doesn’t matter if we’re nice or confrontational or logical.
CFS doctors don’t look. CFS doctors express no interest. CFS doctors ignore the whole topic, and go on prescribing drugs and supplements that (especially for people getting a lot of exposure to this outdoor substance) do absolutely nothing.
And then they say that they’re practicing in the tradition of Osler and listening to the patients.
No one says that anybody should take Erik’s word, or my word, or anyone else’s word. But they should at least LOOK at it.
Shouldn’t they?
A question, of course, is what this toxin is. The WHO recently has expressed interest and, perhaps, finally will figure it out.
In the meantime — if people with this disease choose to live in the midst of it and suffer incredibly as a result, that’s their choice.
But it seems like doctors at least should be telling them about it, so that they can make an informed choice.
Shouldn’t they?
>So how do we avoid this mold?
>Lisa, Erik,
"Outdoor substance"? You have definitely lost me there. It seems unlikely you will ever get any serious attention to this line of thinking. I gather from what you have written so far that this would be a substance that only Erik can detect reliably? We know it's there because Erik says so? Good luck with that.
>It’s our observation that anyone with CFS can learn to detect the presence of this outdoor substance or of mold in buildings, and that (when contamination levels are great enough) many healthy people can learn to do so as well.
(Another source of biotoxin exposure for some people is the water supply, if it is periodically contaminated by cyanobacteria from Hazardous Algal Blooms. Check the source.)
One reason that people have a hard time identifying these toxins in their environments is because they are masked to them. It’s the same principle as gluten exposure: if you eat wheat at every meal, your body doesn’t know what it’s like to be free of it. As with uncovering a gluten reactivity, a withdrawal-reintroduction trial can be effective.
Another reason is that people always attribute the effects of these toxins to something internal, and don’t even consider the idea that something in the environment could be responsible.
Initial exposure symptoms to biotoxins tend to be unlike those experienced with other chemicals, so it’s confusing. For instance, especially with the outdoor substance, there can be a sudden inexplicable desire to commit suicide. Or other kinds of inexplicable emotions may emerge — depression, rage, anxiety, paranoia, loss of self-confidence. Or a “sensory storm” panic-like attack can set in. Or there can be a weird memory loss (like the inability to drive or remember how to get home), or a stabbing sensation in the chest, or heart palpitations, or a need to lie down, or severe trembling, or chills, or a sudden increase in heart beat rate or blood pressure.
There are longer-term effects from exposure to these biotoxins as well. These are just a few warning signs.
Even if people cannot immediately do a trial in a clear location, they often can get pretty far just observing how their symptoms change in different places and considering whether something in the environment might be triggering them.
One tricky factor is that levels of this outdoor biotoxin in particular places can vary a lot from moment to moment. Generally it is more concentrated at times of dropping barometric pressure and during the winter months, for instance. Wind currents can cause it to be a problem in some places only at certain times.
Cyanobacteria (HAB) contamination of the water supply tends to come in pulses as well.
I can only speak with confidence about the situation in the United States, unfortunately. It seems there may be a different sort of an issue going on in the UK, and I don’t have enough reports yet to make any conclusions about it.
Watching for changes in symptoms and then considering whether environmental factors could be playing a part is a good start in moving toward effective avoidance. Because heartbeat rates often spike upon exposure, some people have found the use of a heart rate monitor to be helpful for this purpose.
Best,
Lisa Petrison
lisapetrison at yahoo
>Lisa and Erik,
I have listened to your ideas with an open mind for a long time. I think we can all agree that biotoxins, certain molds, blue-green algaes, ciguaterra, who knows, maybe even chemtrails, are bad for people, especially people with CFS. There are clearly people for whom mold was or is their trigger, or one of their triggers. It is just as clearly not part of the picture for lots of other people, including me. You are sounding a lot like all the other people who "know" how to fix me. I am not even slightly MCS. I have no food sensitivities. I've explored all these things ad nauseum. I live in the desert, no leaks in the house. I've lived in 4 houses in 3 different states since I got sick. I travel now, and it doesn't make any difference to me. I barely react to the Juniper pollen happening now that makes everyone else miserable. I know what my triggers are and it doesn't fit your theory. But you seem to think I should abandon my house and belongings to live in a tent? Leave naked. The stress would probably kill me. Share your ideas, but please cease and desist telling others what they should do.
Thank you,
Jamie
>Hi Jamie,
Every CFS patient — and every patient in general — has the right to choose what treatments they will and will not pursue. I certainly respect your choices in that matter, insofar as you are deciding for yourself.
On the other hand, insofar as you are planning to work as a CFS doctor, the situation changes.
Then you are not just making choices about your own well-being. You are screening information for your patients.
There is enough evidence about this phenomenon that it warrants being taken seriously by any medical professional planning to treat this population.
Certainly there's far more evidence that it's a major factor for many/most/all people with CFS than there is evidence that XMRV is transmitted by vaccine or that antivirals are helpful for anyone, for example.
If you were taking it seriously, you wouldn't have left it off your laundry list of possible treatments.
It deserves to be taken seriously.
Best, Lisa
>I didn't leave it out. I consider it part of MCS and other sensitivities. It behaves in pretty much the same way. Avoiding things that make you sick is a good idea.
Lisa, Lyme patients think Lyme is the whole story. You think mold is the whole story. I think retroviruses are at the bottom of it. We can agree to disagree.
A good doctor doesn't tell patients what to do, but discusses options and assists in the decision.
Jamie
>Even if we accept the premises that a) mold and other biotoxins are no more problematic for CFS sufferers than other chemicals (which I do not believe), and b) mold and other biotoxins are issues only for some CFS sufferers (which I also do not believe), there is another factor to consider.
People who are being affected by manmade chemicals usually know that is the case. Thus, they avoid them spontaneously.
People who are being affected by biotoxins almost never know that it is the case. Even when they are living in horrendously moldy homes (as I was), they don't know. Even when they are carried to hospitals on stretchers, they still don’t know.
Thus, just saying, “Avoid what’s bad for you” is not enough.
Rather, CFS doctors who want to make certain that their patients are not unknowingly being affected by biotoxins will need to take a particularly proactive stance in bringing them up and suggesting investigation.
It would be interesting to have a discussion on how that might be effectively implemented in a medical practice.
Best, Lisa
>Perhaps tell us how we might check our homes short of running away, if we don't perceive a problem. Spore counts? I've opened walls to look, and not found anything. Please edify us.
Jamie
>Like Jamie, I'm lucky not to have had MCS, food intolerance or mould problems, so far anyway. I'm CCC ME with other validation. So it is not everyone that needs to be careful, but there certainly seems to be a group that do.
Thanks for doing what you do, Dr. Jamie.
>Here are my current views on this topic. Erik’s may be totally different.
It’s clear that it’s neither realistic nor desirable for any but a very few CFS patients to pursue extreme avoidance, regardless of how well they conceivably could get as a result of it. It is much too hard and often requires giving up far too many things.
Unfortunately, there is no testing that will tell people accurately even whether they’re living in a moldy house — much less whether they’re getting exposure from the outside air or from their belongings.
I thus think that a good start may be to do the following.
1. Look at trends in patients’ health situations.
If patients are moderately ill and improving substantially as a result of other treatments, I would tend to guess that they likely are not getting a horrific amount of any kind of biotoxin exposure. Of course, improvements of any sort are always welcome, so looking to the environment may still be worthwhile insofar as they find that thought attractive.
If patients are very ill or do not improve no matter what other treatments they try, that is a clue that perhaps the environment is in some way really problematic and overriding everything else. I thus would consider options that involve avoidance — for example, moving from a really moldy house in a really bad place (say, Ann Arbor) to a decent apartment in a less bad place (say, Boulder), leaving the contaminated stuff behind.
That kind of change obviously is stressful, expensive and challenging to pull off. Some people ultimately have found the benefits to be worthwhile though.
2. Start considering the idea that symptom changes could be the result of environmental exposures.
Many people with CFS are very good at figuring out the effects that drugs, supplements, foods, stress, exercise and other stimuli have on them.
Doing the same thing with environmental biotoxins is no more difficult. It’s just a matter of considering the idea that some kind of “invisible odorless poison gases” could be having effects (and, in particular, acute emotional effects), rather than dismissing it.
Sometimes this is not a matter of just feeling better or worse, but different.
For instance, when I was living in my moldy house, I occasionally would stay overnight at the home of a friend that (I realized later) was exceptionally good in terms of biotoxins.
In my house, I always was in “agitated exhaustion” mode. At my friend’s house, I slept like the dead — 16+ hours a day. Getting out of the bad environment allowed my system to go into repair mode, it seems.
Understanding these kinds of surface weirdnesses seems to me crucial in terms of helping patients to figure out how they use the “locations effect” to help them, especially when nothing else is working.
Figuring out how to incorporate this mindset into a clinical practice is difficult though. Thanks for your willingness in terms of opening up a dialog on thinking through this issue.
Best, Lisa
>From talking to both Lisa and Erik, I've gotten the impression that neither of them are ruling out that there is an infectious retrovirus at root or near the root of our illness. The fact that they are trying so earnestly to get their point across about "mold" and "mold toxins" often makes people forget this.
Everyone has a particular paradigm that they are most attached to — true. However, when I spoke with Lisa and Erik, I got the impression that their paradigm is as open-minded as any paradigm that I've come across from people that have spent as much time as they have investigating this illness. You will be hardpressed to find anyone who has talked to as many CFS patients as Lisa. She is functionally pretty recovered today, probably enough to work full-time, yet she spends most of her time interviewing and even traveling across the country to meet with patients. Erik has spent 20 years doing the same. They have case study upon case study backing up her viewpoint.
I am not saying they are more correct than Jamie or vice versa, but certainly I think their manner of delivery sometimes is a disservice to the due diligence they've done to get to this point. In my mind, they clearly have an important point to make, yet in the end it always comes down to "Mold toxins? Why they're just like MCS"
In my mind, a contributing factor to the negative response to Lisa and Erik is the fact that believing what they're saying is true makes life awful inconvenient. It is different from all these other treatments we're talking about because it is evasion-based, rather than attack-based. An evasion-based protocol for most people means lack of control over their illness. It is much more convenient to believe we can take supplements or drugs and stay put in our homes to attack this illness rather than spend our time and energy avoiding contamination. It is awful inconvenient, makes your peers think you're crazy, and can even break your family apart if they're not ready to take the same leap of faith.
It is awful inconvenient– true. But if we're going to give this theory the amount of respect it deserves, we need to remove this inconvenience from the equation and look at it purely from a scientific viewpoint.
That's really the only way we can even begin to put "mold avoidance" on a level playing field as antiretrovirals and immunotherapies.
– joey
>Sorry, Joey, Lisa, and Erik, but "outdoor substances," sudden suicidal feelings based on location, Ann Arbor being "bad" and Boulder "good," and all this gobbledy-gook is just plain nonsense, to my mind, and certainly has nothing to do with this serious illness. I hate having the CFS blogosphere being contaminated by this nonsense. I hate having this forum, which is fortunate enough to have Jamie and Ali, along with many other interesting commentators, being overtaken by this folly.
We are talking about a serious illness with devastating consequences and with a fairly clear definition. It is patently not caused by untestable mold or mysterious "outdoor substances" or little green men, any more than cancer or heart disease are caused by these things (and you probably think they ARE caused by these things). Any illness can be made worse by allergies or co-infections, and CFS has no special corner on this, but to make such things central is just ridiculous.
How on earth are we ever going to get serious attention for our REAL disease if no one will stand up to this kind of wacked-out nonsense? PLEASE STOP and let the discussion of CFS move forward. Erik, I'm sorry, but you have absolutely no claim to being a more definitional case than any other person, because you are only one person, and a rather "special" one at that, it would appear. You can grandstand all you want, and Lisa can struggle to make you sound more plausible, but the more the two of you talk, the less sense you make and the more apparent it is that we need to move on.
OK, that's it. Sorry to be so bald, but I feel like it needed to be said. Now I've said my piece on this subject. You can rail against me and my logic all you want, but I'm done engaging this BS.
>Stages of Mycotoxicosis
Dr William Croft
http://mycotoxicosis.blogspot.com/2009/10/stages-of-mycotoxicosis-following-is.html
>I'm going to post this in two parts.
There seems to be a bit of confusion here that needs to be cleared up.
In 1984, Erik walked into Paul Cheney’s office and told him that he had an “inexorably increasing reactivity to mold that gets progressively worse no matter where I live or how well I take care of myself.”
At the time, there was absolutely nothing — not one paper — in the literature about the idea that toxic mold in buildings could have an effect on human health. So we perhaps can reasonably choose to forgive Cheney for not knowing what to do with that piece of information, even if his not pursuing it proactively was not exactly in the Oslerian tradition of listening to the patients.
Today, there is abundant information in the literature that toxic mold is a poison.
It’s not an allergen or irritant. It is a poison.
It is not a chemical with the sort of toxicity that any sort of manmade chemical that people are likely to encounter in their day-to-day lives has. It is much worse.
Toxic mold, like CFS, has faced a dearth of government research funding. Nonetheless, there is plenty of literature that suggests that it is far more dangerous than any non-biotoxin chemicals that people encounter outside of industrial settings or, for instance, when nuclear reactors melt down.
Even with our pro-business governments, nothing like this stuff ever would get governmental approval for widespread use. And _certainly_ it would not for domestic home use.
Thus, brushing it off as an allergen or as just another part of MCS is inappropriate.
There are some individuals, such as Ritchie Shoemaker, who have suggested that toxic mold is the whole story in CFS.
I personally do not agree with that. Certainly, toxic mold has been shown conclusively to have the potential of creating CDC (Fukuda) CFS, and it seems to me reasonable to think that a high percentage of people qualifying for that diagnosis may have mold illness (regardless of whether they realize it).
“Real” ME/CFS (Canadian Criteria or Incline Village) is something more specific. I don’t see in the literature enough evidence that toxic mold, in itself, has the potential of creating all the abnormalities of the disease.
What instead seems to have the potential of going on is that the various factors associated with toxic molds such as Stachybotrys (inflammation, oxidative stress, cortisol stimulation, glutathione depletion, immune cell problems) are serving to activate various pathogens such as HHV6, EBV and XMRV. Once activated, those pathogens may create large amounts of damage — especially in combination with additional mold exposures — that the mold toxins themselves would not create on their own.
Would XMRV or other pathogens activate if it weren’t for the terrain issues caused by the mold? I don’t have speculation on that. What I do think is that it’s unlikely that they would go active as much in someone who was not getting any significant toxic mold exposure, compared to someone who was getting a lot.
And considering that the whole purpose of antiretrovirals is to get the virus to not be as active — not living in a moldy environment is an antiretroviral treatment.
Thus, it is wholly appropriate for discussion on this blog. Especially since, based on the evidence we’ve seen so far, it’s far more effective for this disease than antiretrovirals in pill form.
All of this is just common sense. Mold toxins lead to inflammation. Inflammation leads to viral activation.
If people aren’t focusing on this as a particularly important component of this illness — especially considering the large number of cases of people who state that their illness began with a toxic mold exposure or who have recovered as a result of avoidance of it — they’re just not paying attention or are being purposely blind.
In 1984, Cheney had an excuse for not seeing it. Now, CFS doctors have no such excuse.
>(Continued)
To Erik’s point about his cohort being “special”:
The reason he keeps bringing this up is because even with the effects of the toxic mold in combination with the effects of various pathogens, there STILL is not any particular reason to think that the effects of CFS should be as severe and weird as the ones that his cohort experienced.
Those severe and weird effects that are associated with the outdoor substance present in Tahoe and other locations to a particular effect have, however, been shown to be caused by various cyanobacteria toxins, such as brevetoxin or domoic acid.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2579735/
http://en.wikipedia.org/wiki/Amnesic_shellfish_poisoning
That is why I suspect that this outdoor substance may be some sort of particularly problematic cyanobacteria toxin that has mutated to be able to grow in certain sewer environments. I can’t say that for sure until someone goes looking for it and tests it, though.
The other question here is why at least some of us are so weirdly reactive to even small amounts of these toxins. That is a topic for another post.
In conclusion, at the very least, there should be no argument that living in a moldy home is a very bad thing in general, and particularly for anyone with CFS.
That’s consistent with the literature as well as with a multitude of “anecdotal” case studies.
Thus, it seems that CFS doctors have some sort of obligation to proactively bring up the idea to their patients that living in a moldy home may be contributing to the CFS problems — rather than mentioning it in an offhand way at the bottom of a list as just another irritant or (much more frequently) leaving it off the list entirely.
Following is a selection of abstracts that I pulled together from the medical literature describing the effects that various sorts of toxic molds can have. There are 104 pages, so I had to split it up into two parts.
https://docs.google.com/leaf?id=0B7A3lHR1hqW5ODlkMTVkOTQtZDM1Zi00Mzk1LTgzOWYtZjM2ZDQ4OWQ5YzNj&authkey=CK_-85sN&hl=en
https://docs.google.com/leaf?id=0B7A3lHR1hqW5MmVjODFjOTYtYWYxYi00N2Q1LWI3OGEtNmQxNDRjNDc0ZjNm&authkey=CKOZz_8K&hl=en
Please let me know if there are any problems opening the files.
Note that almost all of these thoughts are Erik’s ideas, not mine. I’m mostly just organizing and, a little bit, expanding on them.
Best, Lisa
>Thank you Dr. Jamie for putting the mold fanatics in their place. I've been sick for over 10 years and for the last 5 have listened to their crap telling people that 1) they don't M.E. but rather, 'mold illness' and 2) the only way to improve is through mold avoidance and 3) if people refuse to do mold avoidance it means they really don't want to get better.
It's the same as with others who tell us that our disease is not real.
It's time for the mold people to start their own blog/board/whatever and leave the disease of ME alone.
I would venture to say that 95% of the M.E. community is absolutely fed up with their bollock and consider them to be a bit off their rocker.
I have a close friend who listened to one of them, sold all his belongings, camped for a couple months and had absolutely zero improvement. He ended up broke but no better.
I want to thank you Dr. Jamie for putting them in their place. More people need to start speaking up. I am concerned about people who are desperate or newly diagnosed buying into their crap.
Steve
>Please do not misrepresent my stance.
I would never say such things.
Neither I or Dr Sarah Myhill suggest anything more than to propose that IF one identifies this hidden condition, it is completely up to them if they wish to pursue it.
http://drmyhill.co.uk/wiki/Mould_Sensitivity
>Help, Jamie! It feels like the mold faction is killing your blog, or at least the comment aspect of it.
>"My impression is firmer than ever that the people who have done very little are doing better than the people who have pursued aggressive or experimental treatments. Radical avoidance has worked to control symptoms for some and the stories of our mold warriors are intriguing. It's not hard to figure into the model I've proposed how biotoxins causing inflammation would activate virus and keep it activated while the exposure continues." –
Jamie
http://treatingxmrv.blogspot.com/2011/03/random-thoughts.html
>Per the reference above, it certainly sounds like Jamie is more open-minded about the possible culprits for ME/CFS than many of her readers who are blatantly try to paint anyone who says "mold" as a "faction", never mind the fact that many of these "mold warriors" are open to a retroviral cause of illness.
Read Dr. Enlander's comment to the previous blog and you will see that even this top ME/CFS doctor is open to the idea of a "superimposition on the immune system of a toxic mold" right next to a virus and genetic predisposition as possible reasons for the variable response to ampligen.
Certainly a retrovirus as a sole cause of illness is better for PR and peace of mind than multi-pronged causation (genetic predisposition + toxic mold + viral trigger) but if you're against the pushing of mold toxicity for PR purposes then say so. Many here seem to be confusing good PR with scientific objectivity.
>Hmmm this is all rather intriguing. My penny's worth of thoughts:-
1. For those of you that don't have MCS :- one study I read early on in my son's illness said that MCS typically appears at around 5 years then gets worse. It was hard to believe at the time. Unfortunately, it came right on time with a gradual shift from all-over body pain to sensitivity being the most frequent symptom (both driving cognition problems). For those of you that don't have it, I hope you never get it. It is extremely life disruptive.
2. I am surprised at the hostility shown to the idea of toxic mold playing a significant role in the illness for these reasons:-
i) it is not at odds with any other etiology being proposed including retrovirus. In fact there are multiple ways it could fit in to that etiology neatly.
ii) does no one accredit anything to this study identifying a key role for ciguatoxin (and similar)?
http://www.ncf-net.org/PressReleases.htm This came out last Aug. I assumed that it provided some facts that would eventually fit into the completed jigsaw.
iii) Most importantly, I see this mainly through observations of my son who became ill at 13 and is still ill 10 years later. He very clearly had environments / smells / pollutants that make him feel unwell. eg. chemicals, perfumes, paints. But there has always been something else. In his words things that make him "Sick, *really*, *really* sick". I've seen the descent into shakiness and babbling incoherent speech within 1-2 minutes when certain things came into his presence (or vice versa).
We ignored this for many years. But as he's gotten sicker he's increasingly come back to the question of "why does this place / thing make me so sick". We started taking him seriously about a year ago and narrowed the field as to what the cause was. It was always repeatable. I won't tell the details here except to say that his ability to "sense" (be sickened by) things we later found had a factual basis absolutely astounded my wife and I. It took us a long, long while to analyze but the common thread was mold and/or bacterial growth associated with dampness.
I can't be more specific with any surety. But the concept that some environments can have such an instantaneous "poisoning" like effect (his words) is not new to me.
I guess that's why when I discovered Erik and Lisa's posts on here I was fascinated – even if Erik speaks in yoda-like riddles :-)
I know of others with CFS and thought this over the top toxic effect of some environments was a common CFS experience. My son is probably about to start GcMAF and other treatments. But he is quite ambivalent about that for now. He has always noted he was much better when he was out of the house (previously – is now largely housebound). Over the last 2 years of getting worse his view has hardened that no treatment will help him unless he can get out of the house – where his "body can rest" "I just need rest, there is nowhere in the house my body can rest" "when I was able to go to my friends houses I was still weak and sick but not like this, my body got some rest there". Our house is not at the level of the 1-2 minute weakening shock but he feels it is the same. And its gotten worse cinciding with increasing damp problems over the last few years.
I am quite happy to be adding a few hundred thousand dollars to my mortgage to move to another house (for you folks in the US that's how much it costs down under to go the next level house up). We found a good one.
If anyone wants more details of his ability to sense toxic environments that just astounded my wife and I let me know – too much story for a post here.
Peter W
Melbourne, Australia
>Peter.
Talk… we should!
>There are people who have serious mold allergies/sensitivities, who would be "well" with avoidance. Many with ME do develop worse allergies and sensitivities over time to food, allergens, MCS etc. probably due to worsening immune dysregulation.
Naturally these people should avoid exposure whenever possible, but still, the retrovirus is probably the driving force.
Why would anyone who was well from mold avoidance spend hour upon hour on every patient blog or newsgroup, pushing this theory, based on one person's experience, which goes well beyond scientific merit or even clinical observations?
>"A high percentage of people with ME/CFS (Canadian Criteria) have a hyperreactivity to a variety of biotoxins, including toxic mold and toxic cyanobacteria. We believe that percentage to be 100%."
I am taking a wild guess that you don't have a citation for this, Lisa? How do you even know this is remotely true? How would you measure this? Bloodwork? What kind? Skin tests? Blinded exposure?
The mold theory would be interesting if not for the many many patients who have spontaneously improved, some even to the point of normal functioning, without ever avoiding mold (or knowing to). Bell, Cheney, and Peterson all have such patients in their practices. If mold toxicity was part of the underlying pathology for ALL patients then such a lack of association between avoidance and improvement would not be possible.
>In two parts.
There seems to be a bit of confusion here that needs to be cleared up.
In 1984, Erik walked into Paul Cheney’s office and told him that he had an “inexorably increasing reactivity to mold that gets progressively worse no matter where I live or how well I take care of myself.”
At the time, there was absolutely nothing — not one paper — in the literature about the idea that toxic mold in buildings could have an effect on human health.
Today, there is abundant information in the literature that toxic mold is a poison.
It’s not an allergen or irritant. It is a poison.
It is not a chemical with the sort of toxicity that any sort of manmade chemical that people are likely to encounter in their day-to-day lives has. It is much worse.
Toxic mold, like CFS, has faced a dearth of government research funding. Nonetheless, there is plenty of literature that suggests that it is far more dangerous than any non-biotoxin chemicals that people encounter outside of industrial settings or, for instance, when nuclear reactors melt down.
Even with our pro-business governments, nothing like this stuff ever would get governmental approval for widespread use. And _certainly_ it would not for domestic home use.
There are some individuals, such as Ritchie Shoemaker, who have suggested that toxic mold is the whole story in CFS.
I personally do not agree with that. Certainly, toxic mold has been shown conclusively to have the potential of creating CDC (Fukuda) CFS, and it seems to me reasonable to think that a high percentage of people qualifying for that diagnosis may have mold illness (regardless of whether they realize it).
“Real” ME/CFS (Canadian Criteria or Incline Village) is something more specific. I don’t see in the literature enough evidence that toxic mold, in itself, has the potential of creating all the abnormalities of the disease.
What instead seems to have the potential of going on is that the various factors associated with toxic molds such as Stachybotrys (inflammation, oxidative stress, cortisol stimulation, glutathione depletion, immune cell problems) are serving to activate various pathogens such as HHV6, EBV and XMRV. Once activated, those pathogens may create large amounts of damage — especially in combination with additional mold exposures — that the mold toxins themselves would not create on their own.
Would XMRV or other pathogens activate if it weren’t for the terrain issues caused by the mold? I don’t have speculation on that. What I do think is that it’s unlikely that they would go active as much in someone who was not getting any significant toxic mold exposure, compared to someone who was getting a lot.
And considering that the whole purpose of antiretrovirals is to get the virus to not be active — not living in a moldy environment is an antiretroviral treatment.
>Lisa's presentation above is the clearest I have seen from anybody who subscribes to the mold warrior hypothesis, and I do keep up with their work as much as I can.
They might be right or wrong, but it isn't really little green men. If they are onto something, I want the world to know about it. There are testable hypotheses. First up IMO is inter-rater reliability. I do know Lisa and others have put in a great deal of collaborative effort into trying to track down their substance or substances.
However, there remain biomedical questions, and there is a possible problem with conflation and coherence. There are also some issues with presentation. It has the feel of an embattled cult, and I don't think it needs to.
I am just going to tell it as I see it here. I hope they understand it's very much meant to be constructive. I want them to put their best foot forward so somebody can tackle the idea.
The following are potentially distinct phenomena, or at least enormous differences in degree:
1) Severe hypersensitivity to mold — various molds including both ordinary molds and ones that everybody fears — with severe symptoms, many of which worsen the neuroimmune disease and many of which appear to partly mimic it. I have (1). By the way, I am strongly CCC; CCC feels very watered down to me. As with pesticides and specific opportunistic viruses, not every CCC will have (1), IMO.
I have antibody titers to various molds that exceed the limits of the measuring equipment. I have internal mold and I react to external mold. I have been on antifungals and have taken other measures for more than a decade and all of that barely averts disaster. I can elaborate and clarify all of this if necessary.
2) The hypothesis that Lisa described above. I wish she would give this hypothesis a single name that is not used for anything else. IMO they should stop saying "mold" to describe the hypothesis, because that is too broad; and one of their other terms, "ick", is hardly ideal PR, although I don't care personally. Of course it's up to them. I doubt every CCC will have (2). I think Lisa says maybe they all will.
They speak of specific substances — not a wide variety of molds.
(2) seems far more specific than (1). And it does not require the characteristics of (1).
3) Very bad mold allergies or sensitivities. The general public is vaguely aware of this one.
4) Mold allergies or sensitivities that normal people have a problem with.
This isn't a perfect classification. It isn't supposed to be. It is just to make my point. I am not claiming that these are different, but they need to be considered as possibly different unless we have evidence that they are the same.
It annoys me that those presenting the (2) hypothesis have not provided consistent usable terminology that clearly distinguishes these cases. They seem unwilling to invent an unambiguous terminology and also unwilling to let others invent one to clarify.
To be continued in next comment.
>Here is part 1:
Lisa's presentation above is the clearest I have seen from anybody who subscribes to the mold warrior hypothesis, and I do keep up with their work as much as I can.
They might be right or wrong, but it isn't really little green men. If they are onto something, I want the world to know about it. There are testable hypotheses. First up IMO is inter-rater reliability. I do know Lisa and others have put in a great deal of collaborative effort into trying to track down their substance or substances.
However, there remain biomedical questions, and there is a possible problem with conflation and coherence. There are also some issues with presentation. It has the feel of an embattled cult, and I don't think it needs to.
I am just going to tell it as I see it here. I hope they understand it's very much meant to be constructive. I want them to put their best foot forward so somebody can tackle the idea.
The following are potentially distinct phenomena, or at least enormous differences in degree:
1) Severe hypersensitivity to mold — various molds including both ordinary molds and ones that everybody fears — with severe symptoms, many of which worsen the neuroimmune disease and many of which appear to partly mimic it. I have (1). By the way, I am strongly CCC; CCC feels very watered down to me. As with pesticides and specific opportunistic viruses, not every CCC will have (1), IMO.
I have antibody titers to various molds that exceed the limits of the measuring equipment. I have internal mold and I react to external mold. I have been on antifungals and have taken other measures for more than a decade and all of that barely averts disaster. I can elaborate and clarify all of this if necessary.
2) The hypothesis that Lisa described above. I wish she would give this hypothesis a single name that is not used for anything else. IMO they should stop saying "mold" to describe the hypothesis, because that is too broad; and one of their other terms, "ick", is hardly ideal PR, although I don't care personally. Of course it's up to them. I doubt every CCC will have (2). I think Lisa says maybe they all will.
They speak of specific substances — not a wide variety of molds.
(2) seems far more specific than (1). And it does not require the characteristics of (1).
3) Very bad mold allergies or sensitivities. The general public is vaguely aware of this one.
4) Mold allergies or sensitivities that normal people have a problem with.
This isn't a perfect classification. It isn't supposed to be. It is just to make my point. I am not claiming that these are different, but they need to be considered as possibly different unless we have evidence that they are the same.
It annoys me that those presenting the (2) hypothesis have not provided consistent usable terminology that clearly distinguishes these cases. They seem unwilling to invent an unambiguous terminology and also unwilling to let others invent one to clarify.
Part 2 next.
>Here is part 2:
I have seen what appears to be a great deal of conflation. I have more than once tried to clarify to no avail.
I have seen some of them throw around the word "mold" as if (1) and (2) were identical, and I have also seen them distinguish (1) from (2) as if (1) were completely irrelevant to (2).
It cannot be both. I find the contradiction to be frustrating. It is not their audience not paying attention, as one of them frequently claims. It is them not clarifying.
If they want to say that (1) and (2) are the same, then IMO they need to provide evidence.
I have seen discussions in which (1) was treated as if it does not exist or is not worth talking about. It exists. It is worth talking about. Especially because they need to distinguish from it. Or are they claiming it's the same thing? They are very unclear on this point, IMO.
I have also seen discussions in which what looks very much like (1) — e.g. moldy books causing certain strong reactions — seemed to be treated as if it were obviously (2). They did not even seem to mention the possibility that it was (1).
I sense shoehorning on occasion. I can't blame them for trying to fit stories into their hypothesis, but I'd feel more comfortable if they were a little less confident.
I always have issues with theoreticians of neuroimmune diseases who do not try to fit all facts. We have too many of those.
I think Lisa and the others could fix those problems pretty quickly if they wanted. They are capable.
I do find the way some of them psychologize their critics to be infuriating. Telling people they don't want to get better invites cold disregard. If there is one thing you don't do in our movement, it is that.
And yet, they might be onto something important.
So I am interested in their hypothesis — but there is only so far I can beat my head against the wall trying to get them to make sense. It is, IMO, up to them at this point. I don't think anything else I say will get them to clarify.
I disagree that nobody is listening to the hypothesis. This doesn't have to be an embattled cult. People are interested. They just don't want to be talked down to and they seek clear explanations of the type Lisa provided above.
How about a few more of those, Lisa?
And oh by the way, I want to try more avoidance (moderate to extreme within limits as I am bedridden except bathroom) if only I can get some detailed advice from an expert to do so. Proof that I am not "not listening". Now is a very good time for me to try it. But I don't know if anybody wants to help in that way.
Of course, this might not distinguish (1) from (2). I know I have (1). I am not so sure I have (2) (though Lisa is).
>P.S. What parts of the immune system deal with mold? Are they broken in CCC+ or by retroviruses? This is an absolutely critical question for me, and I'd like opinions from people other than the proponents of (2), as I've already asked them and they say nobody knows.
>Is this what happens to every open forum for ME/CFS? The mold nuts take over and shut the conversation down?
>Casting patients insisting on interest into a particular area as "mold factions" and "mold nuts" just demonstrates that a lot of ME/CFS patients are just as close-minded as those that think ME/CFS is of psychological origin.
How can we be expected to be taken seriously when telling researchers to be scientifically objective when we can't do the same?
>I am referring to mold factions and mold nuts because these folks are writing long, long screeds about their pet theories, not engaging in meaningful dialogue, and absolutely convinced of their theory of MECFS. They are essentially stifling other dialogue. Although perhaps there is a way of working around them, perhaps by ignoring them? Would that be more respectful? I am not close-minded, just fed up with long-winded single-minded blather from people who try to sound reasonable but fail, and who are over and over claiming that people who don't follow their lead have missed the boat. As Steve said, perhaps the mold folks here would like to start their own blog, where they can rant about it and provide endless links about it and reassure each other that they have found the answer to CFS, but leave the rest of us alone.
>No one is stifling anyone. You are choosing to be stifled by your own annoyance. Like someone said above, this is an "open" forum. As often happens in open forums, multiple topics get discussed. Whether they are relevant or not is often in the eye of the beholder. Granted this topic may be completely irrelevant to you, but if it were completely irrelevant to the author of this blog, she would've deleted all of our comments.
A number of those that have called for more research into this toxicity have said that the manner of delivery of this theory could be improved upon. I agree that Erik is often cryptic. I agree that Lisa is often long-winded. At the same time, I believe they have an important point to make. Many of us are still interested in this topic.
Those who are not can very well choose to ignore this topic. Clearly, even Jamie has shown an interest in this topic, even though it is understandable that she is limited in how much she can discuss publicly because she has a reputation to uphold. However, many of us are not in the same boat. We are not health professionals; we don't represent WPI; we only represent our own health. Hence we can get away with publicly seeking a full-on investigation of the role of mold toxicity in CCC ME/CFS.
Again, you can choose to ignore this discussion. You can spit on other patients all you want. However, don't assume that you represent everyone in your definition of "meaingful dialogue."
>Ditto.
I want this to be a blog where we can read and discuss topics related to what Dr. Jamie is writing about; working on. Not a place where I have to read through endless blathering on mold.
Please mold people, start your own blog.
I've had enough!
-Benni
>I think there are a number of us here who are expressing frustration with the long-windedness and the overwhelming presence in this comments section of those arguing that mold is the central issue with ME/CFS. Of course the idea that toxic mold is a cause (even if not the only cause) of this disease is a potentially interesting hypothesis, along with many other hypotheses. I have to say that, for myself, it doesn't map well onto my health experience, for a number of reasons, including having lived in numerous places since I got sick and the fact that the severity of my symptoms appears to have nothing to do with where I am at any given time.
I must also confess that most of those arguing for the mold hypothesis here sound somewhat "off" to me, not mainly because they believe mold is central to their (and everyone else's) illness, but because of other aspects of their arguments and writing. Their style doesn't lend credibility to their arguments.
I'm just hoping that whenever Jamie writes another of her illuminating blog entries, we can move on to more diverse topics.
>Peter. This is how it has been for as long as I've been watching this phenomenon.
I'm sure your son understands.
>Firstly, kudos to Dr. Deckoff-Jones for continuing to provide us with great information and personal experiences.
I am writing primarily because I am a former Ampligen patient. I derived zero benefits from this drug, had horrible side-effects and in a nutshell witnessed some rather bizarre things at the clinical site.
Very very high functioning patients were allowed into this study which required a Karnofsky score of I believe (don't quote me) 40-60%. The majority of patients were WELL – maybe not well enough to work but certainly could drive, 'shop till they dropped', walk, spend endless hours socializing, travelling, etc.
I did know of three SERIOUSLY ill patients who benefitted from this drug with minimal side effects. They were on it for several years.
I regret ever spending the big bucks, completely regret it. The medical care we rec'd was a joke, the office staff curt, rude and downright abusive. Patients who did not meet the criteria were allowed in this study – no kidding the results must be skewed.
Ampligen is not a panacea – I did not have HHV-6 which it apparently targets. No parameters for testing existed except for subjective questionnaires.
The doctor who administered Ampligen never ever considered other diagnoses such as Lyme, RMSP, Dengue, etc. and no testing was ever offered prior to 'signing up'for this drug.
Personally this drug *might* help people who are very functional – that's it. The rest of us are guinea pigs, left broke.
Disgusting state of affairs. Perhaps the new findings of XMRV may shed a lot of light re: what plagues us. In the meantime it's 'buyer beware'- I did my research and ended up at square one.
>This is not directly related to own illnesses- but has anyone followed the story of the bee colony collapse disorder? Lots of bee colonies have been mysteriously dying out for the past few years, with many bees found far from their hives as if they got confused. I found it interesting that one of the leading explanations for this is a viral-fungal "double punch." Some studies claim that when bees are infected with a particular virus or a particular fungus, some die, but when they are infected with _both_, many more die.
Obviously, we are not bees. But I just thought the idea of multiple pathogens working together to cause more serious illness was interesting. It reminded me a bit of the mold discussion.
>Great job! Anonymous!
We "mold people" have been looking at precisely this! The "one-two" sucker punch.
The plight of the bees seems EXTRAORDINARILY similar.
The way we see it, "science" is supposed to take ALL the pertinent evidence into account.
Not to discard clues because they've never seen it before.
They might just be important!
———————————
(As I recall, Dr Peterson told me that HHV6A was a critical component in my approval for ampligen)_
>The mold hypothesis doesn't at all pertain to my experience with this disease. Ive read a lot of schoemakers stuff tried the so called avoidance,cholestyramine, lived in different houses and states that are low mold risk and nothing has changed. However I am XMRV+. So I am giving up on the mold stuff as far as my case is concerned. XMRV or MLV's are probably the culprit. I think the next couple years will show it. A retrovirus fits to well. Always has. I think the sudden interest in MLV's by the NIH shows it. Until there are clinical trials we wont know much. We need drug development for xmrv/mlv's but I don't see that happening very quickly. I don't see the contamination politics ending anytime soon but eventually it will once the intigration sites are confirmed and then what will naysayers have to fall back on. Dont worry they will find something to criticize instead of doing responsible science. Most likely will be the same attempts to discredit individual research used currently. The fact that so many are trying to prevent the funding and research says the WPI is on to something. Send them money.
I don't doubt those of you who say the avoidance is helping you. But I don't believe it has much weight to the heart of the illness. Just my thoughts.
>To Anonymous 8:21am re: ampligen.
Thank you so much for sharing your experiences with this drug. I was hoping you may be able to expand a bit – you say that you know of three seriously ill patients who did improve but then said it *might* help those who are very functional – that's it. ARe you saying that, in your experience, it was more apt to help those who are seriously ill or those who are very functional? Sorry – just confused on this point.
Also – you mention that it "apparently targets hhv6". Could you provide some more information or background on this?
Thanks so much!