It was much easier to write this blog at the beginning when I was so hopeful of having found a solution. I still believe that antiretrovirals may be a piece of a solution, and I continue to take them. Their use needs to be explored, probably in conjunction with other things, but they are not the slam dunk we needed. However, we need not wonder for years, waiting for somebody to approve an IRB that says we are allowed to find out. We already “know” part of the answer. It should be noted that, for the most part, the people who have tried antiretrovirals have been sick for a long time. The best response I’ve heard of was in a patient who is young and had not been sick for long. It may be that the drugs are useful for the newly crashed, the unborn, or even harder to study, the not yet crashed. A good percentage of people who try them experience cause and effect improvement in the first months of therapy. Like the detection and testing issues, it’s not so simple. Nor is it as simple as, don’t use them, since the drugs move the illness. Nothing with this disease is ever simple.
My impressions of available treatment options in my last post weren’t meant to be in any way dismissive. Believe me, it is all personally relevant. As I’ve said before, I could be wrong about anything. I’ve certainly been wrong before. I’m not writing because I think I’m right about everything, but because I have perspective, for various reasons, and want to shed any light I can. There is so much darkness. The comments sharing experiences are very valuable to all of us. I heard from a penpal in Belgium yesterday who is seeing Dr. De Meirleir, started GcMAF and is doing very well. She also mentioned that she needs to sell her house as she has a mold problem. I do think that mold and other chemical exposures are an important piece for many. The comments about moderate avoidance seemed particularly useful to me. We are always looking for a cure, but improvement counts.
When I was in practice in the Berkshires, I helped people a lot just by stopping things they were taking. I prescribed very little in that practice, other than hormones and weaning schedules for drugs that other doctors had started, often many years before. Sometimes huge gains can be made by stopping things. All drugs have side effects. Patients are often taking drugs prescribed by multiple doctors who don’t communicate with one another. Like an elimination diet, it can be best to stop things, find out what the baseline is and then add things back judiciously. NOTE: some medications are dangerous to stop suddenly. Benzodiazepines and opiates are particularly problematic long term, even if they were lifesaving when started. The memory of how much they helped at the beginning and the fear of how much worse it will be without them, coupled with physical dependence, makes them very difficult to stop. Often tolerance has become a problem and patients don’t believe that going down won’t be terrible, but not even noticing a slow reduction is a common reaction. Going from something to nothing can be a little difficult, but the rewards may be considerable. Klonopin is very commonly in use, because benzo’s help so much with the symptoms of increased sympathetic tone and Klonopin is more socially acceptable than Valium or Xanax, even though the later drugs are actually more effective in the short term. In practice I used to see epileptics desperate to get off Klonopin because of cognitive decline and depression. I’ve posted the references before (CFS treatment myths). This is not a value judgment, having been on both sides of this problem.
I don’t want to turn this into a discussion of Trine Tsouderos, but mentioning her generated so much heat that it can’t possibly be about her. Her stuff is accurate, if a little slanted, not that bad, even with respect to us. I speak to other reporters who think she’s competent. “She makes the calls, asks the questions and writes down the answers”, one said. None of them profess to understand the science deeply, though some do more than others, but that really isn’t the point. They ask somebody what they think and quote them. Then they ask somebody else who disagrees and quote them. They’re not supposed to write what they think. Their personal bias shows despite their best efforts, because they choose who to quote and which quotes to lift at random, but nobody really thinks their opinion is important. The anger that Tsouderos generates seems important though. She is parroting scientists and doctors whose interests don’t extend to helping us, like Offit, who has made lots of money on his vaccine and been hailed a hero, but can’t or won’t face the possibility that the vaccine program may have hurt millions of people, even while saving others. I don’t think it’s about Trine. She’s the messenger. Lois Lane, who can’t figure out that Clark Kent is really Superman, even though she’s standing right outside the phone booth. It’s the people who tell her what to think that are the problem, because she truly doesn’t think for herself, and isn’t being paid to. Some of the people she talks to are evil and, even if they’re not, they are without compassion. That’s what hurts. There is something cold about the way she approaches the problem, hiding behind “the evidence”, largely absence of proof, while ignoring the evidence of millions of suffering people. Clearly her editors are more concerned with pleasing scientists and doctors than patients, who they see as powerless.
I am struck by the occasional angry outbursts from scientists, who have been reading and feel the need to say I’m wrong about everything. I feel like an Aikido student deflecting energy, because I really do want their input. Why all the anger? Because you disagree with me? Because my medical mind skipped a few steps in your deductive reasoning process? You couldn’t possibly think I’m wrong about everything. The most important thing that is happening here is the discussion about the clinical problems. Why not contribute to that in a constructive way? Because I’ve painted a picture that makes the ivory tower look like the Leaning Tower of Pisa? Why should you be protected from the patients who are the reason for the work? If the science is a nay, then everybody can go home and forget about all these difficult patients again, just like before? We can’t let that happen this time. If the first attempt to find the causative retrovirus has revealed the tip of a very large iceberg, burying XMRV doesn’t get anybody off the hook. Give it up, get to work and find the truth for us. We need your help. I know that there are very good scientists out there who really wanted to find XMRV and haven’t been able to. Neither were Drs. Alter and Lo. They found something else of significance. Please don’t give up.
>Thank you for writing this. I especially like this: "If the science is a nay, then everybody can go home and forget about all these difficult patients again, just like before. We can't let that happen this time. If the first attempt to find the causative retrovirus has revealed the tip of a very large iceberg, burying XMRV doesn't get anybody off the hook. Give it up, get to work and find the truth for us."
I want the truth. After 24 years of suffering, I think I deserve it.
Patricia Carter
>Perhaps seeing everything through a microcope, using "animal models" and mechanized testing has so distanced many scientists from the patients they are supposed to be helping that some of them resent it when they are forced to acknowledge the real human suffering involved.
Having someone like you who can speak the language and cannot rationally be charged with malingering or mental illness cuts off the exit strategy for those who simply want the status quo to continue, as long as they're still getting funded for what they are in the habit of looking for. Chicken viruses, anyone? Influenza vaccines?
I have heard, more than once, a scientist expressing concern that money will be "wasted" on these retroviral researches. While HIV/AIDS research receives BILLIONS in research funding, apparently even the $5 million ostensibly tossed toward "CFS" research is too much.
I think the compassion for patients exhibited by WPI/Mikovits and you, Dr Jamie, is giving some of the good ole boys a guilty conscience, or maybe case of jealousy.
The very fact that the ARVs you and others have taken had an effect at all says there is something going on. Science should be trying to find out what happened there and how to make it a permanent and complete improvement, not trying to shut it down before we get more answers.
Thanks for not allowing them to stuff us back in the closet again. I was also happy to read that Dr Snyderman is well enough to be a WPI contributor. Please take good care of yourself.
>And wasn't it great how a pair of dorky eyeglasses were enough to turn Superman into mild-mannered Clark Kent?
Sometimes Lois would wonder… and then go "No..no, couldn't be!"
It's amazing what people can't see, when they are determined not to see it.
Despite the plethora of clues, they never changed their minds until they saw Clark Kent stop a runaway train with his bare hands or do some other equally amazing feat.
Something they absolutely COULD NOT ignore.
Even then, Clark was usually able to talk them out of it, for what they had seen was
obviously impossible.
It was absurd for them to even conceive of such a ridiculous thing.
>Researchers who identify too heavily with the patients, I'm guessing, are looked upon with suspicion for being too attached to the outcome. They want sufferers to get better, and they hang their hopes on a magic bullet because that in turn makes sufferers hopeful.
Attachment to the outcome works both ways, though. Certain psychiatrists would like cognitive behavioral therapy and systematic desensitization (in this case graded exercise therapy) to be the answer. Researchers who don't want their grant money siphoned off for XMRV would like XMRV not to be the answer. People who failed to support a friend or family member with "chronic fatigue syndrome" don't want to find out that they've been behaving like small-minded jerks.
>thank you for your devotion to knowledge. i truly believe it is imperative the search goes on – not because xmrv isn't "it", but because this illness seems to be too overarching to be attributable to one thing. i do know the politics of this illness have finally gotten to me. reading the things people snark back and forth with each other is so disheartening that it literally wears me out parsing the emotions. where the hell is the science? under wraps and out of the public eye, just like all of us. i am constantly harassed for "donations", but don't have the money or the energy to devote to my own well-being. some of us have no supportive husband, family or work to lean on, and don't get enough to eat. the people who claim to be doing something end up back-biting and judging everyone else by their little rulers. meanwhile, we die. again, thanks for trying to buck the trend.
>"Give it up, get to work and find the truth for us."
Yah.
From an advocacy perspective, IMO one of our highest priorities is to engage (and cause to be engaged) bystander scientists.
The truth will be revealed. Those of you on the sidelines, know that you and the world will be rewarded for your engaging now.
IMO your first task is to stop implicitly trusting authority. Verify stuff. That is science.
Second: learn. We are here to answer questions. For example, make sure you are studying subjects who have the disease in question.
Third: do what you do best at your best. Find the truth and publish it.
We need you. Engage!
Samuel
>And at all times, no matter how much your conceptual framework seems to be founded upon irrevocable and undeniable Laws of Nature…
always, always, always….
"Check your premise"
You might just get a big surprise!
>Dear Jamie,
This is your best post by far. You are clearly and finally seeing the bigger picture. At least I hope you are.
The two sentences that raised alarm bells for me were:
"If the first attempt to find the causative retrovirus has revealed the tip of a very large iceberg, burying XMRV doesn't get anybody off the hook."
I guess my question would be: Why do you assume or how do you come to the conclusion that ME/CFS is caused by a retrovirus? Especially one that is more prevalent in healthy controls by far, than in the patient population.
But this sentence (in your paragraph about antiretrovirals) was even more alarming:
"It may be that the drugs are useful for the newly crashed, the unborn, or even harder to study, the not yet crashed."
THE UNBORN? That seems incredibly dangerous to me, or at the very least, an extremely premature conclusion.
And the 'not yet crashed'. That also assumes that the retrovirus causes everyone to get sick, which hasn't been proven at all, and negates the strong possibility that a balanced immune system can keep it in check.
I hope you'll discuss this in a future column.
>Kelly,
I didn't mean to imply that everyone who is XMRV positive will eventually get sick, but I would presume they are at risk. It isn't known why some people with HTLV get sick and others don't.
The virus is present at a much higher rate in patients than controls. And yes, the unborn; I think that vertical transmission is obvious.
Best,
Jamie
>Unless this retrovirus is a total red herring, it does seem like those who have it would be at risk and that taking proactive measures might be something to consider.
I'm not sure that taking antiretroviral drugs would be my choice of measures though.
The more obvious things to do are the other ones we keep mentioning:
* Avoid environmental biotoxins (e.g. moldy buildings, certain outdoor locations like the Lake Tahoe area)
* Avoid mercury (e.g. fillings, vaccines, certain seafood)
* Avoid exposures to biotoxin-producing organisms (e.g. Lyme, brown recluse spiders)
* Support methylation (e.g. Metafolin, B12)
* Address oxidative stress and mercury (e.g. ALA, zinc, Vitamin C, other antioxidants)
* Address subacute inflammatory infections (e.g. herbs, colloidal silver, HBOT, digestive enzymes to dissolve biofilms, gut health support)
* Be particularly careful to reduce other pro-activation factors when pregnant, to prevent too much stress on the system at once
* Proactively detox (e.g. sweating through exercise or saunas, cholestyramine, chelation, etc.)
* Avoid toxins in general (even if they're not specifically inflammatory, increased toxic load could be a weakening factor)
* Avoid immunological challenges (vaccines)
* Avoid gluten and other inflammation-producing foods (when relevant)
* Avoid medications known to promote activation of the retrovirus (e.g. certain antidepressants, valproic acid)
* Don't go to extremes in terms of overwork or overexercise
If I'd done all these things upfront, maybe I still would have gotten sick.
I'm pretty sure I wouldn't have gotten SO sick though.
With this disease, it's a lot easier to keep things from falling apart than to put the pieces back together again.
Best, Lisa
>With all due respect, I must strongly disagree about Trine T. She pumps out articles that are consistently slanted against ME science, and against autism, anti-vaccine, and Lyme Disease science, according to many people knowledgable in those areas.
One of her latest articles:
http://www.chicagotribune.com/health/ct-met-chronic-fatigue-xmrv-20110317,0,6116823.story
"A high-profile scientific paper that gave enormous hope to patients diagnosed with chronic fatigue syndrome, and even prompted some to begin taking potent anti-HIV drugs, has been largely discredited by subsequent research….
Despite the newer research, its leaders strongly deny that contamination could account for their findings.
"It is clearly a human infection," Mikovits, the institute's director of research, told an audience at a January presentation hosted by a California alternative medical practice. "It is clearly circulating through the population as is our fear and your fear."
Scientists say there is no evidence to support her statement.
"Saying that is just inciting fear," said Columbia University virologist Vincent Racaniello."
For some reason I can't find her other recent article now, but remember she said in it that the XMRV link to ME was "disproven."
The Lombardi paper "disproven", "largely discredited" and 'scientists' say there is 'no evidence for' Dr. Mikovits' statements. These are very biased statements.
the Lombardi paper has been "largely dis
>Hrm, ok to give ARVs to HIV negative gay men to try to prevent infection… http://www.cdc.gov/hiv/prep/resources/qa/index.htm
Don't give ARVs to "CFS" patients, nooooo way tooooo dangerous!!!11
Double standard much?
Kelly – they give ARVs to HIV+ mothers to try to prevent transmission to the unborn child, exact same principle with HGRVs (XMRV & friends).
>Well said, Kelly. I had the same concerns. We have no idea yet whether antiretrovirals are even relevant to CFS. From Ali and Jamie's experiences so far, suggesting that they might be useful prophylactically seems really unfounded. Of course, it's always possible that it will turn out that prophylactic use is advisable, but we have a very long way to go before that is even something worth discussing.
Jamie, I think the reason some scientists who have participated in this discussion are angry is that they are very frustrated at all the leaps and bounds you sometimes taking in putting two and two together to get a very large number (not four). They are scientists, and this is just not how they work. I imagine they believe that since you are a doctor, you should have some of the same caution that they have in their thinking and their work.
It is true that speculation and "what ifs" are an important part of science, but when the scientists do this sort of thinking, they try to do it from a very informed perspective, and they still take careful, fairly small logical steps forward. It is the only way to reach valid conclusions.
There is, to me (and I'm not really a scientist, just trained in philosophy and anthropology), a sort of wild flailing in your thinking, a putting together of apples and oranges and coming up with carrots. But you are extremely articulate, and you make your thinking sound plausible, even well-considered, which is a problem because a lot of people look to you as a sort of expert on the science, no matter how often you remind us that you aren't one. Don't you see how many people write things like, "I didn't understand what you wrote, but this is just what I've been thinking." Or, "I don't understand it, but I'm glad you've sorted it all out for us." I think scientists and doctors react to this even more strongly than I do, because they know how difficult it is to translate science and the scientific method to the broader public, and they feel that their work is undermined by a voice like yours.
I have such mixed feelings about all this. What is the best way for us to get our disease to be taken seriously, and to get good funding for research? What is the best way to get our voices and our experiences heard well enough that appropriate avenues of research will be followed? Preconceptions about the final answers probably don't help us to be heard.
I do feel very grateful for the XMRV findings, even if they turn out to be a dead end (which is of course possible), because some quite brilliant scientists have had their interest in CFS piqued. I doubt that the disease will retreat to its former obscurity, although it is possible that it will. If XMRV is the answer (or a part of the answer), we will not be ignored any more. But if it is not, we will have to fight hard for research attention. How can we best capitalize on the current public and scientific attention to make sure we are not abandoned if XMRV turns out to be a blind alley? I would love to encourage your readers to think hard about this question. If XMRV is the answer (or a part of the answer), we will not be ignored any more. But if it is not, we will have to fight hard for research attention.
>I'm a desperate patient, with worsening symptoms, trying to figure out which route, if any, I should opt for toward regaining health.
Doesn’t seem to be anything we can do, although other than the splash made by XMRV, the Lerner and Montoya trials look the most promising so far. I’m very curious to know what's going on at the WPI in re to XMRV and related research into CFS. Specifically, have their previous results reported in Science, with the high percentage of XMRV positive results been replicated? Is that testing in-progress? Is it still the WPI’s main lead into cause and possible treatment of ME/CFS, or is their faith in the XMRV-cause waning? If so, is it waning a lot or a little?
Luckily, last year, I was granted social security disability for atypical depression and fatigue, so although I’ve lost my home and ability to earn a living and now live on disability, I could scrape together the $550 needed for the XMRV lab test by selling some of my few remaining treasured belongings. Don’t want to do that if there’s a perception that XMRV is quickly becoming a dead end though.
Is it true there will be a cheaper XMRV test out by June?
Perhaps Dr. Deckoff-Jones is prohibited from commenting but does Anyone know what the WPI is up to these days? The lack of news coming out of the WPI this year is disheartening. I wish they would post updates, other than staff changes, to let us know what they're doing.
>PS. Sorry! In re to the post I made at 8:53PM, I meant to ask whether the WPI was able to replicate the XMRV results they originally described in Science Magazine. I'm aware of the controversy surrounding the detection of XMRV in CFS patients in general, and am also aware that different labs used different tests, etc.
>Lisa,
Sorry to be pessimistic. I wish you were right but I personally don't think so. Here's why: 1) 99.7% of the population don't do any of the things in your long list and are not sick. 2) almost all patients do some or all of the things you suggest. Yes, they help magnificently. And then time passes and the patient declines further. After many years they realize that what they've done is improved things but not solved the problem; wich would be if they became like the other 99.7%. I've heard this from so many patients. And seen this in my son (11 years ill since 13). Now is very weak. Years of doing many things on your list probably meant his downward spiral was a slow 11 years instead of a steeper 5 year plunge.
Again, hate to be pessimistic at the idea that controlling our environment can fix us (as opposed to help us. Which it most certainly can). But…history is littered with "us" (people) concluding that illness is something simple we can control by changing something in our environment, what we do or eat or drink or think. Malaria ("bad air" of a swamp), the four humors of the body getting "out of balance" and causing most disease. Heart disease (supposedly just bad plumbing and eating wrong), stomach ulcers (supposedly emotional stress). Ocassionally the tendency to look to these factors is correct. Scurvy is an example that comes to mind. A simple deficiency. And, magnificently we could actually just eat something to make it go away. But mostly we eventually find we are actually under attack by another biological entity, with it's own biological intelligence, it's own "will" to do what it needs at our cost. For TB no amount of "bodily balancing" from fresh mountain air, clean food and rest, deliberately collapsing a lung to rest it, or avoiding stress or the many other "curative" ideas were a defense against Mycobacter Tuberculum. Streptomycin helped.
Given the extremely strong connection of our illness to very acute febrile illness; and the very literal I'm-OK-today it's-24-hrs-later-and-I-have-someting-I-will-never-recover-from I personally think it's a stretch to believe that we needed to avoid something to avoid getting sick. Something is making war on us. And it's not an insurgency. It's a blitzkreig. We need to find out what it is. And we need air support (medications that target the culprit, when we find him), not sandbags and rifles (propping up a valiant but futile resistance that will get slammed).
Peter W
Melbourne, Australia
>Oh, Peter, you have said this so well! All the fine-tuning and avoidance in the world feel like they would be little BB pellets against the armored tank that is this illness.
I think you are so right that people are driven to believe that there is something within their control that is causing their illness–or something that humans themselves are doing (toxins in the environment, etc.), when the evidence of this disease and of the history of medicine suggest that it will turn out to be some specific biological agent or genetic malfunction (or more than one, if there really are subgroups of CFS).
Which is never to say that we have no influence at all on our health. I think people should go ahead and do all they can to maximize their well-being within this disease, but I wish people would refrain from drawing the conclusion that these irritants and exacerbating factors are the actual causes, because I think it gives false hope to all the folks who have been slammed by this illness.
We need research, and we need to find the cause, and yes, I do believe there will turn out to be a singular cause of my illness, not a broad array of irritants, simply because I was a perfectly well person one day and a desperately sick person the next, and because I have the totally bizarre symptom of "PEM," which is almost entirely unique to CFS and not something anyone has a "little bit" of, as far as I know.
>With small amounts of radiation from the reactors in Japan now being detected in California, Colorado, Hawaii, Washington and Nevada, this seems as good a time as any to discuss the idea of whether toxins are capable of causing disease.
http://www.washingtonpost.com/minuscule-amounts-of-radiation-from-japan-detected-in-nevada-scientists-say-no-health-risk/2011/03/27/AFPbTQhB_story.html
Let me first say here that I am fully aware that neither the worst mold toxins (satratoxin) nor the worst cyanobacteria toxins (domoic acid) are capable of causing all the abnormalities in ME/CFS all by themselves.
(Though if you look up their effects, you may find that they look awfully familiar — especially if you’ve just been reading Osler’s Web.)
Nor is there any evidence that suggests that the stew of toxins present in “water damaged buildings” are capable of causing the all abnormalities in ME/CFS all by themselves.
However, dismissing toxins as being relevant because they don’t cause all the abnormalities themselves may be acting a bit too hastily.
For instance, nuclear radiation does not just cause burns and cancer. Most of its effects are through the destruction of the immune system, causing all kinds of latent infections to go active.
http://en.wikipedia.org/wiki/Walking_ghost_phase#.22Walking_Ghost_phase.22
Not to be morbid, but “Walking Ghost Disease” sounds like about as good a name to replace ME/CFS as I’ve ever heard.
Could it be that if our immune systems weren’t being undermined by the crap in our environments, XMRV would be a harmless commensal pathogen?
Maybe this is a whole new dynamic of illness: different toxins undermine our immune systems in different ways, causing different sorts of pathogens to emerge.
That seems like it would be important to know, if it’s what’s going on.
Best, Lisa
>The skepticism sounds like all the same logic and arguments that people used to try and talk me out of trying something drastically different than what THEY were doing.
Well, what they were doing wasn't doing much at all, so I sprang for it anyway, and Lisa listened to my story, and found this applied to her as well.
We Moldies can even TELL people this is not a cure, and nor am I claiming this to be "the cause of CFS", but it totally kicked butt over their various strategies and they STILL want to find some fault with it.
This is completely opposite to how I believed desperate people would react. I had NO IDEA that so many have the luxury AND the sheer determination to slamdunk "something that seems to help".
Please refer to the "Catch 22" post. The adage of "If anybody finds anything…" is completely and demonstrably opposite to the reality of how people REALLY respond.
I really don't CARE if anyone else wants to undertake "avoidance". That is completely up to them.
It is fine that people choose to doubt this concept, but bear in mind that actively working to undermine or denigrate the protocol is working to deprive others of a strategy that has already proven its value.
Not to any "subset" of CFS, but to the very people and specific illness that CFS was coined to investigate.
The importance of the biotoxin phenomenon is not being appreciated, and until it is, "science" is screwing up… big time!
This is a helluva clue. It shouldn't be ignored the way it has been.
>I saw "Clark Kent Mold" take off his dorky glasses and turn into Supermold.
Mild mannered mold, for a short time, could leap tall buildings with a single bound, and as told in Dr Shoemaker's book, Surviving Mold… "Up in the air. It's a bird, it's a plane… no, it's a Hang Glider, getting hit by Supermold"
It was amazing. And as soon is the deed was done, Supermold put on his dorky glasses and turned back into meek and mild mannered mold, so nobody recognized him.
It was the perfect disguise.
Hidden in plain sight.
>My daughter has been improving after over a year on Valcyte. We are now going to try stem cell treatment in Panama as many people under the age of 35 are improving (some dramatically) after treatment with autologous adult stem cells taken from their own adipose tissue.
SoCal mom
>Erik,
I am very very glad for you that mold turned out to be such a clue for you and that mold avoidance helps you so much. My skepticism is about whether it would help me. You have to understand that I have read perhaps 100 other people's sure-fire answers to their CFS, whether they experience their answer as a cure or just a big improvement. Your story carries a bit more weight with me because you are an original CFSer, and I feel more confident that you have what I have (so many people who claim to have had "CFS" say that a better attitude and more vigorous exercise cured them, so I know they never had "CFS" as I experience it).
But, even discounting the stories of those I doubt ever had CFS, I have seen hymns of praise to "Amygdala Retraining," to high doses of vitamins, to elimination diets, to Valcyte, to so many other things, and I have hopped down enough bunny trails pursuing these treatments with no effect whatever that I am now skeptical about all such claims. Period. Yours included.
I'm glad that mold avoidance has given you a new lease on life. Maybe it would do the same for me. Maybe any one of 50 other approaches that others claim have worked for them would work for me. But I have never gotten a single bit of improvement from anything except careful pacing. You can call it denial or resistance or whatever, but the honest truth is that I have no special reason, except your insistence (and I don't really know you at all), to think that mold avoidance would work for me and to go to the great trouble of doing your radical avoidance. I am desperate, yes, but the way I look at it is that I am not going to waste what little time and energy I have chasing wild geese. And as far as I am concerned, mold is probably a wild goose. There is no special reason I should believe otherwise.
Please understand that yours is far from the only voice out there telling people, "if only you would do what I have done, you could be much better." Who are we to believe? Why? I understand your evangelical passion, but please try to understand my skeptical agnosticism on this point. People are different about things like this.
In other words, maybe it will turn out that I am rejecting the very approach that would most help me, but if so, it is not because I am stupid or in denial or something like that. My choices arise from my own experience and my own rationality, which are legitimate and worthy of your respect, I think.
>Dear SoCal mom,
Would you keep us posted on your daughter's stem cell treatment? Good luck!
Bravada
>Eric,
I'm trying hard to understand your posts and am not really sure what you are trying to say. I think I've missed some history in your posts but from a quick scan have have picked up your Tahoe background and a few other things. Interesting to me is:- just yesterday I bought a new house. Lots of money :-( I did to get two sick kids away from a house with hidden mold. They will also get other treatment. But we have determined that, as a symptom reducer, mold avoidance is by far the best bang-for-buck for them. Your experience gives me hope that my grovelling to the bankers will have some payback!
Peter W
>Lisa,
I've not come across anyone in the CFS world that dismisses toxins but that's just me. My impression is toxins are usually mentioned in the context of exacerbators and opportunists, not causes. My post was because I doubt they are the fundamental causes. But not to be ignored, especially the biologic toxins you mentioned. The opportunistic nature of fungi (and therefore molds) is well know from both AIDS and Kwashiokor. But of course that's just my conclusion (until we learn more!).
I looked at the newspaper radiation reference you gave. The "science" journalist needs to be made to stand in the corner and recite his times table. He has the usual trouble with basics:- radiation can never actually "reach" the US from Japan. Radioactive particles can. (This is just one of those technicalities like "chronic fatigue" that seems innocent, but causes so much confusion).
Anyhow radiation at significant levels is a dreadful thing. The thing with radioactive substances is that they are the most easily detected of all potential agents that can harm us. We are talking (generally) of the ability to detect one hundred million times less material than we can chemically. If a toxin is detectable it means (generally) that it is present in quantities able to do harm. By comparison radiation is extremely easy to detect in absolute miniscule amounts since detection is a physical process and does not rely on chemical analysis.
Next post (word limit) has more
Peter W
>Here's a skeleton calculation for you. Even if you've never done a calc like this if you have a couple of hours I recommend it. Contrary to what you've been told it's not rocket science:- it's grade 10 maths. The notes below may seem confusing but they are actually nothing special:-
Q:- If we were to run a geiger counter over some "stuff" contaminated by winds from Japan, how sensitive is the test for radioactive Iodine? How does this level of detection relate to the radiation humans give off naturally (because we are made of natural materials).
Answer part A:- (Very rough calc assuming new radioactive iodine and ignoring geiger counter geometry): A geiger counter can detect a singe atom (isotope) decaying into its stable state. Iodine 131 has a specific activity of 125,000 (ie 1 gram of I-131 has 125,000 times the decay activity of Radium). This equals 125,000 x 370,000,000,000 decays per second (Bequerels)
Therefore how many grams of iodine-131 would give a 1 click per second on a geiger counter?
Answer is 1 / (125,000 x 370,000,000,000) = 0.000,000,000,000,000,21 gms = 0.2 femtograms
0.2 femtograms is about 100,00 atoms of iodine. Can be detected with a simple geiger counter you can borrow from school. Not an amount you would pick up in a chemical test.
Answer part B: How strong/weak is this activity compared to the radiation the human body gives off naturally? Considering only Potassium, a small proportion of which is naturally the K40 radioactive isotope the human body has approx 4,000 disintegrations *per second* (depending on your weight).
Now you can't actually measure the body's natural radiation easily. The reason is, like radioactive Iodine the emission from natural potassium is beta particles. They survive less than a half inch in a body. But if you *could* put a human in the detector of a huge geiger counter it would be off the scale with a high pitched whine.
The bottom line: you can start detecting radioactive particles from Japan at a very low level. Four thousand time less than the radition the human body gives off.
Of course in many nuclear accidents there is more material emitted and the levels are much higher and they are dangerous. But it does put in perspective that when someone says "detected low levels" of radiation which are "safe", it has some foundation in reality since we easily detect well below the level of radiation the human body itself emits. By contrast we are rightly suspicious when we hear "low levels of toxins that are safe". It may be someone's spin to keep you in the dark. Because chemically, if we can detect it there will be a at least a hundred million times more material present.
Peter W
>If CFSers aren't discounting toxins, then what happened at the inception of the syndrome?
Anybody know?
Not knowing is a pretty good sign they must have been discounted.
>THE UNIVERSITIES DO NOT TEACH ALL THINGS, SO A DOCTOR MUST SEEK OUT OLD WIVES, GYPSIES, SORCERERS, WANDERING TRIBES, OLD ROBBERS AND SUCH OUTLAWS, AND TAKE LESSONS FROM THEM. A DOCTOR MUST BE A TRAVELER–KNOWLEDGE IS EXPERIENCE. HE WHO IS BORN IN IMAGINATION DISCOVERS THE LATENT FORCES OF NATURE." (Paracelsus 1493-1541, Renaissance Surgeon/Chemist)
>Peter wrote:
>Sorry to be pessimistic. I wish you were right but I personally don't think so. Here's why: 1) 99.7% of the population don't do any of the things in your long list and are not sick. 2) almost all patients do some or all of the things you suggest. Yes, they help magnificently. And then time passes and the patient declines further. After many years they realize that what they've done is improved things but not solved the problem; wich would be if they became like the other 99.7%. I've heard this from so many patients. And seen this in my son (11 years ill since 13). Now is very weak. Years of doing many things on your list probably meant his downward spiral was a slow 11 years instead of a steeper 5 year plunge…..
>I did to get two sick kids away from a house with hidden mold. They will also get other treatment. But we have determined that, as a symptom reducer, mold avoidance is by far the best bang-for-buck for them. Your experience gives me hope that my grovelling to the bankers will have some payback!
I guess on my long list above, I should have distinguished the first item from the others to make sure I got across the idea that it is the most important, e.g.:
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Avoid environmental biotoxins (e.g. moldy buildings, certain outdoor locations like the Lake Tahoe area)
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Unfortunately, if people do all the others but do not successfully avoid the environmental biotoxins, that very well may not do them any good at all.
I have available a compilation of Erik's comments on this topic, including his recollections of the Lake Tahoe epidemic. Let me know if you want me to send it to you.
Thanks for the reassurances about the radioactive particles.
Good luck in your new home.
Best,
Lisa Petrison
lisapetrison at yahoo
>Lisa, I would be very interested. peterrw at gmail.com (two r's). Thanks!
>The thing with the reporting of radiation is that "low, safe" can vary from the sort of numbers I had above thru to levels trillion of times higher where "low safe" means "you might absorb some but it's 1/1000th of an x-ray" or something like that. Both might technically be "low, safe" but the difference is huge.
>"Given the extremely strong connection of our illness to very acute febrile illness; and the very literal I'm-OK-today it's-24-hrs-later-and-I-have-someting-I-will-never-recover-from I personally think it's a stretch to believe that we needed to avoid something to avoid getting sick. Something is making war on us. And it's not an insurgency. It's a blitzkreig. We need to find out what it is."
Peter W
Melbourne, Australia
Peter, if you were trained in military biological warfare protocols, it wouldn't be any stretch of the imagination at all.
In fact, if you were to stumble into something that acted this way, your training would allow you to recognize the effect.
I completely agree.
We need to find out what it is.
>Dr. Jamie,
Thank you for continuing to be a voice for us. What you said in this post is brilliant.
"Why not contribute to that in a constructive way? Because I've painted a picture that makes the ivory tower look like the Leaning Tower of Pisa?"
Speaking of ivory towers, people have got to learn that if they want the truth, if they want to really understand the state of affairs; as like treasure, they have to dig for it. And I know I am preaching to the choir, but I will continue.
Everything the public Needs to know, before it gets close to our ears, the information is distilled and de-sensitized before it reaches the news syndicate's reporting employees. They don't dig, they take it and read it exactly the way it has been written, word by word, for them by yeah, you know who. Instead of informing the public, they condition us with what the powers in their towers want us to be conditioned with. And you'll see this by watching any of the affiliated news channels. Every channel, the language and script is word for word, almost Exactly the same. God forbid if they did not appear to be consistent in the 'message'.
I once had a friend who I wanted her to watch Democracy Now. Well, she did, and she summed her experience up to me as follows:
"I didn't get it katie. All I saw was some woman sitting down talking."
Unless teh news is surrounded by entertaining grahics, fancy news rooms and compelling orchestrated sound tracks, the majority of the public will continue to believe that "If it's not on CNN, then it doesn't matter."
Overcoming those ivory tower powers is daunting at the very least. All we can do is talk and talk a whole lot more. And I try to start with educating those around me, to watch the independent news. Until they understand how big media works and how it doesn't benefit us, but them; and how different the news can be if they look for it, in the rest of the world?, then when I talk to them, they will continue to harp: "If it's not on CNN, why should I worry?"
I love this web site as a tool to educate those who will listen:
http://www.mediaed.org/
Finally Dr. Jamie, you are an independent voice that is so needed and appreciated. You are a source I can turn peoples eyes on, and I Know they will perk up and say "Wait, what…?!".
If I, and others, have forgotten lately to say "Thank you"?, know you are so loved and so highly regarded for your Complete and Fierce determination to help.
<3
>Erik,
The point of my post was that it is not something passive affecting people with CFS (like simple deficiencies or simple pollutants) but an active attack by a biological entity, which has the biological intelligence to do that sort of damage. Now I know technically mycotoxins are not the fungii themselves but not far removed. So I am not disagreeing with you. I am disagreeing with the idea that simple deficiencies or pollutants could be a major or causal factor.
It was Lisa's post that read to me like it was suggesting the latter. She has since explained what she meant and differentiated the points on the list.
Anyhow, have since scanned through your material. I am surprised at the negative reaction you've had. The CFSs I know may have differeing views on mold, but all are aware that, of the stuff that "needs to be avoided" mold is the worst of the worst.
Peter W
Melbourne, Australia
>Isn't it weird how just a few years ago, mold was considered so harmless that it wasn't even mentioned?
"Toxic Mold" wasn't in the literature.
Old advertisments for air filters didn't even mention mold.
Until Melinda Ballards front page USA TODAY story in 2000, the idea was universally scoffed at, whenever I spoke about it.
There were a few "remediators", but they were mostly construction workers who used no special procedures or Hazmat protocols.
From "harmless" and inconsequential.. to where it is now, in just a few years.
And people really think that nothing much has changed?
Years ago, those remediologists didn't become immunologically compromised from their work.
Lately, if they don't use Hazmat suits and decontaminate, they get profoundly ill!
And become unable to work in their career anymore.
Something changed.
From what I've seen, it would behoove researchers to pay a bit more attention to just how dramatically this formerly benign organism has severely impacted so many lives lately.
What's even more interesting is that I have a "mold story" from nearly every prominent CFS advocate.
As I said in Surviving Mold, if they had been aware of it, then they watched this whole thing go down while saying nothing. Making no effort to help people or obtain meaningful research.
I hope they really didn't know, because to have hidden their knowledge wouldn't have been very nice, would it?