Where large sums of money are concerned, it is advisable to trust nobody. ~ Agatha Christie
Thank you to Kristin Loomis, for contributing her comment and for the additional information she provided privately. I have a better understanding of the HHV-6 Foundation’s policies and interests. I understand that retroviruses really aren’t on the foundation’s radar these days. I apologize for any inaccuracies, this time, and anytime; I do my best to fact check before publishing, and to limit any criticism that is directed at an individual to what can be verified on the internet, not gossip. I write each blog with the information at hand at that moment, intending to stimulate discussion. It is personal opinion, reaction to the events, public and private, not investigative journalism, though I wish a good investigative journalist would take it on. I’m getting mail suggesting that I interview people before posting blogs, but I have a day job again:). In any case, the information circulating that HHV-6 Foundation funded Knox et al is apparently incorrect. I invite anyone who feels they have been criticized unfairly to join us. Everyone needs to know the truth.
In your comment, Kristin, you said that you believe that Abbott funded Knox et al. I guess it’s logical to conclude that if Abbott appears on a paper, there is money involved, either because they funded the study and/or there is a patent and potential lucrative test involved. This raises a number of questions. I hope that anyone with information to answer these questions will contribute to the discussion as you did. I have never thought that there is a conspiracy in the sense that Peterson, Knox, Coffin, Stoye, Vernon, McCleary, the editors at Science, et al are having conference calls plotting our destruction. Each individual has their own reasons for doing and saying the things they have.
In my opinion, whoever funded their study, Knox et al have some pretty unsavory stuff to explain to the patient community. If I put the best spin on it possible, then the patients have been harmed by misguided acts. The publication of their shoddy work was unethical and immoral, in my opinion. The collection of the specimens in the first place for this purpose is inexplicable to me. Even if Peterson woke up one morning and said OMG, XMRV is all a big mistake, it is inconceivable to me that he no longer believes it is a retrovirus. So his desire to bury XMRV has to be about being right, ego and revenge, or money. Roche funding Valcyte? Hemispherx funding Ampligen? As I’ve said, he is welcome to respond. I will be happy to post anything he’d care to share. I would like to point out here that although I’ve had a lot of questions about Dr. Peterson for a long time, and have heard many stories, from protagonists and patients (always my most important source), I didn’t mention his name on this blog until the publication of Knox et al, which I took as a declaration of war on the patient community.
Abbott turns up all over the place, e.g. link; see Industry Relationships at the bottom of the page. They are clearly interested in XMRV. Their employees appeared as co-authors on negative and positive papers in Belgium, the positive paper being about a test for XMRV in prostate cancer tissue, not blood. When someone does a study, they know what they want to find; then they blind it to make it convincing, keep it honest. It makes no sense to do a study knowing at the outset that your test detects nothing, unless that is what you were trying to show in the first place.
From where I sit, there are many unanswered questions. It would be lovely to have no need of considering anything but the unfolding science, answering all of our questions in logical sequence, so everyone could take the high road; but that isn’t what happened. Thus my questions of the moment. Why and when did Abbott approach Konstance Knox to do a study on XMRV, when she had never published on anything but HHV-6 and owns a commercial lab dedicated to it’s detection? Why is Abbott’s funding of Knox et al not disclosed? Why would Abbott want to publish a negative detection study? Who is Graham Simmons and what is his stake, as he appears on negative, equivocal and positive papers? He works for a business entity involved in transfusion science and has a teaching appointment at UCSF, as does Jay Levy. Where do Roche, manufacturer of Valcyte, and Hemispherx, manufacturer of Ampligen, fit in to all this, since it seems likely they are a piece of the puzzle as well? What else do these people/companies have waiting in the wings? Intellectual property laws support a unique patent. Who put pressure on Science to rush Knox and their EEC to press when they did? When did Dr. Peterson collect the specimens for Knox, and what was his relationship to the WPI at the time? Did he inform everyone of what he was doing? You can’t get into anyone’s head. In the end, only the Shadow knows. But facts, actions, dates can be verified.
Nobody wants to have anything to do with CFS, except the WPI (and the CAA, with their peculiar spin). It’s common to hear that this or that researcher is sorry they got involved in CFS, because the advocacy community is becoming so strident. I’m not sure what the answer is. Polite hasn’t gotten us anywhere, as witnessed by the useless money that’s been spent on the CAA over the years in their pitiful attempt to validate the illness scientifically. If that had worked we wouldn’t be confronted with the psychiatric community wanting to label us with “CSSD”. The CAA too is free to respond in any way they like; the comments on this blog aren’t moderated.
ME/CFS is of retroviral origin, as is ASD, in my opinion. Read the HIV and animal retrovirology literature, much of which is referenced in previous blogs. It’s all there, plus the methylation defect and mitochondrial issues, covered to a large degree in the HIV literature, that were making up the bulk of my reading until the recent salvo was fired. The parallels are obvious. Nothing we’ve ever had to work with as physicians comes even close as a workable model to provide us with an approach to treatment, with a chance of healing the patients, forgetting about whether XMRV is the major player or not. For an individual to take any action at this time which has the effect of shutting down research into the retroviral origin of the disease is a crime against humanity.
Nobody is saying that the associated, opportunistic infections seen in ME/CFS aren’t important, anymore than Pneumocystis is unimportant in AIDS. It is exactly analogous. In this case, there may be interaction between viruses. Activation of latent viruses may benefit the underlying retroviral process, turn it on if you will. Another possibility is that any persistent infection causes downstream inflammatory changes that favor activation of provirus. The research into how retroviral etiology explains CFS pathophysiology needs to proceed, even before everything is sequenced and proven, even while XMRV’s defendants are being raked over the coals. Everyone involved knows it’s much bigger than whether individuals get discredited or laughed at. Scientists and doctors are much the same when it comes to fear of ridicule restricting their abilities to fulfill their prime directives.
In the end, science will tell us who is right, irrespective of personalities, unless the work isn’t done at all. Although I look forward to the results of Dr. Lipkin’s study, and from what I have read and heard, he is worthy of the respect he has been proferred by being put in charge of such crucial work, it seems wrong to me that it all rests on one man’s conclusions, or the ability of a couple of scientists to flawlessly reproduce their work, though they will certainly try. Maldarelli, Lipkin, XMRV Blood Working Group. That’s not much for a million sick people. When John Coffin declared XMRV dead, he said it could be another retrovirus. Is he looking for it? Why is the federal government going to let this go another year, waiting for a ruling on one virus, before considering the bigger questions? It needs to be studied as an enormous health crisis, whatever the outcome of the work on XMRV. If it were anything other than a kangaroo court in session on a federal level, the work would be a priority, with our Center for Disease Control finally trying to do some controlling of our disease.
>Erik,
What evidence aren't we looking at? Not then, now. Please be specific, not cryptic. What do you want us to do?
Jamie
>You know my story, were a Shoemaker patient and have received some eduation in this paradigm,
we have corresponded privately at length,
you have seen Mold Warriors and Surviving Mold.
You have observed that others who followed my path have achieved similar results.
Take a wild guess.
"In the face of obvious abnormalities, skepticism is inappropriate".
-Dr Ritchie Shoemaker
>Erik,
I was never Dr. Shoemaker's patient, but have been interested in his work and had a dialog with him for a long time. I know your story and I have been interested, but you keep implying that there is something I should be doing that I'm not doing with respect to your story. You even wrote privately that I and the WPI should be "stopped", because we are somehow missing something or should be doing something differently. I'd like to know what it is, specifically.
Jamie
>Specifically, I ask that you make some attempt to conform to the parameters which caused the creation of the syndrome before you portray the situation as being largely resolved.
Although I am XMRV positive, I see an overzealous attitude that all other factors can be categorized as "Important"
But apparently meaning, "Not important enough to bear in mind when conceptualizing the syndrome.
What if they really ARE important?
My reasoning was outlined in our discourse.
——————————————–
On Jun 13, 2011, at 11:50 AM, Erik Johnson wrote:
(An) Unwillingness to conform to the parameters that caused the creation of the syndrome deprives "researchers" of authority to speak about it, or declare they have solved CFS..
For all I know, they are solving something entirely different, and calling it by the same name.
In fact, that's the whole HISTORY of this syndrome. Repeatedly displacing the original entity to make way for something that vaguely matches.
-Erik
From: Jamie Deckoff-Jones MD
Sent: Jun 13, 2011 10:51 AM
To: Erik Johnson
So because someone disagrees with you, they should be stopped?
From: Erik Johnson To Jamie Deckoff-Jones MD
"Unwillingness to conform to the parameters that caused the creation of the syndrome…."
>Jamie,
Erik's posts often seem like riddles, not sure why? However, he does seem to leave a trail of breadcrumbs toward cyanotoxins occuring at the time of the Incline Village outbreak. The two that I have seen him allude to are mold in Truckee school buildings and something growing in the lake and sewers in this area. I am guessing blue green algae.
Erik has stated that the true Incline Village cohort represented some of the sickest people with this illness – Raggedy Ann Syndrome. Perhaps Erik is looking for people to research how biotoxins may play a triggering role in this illness and how virulent it may become.
Just one of the pieces to the puzzle, but for Erik's own experience one that he believes is not being studied along side the hypothesis of a virus/retrovirus.
You probably understand all of this much more clearly from your discusssions with Erik, but for the rest of your readers could you addresss whether you see environmental toxins as possibly having a role in this illness?
Puzzled
>Puzzled.
I think I can answer that.
And Jamie can correct me if I'm wrong.
Environmental factors are certainly given credence as potential and probable contributors, but are considered secondary, and not materially fundamental to the underlying process.
Fine. No problem.
Let science tell us whether this is the case.
But isn't science at least supposed to have a look, before they engrave this concept in stone?
What if something environmental DID change, possibly accounting for the clusters of illness, and we didn't know, because science assumed it hadn't? … and so, didn't bother to find out?
>Puzzled,
I think that environmental factors are primary for some and not for others. My working model is that anything that sets up a state of persistent inflammation favors viral activation. So the virus is sitting there waiting, then an injury occurs, and the genetically susceptible get sick. I don't think it's just XMRV, but several, possibly many, viruses, explaining the differences between outbreaks and patient presentations.
I don't think that Erik's and my ideas are incompatible, except for his insistence that the effect he is speaking of is universal to all patients, and I don't think that, somehow making me globally wrong and an enemy to the cause.
Jamie
>Exactly!
That is where our perspective is diametrically opposed.
The "effect" appears to be global in scope, possibly affecting all life to some small degree.
That is… until you run into a "Hot Zone" of intense amplification, where the degree goes right off the charts.
As I observe more examples of illness consistent with amplification sites, I have no doubt that by sheer force of presence, investigation will surely be undertaken.
However, since people claim to be looking for clues to "CFS", and I agreed to help launch this syndrome ONLY for this very purpose, I am well within my rights to ask.
>Dr. Deckoff-Jones,
There is no evidence that environmental biotoxins aren't universal to all patients because the evidence has been completely ignored for two and half decades. You say that you think environmental factors are primary for some. Well, just how many do you think it need be for it to warrant serious investigation and how do you suppose we'll ever find out when everyone refuses to acknowledge it?
What would you think of a police investigation that disregards evidence and refuses to interview witnesses? Most people would find that appalling, don't you think?
Jeri McClure Kurre
>Wouldn't biotoxins cover a number of neurotoxins that are being looked at such as blue green algae, mold, tick born illnesses, mercury etc… ? All of these have the potential to cause neurological symptoms/illness.
Perhaps Erik is trying to communicate how he witnessed two of these biotoxins having such a profound impact on this illness. It would seem to make sense to explore if these particular biotoxins could explain large "outbreaks" where mercury pollution or tick born illnesses might be more difficult too observe as an "outbreak" and only seen as a cluster if the right data was being collected.
Are we not also seeing that many of the pathogens showing up in blood tests to be enteroviruses and/or encephalitis viruses such as EBV, HHV-6 and CVM?
Are we not also seeing the history of research iinto encephalitis viruses also playing a role in early vaccination research for polio, yellow fever, tick born illnesse to name a few.
Are we not seeing a role of hormones in this illness such as testosterone, cortisol and thyroid? Don't each of these hormones correlate to have a direct correlation to different 1) stresses in our environment (toxins, climate, illness, physical activity), 2) our age (early childhood, teens & young adults, childbearing years and male & female menopaus/aging) and, 3) those pesky little androgen receptor sites hanging out on viruses?
Where do all these clues lead? A retrovirus, a virus, an autoimmune response that will not shut off or some mystery pathogen waiting to be discovered?
Isn't it just possible that each one of the above is part of the puzzle? If this is within the realm of possibility than why not look back to one of the most defining historical moments of this illness as seen in Incline
Village, Nevada to take a closer look at what the survivors observed. I believe each patient's story is providing the right pieces of cloth and thread, but the big picture quilt keeps alluding our grasp.
Puzzled
>At the epicenter of the phenomenon that went through various names before ultimately resulting in the one everybody knows and loves so well… I saw "an effect"
It was so unbelievable, that, frankly, people on the very spot couldn't bring themselves to believe it.
They all went off chasing pathogens instead.
As told in Dr Shoemakers new book "Surviving Mold", since I couldn't do anything about the pathogens, I focused on "the effect" instead.
When I agreed to become a prototype for this new syndrome, I did it because, "Now they will HAVE to look into this".
One cannot research a syndrome without researching why the syndrome was created… or so I had thought.
But what I discovered is that very reason I had thought researchers would talk to me, is the precise reason they refuse.
The instant they learn who I am, one can see the "I don't want to hear this demeanor".
Soon to be followed by the "Run from the room reaction".
I have been calling the sum of the two,
"The Disinterest Response"
Which is undoubtedly the reason why so little is known about CFS.
>Lisa Petrison said…
To Lisa Simpson:
Yes, I agree. These are the important questions that we all need to be asking.
Using the AIDS paradigm, it makes sense that a retrovirus would have the potential of reactivating all these other viruses.
However — since you honestly seem to want the answer to these questions — maybe you might be willing to consider an alternative.
LP, I'm not wedded to any one theory really. I just want to know what causes the illness – something must. Knowing the cause is fundamental to effective treatments. All treatments, including those considered relatively benign, are experimental until we know that.
A 95% strike rate by the WPI looking for XMRV in patients with this illness does suggest a very strong connection, if not causation to me though. Until there's a true replication study to validate the finding there's nothing to say it was or was not accurate. Still, the fact that there's been a long held suspicion that a retrovirus was the culprit and patients have been presenting with an illness that most closely resembles a type of acquired immune dysfunction, combined with that 95% strike rate, makes it a prime suspect I think. It's certainly impressive enough research to make it deserving of proper investigation at the very least, not half-arsed attempts that are then held up as gospel truth, and which affect research grants. Just one exact replication study by someone is all anyone is asking. It doesn't seem unreasonable to me, though there's about as much chance of it happening as OJ Simpson admitting to murder.
None of this means that research into other possible causes should cease of course. All avenues need to be properly explored. I'm sure none of us, including the WPI, really care if they are proved wrong on XMRV. We all just want something PROVED, not a million studies to debunk that don't actually further research in any meaningful sense, i.e, give us access to effective treatments.
As to the mold theory, how does it stack up in HIV or other immune compromised patients? Does putting them in the desert for any length of time put their illness into remission or cure them as it did Erik? I'm not being facetious here, this is a real question. I personally am not sensitive to any form of mold as far as I know (I've been tested), though when I was at my sickest in the first years, I was sensitive to all manner of things that I'd never previously been sensitive to. I also lived in a city for two years which was dry 11 months of the year, and where mold did not even grow on food if you left it sitting on a bench for a month, yet there was no discernible difference in my symptoms while I lived there. So I don't feel mold avoidance is going to effect any dramatic difference for me, nor really believe that doing so will cure me. I personally am not a believer in the mold theory as cause, though clearly being exposed to it worsens the illness in some people.
Until there is anything to truly negate the WPI's findings, my faith is still in their finding. It's the strongest evidence of a retrovirus we've ever seen and it has not yet been disproved. It still stacks up and I'm still excited by the finding. It will take a lot more than what we've seen so far to dissuade me.
>I never said anything about cure.
As I clearly stated, I soon relapse if I fail to pay concerted attention to this specific substance.
Nor do I have any "mold theory".
A viral-appearing illness swept through our little town and left many chronically ill.
I looked to see if there was any common denominator in those who failed to recover, and this is what I found.
If I can find some variable that appears to be more critical than other factors, is there any good reason not to pursue it?
I acted on this concept and presented my results.
Since this particular circumstance is what launched "a new syndrome" called "CFS", it had seemed to me that anyone "looking for clues to CFS" would have wanted to have some.
But in stumbling over this particular clue,
I unveiled an even more mysterious phenomenon.
They don't.
ALL of them don't:
"The Disinterest Response"
Which is one Helluva weird way to research a syndrome!…. in my "You-arrogant-bastard-why-don't-you-take-your-god-damned-mold-crap-and-go-to-hell"… opinion.
>To Lisa Simpson…
Bravo!
>And their "Don't-ing" is performed with the same gloating pride that scoffers and scorners of Eratosthenes must have had thousands of years ago.
"Thinks he can measure the circumference of the Earth with sticks and shadows?
What a total idiot…. everyone KNOWS the damn thing is flat"
>Lisa Simpson,
I agree that until there is an actual replication study there is nothing to say it's not accurate and that a retrovirus seems to be the most likely culprit for this disease. I also think that there are alot more healthy carriers of HGRVs than what has yet been found, considering that HGRVs have been found to hide in tissues, making it harder to detect in the blood. Considering that there are likely millions of healthy carriers, we need to find out why some people can remain healthy, while others develop horrific disease.
I have also been tested for mold sensitivities and allergies and my results were negative. I do not have the "mold genes". I have no visible mold in my home. I have ME/CFS. I am XMRV positive. I have multiple reactivated infections. I have OI, POTS, cognitive impairment, severe body-wide pain, daily migraines, profound exhaustion, and PEM upon minimal exertion. I am mostly housebound, often bedridden. I will never be able to afford expensive treatments. My attempts at antivirals, antibiotics, and various immunotherapies all made me much worse….from be able to function enough to get out for a few hours a week to being completely bedridden and unable to care for myself. I was out of options and out of hope. So, I decided to try "the desert thing" with the assistance of my husband. We took nothing from our home, following the theory that possessions do become contaminated with toxins. We camped in a tent in Death Valley, California for ten days. The best I was hoping for was a little relief of any kind. What happened was a complete remission during that time. No PEM, no OI, no POTS, no pain. I was able to walk for miles, as opposed to struggling just to shuffle around my house. I was able to do everything I used to before ME/CFS wiped it all away. I had thought that I remembered what it was like to be healthy. I didn't. It was like being set free from years of torture. Never in a million years did I think I could ever feel that way again, but it happened. You can choose to believe me, or don't but I feel that I have a responsibility to share my experience with others and to fight to get this effect researched. Wouldn't you, if you experienced something that works?
Lisa, suppose you had this experience and went back and tried to tell others about it, tried to get it researched so that this information could be used to help put an end to such vast and horrendous suffering. What if when you did, you got ignored, dismissed, called a liar? How long would you keep trying? A few months, a year? How about 25 years? Would? you be able to face constant stonewalling, disbelief, and personal criticism for 25 years even though you KNOW that this is a crucial piece of the puzzle?
Erik Johnson has done exactly that. Thank God, or I would never have known about it. Erik and Lisa Petrison are not trying to present this information to undermine retroviral research. They are not saying that mold causes ME/CFS. C They are saying that this information is an important clue and needs to be researched. I intend to do the same and will not stop until this evidence is given scientific investigation.
Jeri McClure Kurre
>Hi Lisa Simpson,
For what my own opinion is worth, I continue to think that there’s some sort of “master controller” pathogen that works the way that people have told me XMRV works operating in this disease. The illness makes more sense to me with that component than it does without it.
Regardless, it wasn’t my goal to put anybody on the spot with regard to casting doubt upon it. So sorry to have come across that way!
What I meant to suggest was just that XMRV is not the only possible explanation for the phenomenon of every bug under the sun going active in this disease. Too many people seem to be thinking that if XMRV isn’t “it,” all is lost for all of us. I don’t think that’s a good position for us to be in, as patients trying to get well or as scientists trying to find out the truth.
I hope as much as anyone that proper studies reveal the truth about XMRV, regardless of what it is. Perhaps that will still happen.
With regard to your specific questions/comments:
It’s my understanding that HIV goes active pretty easily — for example, that if people get it in a blood transfusion, their likelihood of getting AIDS is quite high without treatment. Certainly factors that screw with the immune system aren’t helpful with that disease either, and I’m of the impression that one reason IV drug users are particularly susceptible to AIDS is not just because of the transmission from the needle but because their bodies are debilitated from the drugs.
The epidemiology of CFS does not suggest a pathogen that robust. As Harvey Alter commented (quoted in my first post on this blog entry), it’s only a “very small piece of the pie” who are exposed to these viruses who get the disease. Few people who have sex with people with CFS appear to get the disease, for instance. (An exception is people living in the same house, which could be related to the environment.) There is some sense that people might be able to get it through a needle stick, but it’s far harder to follow the chain than it is with AIDS. I've yet to hear any studies suggesting that people who have gotten blood transfusions are more likely than the average person to have gotten CFS.
So my guess is that any causative virus must be fairly wimpy, activating only under certain circumstances. That seems to be what Alter is saying as well.
I didn’t have any idea that mold was an issue for me for the first 13 years of my illness, including for a year after Erik brought up the topic to me. I didn’t have any mold allergies at all and didn’t think I was bothered by coming into contact with mold. This stuff works in weird ways.
Mold hides in walls and grows even in very dry climates. There’s one building in Death Valley (humidity 0-15%) that knocks the crap out of me.
Whatever the outdoor biotoxin that’s responsible for the Tahoe epidemic is, it’s capable of growing in dry places. I personally think that it’s a diatom or a dinoflagellate, not a mold. But whatever it is, it does not work in the way that we would imagine that a “mold” to work.
That doesn’t mean that biotoxins of any sort are an issue for you, of course.
Thanks much for your cordial and open-minded response. I really appreciate it.
Best,
Lisa Petrison
>Lisa Simpson, I posted a note for you. Hopefully it will show up soon.
>Jeri, I don't disbelieve you or anybody. As I said, I am not invested in any one theory – though I believe a retrovirus is most likely heavily involved – I think all possibilities should be explored in terms of research. This disease is about as serious as it gets. Exhaustive research is warranted.
I have also experienced a remission like the one you describe (though I never put walking miles to the test) through an "anti-candida" regime 20 years ago which involved a restricted diet and use of various herbal medicines as I couldn't tolerate nystatin or any other drug. This worked wonders for me for two years – I went from seriously bedridden to up and around and even working in a part-time job. However, a majorly stressful life event plummeted me back into illness (and how…)virtually overnight. So, regardless of the fact it effected a remission and gave me almost universal relief of symptoms, it clearly didn't get to the root of my disease. I guess that's because yeast overgrowth is just another downstream result of a dysfunctional immune system – a problem in HIV too – not the cause.
In spite of my apparent remission (and countless tales of others' doing very well on it), the yeast overgrowth theory was also not given any credence in mainstream medicine, so I do indeed know what it's like to face stonewalling, disbelief and criticism, as do all ME sufferers. It's part of what makes the illness so hideous isn't it.
I don't know what causes this illness. Nobody knows for certain yet. All we have are pieces of a puzzle. All each of us can do is limp along as best we can trying to find something which helps us, hoping that that something is not further harming us because everything is experimental until we know the cause. What we do know is that some things work for some people and not for others. For me it's been restricted diets (which
are not maintainable long-term, another reason research needs to hurry up)and antivirals, for others it's mold avoidance or something else. I support anybody trying anything that helps. I am pro choice, and that includes ARVs. We are human beings trying to survive a terrible illness, not a collection of cells in a lab. Choosing or rejecting treatments is our right, as is choosing or rejecting theories as to what causes the illness.
Sharing our experiences of what works and what doesn't is one way we can support and help one another navigate this nightmare we've found ourselves in. Thanks for sharing yours. We also need to respect the thoughts and rights of others in this regard. The shoving of theories down one another's throats is not the way to go about it. Erik's theories on mold (or the bits he is willing to divulge at any given time)have been discussed infinitum on various forums. Not everyone agrees with him. I don't, but my mind would change on that if there were hard and fast scientific evidence to support it, by which I mean the 95% strike rate with XMRV. Otherwise, I put it in the same category as yeast overgrowth – very helpful for some but not the answer. I'm willing to consider it as a piece of the puzzle. I agree it requires further research. If I had to choose between the two, I believe the retroviral research should be the priority right now. The evidence out of the WPI is too strong to write off.
>Hi Lisa Simpson,
Stories about people getting extended remissions as a result of treating candida or Lyme are really frequent amongst CFS sufferers. Sometimes they last indefinitely, often not.
Both candida and Lyme make a toxin that is very similar to the ones made by environmental biotoxins (mold, cyanobacteria, dinoflagellates, brown recluse spiders, etc.). Insofar as people can get those pathogens under control, their toxic exposures to go down, in much the same way that people’s toxic exposures go down when moving out of a moldy house.
Apparently, getting total toxic exposures below a certain threshold is good for us.
As the illness progresses, that threshold often becomes higher. Just moving to Hawaii, or just addressing candida or Lyme, is no longer enough. This is where Erik’s “extreme avoidance” concept comes in — where eventually, the tiniest amount of this sort of toxin is enough to prompt a response. That level of avoidance is not much fun!
At the very least, biotoxins seem to be something that our bodies are “reacting to.” Removing the current toxic exposures (generated by internal and/or external microorganisms) has the potential of creating improvements or even wellness. Until a “cure” is found, that seems worthwhile in itself.
The question here is whether the toxins actually are responsible for the progression of the illness. If we can avoid getting sick(er) as a result of just controlling the toxins, that suggests that the toxins are not just a “trigger” but a root cause — even if the illness would not be present if (say) a retrovirus were not also present.
I don’t know the answer to whether the viruses in CFS would be a problem without our having had specific toxic exposures. I don’t have enough cases. I do hear awfully frequently from people, like Jeri, who trace permanent downslides to toxic exposures.
Unfortunately, like Jeri, most people have no idea that their environment is a problem until they get clear of it and then return to it. Until we can get everyone with CFS to do the exercise, there’s no way to know what percentage indeed are affected.
Here’s another example of someone whose illness progression seems to have been driven by toxins:
http://www.youtube.com/watch?v=TkUVlQNQGB0&feature=channel_video_title
My tentative belief is that the pathogens in our illness (including XMRV or whatever other retroviruses we have) are being activated by the “toxic terrain” of stored biotoxins (including toxins made by Lyme, mold, etc. etc.). If that’s the case, one solution might be to get pharmaceutical companies to help us to figure out how to detoxify our bodies from those biotoxins.
Based on what I know about pharmaceuticals, creating drugs to help the body detox sounds a lot easier than developing ones to kill bugs. Plus I’d rather not be on those bug killers forever, and most people with CFS have a hard time tolerating them or using them effectively.
Thanks for bringing up your candida experience. I think it’s really important.
Best, Lisa
>Regardless of who gets helped by what, I saw a strange thing in Incline Village 25 years ago, and despite being sufficient reason to start a syndrome, this phenomenon has never been researched, and it has become more than clear that the intentions are that it never will.
Ironically, it was "CFS advocates" and "CFS researchers" who co-opted the syndrome and took the lead in finding reasons that this peculiar phenomenon should never be investigated.
>Over the last quarter century, I have learned that "OK, tell us what you want us to look at" does not really mean they are interested.
The grudging way that they needed to be dragged over to the evidence is an indication of their real intent to crush clues, apply sheer skepticism, and throw up every objection possible for why this evidence "Doesn't prove anything".
While purporting to be "scientific", what they are really engated in is an antiscientific form of "Clue Crushing".
The only way to identify a real-scientist is to dangle a clue in front of them to see if they bite.
When you've got 'em hooked and the line goes tight, you know you've got a "live one"
>I have to agree with Erik, Lisa P, and Jeri. I am another one who listened to Erik and climbed out of hell. Erik witnessed something, studied it, and learned how to avoid it…and doing so consistently keeps him from being deathly, bedriddenly ill. It's done the same for me. It's been a three year climb from bedridden to mostly okay.
You know, there are quite a few of us. It's probably time someone looks into this. It's a shame that as patients we are having to develop our own research, conduct our own science experiments using our own bodies as guines pigs, create our own protocols, and construct our own safety nets to catch each other when we fall. We are truly on our own.
>"In the end, science will tell us who is right, irrespective of personalities, unless the work isn't done at all." -Dr. JD Jones
Reminds me of a parent who removed his children from a school that was apparently making them ill because they would come home sick every day.
When the school authorities told him he had no scientific proof that the building was responsible…. he gave this PRICELESS reply:
"We can't WAIT for science. We have to ACT on the EVIDENCE!"
You just can't put it any plainer than that.
>Newton's Third Law:
"For every action there is an equal and opposite reaction".
More evidence… more denial.