If it looks like a duck, and quacks like a duck, we have at least to consider the possibility that we have a small aquatic bird of the family anatidae on our hands.
~ Douglas Adams
I have to hand it to Dr.’s Switzer et al for responding to the vaccine question. Even if it was a very literal response, the findings were imparted clearly and believably. They looked for mouse viruses in 8 vaccines currently on the market. None of the vaccines were grown in mouse cells and, not surprisingly, they didn’t find any mouse viruses. No MLV’s at all in vaccines produced from chick, macaque, guinea pig or hamster cells. However, they did find human, avian and porcine endogenous retroviruses that they already knew were there, plus a new hamster virus in the vaccine grown in hamster cells… but it was DNA only, not a speck of RNA, so no worries… No Evidence of Murine Leukemia Virus-Related Viruses in Live Attenuated Human Vaccines. Switzer. Their conclusion: “We found no evidence of XMRV and MLV in eight live attenuated human vaccines further supporting the safety of these vaccines…”
What a concept! Rescuable incompetent ERV’s. They knew about it in the early 80’s, and knew that there were infectious animal retroviruses in vaccines, but decided not to worry about it. And why can’t these parenterally administered xenotropic and polytropic viruses infect humans? “Because they can’t”. “They are inactivated by human serum.” Now that certainly is sound scientific reasoning. And they accuse patients of poor scientific discourse? Scientists please, take your blinders off. There is a whole generation in which 1 in 100 is autistic.
This is where the science is, if anyone cared enough to apply it to us: Endogenous retroviruses and neighboring genes are coordinately repressed by LSD1/KDM1A. Macfarlan
Here are a few good ones:
- Risks linked to endogenous retroviruses for vaccine production: a general overview. Dewannieux
- Isolation of an Infectious Endogenous Retrovirus in a Proportion of Live Attenuated Vaccines for Pets. Miyazawa
- Endogenous retroviruses as potential hazards for vaccines. Miyazawa
- Divergent Patterns of Recent Retroviral Integrations in the Human and Chimpanzee Genomes: Probable Transmissions between Other Primates and Chimpanzees. Jern “According to the “breakout” hypothesis, copackaged RNA of partially defective ERV elements occasionally may recombine, thereby rescuing and optimizing retroviral function during reinfections from within.”
But Dr. Anon, PhD, reading my blog, wants to “puke” because I am taking properly prescribed drugs for an off label indication? What a world! Tenofovir is prescribed for chronic Hepatitis B. Does that make you want to puke? We have non-HIV, non-HTLV AIDS, exactly analogous to non-A, non-B hepatitis before C was isolated. Wikipedia article: Off-label Use. The off-label prescribing of existing arv’s is completely legal. The only reason to prohibit it is because of the enormous financial implications if it works. Only a very few people have tried it. No disasters yet attributable to it, unlike most of the pharmaceutical alternatives; and to the scientists reading, you wouldn’t believe the dangerous crap my patients come to me taking, in combinations that have no research at all behind them to tell us about possible interactions. In my case, the only adverse effect of my experiment with arv’s that I can point to is that my straight hair became curly; this happens occasionally with chemotherapy and other drugs.
Tenofovir treats Hepatitis B. Raltegravir inhibits Herpesviruses. AZT has been noted to impact Sjogren’s, which seems to be overrepresented in our patient group. Protease inhibitors kill some parasites. I referenced a paper in the last blog in which it was reported that HAART brought about an impressive remission in a patient with advanced MS (and some of us, myself included, have MS light). Those “confounders” are good things about the drugs in clinical practice; all drugs have good things and bad things about them for a given individual. As a clinician, I love it when a drug hits two things in a patient, making it more likely that the cost/benefit ratio for that drug will be favorable for that person. However, the idea that my response to arv’s is because they controlled my Herpesviruses is almost as ludicrous as the idea that Dr. Snyderman’s cancer cells went down because of a placebo effect. Twice.
This seems like a good time to note that I have never had mono and am serologically negative for EBV. Since I was an ER doctor for 16 years and exposed to lots of mono, my body must be pretty good at keeping invaders out. Ali’s EBV tests are consistent with prior infection, and we both have low titer IgG for HHV-6, like almost everybody. There is really nothing to suggest that we have activated Herpesviruses as part of our picture, opportunistically or otherwise. Ali falls squarely into the Lyme group, not the activated virus group, and opportunistic infectious are not really a part of my clinical picture at all. I catch almost nothing. It’s the inflammatory effect of the physiological changes caused by the persistent immune shift to fight viruses so effectively that creates the subjective illness. Patients, and doctors, often confuse the symptoms of persistent inflammation with an active infection that needs to be killed or treated. There is also a subset of patients that catches everything and has ongoing problems with activated viruses. I have heard from people who have had mono and shingles numerous times.
Most novel uses of existing drugs are figured out serendipitously. Somebody with two things takes a drug for one thing and the other thing gets better. Occasionally, somebody actually connects some dots and tries something on purpose. If it gets reported, it is called a case study. In a sane world it would be followed with an open label trial and then a double blind placebo controlled study.
In response to the criticism that I’ve lead thousands of innocent patients down the garden path, please read what I’ve written, before jumping to conclusions. I have never said anyone should take arv’s. My point is that it should not be prohibited, and most definitely, the decision should not be in the hands of a bunch of lab scientists that have never treated a patient. A retrovirologist has no basis for an opinion about treatment at all. That they would presume to comment is a sign of disordered thinking right there.
As I have said all along, ours was never a good experiment. What I have reported here is strictly clinical medicine. We were on an uphill course for about six months before starting arv’s, after quitting Lyme treatment. I do think that antibiotics were making us worse and when we stopped them, we went uphill, though an LLMD might say our treatment had worked:). I believe that arv’s helped us, though incompletely, not surprising for patients that have been sick for many years, who most likely have a high proviral load that continues to replicate mitotically. We still seem to be doing better than might be expected, but I have no way of knowing how we would be at this moment had we never taken them. The only marker we had to follow, TGF beta-1, initially very high has normalized for both of us over a year and a half (see numbers posted here; the pending results from 11/30 were normal TGF beta-1 and elevated C4a, for both of us). It is a very bad disease and we both feel lucky that our suffering is reduced. I wish that the science was keeping up so that we might have a better way of monitoring our therapy. We need a viral load measure or RT assay to follow, understanding full well that we might have more than one virus each and replication incompetent contributors. My biggest concern is the possibility of viral resistance, not toxicity of the drugs.
As far as the arv elist is concerned, I try to create a safe place for patients taking arv’s to discuss their experiences. Occasionally, I answer a question, but mostly, it is patients talking to patients. Everyone on the list, thirty or so of them, decided to take arv’s on their own, and all have their own prescribing doctors, except for a few that live outside of the US. In my practice, since I am willing to prescribe arv’s for an extremely informed patient, I must not be pushing it very hard, since none of my private patients have yet swallowed an arv.
Unfortunately, it is still the patients least likely to respond who are trying it, people who have been sick for a very long time with advanced disease that feel like they have nothing to lose. Much scarier to contemplate, but with a much greater possible upside, is the question of what would happen if newly crashed ME/CFS or ASD patients were treated quickly after onset of symptoms. This obviously needs to be investigated, but in a controlled setting. It will be very expensive to do safely, so is unlikely to happen for either of these conditions (cancer more likely). People don’t like to be wrong and there are lots of wrong, powerful people in this story.
My husband has been acting CFSy lately. When his symptoms flare, I am always impressed that it must be an infectious disease. All four members of my nuclear family have certain common symptoms, e.g. painless ocular migraine, which was a rare condition when I was an ER doctor 17 years ago, and orthostatic intolerance, of a form that nobody had ever heard of a few decades ago. Vascular instability and autonomic neuropathy in four members of a nuclear family, two sick, two not. Husband and wife not even distantly related. I thank God every day that my son isn’t autistic. I vaccinated him selectively, for the wrong reasons, but I have heard from that woman out there who, like me, has CFS and a CFS daughter, plus an autistic son. Is it because I didn’t give him the Hep B vaccine (which is not a live vaccine, but causes persistent immune activation over a long period of time)?
I get letters now and then suggesting that I do not know how horrible polio and other infectious diseases were before vaccines. That isn’t true, I do know. But just because the vaccine program saved many people doesn’t mean that we shouldn’t look at problems that may have been caused by it, and modify our recommendations now for people at high risk, e.g. people with CFS and new offspring of ME/CFS women. We desperately need extensive epidemiological studies to find out what happened when. If you want to look at the bigger evolutionary picture, we have changed nature’s culling process. If you take the starfish parable from a few blogs back to it’s natural conclusion, throwing the starfish back is a mistake, because they are vicious predators that overbreed and damage the reef.
In the meantime, the backlash from the flash of illumination has started. The Mayo Clinic says SSRI’s (which many ME/CFS patients don’t tolerate), sleep meds, GET and ‘therapy’ are what we can have as far as treatment goes. That’s the best they can do for a million sick people? On their website: “More than 3,300 physicians, scientists and researchers from Mayo Clinic share their expertise to empower you to manage your health.” Shame on them. May the doctors that came up with this page never have to get sick, or have their child get sick, with a horrible debilitating disease and be faced with such options. May they find some shred of compassion in their hearts of stone before that fate can befall them.
I am writing to you today from the Louisiana bayou. My husband’s 50th birthday present a couple of months ago was our first RV, and this is our first trip. We have always wanted to try the RV lifestyle, but now even more so, since we love to be in nature and it is the only way that I can still travel comfortably. Our son was just accepted to Tulane with a big scholarship, so we decided to take him to New Orleans to help him decide what he wants to do. Ali didn’t come on this trip, but will come on the next one, shorter and closer to home. The trip has been exciting, to say the least. We survived the worst blizzard in 40 years in north Texas and a tornado warning in southern Louisiana.
I love the spontaneity and limitless possibility of seeing the world this way. Change is usually so difficult with this illness, but everything I need is close at hand and comes with us when we move. The pendulum of my disease continues to swing, as always, while I practice the art of transcending symptoms, living as many full moments as I can. Right now, my husband and son are fishing in the rain. We’ve had the worst luck with weather. Adversity is giving us all the opportunity to practice acceptance and work on our interactions in a close space. Like life, the difficulties have been punctuated by amazing moments; yesterday we watched from our canoe as a small otter caught and fought a huge fish, then defended it from a Great Blue Heron. This part of the country is very wild and alive. When I couldn’t sleep for a while last night, I listened to wonderful, unfamiliar night noises.
And the breaking news? Lo et al just retracted, saying the work was perfect, but the conclusion must be wrong, since nobody has replicated it yet, except for one other lab. Therefore, enough money wasted. Now there’s some ironclad logic for you.
>Lisa if you think you have toxic mold and are now cured great. Toxic mold is not ME.
>@PC December 27, 2011 8:46 AM "So, I think that Abbie Smith's blog discussing a potential retrovirus as causal in MS is about as relevant as we can get at this time with the limited research so far."
That blog entry discusses no such thing, it discusses an ERV – not a retrovirus. Yes an ERV that was part of a retrovirus long ago – but as Abbie pointed out in her part 1 post:
"So dont worry, you arent going to get infected by with an 'Multiple Sclerosis Virus' from kissing someone or having sex without a condom. You were infected with the virus associated with MS tens of millions of years ago."
Do you really not understand that ERVs are not RVs ? They're fossil bits of RVs preserved in animal DNA, and some of them do unfortunate things – but they are NOT active retroviruses. You can't blitz them out of a human with ARV medication. It's remotely possible that some ARVs might help supress expression of an ERV that's doing some things that make a person ill, but an ARV is likley to be a very dumb way to achieve such an effect. Turning off genes and pseudogenes can be done without hugely toxic effects.
An ERV proposition of M.E/CFS invovlvement is perfectly reasonable and could even lead to a testable hypothesis – but it would having nothing to do with a primaray infectious caus. ERV involvement implies a heritable trait, and although such a trait could lead to susceptibility to infection, there need be no cladistic relationship between the ERV progenitor and the opportunistic infection exploiting any vulnerability caused by a wayward ERV.
M.E/CFS as a genetically mediated autoimmune disease makes a great deal more sense than persistent retroviral infection. None of the advocates of the persistent infection proposition have provided any answer,(beyond hopeless speculation) to the gender imbalance problem (no need for anyone to reprise the HIV was only seen in gay men, retroviruses are under diagnosed, circularity) and until there is a plausible hypothesis as to why there is a gender imbalance in M.E/CFS diagnosis, the persistent infection proposition remains logically dubious.
>@Caroline. I have no problem with ARV's it made Andrea well.
Robyn
>@In Vitro (Wessely school psychiatrist)
Do you know that one of the main reactivations of ERVs are retroviruses and that the human immune response shown by Mikovits and the Ruscettis cannot be to an ERV only an MLV virus.
"M.E/CFS as a genetically mediated autoimmune disease makes a great deal more sense than persistent retroviral infection. "
HGRVs would cause autoimmune symptoms and affect the genetics of a person. They would also pass from parent to child.
The gender imbalance problem that you believe exists has not been shown to exist scientifically because the data on which you rely was not gathered using objective criteria. It rather suggests a sexist imbalance problem. So nothing is dubious about this hypothesis only what you have relied upon as evidence to support your beliefs.
Some ARVs also affect many other process such as down regulating NF-kappaB. Do you know anything about NF-kappaB?
>Oh and Caroline How I treat my illness is none of your business, so you can do just that and stay out of my business. Care to share what your treatment is? Save your breath as you are just not worth wasting any more of my time on.
Robyn
>"And BTW Jamie, you pushing bad science won't get you a treatment. If your treatment depended on your scientific abilities, you would have to wait more than 20 years, more like for ever. Arguably you would not be waiting doing nothing, you would be doing something – alas, pushing pseudoscientific BS."
Love it! So true. Best comment on this blog for a long time!
>It should also be pointed out in vitro that if you don't include all diseases a retrovirus causes you probably will have an imbalance in who is infected. That is if you don't work towards producing assays that work rather than the popular game of trying to find as many as possible that don't work.
>"Love it! So true. Best comment on this blog for a long time!"
Kind of stupid really considering Jamie is getting treatment. It may not be perfect but this is early days for HGRV science and treatment.
>In Vitro,
You are not keeping up. Didn't you read this from the last blog? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3131726/?tool=pubmed
MSRV is most likely a replication competent ERV. This paper discussed EMs of viral particles and viral load measures going down in patients treated with interferon b, amongst many other things. And I discussed a published case report showing that HAART impacted a severe MS patients disease, including reversal of serious neurological impairment.
As for the apparent gender difference? It may be a susceptibility difference due to hormonal risk factors. Also, men deny and hide the illness more than women do. If properly studied, I suspect it would be found that there is a pattern of maternal inheritance, rather than true sex linked difference in incidence. Virus integrated into mitochondrial DNA would fit such a pattern.
Jamie
>See Jamie does know exactly why she said what she did, pity you all fail to do the same.
>I also know of men with my exact disease who have been tested much more and diagnosed with "real" diseases, like MS for example.
It's the way medicine and psychiatry work- women are hysterical, they only *think* they are sick. We'll dump this in a waste basket dx.
But this man? It must be something real!
This is not to say I don't know men who aren't tortured by this dx. I've noticed- and in the past written papers- that men get taken more seriously. (I've researched at both the undergrad and the graduate level on attitudes regarding this disease.)
AlphaHusky
>Sigh…
Men are more likely to get "valid" dx's. But of course many men are also dx'd with this and suffer the same disbelief.
AlphaHusky
>Hey why not give us all ARV's it may just protect us from contracting HIV. There is a big study going on in Africa and the meds are free. No talk of how dangerous they are for that.
>@ Tony Mach
you're constantly trying to prove things that aren't, while you're not in the position to do so, and while you even can't disprove the fact that a retrovirus(or more) is the cause. And yet, you're are preaching your gospel as if it was a fact. Jamie is not preaching, nor she claims what she says a fact – it's just a hypothesis backed up with interesting scientific facts.
I think your tunnel-vision doesn't allow you to read what is there. And if the gospel of Ms. Smith suits you better, you better stick to her, to get the answers for you disease, but I can tell you this: she and her retrovirologist- colleagues are even not able to find all the creatures she's studying. How pathetic is that ? Harald zur Hausen recently said that 40% of world's cancers are caused by viruses. And I'm sure, this Nobel prize winner's saying is even not a fact, just a raw assumption. Is it by definition wrong ?
>http://blogs.wsj.com/health/2011/12/27/second-high-profile-xmrv-related-paper-retracted/
Lipkin quote:
"He said that all the scientists and doctors involved in the NIH study — including Alter, and other co-authors of the retracted PNAS and Science papers — “are committed to completing this study because none of us believes that the issue of retroviral infection in CFS/ME is resolved.”
>Let's get it right Lipkin should have said nothing in science is ever resolved. The multi lab study can never be definitive and only continued research into the viruses should continue.
>@JDJ December 27, 2011 12:20 PM
Where in the paper you quote – or any other published source has anyone suggested that the HERV-W family have any replication competence ? The only reference in the F.P Ryan paper to replication competence is in respect of the previous lack of an established identity of MRSV. To date the only HERV family suggested to have a degree of replication competence is HERV-K, and even then there is no associated established disease causation process nor any evidence for a broad presence of HERV-K activity across the human population. Active HERV-K replication has ben postulated to occur within limited population pools only.
As to explaining away the gender differential – sure carry on, anyone can come up endless maybes when not confronted with a demand for reasoned deduction. But then we are all free to describe whtever illness we choose to name, entirely within the parameters of our own choosing. If that is the route you are intent upon then it would be more honest, rather than using the terms M.E or CFS, for you to talk about Deckoff-Jones Disease
>"As to explaining away the gender differential – sure carry on, anyone can come up endless maybes when not confronted with a demand for reasoned deduction. But then we are all free to describe whtever illness we choose to name, entirely within the parameters of our own choosing. If that is the route you are intent upon then it would be more honest, rather than using the terms M.E or CFS, for you to talk about Deckoff-Jones Disease"
In Vitro that is because as member of the Wessely school you make the same error in only using subjective criteria. Show us one paper using a criteria of inclusion for ME that shows a gender difference?
>What is the party line on the electron micrograph?
What is it a picture of?
>To those that continue to say Lisa has toxic mold and ME, I understand where you're coming from. I used to feel the same way. My first few forays into the desert with Lisa yielded no results. It was maddening to think that someone could go to the desert and be hiking miles within a week. My severe POTS, severe PEM, and every other classic ME symptoms told me this wouldn't work for me.
In fact, it does work. It just didn't work overnight. Now I'm driving long distances, hiking, working 40 hours a week from my computer, and I've really only gotten my feet wet with this. Erik Johnson took 6 months to be able to hike long distances, and I've only been out in the desert for 2 weeks (before this, I did moderate avoidance for a 2-3 months by living in my custom-built trailer in big cities)
The reason why I won't go public is of course, because I know what people will say (the same things they say to Lisa). Lisa is one of the few of us brave enough to press with the truth and attach her full-on identity to it. We should be so lucky that there's at least one person to do the dirty work.
For those that say I don't have ME, I've been verified by the top ME/CFS doctors in the US including Dan Peterson. I have the exercise stress tests and all the classic immunological markers to prove it.
I know this isn't the best place to continue talking about the mold thing, but occasionally I think it's a good idea so that people in position to do this (or do something about this) hear that it can really help someone with classic ME/CFS.
>City changer you are talking about mold to ME patients. Why?
There are loads of very sick people who have no mold around them at all. Mold cannot cause the numerous signs and symptoms found in ME.
>I prefer not to isolate "mold" as the trigger. I think that our immune systems are overreactive or autoimmune. The Rituximab trials are and will prove as much. Getting in a pristine environment is an exercise to lower the reactivity to biotoxins — in my mind, I think of it as the inflammation-dampening quality of ampligen, or the main quality of Rituximab. It's just non-toxic.
As for your statement that "loads of very sick peoploe who have no mold around them". Can you say with certainty these people are not surrounded by noxious biotoxins? Everyone that has done mold avoidance has said we don't know what is causing this overreactivity. If we knew, we'd be testing it. So how could you say what we don't know we're reacting to, isn't there? That sounds like wishful thinking rather than logic to me.
The biggest mistake with the mold warriors has been to focus on the word "mold." I guess they needed something to describe it with for consistency, even if they didn't know what it was. When people think of mold, they think of visible black stuff. I moved to a house that no one's ever lived in in the middle of the desert and got no physical improvements. When I moved to a trailer constructed with aluminum and foam, that's when I really began improving. So again, I never saw mold in that house, yet I couldn't get better in it.
It's highly inconvenient to think of biotoxins being the cause of our immune overactivation. Because most of us are not in a position to do jack about it. Whether or not that's the main reason for the resistance to this idea, I'm not sure.
The bottom line is I have ME and biotoxin avoidance enabled me to hike for 3 days straight with no PEM.
>Bolognese
MLV viruses infect memory B-cells and after initial infection these will be found in tissues not blood
>You can't just say our immune systems are overactive. The evidence already shows they are but why?
Rituximab depletes B cells, so why do most say they get sick once the treatment is stopped?
MLV-related viruses infect B cells, so it makes sense that depleting their numbers could reduce symptoms and that they would return later as the number of infected B cells increases again when treatment is stopped.
You do realise that Rituximab is not harmless don't you?
It is true you cannot be sure if there is no mold, so why have you not cured yourself of toxic mold in 30 years if you know why you are sick from a disease that is not ME? The bottom line is your experience is subjective and there is no evidence you had or have ME. How can mold explain the full range of signs and symptoms found in neurological ME?
>"Bolognese
MLV viruses infect memory B-cells and after initial infection these will be found in tissues not blood"
So a person cannot be ruled to be negative using a blood test and even then if the level of virus is too low and has defeated the immune response it would still not be definitive.
>Laura L,
I have to assume everything you say is untrue since you post a ridiculous falsehood, that Ms. Johnson made money from Osler's Web, and lots of it. I wrote Osler's Web. It took nine years to research and write. I ended up in bankruptcy court long before it was even published due to the extreme poverty in which I lived while reporting it. I lived on rice cakes, beans and water in the six months just prior to its publication. I never received a penny in royalties from the publisher, and since it's publication I've spent a lot of energy simply trying to defend it from voracious plagiarists. Within 18 months of its publication, I was living on food stamps, and life hasn't changed a whole lot since then. Trash the book all you want, but don't make up absurdities about the fortune I earned by writing about it. And, PS, among myriad other revelations, the book did break the story of the CDC's theft of CFS research money and launched two federal investigations, the conclusions of which supported the book's findings. There is so much you would not know about the government's nefarious history in this disease had the book never been written. Finally, is it the fault of the messenger who reports information that people in a position to act on it fail to act? Nevermind. This isn't a dialogue. I would only add that you wildly underestimate the forces arrayed against discovery in this disease, which was one of the great lessons I learned from writing Osler's Web.
>Thanks Hilary for continuing to help everyone understand what we are really up against.
>To anonymous:
My point was that rituximab is harmful but it does give us a pretty clear indication that the presentation of ME (note: I did not say the cause) is autoimmunity/overreactivity. I think it and (part of) ampligen are working on the same mechanisms as biotoxin avoidance.
Within the framework of our understanding of biotoxin avoidance, one explanation for why people get sick when their b-cells come back is that the b-cells that regenerate behave in the same way as the ones that were killed off. This could very well be due to a retrovirus. I don't believe anyone in the biotoxin avoidance group has said we don't believe it may be a retrovirus causing the autoimmunity. In fact, this has been my inclination all along, but it's not my place to voice my speculations.
"so why have you not cured yourself of toxic mold in 30 years if you know why you are sick from a disease that is not ME?"
In response, I have had ME for 5 years. I never said I'm not sick from a disease that is not ME. You're saying I don't have ME, as I suspected people would say after I improved from biotoxin avoidance. What's funny is: I've had a huge presence in the ME/CFS community for the last 5 years, and before this no one has ever doubted that I have classic ME/CFS. Again, the doubts now are very predictable because I had the same doubts of Lisa, Erik, Jeri, etc etc.
"The bottom line is your experience is subjective and there is no evidence you had or have ME. How can mold explain the full range of signs and symptoms found in neurological ME?"
Of course my experience is subjective. However, when's the last time you've subjectively felt that you could hike 40 minutes 4 days in a row (I just came back from another hike) when you couldn't walk through the supermarket without crashing for the last 4 years? Also, where's your proof that you have neurological ME? Why don't you tell me what your proof is and I'll respond by telling you truthfully whether I have the same.
If you can't offer proof that you have ME (because no one can–I prefer to rely on experts like Dan Peterson that have seen ME patients for the last 20 years that know how to piece together the clinical picture of ME/CFS), then you are in no place to doubt the diagnosis corroborated by Dan, Susan Levine, Enlander, Benjamin Natelson, Staci Stevens, Mark VanNess, David Silver, Huy Hoang, Jonathan Rand….I could go on but that would be gratuitous. Unless you think all of these ME/CFS specialists are wrong.
>"My point was that rituximab is harmful but it does give us a pretty clear indication that the presentation of ME (note: I did not say the cause) is autoimmunity/overreactivity."
We already know that the immune system is overactive. But ME has not been shown to be an autoimmune disease. HGRVs can cause autoimmune symptoms. I suppose really the entire belief in what a autoimmune disease is has to be examined. Why would the body behave in such a way. Retroviruses would explain this.
"the b-cells that regenerate behave in the same way as the ones that were killed off"
The only hypothesis so far has been MLV-related viruses. What else would explain it? Ideas are needed but so far that is the only complete one that can be tested.
Biotoxin will likely be able to reactive MRVs so avoidance would help anyone infected. However there is no evidence that you have ME. Its not that anyone doubts you but there have been few using appropriate diagnostic criteria and still there is no objective measure attached to any of them. It would be very easy to add in a very simple tests so that those who do have a neurological disease can be separated out, but would you still belong to the disease called ME? We need scientists to show what has altered in your body to have an scientific basis to claims such as these or they remain subjective like the PACE fatigue trial.
Whether I have ME or not is irrelevant, which is my point for all of us, because no one trapped in this mess are getting anywhere whilst we use subjective criteria and use subjective measures in every study. No data is being gathered, instead we keep entertaining this pseudo science that the Wessely school feeds off. I'm sure you will agree with that. If there is one thing everyone should agree with it must be producing scientific studies.
>@ Invitro
Why does a "gender imbalance" disprove a RV cause.
Are you suggesting that transmission rates of HIV are 50-50 in men and women?
Secondly look at the original discovery of XMRV/MLV it was in prostate cancer.
Incase you haven't noticed women do not have a prostate.
Until you can account for the numbers infected in total then your presumption that ME is genetic due to the "gender imbalance" and discounts a RV cause is fundamentally flawed.
Flex
>Another thing: I very strongly believe that biotoxin avoidance is not a cure. I probably disagree with Lisa and Erik on the role of virii, mainly because a retrovirus fits my profile like a glove. However, until there's adequate treatment for it, this is something that I feel is worthwhile doing. Now that I'm doing better, I feel that that leading a hardcore lifestyle is a small price to pay for not living 24/7 like a ME/CFS patient. As a very sick patient, all I ever had my eyes on was a cure. At a certain point, we just want to feel better. This is why patients take ampligen knowing that it in all likelihood will not cure them, isn't it?
Biotoxin avoidance to the T is a very difficult endeavor. Very few people end up doing it, and I can understand why. It's physically and mentally challenging, and socially because of potentially rending of familial and communal relationships. No doubt, this exercise takes a meaningful sacrifice.
So just so we're clear: no one has said biotoxin avoidance is a cure. No one has said mold warriors avoid because they don't believe in a retrovirus. People just want to feel better (and sometimes significantly better) while we wait for the politics of retroviruses to give the science of retroviruses a real chance.
>@anonymous
Of course we need concrete tests for ME. But in the meantime what do you suggest? That we sit back and not tell people if what works for them, because we might have ME, toxic mold illness, or something else? If everyone waited for a biomarker to come around to start communicating honestly and scientifically to the best of our abilities in the absence of a biomarker, this blog would not exist.
Let me ask you: if you had/have ME, could barely walk the length of your driveway without crashing, hypothetically took a vacation tomorrow to the desert and were able to hike 4 days in a row, what would you do? Would you tell other patients that could benefit? Or would you keep it to yourself because there's no single test to communicate your real disease?
>@citychanger
Your improvement may have nothing to do with avoiding biotoxins. It may have been the natural course of the disease ME or you don't have ME. We really have no idea as there is no data so you are not actually talking scientifically but stating your opinion.
I have said that I suggest as do others that we get objective measures attached to ME criteria and we start to split apart the bin all of us are in. No biomarker can be confirmed at this time (even those already found when using a differential diagnosis) because the type of patients change with every study. It is currently a no win situation.
>Rates of HIV infection alter over time and are not what some imagine them to be.
"The proportion of women living with HIV/AIDS has risen steadily in recent years. In 1997, 41% of HIV-positive adults were women. Three years later, that figure had risen to 47%. In sub-Saharan Africa alone, an estimated 12.2 million women carry the virus, compared to 10.1 million men."
http://www.un.org/ga/aids/ungassfactsheets/html/fsgender_en.htm
"Men are more affected by HIV and AIDS in the United States than women. Male adult or adolescents accounted for 3 out of 4 new HIV diagnoses and new AIDS diagnoses in the U.S. in 2009.
The HIV transmission route leading to the most AIDS diagnosis in 2009 was male-to-male sexual contact, followed by heterosexual contact and injection drug use."
"CDC statistics show that in 2008, 73% of persons living with a diagnosis of HIV infection were male adults or adolescents."
http://www.avert.org/usa-transmission-gender.htm
>@anonymous. That is a very predictable hypothesis from someone that has never experienced this. The "natural course of the disease" doesn't happen within 2 months when you've been getting progressively sicker for 5 years.
But anyway, I won't argue semantics with you. The medical and political landscape of ME/CFS is ripe for devils' advocates. You're absolutely right in the sense that until there is a biomarker there will always be doubters that Lisa, Erik, Jeri, Beth, others, and myself actually have the same illness as you do. In fact the same goes for anyone that has ever improved from ME/CFS.
You can also say the same as Mary Schweitzer, Bob Miller, and other long-time advocates, but you probably won't because they got better from a drug even though we have nearly identical immunological profiles.
It doesn't anger me in the least to be the object of skepticism. If this piqued the curiosity of any patient in the position to do this, then that's really the best I can hope for. I'm not interested in proving my diagnosis to anyone else.
There are a number of us willing to convey our experiences.
>" The "natural course of the disease" doesn't happen within 2 months when you've been getting progressively sicker for 5 years. "
How would you know when you don't know what you have? None of us do.
Everyone conveys their experiences but we need scientific data and that is what we are being denied.
>The only people that believe people get better naturally from severe ME/CFS work for the CDC.
I've never believed that people get better from this illness from doing nothing. I've alternated between doing nothing and doing more than just about anyone I know for years. Nothing got better, my heart deteriorated surely but slower.
As for scientific data:
*Positive for enterovirus per Dr. Chia
*Single-digit NK cell count and Secretory IGA count
*rnase l dysfunction
*very high IL-8
*24-hr holter monitor showed classic ME/CFS HR patterns (interpreted by Dan Peterson)
*Exercise stress test (one done by Pacific Fatigue Study Lab, other by Dan Peterson) showed VO2 max and anaerobic threshold patterns typical for ME/CFS patients
*POTS (resting: 90, immediately upon standing: 120)
*abnormal cortisol production over course of day
*elevated HHV-6, coxsackie, EBV titers
*very high H2S per urinary test
*very elevated nagalase
*methylation cycle block
*very high C4a, TGF-Beta 1, MMP-9
*very low VIP, MSH
Again, I would argue that as top ME/CFS physicians have learned to identify the clinical picture of this disease, most patients that have this disease and have been studying / interacting with it for years know what a classic ME/CFS patient looks like in presentation and on paper. You can draw your own conclusions.
>@citychanger
Actually people who have been less sick at the start and have a avoided doctors are being said to have had more of an improvement. Then again that could be the false wellness beliefs seeping in. It has nothing to do with the CDC fantasy. Get better doesn't mean cured you know.
I know others who have controlled their disease and improved a little by doing less and resting, but that doesn't mean they have ME or explain what ME is or is not. If HGRVs are responsible it could be explained by the initial activation of the viruses and the integration sites.
You presented a string of data but where is the evidence of change in any of those, or a connection to biotoxins? You have to measure over time like Dr Snyderman does and provide a hypothesis.
>Whether you could be said to have classical ME (whatever that really is) is up for debate as none of the doctor who have seen you dealt with the disease 70 years ago and apply new criteria. This applies to all of us.
>@anonymous best of luck to your health. I have no doubt you are a ME patient or are significantly invested in one.
>What simply amazes me is that everyone, even those who have been to the so-called "great" doctors (like…gag…Cheney$$$), are so focused on (only) the possible pathogens while never discussing the terrain, or at the very least, the effects pathogens might have on the terrain, and how to rebuild it, to strengthen it, to rebalance the dysfunctional immune system.
THAT is where the answers lie IMHO. ME/CFS is a disease of 'deficiency', not excess. It weakens the adrenals, the hypothalamus, the pituitary, etc., and these and the rest of the body must be supported and strengthened in order to recover.
>Jay, but are all those actually caused by a pathogen that over stimulates the body in other areas? Up regulation in one area could suppress the adrenals and so on. The target of treatment probably needs to be further back in the chain.
>@anonymous,
if you're a different person from the first anonymous, yes of course you're correct. It's absolutely up for debate, and some people will be inclined to investigate more to see if their clinical picture matches mine & whether my experience is therefore applicable to them, and others will not because my experience doesn't have any room in their paradigm of medicine.
You could also say it's up for debate whether someone like myself has the right to speak up about my experience with improvement in the absence of a biomarker, but that would depend, again, on your paradigm wouldn't it? I personally believe there is much benefit to be had in "anecdotes" because I have no desire to wait for 10 years (or whatever it may be) for a biomarker to legitimize testimonials. Crowdsourcing data in the case of GcMAF has been very beneficial for helping patients make decisions and helping doctors act quicker to lower toxicity.
I trust in my own knowledge of the disease enough to be able to come up with an impression of whether someone shares my disease. Sure I'm not always right, but this mentality is what enabled me to truly listen and try something that's non-toxic and (compared to something like ampligen) low-cost, carries a high reward/risk ratio, and now be able to hike for 4 days in a row.
Best of health to you as well.
>One thing we — those of us with CFS or ME — do know is if we are getting sicker. We know our bodies, our endurance, our energy levels or lack thereof.
If we compare what we can/cannot do now with what we did a year ago or five years ago or ten years ago and we see a lessening of our stamina and can't do even what we did years ago while sick, then we know we are sicker. It's as simple as that.
If we used to be able to do a simple task like taking a shower and washing our hair fairly often and then this year we've gone through days without having the energy to do this or the stamina to raise our arms to wash our hair, or to go to the mailbox or to the nearby grocery store, then we know what is happening.
Also, to Dr. Deckoff-Jones, I would have given anything to have seen an otter nab a big fish and wrestle it from a heron. I'm going to search on the Internet to see if I can find anything like it. My virtual life! Don't know what I'd do without this computer.
>@jay I think the terrain is definitely considered by the top physicians but they phrase them in traditional (versus pleomorphic) terms like "th1/th2 balance", "redox buffering", "oxidative stress" etc etc.
I think that the eventual treatment for our illness will need to be a combination of an immune modulator that address this so-called terrain imbalance along with a bug killer (whatever bug it is that is directly responsible for the terrain being messed up).
Ampligen is as close as it gets to this "all-in-one" package and patients are rarely cured by it, and those that get better often relapse once off it. It's hard to say whether the lack of success is due to it not dampening the inflammation enough or not killing off enough virii. I think we'll have a better idea of which after Rituximab trials expand to include a large number of CCC patients.
>@kathy D I completely agree with you, which is why I think those hypotheses made earlier (i.e. natural progression of illness) must sound ludicrous to any ME/CFS patients, even if there's room for such a hypothesis in reality.
Any references to "evidence based change" call for lab markers as if us being able to walk 200 steps a day for years and then suddenly being able to walk miles a day is not "evidence" or "concrete". Having to sit down when I shower for years, and now not feeling even the desire to sit. Being able to drive over 4 hours several days in a row after crashing from driving 2 in the past. Not being able to sleep with a totally enveloped sleeping mask for years, and now not needing it?
If a ME/CFS patient is actually being rational and openminded, how can his or her first thought be "you can't prove you have ME/CFS."? I don't think it can be, because I know I was being irrational, defensive, angry, and indignant when I thought the same of other biotoxin avoiders.
There are many ways to measure our disability and our progress, and they all should be considered on the same plane with respect to helping other patients now. Aiding politics of our illness is a totally different ballgame, and in that framework I understand the risk of anecdotes and the like. But we have to pick our battles, and being politically correct sacrifices the betterment of patients now for more patients later. We need folks in both camp.
>I'm a lab rat – or rather, I was. And I'm also a longtime patient of Dr. John Chia. After a 10 month stint on the ARV "Epivir" (following over 6 years of assorted other experimental drug combos), I recently stopped the medication due to a "toxic" reaction (as well as the obvious fact that it was no longer working for me. I got all the drug had to offer.) Although I never received the benefit of any PHYSICAL improvements…for the first 6 months on it, I got my brain back! Normal memory, perfect cognition skills (back to over 95+% pre-illness) – it was an incredible experience to have that period – however fleeting – of mental clarity. I read everything I could get my hands on – and I understood! I researched, I read for pleasure…caught up on where the World was, after a 12 yr hiatus…and I revisited the classics. I even re-read my original copy of Osler's Web! (all 720 pages of it, including end notes and index). I discussed, I argued, I debated just for the sheer joy of doing it again. At times my brain seemed to be working at hyper-speed…and I could retain vast amounts of information. I'd read, see whole blocks of text in my mind's eye – understand and repeat it back – to anyone who'd listen to me. Although I was still housebound and extremely fragile…the veil, or fog, was lifted, and being able to think and make decisions for myself and the family, almost compensated for the lack of physical wellness (vitally important, as my husband was dxd w/M.E. in June, and we have to help each other survive). But when the drug gradually stopped working (and the toxicity and extreme illness returned) I found myself back where I started, over 15 years ago. NOW, I can't remember common phone numbers, or names, have trouble word finding (I search in my mind for simple words to finish a sentence until I cry) – and am becoming more silent each day – except to those closest to me and able to understand what this is like and how the reversal is impacting me). It takes hours to compose a letter – what seems like forever to write a post…let alone try to remember bits of it. And reading – REALLY reading – is pretty much out of the question. Every day drags me farther back to where I began at the start of my last relapse. It's just as it used to be, for me. This was an interesting "experiment" (and I hope the anecdotal data will be helpful, in the long run), my ARV trial – but all this really tells me is that we DON'T have the right drugs – not the just-right drugs – needed, for whatever we have! An ARV (the one I took, used as a firstline defense against Hep and HIV) did SOMETHING for me and to me – something BIG…but it wasn't enough. And there is absolutely no other explanation for my improvements, nor is there any other reason for my horribly rapid decline – besides discontinuaton of the therapeutic effects of the drug. As a "Chia" patient…I strongly support his theories – that Enteroviruses play a significant role in the disease I have – M.E. And I certainly hope that someone sits up and takes notice of his years of dedicated research and hard work, along those lines…while he is still around to guide them! But I'll leave it to others to figure out what to do next about the retroviral connection, because (speaking from a most devastating personal experience)…there MUST be one.
j. nance
>In Vitro Nonbeliever,
Oops, I really wasn't focused on the meaning ofErv – endogenous. But someone,not Abbie Smith made my point, namely that there is a study pointing towars MS being caused by an ERV which seems to be causing. disease.
As a patient here who is getting old I have seen these once rare diseases multiply astronomically. Don't hold me to the math on that term. My son is the PhD math boy, I am the writer using hyperbole but with reason. So for several logical reasons, not faith I lean toward the sense that CFS is infectious and both immune suppressive and causes immune overstimulation.
I have responded well to Zithromax probably because it reduces mycoplasma and inflammation. I also avid toxic mold buildings and live in a dry house in the desert.
The epidemiology of CFS is simply that more women are sick than men, and that NON BLOOD relatives in the same house are sick. Also doctors, nurses and teachers are sick in higher numbers. What would you speculate on that?
Hillary Johnson, I've read a lot, and no one has topped your work. It is overwhelming that you believe and document that something very SICK has gone on. I think so too when I read about the coverup of DeFreitas work and the scandal of the six dead bodies with mycoplasma.
So many of the best got too close and got destroyed.
>Flyleaf for Osler's Web: Inside the Labyrinth of The Chronic Fatigue Syndrome Epidemic
by Hillary Johnson
Crown Publishers, Inc.
"In 1985 in Incline Village on Lake Tahoe, Nevada, two physicians began noticing an unusually devastating illness with an array of symptoms never seen before.
Puzzlement at the first few cases turned into alarm when more and more patients staggered in with the same debilitating symptoms. Called variously the Lake Tahoe Disease, Chronic Epstein-Barr virus syndrome, Yuppie Flu, and finally Chronic Fatigue Syndrome…"
——————-
As one of those "Stagger-ers", I was amazed to see that every other fellow stagger-er had the same profound reaction to moldy places that I did. Some of us began going to the GFD, "Godforsaken desert" and it really helped.
FAR more than people who never tried it could bring themselves to believe.
I never bothered to argue with the Bug of The Month club, for whether this is cause or effect doesn't change the relief it gives. I just said "this helps" and I thought for sure, that people would want to know.
>Well, when I was saying that those of us with CFS know if we're sicker, I meant that we know what we can and cannot to, and are often surprised at our limitations.
I am surprised that the other day I went to the library and grocery shopping, which I rarely do. It's four blocks away. I had to stop and rest on the way home for 15 minutes and came home and had to stop my day right there. That was it.
I am forgetting email addresses and having trouble with word finding more than ever, and I forget to check phone messages, which is aggravating friends.
I also find it's hard to set limits on friends.
I'm also finding I go out of the house less often than I did, and this has changed within the last year and the muscle pain has gotten worse unless I do absolutely nothing, not blog, not anything but read and rest.
So I know absolutely that my disease is progressing.
I'm not sure what "politically correct" or "incorrect" is in this context.
I want there to be a found cause and treatments that work. I want this to be soon so I can have a "normal" life for awhile before it's too late.
Whatever works is o.k. with me, whether it's anti-viral medication or whatever, as long as the side effects don't mess me up. I'm very sensitive to medication and have had lots of bad reactions.