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.
>My immune system was on overdrive before I got CFS. I had severe allergies. I believe it was inherited. The straw that broke the camel's back was an MMR booster "required" (nobody told us our rights) for college at age 18. I immediately fell ill and was diagnosed with Mono a week later. I had some "ok" years after that but never was the same and now at age 36, spend most of my time laying down. I can't express what this disease has done to me mentally and physically. Honestly, I don't want to live 10 more years like this. I often hope I'll get cancer and die young. Luckily I have no kids, just my mom who helps me now and feels tremendous guilt over that day I got that shot.
>Dr. Deckoff-Jones, you make some great points in this article.
In my opinion, what these retrovirus deniers most fear is that people with M.E. will take antiretrovirals and have success in treating their illness. That is exactly what people with AIDS did. While all the "talking heads" argued about what that new illness was and what caused it, sick people simply took the drugs they thought would work and found they did work. Maybe that is why the government and insurance companies and those people who are making a living off keeping us sick (yes, you, CFIDS ASS of America) are trying so hard to stop us from taking ARV's.
Tenofovir is so safe the US government paid for it to be given to healthy women in Africa to see if it would prevent AIDS, and recommended prescribing tenofovir to pregnant women in the hope that their babies would not be born with AIDS. Now they are telling us that this drug is too dangerous to try to stop the illness which has been destroying our lives. That makes no sense at all.
As patients, we do have this power. If we take antiretrovirals and it works, then it starts to look likely that a retrovirus is involved in M.E.
Patricia Carter
>It's high time for a sequel to Osler's Web. Not that Osler's Web itself led to any big systemic changes.
>Thanks Jamie as always.
ARVs have been prohibited in the UK for ME patients for as long as the deceased tissue ban, both of which were introduced one year after XMRV was found in prostate cancer. Funny that!
One small correction. Lo and Alter confirmed what Mikovits and Ruscetti found. Polytropic MRVs. The results have been confirmed through other methods, but yes no replication study of either has been attempted.
>@Cindekeys is it time patients picketed blood banks, schools, the HHS?
These people all know we are infected, which is another explanation for their need to research anyone fatigued without the disease. They don't wish to catch it.
>Ah shoot, and I thought I'd beat that perennial kiss-up Patricia Carter to post first. Oh well…
I disagree of course with what she said:
"As patients, we do have this power. If we take antiretrovirals and it works, then it starts to look likely that a retrovirus is involved in M.E."
That statement is both hypocritical and as we all know by now, will prove, if it hasn't already, to be untrue, as only a handful have had any even remotely moderate improvement by taking antiretrovirals, while others (again, a handful) have gotten worse or stayed the same. (It's hypocritical, because Ms. Carter refuses to take the drugs she praises.)
I also must disagree, but also agree in part, with Ms. Cinderkeys:
Osler's Web was in part a decent retelling of what went on 20+ years ago, but was hugely flawed in it's assumption that an HIV-like virus was (and is) behind ME. Funny (and not so funny) how it used CDC statistics to paint a grim prognosis (which everyone parrots) while at the same time condemning the same org for other findings.
As someone pointed out in their comment on the last blog post, even Elaine Defrietas regretted her own findings.
But Cinderkeys is right — it didn't lead to any systemic changes at all. Except perhaps to make some big $$$ for Ms. Johnson.
>Jamie,
Remember your blog from about a year ago where you found via email that the readers of your blog who improved the most were the ones who stayed away from doctors or medical treatment?
I wish you'd do another post just on that topic.
>@Laura
Patients who improve will not only be on ARVs and there are reports of people who were in the 25% group now being able to exercise in a gym. The right treatments for HGRVs work. What we need is research into what is best and the development if new drugs targeted at these particular retroviruses.
>Fact #1: You don't know if anti-retrovirals work at all in ME/CFS. Until it is properly tested, this is pure speculation on your part.
Fact #2: You are not in the position of properly testing them and assessing wether they work or not.
Fact #3: Even if they would work (which is, again, pure speculation on your part) it would tell you diddly squat about the cause. Stop talking about pathogens and their possible presence in your disease as if you knew them by first name – you don't.
What is this here? Fantasy-medicine?
>Can any one comment on the whole alternative theory that AIDs is not caused by HIV and that the antiretroviral drugs exacerabated the acquired immune dysfuntion…perhaps acquired thru vaccination throwing the immune system out of whack as well as adjuvants, etc. and the idea that the AIDs patients who avoided the AZT type cocktails actually fared better (survived) than those who submitted to drug therapy??
>@Tony
Fact 1 – can be tested though on CCC ME patients.
Fact 2 – a study can still be set up and should be
Fact 3 – ARVs working would point to only a handful of causes. It would say a lot about the disease. Why would you want to know that? Why rely on reality none medicine?
>And why do you have a problem with Lo et al retracting? Didn't you say it is not XMRV? Have you changed your mind again?
And by the way, just because Lo et al can't look properly for mouse contamination, doesn't mean that others can't. I know you can't be bothered to read ERV (YUCK! A scientist with facts!), but she has a very nice list of things that one should look for to check for mousy contamination:
http://scienceblogs.com/erv/2011/01/xmrv_and_occams_razor.php
Ah, never mind. You rather cling on to your fantasy-medicine, because, yes, the only alternative is to wait for evidence based medicine to do its thing. Do you think it will go faster if you fabricate Epileptic Trees on your blog?
>And just to rub it in one more time: This is not evidence based medicine. I do not doubt that you Jamie long for a evidence based solution to our disease, but you are just belching out some pseudo-scientificy speculations. Completely not evidence based. What does the MD stand for again?
>Tony how do you expect to keep up with the discussion with that attitude?
Both studies found PMRVs and Lo and Alter stand by the integrity of their data. There is no evidence of contamination using all contamination assays available.
Yes I'm sure ERV thinks she's immune to, but she won't be and her future is sacrificed too.
Carry on living while you can Tony, Science is dead but the viruses are going nowhere.
>Tony if you want to talk qualifications, what are yours?
>And I am sure that you have evidence for your claim that there is connection between Sjörgens and ME/CFS. But I guess there is good reason to keep it to yourself.
And that you throw in en passant that MS might be somehow connected – real grand. Surely there must be more chronic diseases with unknown causes that are ME/CFS in disguise. I guess autism. And alzheimer is ME/CFS in disguise. And parkinson is ME/CFS in disguise. And diabetes. And compulsive lying. And juggling geese. (Sorry, the evidence for this secret and I can not share it)
Yeah, right.
And if you really think you have MS light (and forget for a moment that historically ME/CFS was misdiagnosed as atypical MS) then I would recommend looking up what Terry Wahls did. She has a good video online where she talked at TEDxIowaCity.
>Wow Tony, what lies behind that fierce anger?
Why is it not directed at the denialists?
Are you against any study of retroviruses? Why?
>Science begins with speculation, generating hypotheses; it then moves on to small scale studies that are unblinded, not placebo controlled, e.g., N = 1 such as Dr. Synderman's study; N = 2, Dr. D-J and her daughter.
All the above is science. Eventually, it ends up with highly sophisticated tightly controlled, large scale studies.
There seems to be a narrow view on display here of what science is.
Dr. D-J has been speculating. She's confessed to speculating, generating hypotheses . . . she is doing the spade work of science.
To accuse her of not doing multi million dollar studies to test her hypotheses is absurd.
The Montoya/Stanford study cost 1.2 million and that was enough for only 15 treatment subjects and 15 placebo subjects, ultimately too small a number to be definitive. That's what 1.2 million buys. And none of the money came from the NIH or CDC; it was all private money.
Dr. Chia generates fascinating hypotheses about the role of enteroviruses in CFS but there is no money for a major follow-up study.
The 30 year subtext of the CFS saga is that there has never been a willingness of the NIH and the CDC to spend serious research money on this awful disease. And in my opinion stems from a unwillingness to see this disease for as serious an illness as it is.
michael a.
>Hello Tony Mach,
I see you are a patient, I assume with CFS or ME. You live in Germany. That's a good place to get severe Lyme disease BTW. So how are you doing healthwise? What have you done to try and get well? Has anything worked for you?
>Laura L. said "It's hypocritical, because Ms. Carter refuses to take the drugs she praises." I find this very interesting since Laura L. is saying I refused to take ARV's. This is absolutely not true. Which treatments I am taking or not taking is personal information which I choose to keep private, but I will state here, publicly and unequivocally, that I have not refused to take ARV's. So, Laura L. you are lying. Where did you obtain this false information? Please name your source if you have one. Otherwise, why should anyone believe anything else you say when you are lying about this fact?
Patricia Carter
>Hello Laura L.
Are you a CFS/ME patient? If so, what are you doing that is working for you.
You wrote:
"As someone pointed out in their comment on the last blog post, even Elaine Defrietas regretted her own findings."
Please go back and read my comments coming from "Osler's Web" re DeFreitas. She did not regret her findings. She regretted she did not or was not able to push further. Her comments actually sound more like Schindler wishing he had saved more Jewish lives from extermination by Hitler. DeFreitas also noted that a retrovirus was found by another researcher in MS patients. "Osler's Web" is well worth every penny you spend to buy it if you wish to understand the history of this ongoing disease outbreak. You might want to watch the documentary about the outbreak in Lyndonville, NY which shows a teenager graduating from high school on a guerney with a feeding tube in his stomach. His parents had to put his suit and shoes on him. CFS is no laughing matter, neither do we wish to disrespect any patient whether we think their hypotheses are on the right track or not.
What is your favorite theory as to what CFS is?
Thanks for any information you may have to share. Also, perhaps share some of your background and education. Mine is background of master's degree in education, many years teaching, then several years doing biotech investment research and patient advocacy for CFS.
Let's all hang together and keep reading and thinking.
>Curious observation:
Abbie Smith has been working on her PhD since 2008. Yes, I know it takes a long time to get one. I wonder if she is close to graduation? But even more curious, she posted a blog comment linking MS to a retrovirus a few years back. No really, she did. (Perhaps she now knows better.) Here is the link. Check it out if you are able to tolerate her disrespect to any who hold any faith that there might be a god who got this universe started. (Just ignore that since we want to focus on science not religion, right?)
http://scienceblogs.com/erv/2009/08/ervs_and_multiple_sclerosis_2.php#more
>I guess with all of the recent developments around lawsuits, retractions of articles and studies, I should feel somewhat at peace, that the heated discussion continues on this blog.
Nothing has changed, i.e., all is calm, all is bright. Life goes on as we know it, with all of its complexities and different opinions.
I guess this is a good thing in some sense. It means we're all alive and thinking about how to find out more about CFS causes and treatments.
We're not over the hill yet, and as Dr. Deckoff-Jones says, we do not want to wait 10 years.
Here's to 2012 as a year of research and forward motion on CFS.
>@Tony
A paper was presented at a NIH conference showing XMRV was being found in Sjogrens syndrome patients.
They are not the same diseases Tony, but likely have the same type of retrovirus underlying them.
They are all slightly different neuro immune diseases that overlap heavily with ME.
@Kathy
This is why I fear they won't let people have affective treatments. They know the truth and that let's more people in on the secret behind ME and all the other diseases. It could take another thousand years for human to have no choice on facing this.
@Wildaisy
You are on ARVs are you not.
>@Laura L. what do you have a crystal ball you're looking into for your information?
>Maybe Laura L. was getting Patricia mixed up with Robyn since they both use Judy's picture next to their names over on Patty's Angry "We Hate Everyone Except Mikovits" Forums.
Personally I don't know why they wouldn't take ARVs, unless they're not really, entirely convinced that Judy M is indeed the Chosen One, the Only One That Cares for Us, the Saint they proclaim her to be on a daily basis.
Why not, Patricia and/or Robyn? What are you waiting for? The "truth" as you so often call it?
>Caroline you cannot boil this down to ont scientist. They keep finding it and most know it is there.
>@Caroline are you the author?
>Hello Caroline,
What are you doing for yourself? I assume you have a CFS diagnosis. What is your history? Did you get tested for XMRV? Have you ever made a commitment to some treatment and then found it was unfounded in science? Enquiring minds, like mine, want to know. Well, we sort of want to know, because any information would be better than name calling, I think. At least I try to think.
>@PC December 27, 2011 12:01 AM
What has (quote from ERV blog)"wayward endogenous retroviral protein production" got to do with the JDJ propositions about infective RVs ? Yes ERVs are implicated in disease causation but that has nothing to do with drugs that knock out retroviruses. There's a prequel ERV blog post that's helpful for those struggling with what any of thise means: http://scienceblogs.com/erv/2009/04/ervs_and_multiple_sclerosis.php
>ERV is a lentivirologist and not a gamma retrovirologist.
I prefer to listen to experts like Frank Ruscetti thank you very much In Vitro, anti-vivo Wessely school psychiatrist.
ERV doesn't appear to know that ARVs don't only affect the replication of retroviruses but will also affect several other mechanisms affected by an MLV-related virus.
>Any thoughts on this story?
"They fear a chill may be descending on their field, potentially making it harder to tackle studies aimed at answering one of the key questions in influenza science, namely how viruses that normally infect birds, pigs or other mammals evolve to become viruses that infect people.
Read more: http://www.ctv.ca/CTVNews/Health/20111227/bird-flu-influenza-scientists-studies-111227/#ixzz1hkEWN4s8
>Health organisations are shutting down anyone who finds retroviruses in any disease. Probably a good time to stop funding any retrovirus research if all they care about are other animals. Should save plenty of money too.
>So are we not to worry than about 1 in those 8 vaccines being contaminated with human DNA?
… A 365-bp sequence with 99% nucleotide identity to a human genomic region (GenBank accession no. AJ289710) annotated as the human endogenous retrovirus type H was also present in the JEV vaccine and most likely represents human DNA
Contamination …
>On page 4 of the vaccine-contamination paper Switzer at al say:
"the presence of particle associated JEV RNA in the two vaccines was confirmed by the detection of 46105 copies/ml JEV in both the untreated and the nuclease-treated SA-14-14-2 vaccine filtrates."
In conclusion part, they say:
"We identified residual hamster DNA containing multiple endogenous gammaretrovirus
sequences, but not retroviral RNA, in the JEV vaccine"
How come?
>I can't wait to see the inevitable posts that say Andrew Wakefield was actually a hero…
>http://www.bbc.co.uk/news/world-us-canada-16279365
"The research was partly funded by the NIH, the parent body of the NSABB, as part of "pandemic preparedness", Mr Fauci confirmed, adding that it was entirely proper that the NIH fund such research.
But he conceded that there was little the NSABB could do to stop the publication of the full papers if the editors of Science and of Nature decided to take that path."
So self-censorship is at play for now. I really don't see how the terrorism card being played here is anything but laughable… especially compared to the real threat that they keep insisting a global pandemic would pose.
>Jamie, it is beyond me how you can decry the unscientific behavior of the medical profession with regards to your disease and do exactly the same BS and follow only your confirmation bias and ignore everything else – congrats, you are no different than Strauss or Wessely.
And Jamie, would you have the kindness of communication loud and clear (the last one will be difficult for you, I know) that the VIPdx test for XMRV are completely worthless and any "science" done using the VIPdx test for XMRV is null and void. You were foremost in pushing this worthless BS test and now it is beyond you to state loud and clear that it was in fact not a bit better than using a pendulum (with a pendulum being arguably about $500 cheaper). This fucking dishonest behavior by you Jamie, as can be seen that there are still patients here who didn't got this memo.
>@ Tony Mach,
I can only conclude that you do not comprehend what you have read; perhaps it is a problem with English. In any case, you have made your point. No need to perseverate. Your psychopathology is showing.
Jamie
>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.
>Annette Whittemore in the facebook q&a with patients on the 7 Oct stated that the assays used at ViPDx are not those of the clinical lab.
The assays from Lombardi et al created by Mikovits and Ruscetti have only ever been shown to be clinically validated.
The first problem with the NIH study is the patients to be entered. Many of those clinicians picking people use fatigue definitions and not ME. You cannot therefore guarantee the results achieved before. Not unless all patients are only enrolled if they are shown to have objective abnormalities on a SPECT or FMRI.
>http://sovint.blogspot.com/2011/12/climate-consensuses-that-will-be.html
Tony Mach, this link was provided by your Blogger profile, listed as yours. Are you really a climate change denier? Do you seriously disagree with 97% of the climate science specialists in the world? And are you seriously going to continue cursing and throwing stones about BS scientific opinion from your glass house?
Also, I wonder if you have any convictions at all. Maybe you're a troll by trade?
>Tony Mach take your pseudo scientific rubbish elsewhere.
Let's test you if you stick around.
Where do gamma retroviruses preferentially propagate?
>Good morning IV and Tony,
Let's return to IV first. Here is your comment:
"What has (quote from ERV blog)"wayward endogenous retroviral protein production" got to do with the JDJ propositions about infective RVs ? Yes ERVs are implicated in disease causation but that has nothing to do with drugs that knock out retroviruses."
It is my understanding, and I am a living, breathing patient of Dr. D-J, that she is basing the use of ARVs on the rational presumption that CFS patients are likely infected with a retrovirus. As you know, she is a clinical MD, not a research PhD. 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.
Okay, Tony, I still want to know if you have CFS and what treatment you are getting. Also, I want to know if there is any chance you got tick bites in Germany – a very dangerous strain of borrelia exists there.
But to your "fucking dishonest behavior" comment. I will reply with great respect to you, because I assume you are very sick with CFS or ? as are we all. Hum, where to start. Dr. D-J is certainly not depending on VIP's failed diagnostic test. That is quite different from the folks who got tested by Dr. Mikovits' lab in the first place. It is also quite different from the patients who had cultures done and also had antibodies to XMRV.
Secondly, I have to add that I have been examined and treated by some of the best CFS docs in the world including Paul Cheney, Teitelbaum and others. Dr. D-J is brilliant and cautious in her testing, diagnosis and treatment. For instance, she is NOT treating me with ARVs as I do not test positive for XMRV. Neither am I currently as sick as many CFS patients. Also, I clearly had Lyme disease with tick bites and classic rash which was untreated. I do respond to antibiotics, as have my husband and one son who also clearly had Lyme.
But she is addressing my neurally mediated hypotension and poor oxygen levels and mitochondrial dysfunction. She is not telling me to excercise or take SSRIs – been there, done that – good way to die.
Hey, if you are well enough, get yourself to Hawaii, go snorkeling, climb the volcano and get help from Dr. D-J. You can't really go wrong, unless a turtle bites you while you are snorkling. Or maybe if you exercise too much.
>Tony! How can you defend "consensus science" that discounts XMRV, but then rail against it in the case of AGW? Logical disconnect much? Hypocritical to say the least:
http://sovint.blogspot.com/2011/11/problems-with-consensus-science-in.html
Apparently you think it's your mission on the web to spread debunked conspiracy theories and harass Jamie on her blog. So, so sad. in a way, I hope someone is paying you, because if this is really your mind… It's just too sad.
>Notice who one of Tony's impeccable scientific sources is in that article: Michael Chrichton! LOL!
Seriously Tony, thanks for the laughs.
>I don't know how anyone can think consensus is anything to do with science. In fact Chrichton said this
I regard consensus science as an extremely pernicious development that ought to be stopped cold in its tracks. Historically, the claim of consensus has been the first refuge of scoundrels; it is a way to avoid debate by claiming that the matter is already settled. Whenever you hear the consensus of scientists agrees on something or other, reach for your wallet, because you’re being had.
Let’s be clear: the work of science has nothing whatever to do with consensus. Consensus is the business of politics. Science, on the contrary, requires only one investigator who happens to be right, which means that he or she has results that are verifiable by reference to the real world. In science consensus is irrelevant. What is relevant is reproducible results. The greatest scientists in history are great precisely because they broke with the consensus.
There is no such thing as consensus science. If it’s consensus, it isn’t science. If it’s science, it isn’t consensus. Period.
—Michael Crichton, Aliens cause Global Warming [January 17, 2003 speech at the California Institute of Technology]
>Awww and here's your other blog where you contradict yourself. Your most recent post calls XMRV dead. But on Dec. 15th you wrote exactly what most people are saying on the issue:
"I really hope this will be the decisive "Yes or No" answer to the "XMRV/HGRV or Contamination" question. I trust Ian Lipkin to both be open and inquisitive while at the same time making sure the results stand up to scrutiny."
>Sorry Tony, had trouble posting the link (I think it's because I'm on an IPad). http://parakoch.blogspot.com/
>Hi Jamie,
I'm very glad to read that you have decided to purchase an RV and spend some time out in nature. Regardless of what benefits "Toxic Expensive Drugs" may give to ME/CFS sufferers, an increasing number of us have reported equal or better improvements just from getting to really pristine places (without having to risk the possibility of staying in a moldy hotel room).
For instance, here are a couple of blogs (and brief quotes) of people with classic, long term, severe ME/CFS who have recently found that pursuing what Erik Johnson calls "Extreme Mold Avoidance" (and doing nothing else) has brought them vastly improved wellness.
http://cfsmethylation.blogspot.com/
(Janis)
>Imagine feeling great when it’s cold outside. To warm up you get in the baths or the sauna. You sweat, you drink lots of water, you detox. You come out feeling warm and less toxic, and the effect lasts for several hours. If you’re lucky, the desert sun warms the chaise lounges by pool enough to lie outside in your bathing suit until 3 or 4 pm. You make dinner with a floodlight if the weather is clear. If rainy, you find a restaurant. After dinner, you walk down to the pools and sauna once again to combine detoxification with relaxation.
>After you disconnect the air [un]freshener in the public restroom, the smells no longer bother you. You climb into your tent and slip under down quilts and flannel sheets, fall asleep right away, and in the morning, wake feeling rested. It’s 6 am. You throw on a sweater or jacket and watch the rosy fingers of dawn lift the sun into the sky. In a short while, it’s warm enough to remove your jacket and replace your wool socks with flipflops. You heat water for breakfast tea on your Coleman stove, make eggs or hot cereal or gluten-free French toast, and still feel good enough after breakfast and clean-up to do something. You know you have CFS but you don’t feel sick. On the contrary, you feel strong and vigorous.
http://ampligen4me.wordpress.com/
("CityChanger")
>Here’s a short list of symptoms that have without a doubt improved since I started avoidance: muscle strength, acid indigestion, brain stamina, vision, light sensitivity, stress response, gut inflammation, sleep (don’t need benzos in moderately good location, don’t need antihistamines in good location), can do yoga right before bedtime without disturbing sleep, OI (can stand for much longer in grocery stores, take hot shower without needing to sit down), POTS (resting HR was 90s, now 70s), PEM.
Unfortunately, not all locations that seem like they should be pristine actually are. In the hope of helping people with ME/CFS (and related conditions) to find good locations for us more efficiently, Paul Beith and I have put together the following board, "The Locations Effect."
http://locationseffect.proboards.com/index.cgi?
I hope that you and Ali will find it helpful in choosing places to visit, and then will share your experiences in different places on it.
Good luck to both of you in your travels!
Best,
Lisa Petrison, Ph.D.
lisapetrison at yahoo