“Appeal to ignorance – the claim that whatever has not been proved false must be true, and vice versa (e.g., there is no compelling evidence that UFOs are not visiting the Earth; therefore UFOs exist – and there is intelligent life elsewhere in the Universe. Or: there may be seventy kazillion other worlds, but not one is known to have the moral advancement of the Earth, so we’re still central to the Universe.) This impatience with ambiguity can be criticized in the phrase: absence of evidence is not evidence of absence.” ~ Carl Sagan. The Demon-Haunted World: Chapter 12 – The Fine Art of Baloney Detection.
I am feeling subdued. Jason contacted me back channel after our conversation in the comments of the last blog. We said what we each perceived to be a reach across the divide, but it quickly became clear that the distance was too great. I am deeply saddened by this state of affairs. ‘Scientific community’ is an oxymoron. Everybody in their own labs doing their little absence of evidence experiments, knowing nothing of the disease in question. Argumentum ad ignorantium. A false dichotomy. I own that I am one half of the dichotomy, though unlike the other side, I don’t fail to consider alternatives. The obvious third alternative here is there has been insufficient investigation to reach a conclusion. Unfortunately, it’s the folks with the above ‘vice versa’ view that we need to do the work in order to have enough information to know what is true and what is false. Deductive reasoning leads to blinders and inductive reasoning can go to religion; I acknowledge that. All valid alternatives must be considered. Hume’s Problem of Induction puts the current conundrum in a larger philosophical context.
I didn’t even see a possibility for mediation. No common ground at all. It felt like a microcosm of the entire situation. The emperor has no clothes, but he is sighing with relief, because nobody is going to know. They aren’t going to have to deal with us. XMRV is going away.
I feel like a lightening rod, a lot of anger going to ground through me. Making people squirm isn’t my first choice, but I guess it’s better than being ignored. I’d rather be a lover than a fighter, but it seems it isn’t to be. I am propelled by the ‘atta girl’s I get from people who have had no voice for a very long time. It seems more important than who is pissed off or hurt.
More mail from Dr. Peterson’s patients. The jist is, he is really sad, but can’t say anything because of Annette Whittemore. And Annette Whittemore has never been willing to clear it up publicly either. These people are holding themselves out as our best hope. A little transparency is in order. I repeat. I have never met Dr. Peterson. Everything I know about him and what happened at the WPI came from the people there. Not one person, a bunch of people, but all hearsay and I plan never to repeat any of it. I believe patients first and foremost, so I apologize to Dr. Peterson. I don’t understand the apparent fixation with HHV-6 though. It seems so much less plausible than a retroviral etiology. I do admire his persistence above all else. Anyone dealing with CFS for 27 years without going insane deserves huge gratitude and congratulation for unusual survival skills and fortitude.
Emotions run high because there is a huge reservoir of feelings and thoughts that has had no outlet for years and years. So many have suffered silently, trying to be good so they could be believed, much less helped. It’s one thing to ask for help and another to become a supplicant and plead and beg. Unfortunately pleading and begging is what we’ve been reduced to. Seems like birthing a new paradigm is just like any other birth, difficult and messy, but oh, the results matter so much. We have the old paradigm fighting tooth and nail to stop an unstoppable process. Progress will be made in strange, uncomfortable ways, but move forward we will.
>I think we all need a holiday ….and live a little.
>Carl Sagan's point was not that people should spend infinite amounts of money and effort trying to prove that there are other worlds out there just because there COULD be, though.
DId you read the whole book, with regard to how scientists think? Especially the part about how being open to the idea of the hypothesis being wrong is a key component of getting to the truth?
There's no evidence of it in this blog, if so.
On the other hand, there's plenty of evidence that the claims that Judy Mikovits AND the WPI were making about being able to find XMRV in blood samples were fabricated.
At some point, enough is enough.
It's time to move on.
>Anon 2:25 PM,
I do understand the point of the book, though I haven't read more than excerpts, this and a few others I found on the internet. It makes Jason's point and I don't disagree. But the 'vice versa' is also true. I used the quote to try to indicate that I am trying to consider all points of view, not throw away 'science'. I don't want to be the polar opposite of Jason.
Enough is enough? Another 20 years, like last time?
Jamie
>Typical. You take a little snippet of information and without bothering to learn anything more or think it through, twist it around to suit your own agenda and act like you're an expert about it.
The unfortunate thing is that you actually do think you understand, because you can't imagine that there is information in the world that you don't know (even if you don't make any effort to look into it). And then you use your authority to lead along other people who are not well enough to think things through for themselves.
One main point of the book was to consider all hypotheses. You most certainly don't do that. The only hypothesis you're interested in is the retrovirus one.
Maybe it's not a retrovirus that's causing this disease. Maybe it's something else.
And if that's the case, and all attention keeps going to studying hypothetical retroviruses, it's going to be a whole lot longer than 20 years before we get anywhere.
>Anon 2:47 PM,
Do you have a better hypothesis? If so, please share it. We would all love to hear it. I want to get well. I want my daughter to get well. I have been pursuing what seems to me to be the most likely hypothesis. Do you have something to say other than 'you're wrong', which I have said again and again was possible?
Jamie
>Anonymous wrote:
"One main point of the book was to consider all hypotheses. You most certainly don't do that. The only hypothesis you're interested in is the retrovirus one."
Do you know anything about Dr. Deckoff-Jones? She has looked at chronic Lyme disease, toxic mold, using HBOT, using pulsed antibiotics, using antivirals, using antiretrovirals, testing for and treating methylation problems. Note that all of these are treatments since she is a clinical practice doctor trying to help patients when we really don't know the underlying cause or causes of cfs or chronic Lyme.
She is not one who jumped on a retroviral cause with no consideration of other possibilities. Indeed, she continues to use other treatments for her patients. She has not jumped on prescribing ARVs to her patients.
But there comes a point when anyone who studies this stuff and has half a brain would say, "It is quite possible and there is some evidence that some strain of a murine retrovirus is infecting humans. Since the EVIDENCE makes this likely we cannot sweep this under the lab table and just move on even if there were mistakes made by Mikovits, Lo and other scientists.
I can only add that I wish you, anonymous, would write your real name, since you think you are more objective and intelligent than Dr. Deckoff-Jones or Dr. Judy Mikovits. I would especially like you to have the balls to use your real name when you are attacking others' intelligence and objectivity.
PS Let's hope you do not have cancer caused by a sick mouse somewhere near your balls. And, in case you are confused, this was a joke not a scientific statement, but it is based on the ongoing possibility that some prostate cancer could be caused by a murine retrovirus.
>That's a rhetorical move, not a sincere question.
If you really are interested in looking at other hypotheses, perhaps a good first step would be to open up a discussion about them on this blog.
Up until this point, the blog has had the goal of talking only about how (phantom) retroviruses MUST be causing CFS, regardless of any evidence that anybody presents to the contrary and the increasing lack of evidence for the proposition.
It's your right to blog about anything you want, but it does serve to limit the discussion and keep the minds of those who read it closed to alternative explanations.
>A good post, Jamie, with lots to think about.
On Jason and the research community. I share your frustration, yet differ on the pragmatics of it. I remember before I got sick, my level of empathy in general was rather limited. I was intellectually curious, and generally, in broad terms, wanted to make the world a better place. But did I think I owed any one particular group of people anything? No not so much. Lots of problems in the world. People starving, folks unenployed, on and on.
As patients, we are keenly aware that certain players in government, historically, have done us a tremendous amount of harm. Those folks need to be held accountable. Most researchers don't know that. Most are not aware of the magnitude of the problem. We can only get there, by making noise, yes, for sure, but remembering that no one researcher, Jason or otherwise, owes us anything. Those kinds of arguments don't work anyway even if we think they do owe us. Researchers will start working for us if a) they are intellectually curious about a problem; b) they can see sources of funding and c) they are convinced of the magnitude of the issues. Let's keep presenting them with the magnitude of the issue, but without all the insults and questioning of motives.
Frankly, if I were a healthy retrovirologist, my level of interest in researching CFS would diminish with each nasty email I received from a CFS patient.
Finally, to the person (people) who keep accusing Jamie of leading innocent folks astray. Really? You gotta come up with something better than that. Everyone has motives. Sick people, healthy people, grandmas, scientists. No one's epistemology is fool proof, and Jamie has been the first to admit this. From day one, this has been a discussion, and if you are too dense to see that, I suggest you have your own critical thinking issues to tend to.
On the WPI and Peterson. Hearing the WPI's version of the story would be a good thing. Track record wise, it's not looking good though. Peterson, Jamie and Mikovits, all terminated or feeling they needed to leave, for unclear reasons. Doesn't look good from a management point of view. Ever look at the board of directors tab on the WPI page? There's maybe 3 people on there. How in the world are you gonna have CEO accountability with no board of directors? Likewise on the science advisory board. Every scientist outside of the WPI, with the exception of Ruscetti and one or two others at best, was turned into an enemy. You can't possibly operate an institute that way. Bring people in. Coopt them to your cause. Nurture a diversity of opinions, including people who are looking for a non-retroviral etiology. Just because they don't see the world as you do doesn't mean they're out to get you. Don't make it a matter of either/or. Turn it into a both/and and may the best scientist win.
D.
>Completely agree with the both/and remark above!
Huge fan of Jamie's – what courage you have.
Struggling to phrase next – forgive ME fog – but I was wondering whether drawing up a list of possibly helpful drugs that I could try one by one is a very dumb idea from a medical point of view? If so why? Also would there be any limitations legally as to why my PCP wouldn't be able to prescribe off-label uses for me if I asked for them?
And anectdotally I have found Valcyte (antiviral) a huge help both with pain levels, fog, and fatigue, and am dose sensitive – less=worse, higher=better (highest I have been on and best I have been is 2x450mg 3x daily – Dr not comfortable with me on that high dose long term so managing on 1x450mg 3xdaily for last year…can load dishwasher without breaking into sweat, though still can't vacuum, can sit for longer, and walk a little most days, but still not more than about 2 blocks without feeling ill
Helen
>During the midst of a lively debate here on the comments section involving many who were trying to separate the wheat from the chafe…in pops a real retro-virologist. But only, it seems, to accuse the host of making personal attacks on scientists. And then in the second paragraph of his first post, he launches into the very same personal attacks he was protesting in the opening paragraph. And ultimately he refuses to offer any real help to this patient community even though he sits in an ideal position to provide at least some of the real science that has been deserving since at least the knowledge of SV40…about half a century.
So here is my own effort at a 'song of the day', even though it appears to me said retro-virologist does not yet possess the emotional intelligence to realize he is the one who should be singing this tune:
http://www.youtube.com/watch?v=T-EECUriK90
Quite Rightly So
For you (whose eyes were opened wide whilst mine refused to see)
I'm sore in need of saving grace. Be kind and humour me
I'm lost amidst a sea of wheat
where people speak but seldom meet
And grief and laughter, strange but true
Although they die, they seldom cry
An ode by any other name I know might read more sweet
Perhaps the sun will never shine upon my field of wheat
But still in closing, let me say
for those too sick, too sick to see
though nothing shows, yes, someone knows
I wish that one was me
Jerry and Carolina D
El Paso, Tx
>Karina,
I think you are right. This one is for you.
http://www.youtube.com/watch?v=I6zIEfSxqkg
Dr. DJ
>Oops. I may have post four times. Switch to wordpress, it's much better.
Jason
>Nothing in the spam filter.
>There are many many brilliant retrovirologists who the patients have written letters to thanking them for their help. There are many many retrovirologists who have not yet published their positive findings. So anyone claiming a ME community/ scientist spilt is very much mistaken and I think they should take their propaganda elsewhere. No one is falling for it.
As for moving on. You don't until the hypothesis is tested. That has not happened yet. Using VP62 invalidates papers. It doesn't exist and is not the viruses discovered by Lombardi et al. Those papers have not shown their assays are capable of detecting anything.
A hypothesis must be testable. Would someone like to say what should be tested in relation to HHV6? How can a virus that supresses the immune system be responsible for ME in which patients have an unregulated immune system?
>"On the other hand, there's plenty of evidence that the claims that Judy Mikovits AND the WPI were making about being able to find XMRV in blood samples were fabricated.
At some point, enough is enough."
Indeed enough is enough. The more I see of this evidence and various parties making claims based on badly done journalism, the more I shudder at the tabloid behaviour being displayed by supposed intellectuals.
The level of speculation and accusation that has been indulged in without the full spectrum of information required to make such determinations is astounding.
Oh how they cry of the patients attitudes to often overtly-political Scientists!
Where are the cries at the press from such an enlightened community when they openly direct sexism at Dr Mikovits?
When will the appropriate and expected agnosticism be applied from such a learned community when it comes to Dr Mikovits?
Who in sincere opposition will simply state: Accusations of impropriety or negligence can only be made by those with the necessary proximity to discern them?
The indignation has pre-empted the substance. Without substance all this will fall away like wet-cake, but the legacy of damage to a field of research that needs to be fully explored will remain.
Shame, interminable shame upon those who tout their spin with all absurd and muscular certainty.
If there truly was nothing to Dr Mikovits's work, what fear then remains, of its completion?
-SJ
>This somehow didn't get posted (to Jamie's previous post). I think I directed it to Alex Young.
===
You might be thinking of this:
The electromyographic picture would fit in well with changes noted when an
agent was transferred to Rhesus monkeys from patients involved in the
Adelaide epidemic (1949-51). — Parish (via bullybeef)
Parish JG (July 1970). "Epidemic malaise". Br Med J 3 (5713): 47–8. PMC
1700986.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1700986/?tool=pmcentrez&forumid=331851
Also this:
… The organic basis is clear – from the finding that the putative agent
can be transferred to monkeys, the detection of an increased urinary output
of creatine, the persistent findings of abnormal lymphocytes in the
peripheral blood of some patients, the presence of lymphocytes and
increased protein concentration in the cerebrospinal fluid of occasional
patients, and the neurological findings” (BMJ 3^ rd June 1978). — Summary
of RSM symposium, quoted in
http://www.meactionuk.org.uk/The-Media-and-ME.htm
===
(BTW, as annoying as the comment system is on Blogger, I'd suggest sticking with it. WordPress has significant accessibility issues and the transition would be problematic. Sufferers have significant neurological, cognitive, and accessibility issues that would need to be taken into account in addition to the usual issues of porting a blog.)
>(I meant neurological, cognitive, and ergonomic above)
>oops mouse bounce
mary
>Would the Anonymouses use their names please? We have asked many times. Most of them are exhibiting safe, mainstream opinions.
I'm starting to pay more attention to comments by people I have known since before Lombardi et al. 2009, simply because I know who they are.
>Samuel, you are a fascinating and clever writer. Love your blog.
>I have only been on this blog since the Oct. 3 news about Dr. Mikovits being fired from WPI.
I have found it informative, the exchanges interesting,except when there is animosity and anonymity at the same time, unneeded and not helpful to those of us who are sick.
I do not find that the person whose blog this is has done anything but provide information, ideas, suggestions, etc. I do NOT feel pushed by one idea at all. I have seen openness, and a great deal of tolerance — more than I would have — to the criticisms and repetitive barbs and points.
I'm not sure I understand all of this venom.
I worry that it's the same thing that was leveled at Dr. Mikovits, the tone, and the underlying sexism.
I was horrified at some researchers' animosity to her, and then its reflection in the media, including in top scientific journals. It smacked of sexism and arrogance and entitlement.
Have we lost all manner of human relations, respect, just kindness in interchanges, whether we agree or disagree?
There is often news of medical breakthroughs in drugs to treat cancer or ways of looking at treatments. Some do not pan out. However, the scientist(s)' name(s) are not smeared all over the NY Times and Google news, in Science, or elsewhere, even when they are proven wrong.
I don't know what happened with Dr. Mikovits' studies or slides. I don't think any of us know. I'd like to wait and see what is uncovered in the future before making a decision on this. I have patience on this.
And I agree with the above blogger who is let down by the narrowness of researchers, who are in their own labs doing their own thing. There should be collaboration and cooperation and sharing of information nationally, with researchers working together.
I still have hope that Ian Lipkin will continue to study viral connections to CFIDS. He said he will. He is getting funds through the CFI to do so.
Meanwhile, other studies are going on regarding other issues, possible biomarkers. Those are reported at the CAA website. (I am not giving an opinion on their actions, but just saying research is reported there.)
I am glad to see research going on. I think Dr. Mikovits and the uproar that followed the XMRV findings, no matter what, brought CFIDS out of the closet and into the public domain, in a way no other study ever has. It's a genie that I don't think can be put back in the bottle.
I'll be waiting and watching and reading whatever I can.
And as CFIDS and I are going to have our 26th anniversary in two months, and I try daily to just put one foot in front of the other, I am going to try to develop an inner Zen to cope.
And I look forward to the upcoming research studies and news. And I will keep reading this interesting blog.
It's about just "keep on keeping on."
>And I add, having CFIDS for nearly 26 years and not losing it is an accomplishment. I thank my friends and sibling, good blogs like this one, and my one addictive hobby — reading global mysteries and reading related blogs. A great destresser is reading fiction. I suggest it.
>Repeating over and over that the retroviral hypothesis is the most plausible doesn't make it so.
If I accept for arguments sake that XMRV is a human pathogen causing CFS and compare it both HIV and HTLV, I fail to see any similarities beyond "virus that causes illness".
I am quite certain that it one or more viruses that cause ME/CFS (or maybe even bacteria), but I quite certain that it isn't XMRV.
The whole "ITS XMRV!" thing was based on Mikovits/WPI finding XMRV in the blood of patients. Turns out, they can't distinguish patients from controls (and don't give me the WPI vs. VIPdx smokescreen bullshit). NOBODY can distinguish CFS-patients from controls by looking for XMRV. XMRV IS A DEAD END. And I'm quite certain it is NOT in cancer as well. I hope Ila Singh comes around and say that – last time I checked she was in denial as you are.
—–
You want better alternatives? My personal favorite is persistent Enterovirus infection as propagated by Chia/Chapman/Mowbray/etc. With Post-Polio Syndrome you even have an illness that has some similarities to gradual onset CFS.
>retroviral causation is at present the only scientific hypotheis in existence.There is no other scientific hypothesis in existence.Scientific hypotheses must have the ability to explain ALL the biomedical abnormalities recorded in people with ME and be testable experimentally or predictively
>all the 00 studies are now invalidated because of the use of the VP-62 clone in spiked samples to determine the theoretical limit of detection of their PCR assays using high stringency cycling conditions. Firstly VP-62 is not related to the gammaretroviral sequences found in Lombardi et al and Lo et al and a PCR with reagent concentrations and cycling conditions optimised to detect a free floating synthetic clone is not capable of detecting a methylated provirus integrated into C-G rich regions of host DNA.This would be true even if the sequences were related to VP-62 which they are not
>The lombardi et al protocols were not used in the BWG PCR and the RT-PCR assay would have been rendered meaningless by the lack of trizol
Lo,s samples were not validated as being negative by serology or PCR
the blood collection procedures were different for the "WPI" and serology test and the lab donors
no PMBC from healthy donors was sent for negative validation
MLV viruses are only found in the blood intermiitently after the initial infection period they are impossible to detect in the blood either by PCR or serology without some mechanism which increases B cell transfer from the peripheral tissues into the blood compartment
It is time to focus on assays which detect the gammaretroviruses which are replicating in the human population in lymphoid tissues where other members of the genus are known to replicate. Gut biopsies are a good place to start as some 60% of mature preactivated B cells reside there
>persistent enterovirus infection does not explain the symptom complex of ME.The presence of a retrovirus would explain the persistence of an enterovirus infection
>Jamie,
as much as I have enjoyed this blog, I have to say that I find it hard to believe you have a background in medicine, because your grasp of science and logic seems pretty weak, and your antipathy to science quite strong. You write in a kind of constantly circling argument that takes in new information only when it fits the argument or when it really hits a nerve with you.
To the person above helping to dump on the Whittemores (flavor of the week), lumping the departures of Peterson, Jamie, and Mikovits into one category would seem to me to be drastically rewriting history. I believe, from what I have read here over the months, that Peterson left because he was the first to start doubting the XMRV hypothesis, and his breach with Mikovits was at least as profound as his breach with the Whittemores. Perhaps it would be more accurate to see Mikovits as perpetually alienating people she works with, first Peterson and later the Whittemores, maybe because of her rigidity or some other quality, or simply because she got it so profoundly wrong and won't admit it or even explore the possibility!
Our only hope as patients is for scientists with creative minds, but who adhere "religiously" to the scientific method and believe the evidence in front of them (including new evidence that throws doubt on prior findings), to take an interest in our disease. Such research could take any number of directions. If it's true that Lipkin is curious about it, that is fabulous news. I just hope he doesn't become the new Satan if he changes his mind or doesn't come up with the "right" answers.
One thing I find really discouraging is this talk of some wide-spread retrovirus that has infected almost all of us and is causing all the various diseases of modern society. OMG!!!! as my daughter's peers would say. This just sounds like some creepy medieval world-view in which a miasma sent by God is bringing the world to an end. Next thing you know, you're going to be burning witches!
Maybe, maybe ME is somehow connected to autism, for example, but there would have to be some pretty solid epidemiology (not your self-selected survey!!!) to persuade me of the fact. I know a bunch of folks with ME and a bunch of people with autism in the family, without any overlap in the groups. In the meantime, I want my disease to be studied as a discrete, clearly defined entity, not just a scrap in a ragbag of possibly related ailments. Without some clarity, it's impossible to design a study, and research will grind to a total halt.
I have enjoyed Jason's voice here, although he may be young and a bit insensitive and self-involved (which is o.k. with me–he's just a young scientist with a passing interest in our disease). I'm not surprised that Jason and Jamie can't really communicate, since they speak completely different languages.
So, everyone, what's next? I still want to hear from Lipkin, to put the final nail in the coffin. But where can we pin our hopes next? Hope is such a powerful medicine, and I will be searching for reasons to hope.
>And if ANY of you were waiting for ANY Transparency.. NOW is the Time to Laugh once yet again…
The World famous CFSAC has announced that their next meeting in early November will NOT be "streamed LIVE over the internet" so NO ONE can waitch or listen to it LIVE as we have from around the world for the last 4+ meetings…
Bravo !! Let's cover up all of their mumblings,
nose-picking and back-stabbing that our tax dollars are paying for..
If you want them to change their mind
Please write to
"Dr. Nancy Lee" at nancy.lee@hhs.gov or
" Dr. Nancy Lee" at cfsac@hhs.gov and
see if you get ANY response ?
So much for Section 508 Accomodation of the Rehabilitaion Act and their ByLaws –
SURE was FUN to see Exactly how disconnected the scientific community (burp) is …after the
NIH SoK that we were able to watch LIVE…
Guess it's been downhill from there…
I guess they have cut out the tongues of the scientists and they forgot about Skype or Sharing Knowledge or God Forbid,
"Putting the Patient FIRST" because there are MILLIONS Hurting out there and they ARE Responsible for actually DOING the Research that will Find the fricken Treatment if not cures.
Let's NOT Pay them for Every paper that they publish that uis NOT a real Replication study.
Just like we don't pay the CA Congress if they don't pass a Balanced Budget…at least here in California that's how we do it.
But maybe that's TOO Practical ?
I for one am sick of their Games and Egos.
Get the Politics out of here.
Did NO ONE Take a Hippocratic Oath ?
Sheez–
Yes, we are NOT in Kansas anymore Todo,
but I still have my XMRV antibodies and
from my earlier years of working in the
hospital and understanding how a retrovirus
can lay waste to an immunse system and
let it remain OPEN for every other
virus/bacteria that says Hello~
I am STILL believing that a RV is at the
bottom of all of this just like Dr Snyderman
is also starting to Believe..
esp since ARV's are also helping him.
http://trialx.com/curetalk/2011/10/micheal-snyderman-xmrv-positive-judy-makovits-anti-retrovirals-cfs/
Thanks Jamie for ALL you have done and are continuing to do on behalf of the patients..
We really DO Appreciate you.
with much gratitude,
Angel Mac
>I'm for waiting and seeing. I have no opinion about WPI and Mikovits and what happened, nor will I.
I'm going to, as the saying goes, "push it forward," and wait it out. I think Lipkin is honest in his goals.
I also want my disease studied as a single disease but fast. (other studies are studying genetic expression changes, brain matter changes, spinal fluid changes, etc. )
I just read the blog of a young woman in her 20's who is not just homeboubd, but one-room bound all day, with her spouse preparing and bringing her meals. She says she's getting worse, and doesn't know how long her life will be. This makes me so angry! We have to push these researchers and medical people and government officials to do something. And now@
This is as serious as HIV was.
Also, on the CFSAC — what is it? Why don't we deluge them with calls for streaming or podcasting their conference. Can we start a phone and email campaign? Whom do we contact? Can we do it and send it out on emails and list-serves? I have friends and relatives who'd do it from different states.
I'll help and get the word out, via friends and relatives.
>They confirmed in the Blood Working Group videocast that not all labs screened all controls.
>I wasn't going to post anymore because of a nasty email from Jamie,
but one more time shall we?
"If you really are interested in looking at other hypotheses, perhaps
a good first step would be to open up a discussion about them on this
blog."
In my first email to her I offered to do exactly this. I offered to
email a write-up to Jamie so that she can post it as a "guest post"
from me. I pledged not to attack her or Mikovits. Moreover, I offered
another safeguard. I said in the end, she could never post what I
emailed and no one would ever know my views.
I was goigng to propose alternative viral hypothesizes to a viral
cause of CFS/ME after an accurate survey of the literature. Which is
much more than can be posted in a comments section. I do realize that
other posters wanted to know my views as well. Not only am I
retrovirologist but I also worked on paramyxoviruses and how that
evade the immune system during my graduate training. This includes
measles and mumps virus. I have a unique view of viruses and their
interplay with innate and adaptive immunity.
But it is apparent that Jamie does not want to entertain other
possibilties. At first she thought it was a great idea. In two emails.
The third email was rather nasty where she called me a "snot".
Unfortunately, she has pushed me away from this blog for good. Looking
back, I should have engaged Jamie more carefully (though not sure if
this would have mattered) if I wanted to reach her audience.
Goodbye everyone! This will be my last post. I do hope everyone
recovers from this horrible disease and that healing can occur and for
research to continue.
All the best,
Jason
>Jason, it comes down to what you can turn into a hypothesis. There is no other hypothesis for ME other than human gammaretroviruses that Ruscetti and Mikovits discovered.
If you had anything else you would have explained your hypothesis.
>Jason will you give Jamie permission to post your emails and all comments you have made in a special blog.
>Goodbye Jason. Your macho arrogance isn't helpful. You have consistanly mischaracterized Dr Jamie's words, actions and motivation.
Why?
I think you came here to sow doubt. That has been the status quo response to every other development in the pursuit of the cause of this disease.
As long ago as the early 1990s brain scans showed brain damage similar to AIDS. In 1997, then Assistant Sec. of Health Dr. Philip Lee said he thought the cause was a virus or retrovirus. Yet everytime a researcher finds something to support this theory, they are denigrated, blackballed and disappeared in one way or another.
I suggest you view the youtube video of Dr. Friedman, telling how he and other researchers into "cfs" are bullied, defunded, lose their jobs and are forbidden to use resources, such as email, at their respective institutions, if it pertains to "cfs" research. Want to dismiss him as paranoid, do you?
If you've been paying attention, it is clear that the name XMRV was a misnomer, provided by Dr Silverman. It is not at all clear that Dr Mikovits and Alter/Lo did not find something in the MLV family of retrovirues. So why the big push to abandon the research NOW? It is you, Jason, who refuse to look at all the research available. Dr Jamie has posted many studies in the sidebar that support her theories. It looks like you've made up your mind, or let others make it up for you, without really considering the facts.
There is no indiction AT ALL that any fraud was involved in the Mikovits research or presentations. That Dr Ruscetti included the wrong slide at Ottawa is already known, but that news doesn't support the media attack on Mikovits so it isn't being repeated ad nauseum.
From your first post here you've been hostile, aggressive and disrespectful. When you had that reflected back at you, by a mere woman, you cried foul. It is obvious to me that you are not as openminded as you apparantly believe you are. As usual, you only want to disprove any theory of causation or association. You and your establishment collegues can never be bothered to do the positive research needed to find answers.
Thank you, Dr Jamie!
-Lilly
(not a fan or groupie, and completely able to think for myself)
>Jason, I really would like to hear your hypothesis.
Perhaps you would think of posting it elsewhere and then letting us know about it?
I suppose it doesn't belong on your beer blog, but there must be somewhere that could host it.
Thanks for your contributions to this disease.
>Do I believe in science and it's self-correcting nature? Yes, just not necessarily in my life time. Far too many ego's prejudices, etc.
Best of luck to ALL of us.
>"as much as I have enjoyed this blog, I have to say that I find it hard to believe you have a background in medicine"
Agatha,
I'm glad you were entertained. I'm also pleased that I don't remind you of your 'real' doctors.
As for my real doctor credentials. Harvard/Einstein. 16 years of Emergency Medicine, during which time I directed a rural ER and was an attending physician in a Level 1 ED at a Stanford affiliated county hospital for 10 years. I flew for LifeFlight. I became Assistant Director of the ED and Director of Urgent Care.
After I got sick the first time, I had a private practice for most of a decade where I was involved in rehabilitation of the late stages of brain injury. I owned and operated the largest multiplace hyperbaric chamber in the northeast. I was in discussion with the navy to receive patients with the bends by helicopter when my doctors gave me 'treatment' that rendered me unable to work.
I treated over 60,000 patients as an ER doctor and hundreds in private practice. I was never sued or disciplined.
But my most important 'credential' is that I have been to the brink with the disease. My daughter has 2nd generation ME/CFS and my entire family is affected (with the exception of my adopted daughter and her children). In the last couple of years, I have heard many hundreds of histories. I know the enemy from the inside and the outside.
Jamie
>Part 1
Jason,
What illness affects 4 generations of a family and has the symptoms and signs of ME?
My grandmother became ill in 1937 when she was 28 years old. She was bedridden for several years. Although her doctor could not find anything wrong with her, he gave her B12 shots and thyroid medication. This got her out of bed, but she remained disabled.
She sat on the bed and looked out the window a lot. She developed vitiligo (large white spots on her hands and arms) and atypical rheumatoid arthritis in her hands which deformed some of her joints. She died at age 62 of cancer.
My mother began having symptoms at age 18 and progressed to an unexplained illness that was disabling in a relapsing/remitting pattern. Over the years, she developed hypothyroidism, a large tumour on her uterus, frequent flu or pneumonia, diabetes at age 55, dementia and died of total paralysis.
My grandfather had severe allergies and asthma and stayed in his room a lot. He had skin cancer and died of heart disease at age 72. His father had lived to be 104 and his mother 95.
One of my maternal aunts had uterine cancer in her 30's, hypothyroidism, allergies, and was diagnosed with Fibromyalgia. She died of heart failure at age 73.
A second aunt was first diagnosed with MS, then Lupus, and finally CFS. She has heart disease and just had a pacemaker put in her heart.
A third aunt was diagnosed with Sarcoidosis, hypothyroidism, asthma, and allergies.
I came down with a "flu" when I was 18 that kept me in bed 3 weeks. I was never the same after that, but I was able to complete college. I had a severe worsening at age 31 and the beginning of a relapsing/remitting illness that was diagnosed as Allergic Tension/Fatigue Syndrome.
I had unexplained rashes, generalized itching, hypothyroidism, ovarian cyst disease, uterine fibroids, chronic bladder infections, mitral valve prolapse, chronic sore throat, chronic sores in my mouth, and chronic thrush. My doctor said I had a very small heart.
I was later diagnosed with early MS, then Chronic Inflammatory Demyelinating Neuropathy, then Multiple Chemical Sensitivity, then Immune Dysfunction, then arthritis of the spine. I had elevated GM1 antibodies, elevated Rheumatoid factor, and elevate ANA antibodies.
I became disabled in 1990. As the years passed my disability increased to the point I am an invalid.
I was given a diagnosis of CFS in 1999. I had the lowest Natural Killer cell levels my doctor had ever seen. I had elevated Epstein-Barr, CMV, Rubella, and Herpes 1 titres. I was mildly
anemic.
End of Part 1
>Part 2
I was diagnosed with Lyme disease in 2000. I was also positive for H pylori. My IgG subclass 3 levels were extremely low. My levels of the inflammatory marker C4a were 5 times the highest normal level.
My levels of the immune marker CD57 were very low, and I had low carbon dioxide levels.
When my methylation function was tested, it was very low.
My son (my only child) has been diagnosed with ADHD and Fibromyalgia. He also has severe fatigue on a relapsing/remitting basis. His doctor told him that he had had tuberculosis at some time in his life, but it was dormant now.
That's four generations, Jason, I would be very interested in your theory of what is causing the illness in my family.
>Part 3
One more thing. My husband is ill too. He started getting ill about 20 years after we were married. His dad died at age 90, and his mother is still alive and in good health at age 91.
>John Coffin peer reviewed Lombardi et al. He saw the original data and slide. He has always known about AZA, so Science did too. Science will therefore have edited the paper the way it is, probably because there were so many complicated experiments in Lombardi et al. If they had thought AZA germane they would both have asked for that detail to be included. Coffin and Science didn't and so published.
So what is the problem?
>Hello Jason, I hope you are still reading here. It's nice that you want to look at various possible causes of CFS. Trouble is, these causes have been looked at a lot, well, as much as the gov. is willing to spend on them – not much. It does make sense to follow the retrovirus hypothesis further. A retrovirus damaging immune function would open the door to all the other infections and inability to handle toxins. Furthermore, those of us who are patients know that we have reactivated infections, BUT WE DON'T ALL HAVE THE SAME INFECTIONS. So do you really want to keep looking at these again? Erik Johnson is probably the only case without EBV, but he demonstrates that EBV is not the cause. Also, Mikovits and Lo were finding a similar retrovirus, but not the same. She labeled hers XMRV but said there were other strains she was not testing for at the time. Furthermore, there are all kinds of screw-ups in lab testing that would mean you didn't find it when it was there – didn't collect the blood samples correctly, stored them too long, used the wrong chemicals to study them, collected them from patients whose retrovirus had left the blood to hide out in tissue, looked for one strain of retrovirus in a family, didn't look long enough, lab contamination (which may infect lab workers as well as screw up lab results), need to try other test methods.
>Kathy d. wrote,
"…my one addictive hobby — reading global mysteries and reading related blogs. A great destresser is reading fiction. I suggest it."
I would love to follow your suggestion but don't know where to begin. Could you perhaps direct me to one of the blogs you mention, to get me started? Thank you!
>"She labeled hers XMRV but said there were other strains she was not testing for at the time. "
Silverman mistakenly named the viruses discovered by Lombardi et al. and confirmed in Lo et al. XMRV, which has come to mean VP62 according to Coffin and others. He sequenced 3 of the 68 positives and had VP62 plasmid contamination. The WPI and NCI have proven their results are not VP62 plasmid, but HGRVs. The VP62 plasmid has never been in the WPI or NCI labs. In reality what the tropism of those viruses are is unknown. Some will likely have the largest host range, which is xenotropic other could be polytropic. But Lo and Lombardi et al. have both discovered polytropic gag sequences. That is the same identical finding. Confirmation!
>There were no strains that anyone was testing for and the RT-PCR used in Lombardi et al used the VP35 clone, not VP62.
Since when are different strains of HIV or HTLV said to not be the same virus? M, N. O etc are all HIV-1.
But with HGRVs we are meant to accept everything is VP62 when that has never been found in nature, and when it is proven not to be the viruses discovered by Lombardi and Lo et al.
>Anon and anon, let's KISS. No not all HIV is HIV 1. Here is a quote.
"HIV is a fast-mutating virus that has developed into many strains since scientists first identified it in the United States almost 30 years ago. There are so many strains of HIV that scientists haven't tried to count them. While there are too many strains of HIV to number, there are 2 main types: HIV-1 and HIV-2. The HIV-1 virus has 3 main subgroups."
Read more: How Many Strains of the HIV Virus Are There? | eHow.com http://www.ehow.com/about_5068053_many-strains-hiv-virus-there.html#ixzz1auGeWmW4
Did Lo find a different retrovirus from Mikovits? Was it in the same family but different? I think the point is they both found something they do not think was contamination, and both retroviruses seem related to retroviruses in mice. We must pursue this, for the sake of humanity. We have cured all the mice.
>Does anyone have anything to say about a person, after having CFIDS for decades, and nearly totally homebound, suddenly getting Herpes 1, testing high for it, with unpleasant symptoms, after not testing for it over the years?
How does this happen when one is basically homebound, rarely even seeing other humans.
I have read one can carry this virus from childhood on, and then suddenly it becomes active when exhausted, have malnutrition, or immune system is weak (!).
>To Constance,
I'll be glad to send you a list of websites, even some suggested books you can probably get from your library, as I do this frequently with friends.
I just don't think I should do all this on the website devoted to CFIDS.
So if you have a way I can email you directly or post it at a blog or something, I"ll be glad to.
>Kathy there is HIV-1 and HIV-2, within each there are variants, i.e. M, N, O for HIV-1 and then strains within those.
FeLV there is A and B, but both are considered to be the same virus.
"Did Lo find a different retrovirus from Mikovits? Was it in the same family but different? I think the point is they both found something they do not think was contamination, and both retroviruses seem related to retroviruses in mice. We must pursue this, for the sake of humanity. We have cured all the mice."
They both found polytropic gag sequences. That is the same finding. There is no scientific evidence of contamination. The Lombardi paper did have many more experiments to support the finding. Including a human immune response to an MLV virus, not an endogenous virus.