XMRV Article in Chicago Tribune and other papers

Don't know if this has been posted yet, an interesting read. Includes some candid comments by J.Mikovits and J.Coffin. Here is an interesting quote:

The article:

http://www.chicagotribune.com/health/ct-met-chronic-fatigue--20100607,0,5298063.story

 

Kurt,

This article does some very very harmful things.

1. It employs sexists stereotypes deliberately to portray Mikovits as angry and overly excitable, and van der Meer as somehow a cool headed type who is only interested in the science. And yet we are all WELL aware of the effort that Dr. Judy has been making to stay cool in the face of biased funding agencies and researchers who have too much at stake if a real cause and treatment is actually found. We are also all WELL aware of the low blows and barely veiled personal insults that van der Meer has been hurling to try to make XMRV go away. For someone who produced an EXTREMELY sloppy paper, he is being given an awful lot of media space. As a woman who has had to deal with this form of sexism throughout my adult life, the choices of quotes and portrayals of the various scientists made me nauseous.

2. The contamination issue has been invalidated, yet it is given high priority, with evidence to the contrary only skimmed over much later in the article.

 

Not surprising coming from Trine or CTribune, they have been at this before and believe you me she must have tried really REALLY hard to mudsling Judy/WPI and this if this is the best she could do then it is all good.

That lady has the morale and stamina of the worst of the "science" bloggers and a knowledge/background to match (ie absolutely none).

Trine alternates between writing about chocolate and baking and then on days off posing as a science writer, attacking everything and everyone who approaches autism as an organic disorder...


And now it seems she has found a new easy target to flex her muscle. She will be at it again, no question about that.

Good news is that CT is nearly bankrupt ...

Chicago Tribune Buys Award With CDC's Help
http://www.ageofautism.com/2010/04/chicago-tribune-buys-award-with-cdcs-help.html
note the ominous comment by AnneB below




Trine on another quest for truth
http://www.ageofautism.com/2010/01/...atment-community-thrice-bitten-twice-shy.html


Chicago Tribune's Trine Tsouderos undermines OSR antioxidant
By Dr. Stephen C. L'Hommedieu Unprincipled science and medical reporting are ...
http://www.renewamerica.com/columns/lhommedieu/100212


....
etc

 

Thanks for the link Kurt.

Yes, it's obvious that the author does her best to paint the picture she wants painted. All from the headline/picture she chose of Mikovits to the way she's taking quotes out of context. And obviously doing what she can to make her seem as a person who's a "sensationalist" and self centered.

Awol, how about writing a letter to the editor of the Chicago Tribune? Chances are good they'd publish it.

 

Kurt, thank you for posting this link. I think it is very important that we all respond to this article. I am sick and tired of seeing Dr. Judy M. being attacked like this. She is a great scientist and I do not want to see XMRV being downplayed here. There is a very noticable trend that when any mainstream scientist makes a discovery regarding ME/CFS and autism, they are ridiculed and treated like a leper. I am one of the few fortunate people here that do not suffer from ME/CFS but my family (3 members) are sufferering from this and my two children have autism. I am trying my best to help them and saddened when I see this happen. For years now, parents such as myself have known that children with autism have a disruption in their methylation cycle. The "kooks" that have discovered this have been downplayed and ridiculed. No "mainstream" treatments have been tested or applied. Now, more than decade, the so-called main stream scientist are saying, wow, look at this, their is a problem with the methylation cycle. http://www.sciencedaily.com/releases/2010/04/100408123245.htm

No sh*5. We have been saying that the rate of autism has been increasing dramatically. For years, we have been downplayed and the press reports it is a just a matter of better diagnosis or a switch from MR to autism. Finally, more than a decade later, when reality hits them in the face, they realize the rate has increased (dramatically). Now they are discussing epigenetics because they are fully aware that there is no such thing as a genetic epidemic (although Cohen still claims it is just a matter of women tending to marry scientific geeks). Sorry for the rant. My major point is that I would be most appreciative if we all responded to this article.

 

Hi

I have just posted a comment on the Chicago Tribune site, but I had to use 00000 as my zip code because I am outside of the USA. Maybe more of us could reply to this? Here is my post, and please forgive the typo:

I support the work of the WPI and Judy Mikovits. Her concerns over a potential catestrophic global health issue are not rediculous, just something that has to be factored into proper global risk assessment. Her worst case scenario is correct, so we need the science to prove it either right or wrong. If correct, we are then forwarned and can act. If we ignore it the scope of the problem might become so large that it could collapse the world economy yet again to even start to fight this.

With regard to CFS cheats disccused in one of these posts, there is no credible evidence of this, and so it it is not a fact. There are two ways to reliably catch cheats anyway - cutting edge medical testing which is usually not used, and putting them in a room with real patients. We can spot fakes in seconds, but every case I have seen has been someone who has been misdiagnosed because their doctors are not diligent enough or don't use the latest tests, so they aren't real fakes. There are also many biomarkers of CFS, most of which have more than 80% prevalence taken individually (some up to 99%). Run a few of them together and any potential cheats will have nowhere to hide, and the doctors will finally understand how sick the real patients are - a win/win scenario.

alex3619 (06/08/2010, 8:34 AM )


Bye
Alex

 

Hi

I just posted an additional comment:

Just to clarify, in my previous post I should have said her worst case scenario is credible, not correct. We still need proof.

bye
Alex

 

OMG this article is not worth reading, guys. This journalist has an agenda, she already wrote several foul pieces about autism treatments in the past. Very harmful things and completely innacurate. I know first hand because a couple times she wrote about my son's long time doctor, who is a kind, smart and devoted man, an excellent doctor and researcher who did not deserve anything she wrote. I don't know why she is doing this, trying to harm doctors who are really trying to help and actually succeeding in doing so. Interesting that she seems to go after the best ones. I personally don't even read what she writes anymore. I'd rather read the National Enquirer. I also heard (though just a rumor), that the Chicago Tribune is headed for bankrupcy, maybe they are trying to get attention and sales through scandalous articles, I don't know... In any case, I am not going to help them by attracting attention on their articles, however outrageous they are.

 

Dr Coffin appears to have chosen sides or maybe doesn't want to emulate his surname by helping the little people? (the WPI).

We have evidence of a budding real new virus under an electron microscope, and he says ''It is not impossible that there is something fundamentally wrong with the initial study''
Huh? SCIENCE don't print studies that are possibly fundamentally flawed, we all know that.

The only thing fundamentally wrong,is in nearly 9 months - we have no action.
No advice, no leaflets, no plan of action, no actual action!

This is not Dr Coffin's fault, it's people at the very top blushing at the reality the WPI just served an ace and they have no tennis racket to return the ball with.

People and their families are sick, some are dying. Some are dead. There is no scope in this to 'doubt' when the WPI Postulate this XMRV is linked to CFS and people actually are testing positive for it who just happen to have neuro immune disease with the label CFS, and healthy people are 25x less likely too.

If you inhale dust, and are shown that people are 25x more likely to have an asthma attack, doesn't that suggest that dust may trigger allergic reactions? Or is that possibly fundamentally flawed science? Time for government agencies to DO SOMETHING, and end the endless theorizing towards the negative - of what if we're wrong and it's all a dream, a ghost in the machine, an apparition due to over excited women with an agenda. Yea, the old sexist message again.

'Wrong' doesn't invent a new human retrovirus under an electron microscope in 3 different countries, in laboratories separated thousands of miles from
each other.

'Wrong' doesn't invent the same infection in people who universally claim to be (and indeed are) severely functionally impaired with a post/persistant viral fatigue syndrome.

'Wrong' just happens to be a virus, not an ice cream machine or a aluminium door knob, but the very thing people with CFS claim caused them to become ill in the first place.

It's so obvious in people tested (not all cases of CFS obviously), for these people XMRV is highly implicated and we have people saying it could be an error and it's nothing. Instead, why not help these people with XMRV to stop spreading their infection, and improve their quality of life (CFS is perfectly able to be other things, and will be). Why is that so hard to start?

Isn't this why they are driving an Escalade and you're driving an Escalator? (Increased functional capacity enables productivity enables possibilty such as employment and money). The only money us 'CFS Homies' are getting for our 'ride' on a friday night downtown is a parking ticket in a disabled bay outside Walmart. Life, could indeed - be rather better.

Scientists appear to be obessing over a giant CFS cloud that has to rain on a certain day on all states, when the reality is, some clouds rain a certain rain droplet on some states, and it's this that is being debated as never raining at all.

WPI never said XMRV causes CFS, it said XMRV was found in lots of people who were told they have CFS. The irony is here, the people with XMRV may not have CFS at all, but XMRV that causes neuro immune disease. This suits both pro and anti XMRV people just fine. Hence the WPI tentatively invented the term XAND, for this very reason.

I don't care if XMRV isn't CFS, it doesn't matter - it's three letters. XMRV can be called flim flam pjyama banana hop scotch syndrome and I'll accept that. What people need, is medications.

OMG!!!!!!!!!!!!!!!!!!!!!!!!!!!! These people are so sloth like in their ability to process, delegate, organise and act on even 1 person being sick with XMRV, never mind 1,000, or 100,000.
Perhaps all the XMRV folk should all go on Oprah (via Oprah emblazoned ambulances) and get her to write to the CDC because no one outside the WPI is actually doing anything constructive whatsoever to help people with XMRV.

Dr Coffin saying that patient's claims to a virus could be fundamentally flawed when we all know it's not contamination (confirmed by CDC, NCI, Cleaveland Clinic & other labs), and it's real - confirmed by photographic evidence of budding retrovirus and other countries, laboratories unconnected with the WPI also finding it in other countries - is most unhelpful for patients with XMRV. Did he say this? Maybe it was journalistic license. Who knows.

What we do know is people with immune and brain disablities are waiting to get their results on XMRV from small company (VIPdx). Doctor's read negative (unsubstantiated XMRV comments) - that may influence them in the negative themselves. They then prohibit patients finding out if they have XMRV (by stopping access to testing). This is bad. If people in the community are infected, an infectious risk, or have indeed (tragically) already passed on their infection to their children, they need to know as soon as possible. We must have an FDA approved test to do this, one tiny little VIPdx lab, cannot possibly cope.

As a parent, finding out one is XMRV+, this would be utterly devastating. I would far rather my child find out about being XMRV+ (whilst healthy) through a calm process of taking my child to a doctor, than having a kid in the playground taunt and poke them and calling them 'freak' or 'AIDS BOY' - when possibly in a year or so the news breaks. (The CDC keeping this secret and hidden will make the inevitable news, even harder to swallow as these kids will learn and be told 'mommy has XMRV but she doesn't know what to do'). So for years, the child of the XMRV will have to keep this hidden thanks to the caustic anti-XMRV environment that inevitably emerged. Anybody interested or aware of CFS politics could predict this would happen when the XMRV news broke in October 2009.

More stigma.

One doesn't remove stigma of HIV/XMRV by avoiding the possibility of it tapping you on the shoulder, rather firmly in the near future.

Ultimately, scientists aren't counsellors, or therapists or care givers - and boy does it show.
Health agencies produce public advice and plans of actions, and we need ACTION not DISMISSAL for those infected with, or at risk of transmitting their XMRV further - entirely innocently.

Only FUNDING can do this. FUND & ACT CDC, FUND & ACT.

 

I felt that the fact that the WPI had such a big finding in such a controversial disease and fact that the paper appeared on one of the most prestigious scientific journals in the world, and the fact that nobody outside of us ever heard of the WPI before, blah, blah, blah, meant to me that they had a huge target on their back. I wish they had just buckled down and kept everything quiet - just made very cautious statements, etc. but they took the opposite route.

This reporter is presenting a viewpoint that is out there. We already have to deal with the controversy over CFS - now we have to deal with the controversy over the medical director of the WPI. It makes me so upset!

Why in the world, in the midst of all problems, did she have to go to that Autism conference? I just can't imagine.... I have the feeling that Dr. Mikovits is a very passionate and caring and also a very stubborn woman!

You realize the article is not about CFS anymore? It's an article about Judy Mikovits.

This can only make it harder for them to do their work, to raise money, to get grants.....

Its too bad! It doesn't matter who's right or wrong; what matters is that its out there..hopefully we won't see more articles like this.

The flip side of this, I guess, is that Dr. Mikovits is so sure of the XMRV finding that she doesn't care what people think, which is encouraging in a strange sort of way.

 

That's the key: what's out there. Let's just not give this article too much resonnance, let's not forward it or cite it too much, that is just what they want: broadcasting over the internet. Who reads the Chicago Tribune anyways? Why give them what they want by talking about it too much?

 

I honestly don't think he's taking sides - I think that's one of the scientific boilerplate statements that researchers so often make - he's just allowing for that possibility. My experience is that's the way researchers are, in general. She used his quote because it fit in her story. I don't really read anything into it.

 

Well, I don't know why, this seems to happen often on here. But I have a different view of the article.

I liked it.

For once, the idea of "mysterious" and "not believed" is not brought up. The whole article completely validates the severity of CFS symptoms, even among those who don't agree with Mikovits' pushing ahead without waiting for validation.

I am glad to see the issue of controversy among researchers is brought to attention in such a major newspaper. The scientific model of research is very slow. I love the comment from the researcher that referred to the eagerness of HIV researchers was a problem. Most in the public will remember what it was like when people were dying with awful sores on their bodies, cancers and wasting away. The problem was not that researchers were pushing ahead. The problem is that they were too slow. How many people know someone who died with HIV who will laugh or get angry at that comment?

And this article shows a similar desperation is felt among CFs patients.

This reminds me of the movie "Lorenzo's Oil" which exposed the same issue: medical research is too slow for some diseases. In that case, young men were dying and scientists didn't want to try the proposed oil without all these hoops. In the mean time, the patients are just supposed to hope while they die. I saw an article last week that 13 years after the oil was discovered, the effectiveness was proven in research. Patients, though, have been taking the oil all during that time, pushing ahead. And they have much longer and more fulfilling lives as a result. Lorenzo's family established a center that focuses on research in the view of helping patients, not for families to serve medical research. And the center focuses on collaboration of researchers instead of competition.

This issue of whether current medical research protocol works in all cases needs to get some press coverage. And Mikovits is stating it doesn't and she explains why and this reporter put that message out. Yes, she got other researchers to give their side. But that makes it a fair article for the reader to decide for themselves.

It's a risk versus benefit analysis. But the rules that these researchers go by do not fit when there is an emerging infection that could be causing widespread disease of many forms. Again, remember HIV.

I love Mikovits' comment about bringing the illness out of barbarism. She says this is such a public health concern that waiting five or ten years for validation is just not appropriate. And she is willing to stake her career on it.

She says the lack of response from government has moved her into actions that other researchers say do not follow standard protocol. But this reporter puts in many of the statements Mikovits made explaining why protocol and her career are not the primary concerns here. There is a much more pressing issue. I love it.

I love that she said they are more concerned in whether it is causing prostate cancer than her work linking it to CFS. (This appears to be true at this point.) "Will they ignore the children too?" She is putting them on the spot publicly. And again, this comment is included in the article.

There are a couple of mistakes. The reporter should have asked or included the evidence as to why the original study is likely not from contamination beyond just that it was reviewed looking for contamination. Maybe it was originally there but didn't make the cut.

I will admit, linking her to the disgraced British Autism doctor is not good. I don't know if she shouldn't have gone because the whole thing was out from left field views or if the reporter made the link, even though the overall conference was more mainstream. If it is the latter, then that would be a mistake of the reporter, might or might not be because of bias.

And the bullet point box says: No lab test exists to diagnose the disorder. This is not exactly accurate. Would have been better to have said, "No widely accepted lab test exists..." As Peterson, Cheney, Klimas and others know, there are lab tests to diagnose the disorder. Reporter probably got that statement straight from CDC Web site, in that case, not reporter's fault.

Maybe all these researchers will take pity on us poor desperate patients that will try anything and will be moved to get answers, if for no other reason than to save us from the dreaded anti-retrovirals. And in the process, they just might discover the truth.

It does mention Mikovits' experience.
It said the Science article included scientists from Cleveland Clinic and NCI.
It mentions that showing a retrovirus causes illness is especially difficult.
It did mention that the research was closely examined by peer reviews looking for whether it was contamination.
Mentioned the immune system response.

From what I see, Mikovits is saying we have to use unusual measures since no one is seriously looking into this.
Other scientists say, "Well, needs to be validated before such public claims are made."
And Mikovits says, "But they aren't doing it."

So is she and us just supposed to sit back and wait for someone to try to validate it (using same methods) five, ten, 15 years from now, Possibly never? Even CDC has studies on CFS that other researchers have yet to validate by independent research, according to Komaroff. These studies show biological abnormalities.

It's like someone saying the answer is lobbying. But if years of lobbying is producing no results, then a public demonstration is called for. Something must be done to bring public pressure. (I am speaking generally of any issue, not just CFS). Sure, lobbying is nice, if it works. But if it doesn't, then maybe some burning of flags on the front lawn of the White House might be in order.

In the case of XMRV, yes, the medical research conservative approach is good. But if others aren't giving this the attention it needs, considering the pressing public health concern, then the rhetoric volume must be turned up to spark some action. Do something, just do something, either way, do something. Thanks to Mikovits, CFS is not invisible. Were it not for Mikovits doing what she has been doing, Chicago Tribune would not have done this article on the controversy. Being ignored is worse than an article that isn't perfect.

And again, anyone with memory will know the problem with HIV was not that patients were trying bad treatments. The problem was they were dying because there wasn't one and there was bias against them.

I am glad the controversy is getting some exposure and some comments exposing the bias against CFS are put in a newspaper with such wide circulation as Chicago Tribune. Someone needed to say. Mikovits is saying it. And finally a newspaper is printing it.

This article was overall fair. It brings attention to our plight. It brings attention to the controversy among scientists. And it brings attention to the limitations the medical research protocol has in handling diseases such as CFS and HIV.

And I don't think Coffin has turned to the other side. He is saying nothing has been proven, it is all on the table.

Tina

 

science vs. news

The Chicago Tribune is dying, because it is a newspaper, and all newspapers seem to be on the way out. One standard way to boost sales is to provoke or encourage controversy. Most newspaper readers have very little understanding of the practice of science, but a lot of experience with arguing.

Whether you look at print, film or video, most information presented to the general public is tailored fantasy. Just for example, add up the hours spent watching crime shows, and compare them with direct experience with investigation and courts. How many crimes can be solved in one hour minus commercials? Solving real mysteries is simply too tedious for most, even when the subject is as straight-forward and dramatic as murder. When the villain is a microbe, interest often lags quickly.

Dr. Coffin has given no signs of backing away from a position supporting investigation of XMRV. He is simply expressing the fact that, until the last i is dotted, research results are subject to question. This applies to those negative studies as well as the Science paper. Somebody has to be wrong.

Those who have not known working scientists may think of them as superhuman, (or sometimes subhuman,) geniuses. Those who have seen them in action, up close, know they are entirely human. Most have interesting personalities with foibles. They do make mistakes. Some of the most famous have devoted large parts of their lives to failed causes. You cannot dismiss this possibility out of hand.

For me, the real difference is the way scientists respond to criticism. The published responses by Dr. Mikovits have done a great deal to answer questions I have had. The responses to criticism of the negative studies seem to have devolved into ad hominem attacks which provide little enlightenment.

There is another aspect to science which classroom education gets absolutely backwards: science is not about avoiding mistakes, but learning from them. Whatever the eventual outcome, the XMRV work is raising productive questions. Those negative studies basically dump us back in the morass of the last half century, when the problem got worse and there was no significant gain in effective treatment by mainstream medicine.

 

Cort, I agree. Coffin is on our side, he wants to know the truth, whatever that is. I believe he is fighting for XMRV CFS studies. They just used part of his response, as Cort said, the bit that fit the story. I bet he also repeated that it was as good a first paper as you will ever get, and that a replication study is needed to sort this out.

 

I have never witnessed a video or seen Coffin in person making that statement. Infact I'm sure he has made completely contary statements. Therefore I don't belive a word of that quote as the whole of the rest of the article is complete nonsense produced for the brain dead masses. No mention of the CC or the NCI or the Reeves dismissal from the CFS project in the CDC. No simple explanation of the 5 flawed "studies". Not one sentance about the political history of ME/CFS, no mention of worldwide blood bans, no mention of ICD G93.3.

Personally that newspaper is fit for one pupose only, but make sure your toilet has a very powerful flushing system as it come ready filled with BS which doubles the work load for the average domestic toilet.

I am pulling the chain right now!!

 

I like everybody's take . Maybe I just have a gloomy side of things - I recognize that I am very conservative in this area. I was glad to see other people's sides of it; they make me more hopeful.

They article does portray CFS as a disease that needs more support; it does demonstrate how desperate patients are for help.

Positive studies would, of course, turn everything around. The media only deals with one thing at a time - right? This article is part of the problem of 'the lull' - the no positive study lull that we're in; the media is filling up the space - if they had a nice strong positive study from the CDC - that would be the focus and it will be if it happens. Hopefully the next story will be "CDC study validates XMRV in CFS" and when Dr. Mikovits is mentioned they'll say "outspoken CFS researcher Dr. Judy Mikovits" states .........

If/when the positive studies come out we'll be back to where we were in the heady days of Oct.

 

My reading of this is that three separate statements have been put together to give an impression stronger than he intended.

Very true, since the published papers have not been replication studies and have used the method least likely to find XMRV. Also true for the first few years after any major discovery.

A lot of the basics are not worked out yet, but lots of researchers are looking at the basic biology of XMRV

This sounds like the answer to a question "Is it possible ....?" to which the answer has to be, "I suppose it is possible" Doesn't mean he thinks it is likely.

Mithriel

 

I disagree that Dr. Coffin is on our side. He has changed his position on XMRV radically since October. Someone "got to him" about this. He in turn has gotten to others. I suspect that Coffin was behind Huber changing her mind in London and revealing her XMRV study results. Fancy-dan academics do not want this rogue institute from the state of Nevada to be running anything. This current situation is intolerable to them. It does not fit in with their lofty notions of self-worth. The WPI needs help to survive. This small band of researchers are under severe attack and the larger forces, including some of "our own", want to put them out of business. They do not want some aggressive rogue scientist from nowhere in charge or anywhere near in charge. This is not fantasy. This is real life and it is not the first time that this kind of thing has been seen.

Chris

http://cfspatientadvocate.blogspot.com

 

I agree Mithriel and look how he phrased it..."its not impossible........." that's not very strong wording. Saying "Its entirely possible...or Its possible that......" Nobody in the research community can say anything definitive about XMRV and CFS until a positive study comes out. - they just can't; its against their code....they would be in trouble with their peers. Its like guilty until you're proven innocent....until there's absolute proof they are always going to be cautious.

That's, of course, how the British researchers got it wrong - they made definitive statements against XMRV when all they had was that one study.