XMRV Article in Chicago Tribune and other papers

[justinreilly]

The comments on their own would be hysterical. You can't really blame what she actually said on the reporting.

Stating hysterically that...

Obviously 'overreacting with fear' or whatever your dictionary definition of hysteria was, the definition you cited is more a colloquial defintion than the main, base definition of hysteria as a psychological disorder of females resulting in somatic expressions of distress whose cure is a hysterectomy. And obviously our CDC sponsored persecutors call us sufferers of mass hysteria to this day (Christine Heim at Emory). I don't know why i am wasting my time even typing this as it seems to me i am just falling for your baiting.

 

[justinreilly]

I actually was wondering if DeFreitas had taken a different approach, call it the Mikovits alarm, would things have been different? The point Mikovits is making is that the research is not responding with the urgency the evidence is calling for. I am confused by the thought that no one is doing anything. I thought she had at least eight working with her on research. But I guess she thinks more is called for. And isn't CDC doing something? Maybe she knows CDC has finished study but are holding back. If that is the case, she may be trying to put them into a corner to act.

No matter what DeFreitas did outside the lab she was toast- the climate was even worse for us back then in terms of being taken seriously, she was essentially on her own with no more funding from CAA and NIH and CDC waged war on her much worse than what's going on now, imo. to top it off,
she contracted a serious chronic illness.

When she says 'noone' is working on it she is using the term colloquially, as in "barely anyone considering how important it is". CDC is testing WPI's samples and also Reeves criteria patients and we all know how trustworthy and reliable CDC is.

Whatever, strategy or real concern based on results she sees in the lab, she is confident and will either be a hero or go down with egg on her face. We also need to take into consideration that she has been continuing the research and she has seen more than what has been published. Has WPI been published since October? If not, think of all the other studies they have been doing and what she has learned from that, published or not.

Yeah, I know it isn't recognized until published and validated. But that doesn't mean she isn't seeing evidence that others haven't seen yet.

Tina

Excellent point! And I think there is something to be said for the fact that she has worked as a virologist at NCI for twenty years and now has in depth knowledge of ME. I'm sure both conciously and unconciously light bulbs and connections have been going off in her head, that it's all fitting together so well, that all the evidence she has come across is pointing in the same direction that the circumstantial case for a retroviral causation is overwhelming to her to the extent she can feel it in her bones.

To me this educated 'intuition' complimenting all her careful scientific proofs is visionary and positive for science, not hysterical. Using one's imagination is essential in science as in all pursuits. "Imagination is more important than knowledge" as someone smart :Retro smile: once said. Or at least they go well together.

In chess years ago Deep Blue was unable to best Kasporov despite the fact that the supercomputer's crushingly powerful (at the time) processors could analyze something like billions of chess permutations per second while Kasporov probably could analyze something like a dozen. Kasporov had honed the weapon of human intuition into a deadly instrument which was able to defeat Deep Blue's brute force. This powerful scientific intuition seems to me to be Dr. M's secret weapon. Something to generally rejoice in and not bemoan as unscientific.

 

[alex3619]

Hi Mr. Kite

From a scientific or technical viewpoints you are completely correct Mr. Kite. You have the same viewpoint I would have taken only two years ago.

From an advocates viewpoint, which I am still struggling to become as I have a strong science background, any attention is good attention if it forces people to question what they know. It isn't just about one article or quote, it is about shaking up the public's perceptions, making them more alert to all the real news out there. Maybe some people will want to know more, and wind up looking at websites like Phoenix Rising. Worse things could happen.

From a public health perspective, we have to act on risk. How many people lamented the monumental blunder with AIDS due to acting too slowly, or nobody speaking out about he size of the problem? IMO Judy Mikovits doesn't want to see the same mistake happen again. She wants action, even if it means that she might be proven wrong. Greatness isn't about doing whats safe, its about doing whats right, showing conviction. Every great thinker is discredited for years before vindication and public acclaim. This could turn out to be the same. In the end only one thing will matter - the XMRV research is right, or the XMRV research is wrong. (Albeit it is also possible that it is right but woefully incomplete.)

I do worry that if XMRV research collapses then Judy Mikovits may have trouble finding good employment prospects. However, the upside is she may be on a path that will mean she can pick and choose where she wants to work and most places will be glad to have her. The same goes for all the other researchers at the WPI.

Bye
Alex

My comments weren't ignorant at all, but highly accurate, in fact. She's not helping her case with her hysterics, either over AIDS epidemics or in accusing the scientific research community of gender bias; she is wrong that there is "no recourse" - a comment that plays to this sense of urgency she is trying to create that ignores the usual workings of science - and her moves in general smack of desperation. All that tends to decrease one's credibility.

 

[alex3619]

Hi Forbin,

I agree with this sentiment. I have seen it time and again. It highlights an important issue as to how science really works, as opposed to how we would like it to be (me included, I would love stricly Popperian science). In reality, science advances as much from debate as it does from publication. In the end, most will know of the publications, but few will remember the heated debates.

Oh, and I loved your signature.

Bye
Alex

The moral of the story seem to be Take on your critics. Dont hide your light under a bushel. If you don't show that you believe in yourself, why should anyone else believe in you?

I think we are actually very lucky to have someone with this type of personality in Dr. Mikovits. A lot of other researchers would no doubt wither under the type of criticism shes come up against. Yes, she may ruffle some feathers (heavens!), but if you dont want to get into the arena and fight for your ideas you can expect to wait 49 years until they become commonplace. Then you'll get the retraction - - - in Goddard's case, 24 years after his death.

Every vision is a joke until the first man accomplishes it; once realized, it becomes commonplace.​

-Robert Goddard​

 

[alex3619]

Hi DysautonomiaXMRV

I think I would do very badly with this illness in the UK if I ever had to go to hospital. I couldn't help but tell them how f****d up their viewpoint is, don't they ever read the science?! I would quickly be listed as an hysterical troublemaker, even though I would say everything in a quiet calm and reasoned tone. They would just ignore the careful reasoned arguements I gave them, the references to scientific research etc.

I still doubt I could help myself though. I am considering a campaign of writing a letter of complaint to the Australian Medical Association every time I meet a doctor who shows complete lack of knowledge on ME and CFS research - which is almost every doctor, almost every time. Ignorance has to be challenged, otherwise they will continue being ignorant. I do try to keep my advice to doctors to just one point though, usually the latest research finding.

Don't put youself down, we appreciate your ability to write and that shows who you really are. Most of us are well aware that ME and CFS severely crash functional intelligence - most of us are struggling to be half the person we used to be. Only when you are completely cured, when we are all completely cured, will we really know how smart we are. For now, we are just glorified Zombies. In any case, intelligence isn't everything. I would take well over smart any day, not that I wouldn't like to be both well and smart. ;-) Passion, drive, integrity, emphathy, these are all attributes that are just as important as intelligence. ME and CFS might crash our functional IQs, but it is fantastic for teaching us about these other things - although we really have to watch our drive to do things, as our capacity doesnt match our drive.

Bye
Alex

Hi Danny B. Well.... I can't possibly be smarter than you or anyone on here as I never finished school as I was washed up with this illness by age 16.

Lastly, my doctor recently visited my home and told me not to talk about XMRV now I am positive, and instead tried to sell me CBT. She smarted when I had the bravery to ask her.. ''CBT for retrovirus''?

 

[alex3619]

Hi V99,

Speculation precedes hypothesis, hypothesis precedes study, study precedes results. I agree with you on this V99. The debate is over whether the media should be involved, and it looks like the viewpoints are very wide on this. Stricly science says nay, strictly advocate says maybe but..., while those who are concerned over public risk say something must be done, now - but we can't reach agreement on what must be done.

Bye, Alex

She is speculating, as Goff & Coffin have done, and many more. This is how they progress research, they build a hypothesis. I agree, with how others have viewed the article, that the reporter did their job and fitted the comments to the story they wanted to tell.

 

[natasa778]

Whatever, strategy or real concern based on results she sees in the lab, she is confident and will either be a hero or go down with egg on her face. We also need to take into consideration that she has been continuing the research and she has seen more than what has been published. Has WPI been published since October? If not, think of all the other studies they have been doing and what she has learned from that, published or not.

Yeah, I know it isn't recognized until published and validated. But that doesn't mean she isn't seeing evidence that others haven't seen yet.

Excellent point Tina!!

(on the other hand, since she is a "hysterical woman" she may be just "seeing" things )

 

[Mithriel]

The biopsychosocial school use words like weapons. Every sentence is carefully honed, every word carefully chosen - the difference between sickness, illness and disease for example.

On a purely personal level, I love the way Mikovitz is so full of enthusiasm she talks without thinking. She says what she feels without analysing what could be quoted out of context, she theorises and she cares.

She's human :Retro smile:

Mithriel

 

[V99]

"I don't like these kinds of fights. I would prefer to have scientific debates on the scientific level."

This quote from van der Meer is pathetic. After all, he was one of those responsible for withholding important information.

 

[parvofighter]

Hysteria vs heroism?

I felt compelled to emerge from my crash to comment about,

Mikovits obviously trolling the entire scientific research community with her hysterical comments.

A timely question here might be the following: "When is a "sense of urgency" hysterical? And when is it heroic?"

The Cancer Link
An interesting addition to this thread would be the finding that a disproportionately high percentage of patients who had ME/CFS for 20,30 years have been presenting with clonal T-Cell receptor gamma rearrangements (a danger signal for cancer), and that they have indeed been coming down with deadly lymphomas. Additionally, the rate at which these lymphomas present is far outside of the epidemiology that one would expect. In other words, this is a massive red flag arguing for ME/CFS - and XMRV - to be taken seriously.

The Viral Cardiomyopathy link
Additionally, a quick look at the abundant research on viral cardiomyopathy reveals that opportunistic viruses commonly associated with ME/CFS (EBV, HHV-6, CMV, Cocksackie-B, Parvovirus B19 etc) are known to also cause viral cardiomyopathy. Just do a PubMed search of "myocarditis and virus". While some posters might scoff at the mortal risk of ME/CFS, those of us with biopsy-confirmed viral cardiomyopathy or lymphoma know better. The stark reality is that viral persistence in the myocardium - in PVB19 myocarditis for example - is associated with progresive cardiomyopathy and death. In other words, you need to eliminate the virus - or else. And this is certainly borne out in the stats in ME/CFS patients with heart failure (see Jason's work on this), who are dying decades earlier than what one would expect.

Mikovits is in good company
The fact is that Mikovits is privy to far more information on XMRV than armchair posters who ridicule the potential for a pandemic of mammoth proportions. Consider the words of Stewart le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at the US National Cancer Institute (NCI). As he commented in the Wall Street Journal,

NCI is responding like it did in the early days of HIV.
​

http://online.wsj.com/article/SB125501227713473525.html
​

So why isn't le Grice called hysterical?

Given the alternative of listening to naysayers who don't acknowledge the devastation this disease wreaks on the living - much less the early mortality statistics of ME/CFS - and the known linkages with lymphoma and viral cardiomyopathy - or listening to Mikovits who is "plugged in" to the reality of morbidity/mortality in ME/CFS (and indeed to the linkages with other neuro-immune diseases such as ASD), I'll choose the latter.

WHEN will tangible steps be taken to prevent XMRV transmission internationally?
Let me put it this way:

• If I were scheduled for elective surgery in June of 2010 - in which there were an excellent chance that I would need potentially tainted blood products - and I knew about the risk of XMRV, I would most certainly postpone my surgery until I was assured that the blood had been screened appropriately.
• If I were pregnant and about to give birth, and I knew about XMRV, I would insist on the kind of measures that HIV patients are afforded, to reduce transmission of a retrovirus to the baby.
• If I knew that I would be killed in a car accident tomorrow, and that my organs would be donated to some hapless victim, I would scratch out my authorization for organ donation
• If I were entering into a sexual relationship, I would insist that we used a condom.
• If I shared a toothbrush with someone, I would stop!
• And of course, if I were in one of the blessed remissions of this disease, and wanted to donate blood - I wouldn't!
• The list goes on....

Bottom line, there are a myriad of preventive measures that could be initiated NOW to prevent the transmission of this virus which has destroyed so many of our lives. With all due respect to the naysayers - and of course you are entitled to your opinion - I would argue that you don't "get" how serious, life-destroying, and fatal this disease is.

Our concern isn't driven by hysteria. It's driven by compassion for the poor souls who will unwittingly and unnecessarily stand to contract XMRV as a result of delayed and concerted action by our international authorities. I would not be at all surprised if October 8th 2009 were to be used as a watershed date in future class action suits against institutions not taking appropriate measures to protect their patients from XMRV. Just how long do we have to wait - and how many people will be unwittingly infected - before there is concerted action on XMRV?

Thank heavens there are bold souls who speak the truth, fighting for accelerated ACTION on XMRV! Dr Mikovits has never struck me as someone who cares about what's "popular". She's doing what's right. And I'll bet the naysayers a Canadian "loonie" that she will be proven to be heroic, not hysterical, for her appropriate sounding of the alarm on XMRV.

 

[V99]

parvofighter.

The quote from le Grice says it all, as does the rest of your post.

Just one question, what is a Canadian "loonie"? Sorry, never heard of this.

 

[Mithriel]

Beautifully summed up Parvo. Than you

Mithriel

 

[garcia]

Great post Parvo.

 

[Adam]

parvofighter.

The quote from le Grice says it all, as does the rest of your post.

Just one question, what is a Canadian "loonie"? Sorry, never heard of this.

I believe it is a dollar coin or is than a toonie? And a loonie is a two dollar coin?

Help me out Canucks. I'm gonna look silly here showing off my I know all about Canadian stuff

he-he

Adam

 

[Adam]

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 refused to get bogged down with tiresome articles. Pass me the plunger Flex - I think we got a blockage here.

 

[girlinthesnow]

Other way round Adam

A loonie is a Canadian one dollar coin because it has a loon on the reverse side. a toonie is a two dollar coin, obviously

 

[V99]

Oooooooooooooooo Canada

 

[natasa778]

Pass me the plunger Flex - I think we got a blockage here.

Guys, guys, guys, there you go again with that funny language and passing of weird things around tz tz tz tz tz how very immature of you two :Retro wink: you were nicely warned not to do that and it will be all your fault when cfs is again said to have a mental basis ... now sit up straight, arms and legs crossed and no talking please.

 

[Esther12]

Characterizing anyone who expresses a different POV as "trolling" is obviously what's not "kool."

Nah - pretty standard procedure. I wouldn't worry about it.

You could be right about Mikovits, but currently, I think it's more likely that she's just rather naive in the way she communicates with the press. Who knows?

She has already commited her reputation to XMRV, maybe she is a bit too emotionally involved at the moment. In a way, I feel like you'd have to be quite emotionally involved to be willing to spend your time on CFS.

 

[jeffrez]

Nah - pretty standard procedure. I wouldn't worry about it.

You could be right about Mikovits, but currently, I think it's more likely that she's just rather naive in the way she communicates with the press. Who knows?

She has already commited her reputation to XMRV, maybe she is a bit too emotionally involved at the moment. In a way, I feel like you'd have to be quite emotionally involved to be willing to spend your time on CFS.

That's really no excuse. Safe to say that most researchers are emotionally involved in their work. If they weren't, they probably would be researching something else.

Regardless, the inability to separate your emotions from your scientific inquiries is seen as highly unprofessional in the scientific research community. That degree of emotional involvement along with the inability to detach from it can also seriously jeopardize your credibility. People can jump up and down and have temper tantrums and accuse other people of "trolling" all they want, but it doesn't change the basic fact of perceptions within the community.

I think you are right to say that she very well could merely have a communication problem, but that again doesn't save her comments from sounding hysterical. She would in that case do herself (and all of us) a favor by hiring a PR consultant to handle press inquiries and events for her.