XMRV Article in Chicago Tribune and other papers

[jeffrez]

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

All that is irrelevant. She comes across as hysterical, and that damages her credibility. That's the only relevant point here.

 

[redo]

All that is irrelevant. She comes across as hysterical, and that damages her credibility. That's the only relevant point here.

The reason why she "comes across as that", is because the journalist has chosen to portray her like that. One might argue that it would be more tactical of her to just work with CFS until that's accepted, and then reveal other findings later, but that's not what she's done.

 

[jeffrez]

The reason why she "comes across as that", is because the journalist has chosen to portray her like that. One might argue that it would be more tactical of her to just work with CFS until that's accepted, and then reveal other findings later, but that's not what she's done.

No, it has nothing to do with the journalist. The email comments on their own about "epidemics worse than AIDS in Africa if we don't ACT NOW!" are hysterical on their face. Unfortunately, if her goal is to get other researchers interested and involved and increase funding, she is only having the opposite effect with a hysterical approach like that. She is only hurting the cause. Scientists tend to be very conservative, and no one wants to be associated with a possibly career-killing issue that has the reputation of hysterical and hyperbolic statements around it. It kills credibility.

 

[natasa778]

Whether or not someone comes across as hysterical in media depends on two factors: one is the way the journalist choses to paint the picture. The other is the subjective perception of the reader.

Some commentators on this thread appear rather hysterical to me. But HEY, that could be just my subjective perception ...

 

[jeffrez]

Whether or not someone comes across as hysterical in media depends on two factors: one is the way the journalist choses to paint the picture. The other is the subjective perception of the reader.

Some commentators on this thread appear rather hysterical to me. But HEY, that could be just my subjective perception ...

Saying we're going to have an AIDS-like epidemic "worse than Africa!" if we don't "Act now!" when nothing has even been definitively proven scientifically yet about XMRV and CFS let alone route of transmission sounds completely hysterical and non-rigorous to the scientific community, believe me. Turning this issue into a circus of hysteria over an unproven pathogen doesn't help anyone.

 

[natasa778]

Whether something is perceived as a "circus of hysteria" again depends on two factors, one is the style of presentation and ...... arrgggghhhhhh **** :tongue:


pass me the plunger someone please !

 

[jeffrez]

Whether something is perceived as a "circus of hysteria" again depends on two factors, one is the style of presentation and ...... arrgggghhhhhh **** :tongue:


pass me the plunger someone please !

Why do you keep insisting on this "style of presentation" issue when I've already demonstrated a number of times that the statements are hysterical IN AND OF THEMSELVES, regardless of the "presentation?" It's not like someone took completely neutral and dispassionate statements and spun them merely to appear hysterical. The original email statements are hysterical in and of themselves, regardless of the presentation. Your point is refuted, do you understand that?

 

[ukxmrv]

I don't think that Dr Mikovits was hysterical in any way and none of her comments in the article are hysterical.

It's all down to our personal opinions. No one can determine that for all readers. It's personal. We will all think our own opinions when we read the article.

Dr Mikovits was commenting with her own knowledge and beliefs and with her own opinions.

 

[garcia]

Why do you keep insisting on this "style of presentation" issue when I've already demonstrated a number of times that the statements are hysterical IN AND OF THEMSELVES, regardless of the "presentation?" It's not like someone took completely neutral and dispassionate statements and spun them merely to appear hysterical. The original email statements are hysterical in and of themselves, regardless of the presentation. Your point is refuted, do you understand that?

Often hysterical people project their hysteria onto others and rant about them being "hysterical".

P.S. I think we are going to need a bigger plunger.

 

[muffin]

Trine Tsouderos, Chicago Tribune reporter POOR, BIASED REPORTING

I put three comments out on this article and none were posted. They were negative and stated that the reporter was biased and had a strong demeaning undercurrent. Apparently Trine doesn't want those negative comments out there for others to read. What a great reporter! I told her to go get a job at the CDC Marketing/PR department since she would do well there and had already gotten money from them for that fake award.

Trine: Stop writing anything on medicine or health. Stick to fashion or something that doesn't require real research and allows for bias.

 

[V99]

Oh no fashion is full of bias, look at how little they use red but love black. Maybe the subject of Milk has no bias? Any milk experts in the house.

 

[free at last]

Its not Hysterical if shes right though is it ? because the evidence isnt there YET does not make it a non possibillity. Some may argue there is a liitle circumstantial evidence there already, maybe enough to speak up early before the world waits for a time that it becomes too late.

If the price one pays is jumping the gun, i put it to everyone is that not the safest thing to be doing ? should we just do what the world always does with early research suggesting a potential threat, Global warming for example, also seen as hysteria by many, but we wont be saying that when the climate starts changing in a way that becomes unstoppable when the evidence is now staring us in the face. Will we ?

The threat of global extinction with a asteriod or comet strike is seen as ridiculouse by many, ( by many experts too ) yet so far in the last 20 years we saw comet shoemaker Levy strike the planet jupiter with such force ( all recorded by hubble ) that the scars left behind on the planet were as large as the planet earth, then another asteriod strike on july 19th 2009 leaving a scar as large as the pacific ocean, then just the last two weeks another asteriod impact recorded, though on this occassion no scar was seen possibly because the explosion happened high in the atmosphere.

Some scientists asked for funding to look for near earth asteriods, ones that are a potentiall threat, in some countrys they were denied that funding, yet jupiter has shown us in modern times that the threat is not only real, but possibly a disaster waiting to happen. All Hysteria possibly but what if its not, great gamble to be playing eh

4% Of the healthy population with XMRV will become 8% 16% and 32% as the years trickle by. So while some may think we have plenty of time to dither around and debate if a danger exists.

Some may argue, we may not have that time, and its safer to take steps now.

Even if one is wrong, at least steps were being taken before a situation arises that there will be no turning around, no quick fix.

Ok lets just do what the world does best wait untill the situation is so dire that were all up s ? ? ? creek, Just because some cant see, early action is preferable to no or little action, incase its seen as hysteria, The hysteria card has been played so many times, and often it can be our downfall, its certainly a way of saving money, But we will all pay the penalty if Judy is right.

A potential threat should always be treated as such. Its not hysteria if its looked at like concerned educated guessing, only others make it hysteria, when the danger doesnt pan out. with a see told you so approach. One day that lack of forsight will be our downfall, and mostly because of wishfull thinking and money. Mostly money
Im full of hysteria me, but not bothered the slightest by it.

 

[natasa778]

no worries Garcia, help is at hand

 

[Esther12]

Often hysterical people project their hysteria onto others and rant about them being "hysterical".

Equally, some hysterical people feel forced to claim others description of their hysetria is only a projection of the hysteria their mothers had inclucated due to a... too many layers now.

re the 'worse than Africa' stuff - that could be described as hysterical if there were no provisos or explanation provided in Mikovits e-mail. V99 mentioned that they thought Mikovits was talking about the numbers of people infected, rather than the overall impact. This would not be a hysterical claim, and it could well be that this is what Mikovits meant. We can't really judge fairly based only upon this article - but we can say that the WPI and Mikovits have been needlessly giving ammo to their opponents.

 

[jeffrez]

Often hysterical people project their hysteria onto others and rant about them being "hysterical".

P.S. I think we are going to need a bigger plunger.

And often they don't, too. I think with a Master's degree in Communication I'm well qualified to assess the rhetorical content of discourse appearing in a news article.

What are your qualifications for assessing discourse? Or is making childish plunger jokes the extent of your verbal and analytical ability?

 

[Roy S]

http://newsblogs.chicagotribune.com...hat-on-xmrv-and-chronic-fatigue-syndrome.html

 

[ukxmrv]

I guess it might help if anyone who does think Dr Mikovits comes across as "hysterical" to explain their feelings to others such as I myself who cannot see it? I have read the article.

Anyone care to explain why they think that "hysterical" would be an appropriate term to use?

Then maybe we might have some better understanding here. I ask this as a respectful way forward. It would help me to understand.

If it's not important or people don't feel comfortable please ignore.

 

[jeffrez]

I guess it might help if anyone who does think Dr Mikovits comes across as "hysterical" to explain their feelings to others such as I myself who cannot see it? I have read the article.

Anyone care to explain why they think that "hysterical" would be an appropriate term to use?

Then maybe we might have some better understanding here. I ask this as a respectful way forward. It would help me to understand.

If it's not important or people don't feel comfortable please ignore.

That's already been addressed. Within the framework of scientific inquiry, Mikovits' responses are inappropriate. She admits that herself, when she acknowledges that her participation in the autism conference to present unverified information could end her career.

The problem is that when we have a group of people who are not scientifically minded or trained and/or who are heavily emotionally invested in an outcome, we tend to see that group want to have their unfounded beliefs confirmed regardless of the truth. On the other hand, researchers and members of the CFS community with a more rigorous and analytical approach to the issue would prefer the truth to come out regardless of what it turns out to be.

The latter is a more responsible and useful approach from a scientific perspective, and premature, scientifically unfounded statements about "epidemics worse than AIDS in Africa" do not fit into that perspective. Statements and positions like that are rightly perceived as hysterical and alarmist.

Truth always helps everyone. Pushing an agenda consisting of unverified beliefs because you are emotionally invested in a particular outcome typically helps no one.

 

[redo]

And often they don't, too. I think with a Master's degree in Communication I'm well qualified to assess the rhetorical content of discourse appearing in a news article.

What are your qualifications for assessing discourse? Or is making childish plunger jokes the extent of your verbal and analytical ability?

I am not sure if I'd use the word hysterical, because it's so derogatory. But anyway, if this quote is not taken out of context (which I think it is), then I think you have some valid points. "Our continent will be like HIV Africa only worse!".

That said, the journalist has a history of misquoting (just google her name).

And I agree with you M.Kite that the discussion should remain on topic.

 

[V99]

This live chat sounds ok, but the way they talk about truth, and reactions of researchers and disease community, makes it sound strange.