XMRV Article in Chicago Tribune and other papers

[redo]

Freudian slip by Tsouderos

If you take a look at this quote, which many would argue is what's most harmful for our case:

(...) unless we do something now this could be the worst epidemic in U.S. history," she wrote. "Our continent will be like HIV Africa only worse!"

You can see the quote is broken up to the left and right of "she wrote". The left was in one context and the right in another.
The points the journalist put forward (for Mikovits), is not how Mikovits put it forward.

As I wrote in post 167, I think the journalist made up her mind about how to do the article when she saw that the infection was linked to atypical MS, FMS, CFS and autism.

And I think it's the last of those mentioned that made her do what she did.

What was this article about? Was it mostly about CFS or autism?

If you take a look at how the article is categorized you can see what the journalist thought.
You are here: ChicagoTribune.com>Collections>Autism

I think that says it all. The categorization may very well have been done subconsciously, like a Freudian slip.

If the article is harmful as it is is a different discussion. I think it's obvious that it is. But I think it's the journalist who's to blame, and not Mikovits.

Not really. Saying you have "no recourse" but to "play the autism card" and trying to create hysteria by mentioning AIDS epidemics doesn't seem very responsible from a scientific standpoint. If she keep acting like that she's going to discredit all of us.

And Mr. Kite, having a Master's degree in Communication I am a little disappointed that you don't see (or point out) that there's something very fishy about how this article is put together.

The journalist keeps referring to emails, and chunk of those are not emails to the journalist. She might like to have it seem that way, but they aren't. It's emails which have been forwarded to the journalist when she did research for her story.

A big difference between Mikovits and other doctors is that she, like I wrote earlier, responds to emails from people she can trust, people who she don't know, and people who she can't trust. And when she does so, emails are begin forwarded, and some come in the hands of a journalist who feels she got a good grip on autism, and doesn't mind doing some below-belt-punches to get her story (and points) out.

 

[natasa778]

Mr Kite, has it ever occurred to you that others here do understand what you are saying, but that they simply do not agree with you? Or is that too hard to comprehend?

 

[natasa778]

I know maybe she should lie, and downplay the seriousness of what she sees is happening, and do what the likes of Reeves and wessley would do.
If she thinks a situation could be that seriouse enough to make a statement like that, Than maybe shes actually trying to wake everybody up.

EXACTLY. I don't see what is so hard for people to understand about that simple point. Great rest of the post, too, thanks.

 

[V99]

Great posts redo & natasa778, could not agree more.

I know i have said this before, but the Aids comparison, I feel sure, must be to do with the number of those who could be infected. We already know prostate cancer has an association, and that does kill people. CFS has been inadequately researched, but we know some people do die. There are a lot of questions that need working out on this one, and i'm sure one of them will if people with HIV or HIV/ AIDS have XMRV, does this accelerate the disease. Also, if CFS patients have this, can they pass it onto to men who then go on to develop prostate cancer, or do they catch this later, is that possible as the strains are different.

 

[free at last]

I know! I think this sort of rhetoric drives people away rather than persuading them of the validity of our cause.

There was a man called Barabbas. He was a loud-mouthed rabble-rouser who stood up against some minor injustices like crucifying people and feeding them to lions. Crowds cheered him, followed him and even stood and demanded his release one day in Jerusalem, instead of that sensible bloke, Jesus, who said there was a better way. As we all know, it was Jesus who went to the cross while Barabbas was freed to keep ranting and rabble-rousing. End result? Jerusalem was totally destroyed not thirty years later, the temple raised to the ground and the Jewish cause abandoned.

It feels like that to me now. The more she shouts, the more she insults, the more likely her work will fall into ruin and her work will lie in the science rubble heap.

I do see your Point, But certainly hope your wrong, also hope things have moved on a little since the days of superstition and nailing people to a cross, at least in the western world. Those that want to see hysteria, rather than a very urgent warning, will pick holes no matter what is said. what a state to have to cross check everything that one says incase its taken out of context. Its about time people can tell it how it might actually be, without constantly worrying is that going too far, or will it be taken out of context.

I agree many will be waiting in the wings just to do that dirty deed. But those are likely the people that want to see her fall, no matter how carefull her statements are considered. But i do agree some will use this against her. Its the nature of the game isnt it. I still think what she said could actually happen. And if thats so. we now have fair warning. people can make of it what they choose. At least someone has the courage to give Fair warning. while most will worry more about there careers. Thats another reason i see a different breed in her. and one that should still be supported. even if shes playing with fire. Often we dont like what we hear, but those warnings can sometimes be the most powerful. and most in need of being said. i guess many will not agree with that through worry. But i worry too. im with you on that Martlet

 

[free at last]

Many thanks for that Alex, You certainly know your stuff, And i feel the figures speak for themselves dont they. I have to pop out i will re read this when i get back, i have also just woke up, so a bit groggy taking it all in. But quickly im also interested in a best guess of how the say 5% figure might actually jump in the next lets say 30 years. I know no one can tell for sure, but some math could also be applied to that question i feel.
Cheers Alex

 

[natasa778]

If judy M is concerned, and im sorry i trust her more than any other goverment agencies, i belive for once ( just for once ) shes actually playing it straight, Havent the ME / CFS community hoped for someone of her standing to come along and do some proper reasearch, and tell it straight.

Well when someone does, this is what she gets, its not enough to be fighting the complacent goverments and complacent scientists over this. But to see some that shes actually fighting for, stand up and question her, must be quite hurtful. And i wouldnt blame her if she just got out of it right here and now.

I for one support her all the way. If shes wrong then so be it. Yes mistakes can and do happen. But just for once at least we know she actually cares. Actually gives a damm. And as far as i can tell, can be trusted. and really is on the side of the sick. And common sense

If we lose her, we are possibly going back to the days of reeves and Wessley Or more just like them

Sometimes we dont know what we have untill we have lost it. I said it before ill say it again

for her, and for us, to help right the wrongs of the disgraceful past, i hope shes right, I hope xmrv is the smoking gun. and i hope at last we have found a true warrior. because untill she came along we had nothing. Thanks Judy and Annette if your wrong then i still support you. Because at least you really cared and tried your best, Following ones heart is almost seen as a weakness on this forum. Well i think its a strength, that will one day lead to a cure, Proud to be emotional, sometimes thats all you have left. The intellectuals can pick at that if they choose. But thats there weakness and confusion. Im not confused at all.

free at last, can I shower you with flowers for saying that?

 

[alex3619]

Hi free at last

This issue cannot be answered with the data I am aware of. I can give answers but they are as likely to be bogus as not. We simply don't have enough data.

The real issue is: how many years does it take for the virus to double in prevalence (although real epidemic growth curves aren't this simple, we can use this as an early approximate imo). If we presume ten years, and if it has reached 10% prevalence, then by 2020 we will see one fifth of the world's population infected.

If we presume that it is currently five percent prevalence, and doubles every five years, then in 2020 we will also see one fifth of the world's population infected.

If the current figure is five percent prevalence, but it doubles every twenty years, then we wont see a fifth of the world's populatin infected until 2050, which gives us a lot more time to do research before the world can no longer cope.

Any figure of this type also cannot predict what the prevalence of resistance or immunity to XMRV might be. Maybe this is as bad as it gets, its already expanded to maximum prevalence because everyone else is immune. I tend to doubt that though. On the other hand, in evolutionary terms this virus pretty much swept through the world's entire mouse population, and only those with immunity were spared. That is why mice are now immune. I would expect immunity rates to be very low until this thing has run its course and killed everyone else off.

I still think we can stop this virus dead with a vaccine. It won't spread, and then the world can look to a cure. However, I do worry that once they can stop the spread the imperative to find answers will decline and research budgest will be slashed.

So, back to spread. If we use really dodgy data (from the CDC) and ignore contraindications and inconsistencies in data sets etc, then it could arguably be said that XMRV doubles every four years or so (from memory, I need to go back and recheck some info), but I am almost certain this is wrong and way too high. At a guess, and this is only a guess, I would expect to see a doubling every ten to twenty - still scary, but not immediately catastrophic.

What can be said is that CFS, autism and MS might be on an epidemic growth curve. This would mean that at some point prevalence will reach a critical mass and the growth rate will maximize, only tapering off when nearly everyone who can be infected, is infected. Nobody knows when that might be, or even if it could even happen, which is another reason for urgent medical research. It may have already started, we know that little about what is going on, a consequence of decades of medical and government negligence on this issue, in combination with a multiple year lag time between infection and illness, and between illness and diagnosis. What I can see is this: an epidemic growth curve will slowly rise until enough people are infected that the incidence of new cases goes critical, rising very very sharply. We must stop it before this happens. Are there any epidemiologists wathcing these posts? Maybe someone could comment who has more knowledge of this than I do?

There are complicating factors here though. Is autism really on the rise, or are we just much better at detecting and reporting it (I tend to doubt this but the question needs to be asked). The same goes for MS, and is even more relevant with CFS. This is because dodgy diagnostic criteria have massively inflated the number of people with CFS. So many people are being diagnosed with new criteria that we can't really compare new with old data unless researchers are very very careful, so we can't be sure of the growth curve at all.

Personally, I think it would be interesting to do a nation by nation prevalence study. If we find some region of the world that is MUCH more infected than everywhere else, we will have a place to look for the first jump to humans, an indication of growth rates plus some very long term patients to study. Of course there is the risk that all this might show is a region with people who have very low genetic resistance to XMRV, but that could tell us something too.

There is also the issue that XMRV might turn out to be a minor player in these disorders, we may be tracking the wrong virus. It is too soon to tell. Current data indicates that XMRV might only be responsible for about a third of most of these disease cases, but this is very imprecise and anecdotal information. If we are really really lucky XMRV might be the first innocuous virus of its kind, and we are again back to tracking the wrong virus. I would much rather CFS and ME weren't caused by a retrovirus!

Please be aware, however, that it is entirely possible that XMRV has been in the human population for centuries. That would tend to imply that either most people are very resistant, or the transmission rate is so low that it might double its prevalence over decades or centuries. In which case the current prevalence will not rise much in our lifetimes.

I am off to look at older CFS prevalence rates, perhaps have a look at Oslers Web again and see what Cheney had to say when he was looking into this. Maybe that can shed some light on the issue.

Bye
Alex

Many thanks for that Alex, You certainly know your stuff, And i feel the figures speak for themselves dont they. I have to pop out i will re read this when i get back, i have also just woke up, so a bit groggy taking it all in. But quickly im also interested in a best guess of how the say 5% figure might actually jump in the next lets say 30 years. I know no one can tell for sure, but some math could also be applied to that question i feel.
Cheers Alex

 

[alex3619]

Hi

One more point on XMRV prevalence growth. There have to be repositories of blood samples somewhere that are sufficiently well stored that we have an historical blood record. If we can find the prevalence of XMRV in these samples, we can plot a projected growth curve.

One of the problems with using CFS or autism or other disease data to plot growth is that this is not a direct measure of XMRV, and at this point we have no solid evidence of a direct causal link. Because of onset lag time, the real prevalence of XMRV will be higher than predicted by the incidence of new disease cases. We need direct large scale measuring of XMRV, both in the population and in stored blood samples.

Bye
Alex

 

[lululowry]

But we do know the annual death rate from all causes and, for the most part, we do know those causes. I think it a travesty to liken ME/CFS in the USA to AIDS in Africa.

We do not know if what connection there is between ME/CFS and heart disease or cancer, the two leading causes of death. Many people with ME/CFS have heart conditions. There is a connection between XMRV and cancer.

Someone who dies of AIDS actually dies of cancer, pneumonia, etc. We understand that AIDS is the underlying condition that allowed the cancer or infection to run rampant in its victim.

If you look at a site like this: http://www.blueribboncampaignforme.org/ME_CFS_Memorial.html
you'll notice that a lot of people with ME/CFS die early deaths. We do not know if the cancer, massive coronaries and overwhelming infections that many people with ME/CFS die from are connected to ME/CFS.

 

[natasa778]

There are complicating factors here though. Is autism really on the rise, or are we just much better at detecting and reporting it (I tend to doubt this but the question needs to be asked).

California records show an increase in prevalence (over the last 20 years I think, not sure of the exact timespan) of over 600%.

Only about 50-60% of those cases can be attributed to earlier age of diagnosis etc, so at again at least 500% of real increase. These data refer to full blown autism, not pdd-nos and aspergers, so the argument of better diagnosis does not hold water here as those kids do not get missed by any means! also the other usual argument of 'they were just diagnosed as mental retardation in the past' also does not hold water here as the rates of MR cases stayed more or less the same during that period (ie if the diagnostic labels have simply changed from MR to autism there would have been a sharp drop in MR cases, which is not the case). I don't have the paper handy, it was by MIND institute, published last year.
it may be linked somewhere in here, which btw gives a good background to the politics behind the prevalence rates mess http://www.ageofautism.com/2010/01/mark-blaxill-lies-damned-lies-and-cdc-autism-statistics.html (btw note the CDC sitting on new shocking data for 3 years, before releasing it on a Friday afternoon before Xmas)

 

[natasa778]

Alex, also see this analysis of North Dakota data:

http://www.ageofautism.com/2009/09/autism-not-really-on-the-rise-967-impossible.html#more

Today, we know autism impacts 1 in 100 kids. Based on the numbers from North Dakota, that’s 33 times more kids than in 1987.
...The North Dakota study, the one above that produced 3.3 kids per 10,000 with autism, used the DSM-III criteria for autism. Today, we use the DSM-IV criteria for autism. Is DSM-IV radically more expansive than DSM-III? Let me ask a different question: was DSM-III so narrow as to miss 96.7% of the kids who today have an autism diagnosis? ...
(well actually the statistic of 100 is at least 4 years old now, so it could be higher today)

 

[Martlet]

I do see your Point, But certainly hope your wrong, also hope things have moved on a little since the days of superstition and nailing people to a cross, at least in the western world.

I don't think so, Free. People still want their champions to shout a good shout. I live in a county where the soil is rich with the blood of dead soldiers who followed a bellowing champion. People don't change. They only dress differently!

Its the nature of the game isnt it. I still think what she said could actually happen. And if thats so. we now have fair warning. people can make of it what they choose. At least someone has the courage to give Fair warning. while most will worry more about there careers.

What would people have done? Labs have tried to reproduce her results but failed. When they fail, she says they are doing things wrong. Are we suggesting that scientists throughout the world should simply take her word for it?

 

[bluebell]

Off topic, but the MIND center is awesome. My son was seen there by a (now retired) neurologist who, quite against type, was an amazing and sweet guy. They are extremely well funded and I would love to see them looking into this connection (if they aren't already on board). My son does not have autism per se, but he has sensory issues and low muscle tone, etc. etc..

Another thing to remember about Mikovits is that she is not a tenured professor at a university; she serves at the pleasure of the parents of woman who has suffered terribly with this disease. We don't know if PR is in her job description, but, even if it's not, she is coming from a different place than the pure academic types. She just sounds like most people who have read Osler's Web! I think it's a little weird that there is so much animosity directed at her for being uppity or whatever, when most of us wish we were able to be louder and more uppity. There is a whiff of sexism in most of that criticism - makes my nose twitch;-).

 

[V99]

Are we suggesting that scientists throughout the world should simply take her word for it?

Fair comment, but they don't need to take her word for, they could just use the same method. Then they would know.

 

[Martlet]

We do not know if what connection there is between ME/CFS and heart disease or cancer, the two leading causes of death. Many people with ME/CFS have heart conditions. There is a connection between XMRV and cancer.

XMRV has been found in the tumour cells of a particularly aggressive form of prostate cancer. It has not been proven to be causative. I have a special stake in this, given that my brother-in-law, whose funeral is tomorrow, died quite young of just such a cancer. Don't you think we would have loved it if, during his three-year battle for life (yes, in excruciating bone pain and unable to walk, he still wanted to live) someone had said "This is caused by XMRV so along with your chemo, we are putting you on antiretroviral drugs." The bottom line is that they simply do not know.

If you look at a site like this: http://www.blueribboncampaignforme.org/ME_CFS_Memorial.html
you'll notice that a lot of people with ME/CFS die early deaths. We do not know if the cancer, massive coronaries and overwhelming infections that many people with ME/CFS die from are connected to ME/CFS.

Exactly. We don't know, and looking through that list tells me nothing useful.

 

[Cort]

Well, some people are coming to our rescue, thank god. But the fact that CDC and NIH (and NCI) are not funding any extramural research into XMRV and ME is criminal- and is just a subset of the fundamental problem that we get just $5M in a very good year from NIH and continue to have garbage Reeves criteria psychogenic studies coming out of CDC.

A lot of study needs to be done on DeFretias RV like yesterday, or more accurately 20 years ago. I can understand that neither WPI nor anyone else wants to touch this with a 10 foot pole considering what CDC and NIH did to destroy her reputation, not to mention the tremendous opposition they're under for having the temerity to find (even in the august company of Ruscetti and Silverman) a recognized human retrovirus in ME.

Once an XMRV confirmation study comes out I feel we really need to push hard for funding on DeFreitas RV too.

There's a strong belief that DeFreitas was done in but my take on it after reading Osler's Web and another publication was that the work simply failed. Dr. DeFreitas was unable to distinguish between well and CFS patients at the CDC and even more importantly, when the CAA gave her an opportunity to distinguish between healthy controls and doctor Bell's patients - the patients she'd originally worked on - she failed to do that as well. (Even though Hilary Johnson had that information she failed to put it in her book - it apparently didn't fit with her us against them scenario)

Neither the CDC, nor a Texas lab whose name escapes me, or a pharmaceutical firm in California that had an agreement with Wistar to produce her test, nor a group of CFS researchers, nor a Japanese group, nor the NC Foundation funded study 10 or 15 years later were able to find any evidence of that kind of retrovirus in CFS patients.

I think she just failed, unfortunately. I would note the she and Wistar also made a big splash with a similar finding in multiple sclerosis patients that was later disproved as well. This was all from a researcher that everyone agreed was quite diligent and responsible - its a tough, tough field.

 

[Esther12]

I contacted the reporter, and she has rather kindly agreed to try to get the full e-mail Mikovits sent her put on-line as an attachment or supplement to the original article. If it goes ahead, it should be available on Monday or Tuesday, and then we'll be able to see exactly what was said.

She also mentioned that her autism articles, which some here had complained about, had won a national health reporting award.

 

[Martlet]

I think she just failed, unfortunately. I would note the she and Wistar also made a big splash with a similar finding in multiple sclerosis patients that was later disproved as well. This was all from a researcher that everyone agreed was quite diligent and responsible - its a tough, tough field.

It is a tough field, but given that people's very lives depend on accurate research, it has to be a tough field.

I was among those so excited about DeFreitas' work. If we'd had an internet then, I think it would have been just as abuzz with hope as it is now, but I have a "been there, done that" feeling, only worse. After we had all clamoured for DeFreitas to be taken seriously, I found that we were being taken less seriously, and I am afraid that this will only worsen the louder we shout about something else that is just as unproven. Not to mention the loss of hope that comes each time something promising fails to deliver.

 

[Cort]

Well yes, she sounds good to our ears, but it is not us she needs to appeal to. If we could fund the research, we would already be doing it. What Mikovits has to do is to get agencies and individuals to sign on to her views and I really don't believe this is the way to do it. AIDS was different. People with AIDS looked sick. Really sick. They had kaposi's sarcoma, very visibly. They had visible fungal infections. When they marched, crawled or were wheeled to their protests, the general public could see that these were very sick people indeed. And they were dying.

I think this is very apt. Dr. Mikovits is saying words that some patients love to hear but who she really needs to get on board is the research establishment and I think AIDS statement was a horrible mistake with regards that Almost 2 million people in Africa have died from AIDS - over 25 million people have it. (Only about 25,000 people in the US have died from HIV - and yet look how its perceived here.). It doesn't help that her audience in the research world right now is made up of retrovirologists - people who are intimately aware of the cost of AIDS. Ouch.... she