XMRV Article in Chicago Tribune and other papers

[serenity]

Serenity my comments were not aimed at you.

oops my fault Kati i'm sorry it was Rebecca who was askin me questions.
i will go back & edit. sorry!

 

[free at last]

All though some are concerned about damage caused by comparison with Aids, At last i think the real concern is coming to light. Infact im wondering how this concern could have been relayed by Judy, without similair worries about damage control.

Even if Afica and aids wasnt mentioned. Just mentioning doomsday scenarios, would probably also not go down too well either i dont think. Because that also speaks of hysteria without any firm proof. But as has been pointed out. Sometimes one has to lean on the side of caution and safety first. Even if sometime in the future its shown to have been premature, or even just plain wrong. Not to do so is irresponsible beyond belief.

I think a good comparison can be made with the UKs dealing with Swine flu. They tried to prepare for a huge deadly pandemic with vaccines and drugs. But it just didnt happen. So was they wrong to prepare for a possible scenario that could have killed millions. In my opinion no they was not. The very people who blast the goverment for over reacting, and spending millions on vaccines, with a flu pandemic that ( as of now ? ) hasnt happened. would have been up in arms if nothing was done when we had the chance to prepare. Bit of a no win situation really isnt it. Maybe thats how Judy feels. Yes she could have kept aids and afica out of it. But the message would still have been the same. And most likely still seen by some as unfounded hysteria. And yes most likely even by scientists that should no better. Pr damage control isnt easy when something important but unprovable ( yet ) is needed to be said is it ? She sets herself up just by telling the truth does Judy M
One reason i trust her
Just a thought

 

[V99]

I do like you just a thought, free at last. Makes a lot of sense.

Those scientists that would gleefully see this as hysteria, view CFS as hysteria. It won't change their minds until a postive study comes out.

 

[rebecca1995]

...Are you saying that members here in this forum who would prefer to see a more professional demeanor on the part of our advocates have a vested interest in keeping things the way they are? Please elaborate.

Researchers who’ve built their careers upon claims that ME/CFS is psychogenic have an interest in undermining the association between the illness and XMRV; Reeves, Wessely and van Kuppeveld were among the first to attack Dr. Mikovits.

As to forum members who tear her down, I’m not a mind reader and refuse to speculate about motivations.

I will point out that members have called Dr. Mikovits “hysterical” and said that "her work will fall into ruin and her work will lie in the science rubble heap”. I doubt that these types of inflammatory remarks are the best way to effect a “more professional demeanor” in Dr. M.--but that’s just my opinion.

 

[DysautonomiaXMRV]

“will fall into ruin and her work will lie in the science rubble heap”

Who said that, Simon Wessely?

It looks like Dr Mikovits may probably get a Nobel prize for discovering XMRV in just 18 months (when the rest of the worlds scientists failed for over 40 years).

I'd not think it was therefore likely someone would 'fall into ruin' being such an influencial scientist. Still, each to their own.

If 'falling on the rubble heap' means a person triggers world wide retroviral research that saves lives (Prostate cancer), that's a hell of a fall from grace if their ever was one!

 

[Martlet]

My apologies to Dys. I wrote a post I regret, the only mitigation being that I am (understandably) a tad emotional at the moment.

 

[justinreilly]

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.

Cort,

when you say Hillary didn't put it in the book do you mean both the CDC and CAA studies you mention or just the CAA study. In Osler's Web DeFreitas failed the study where she and others tried to distinguish the patients. Her work on this study wasn't done at CDC.

If she didn't include important info like this I am very disappointed she did not as we need all the facts.

According to Osler's Web, Chiron (the pharma co.), CDC and that independent lab all found evidence of the RV, but as time went on Chiron and CDC couldn't replicate their early success. Chiron had a secret meeting with NIH's Straus and others where, according to I believe it was Komoroff who was there, Straus torpedoed Chiron's interest by telling them that both "CFS" and DeFreitas' RV were a bunch of BS.

CDC then published their one negative study over and over (while it isn't even that typical to publish negative studies).

Gow and Behan the Scots agreed at the meeting at CDC about their negative results that they needed to do their study again because they used replinase instead of taq-ploymerase in their tests- which DeFreitas said she had told them before they did their study that using taq-p specifically was necessary.

Haven't read about the other studies.

 

[justinreilly]

now

That last study was not in the book. The book ended basically ended with both Dr. Martin and Herst labs failing miserably to distinguish CFS patients in a double blinded study set up by the CFIDS Association. Dr. DeFreitas was the third leg of the study but she had been in unable to complete her end because a hurricane wiped out her lab in Miami. That's where the book, published three or four years later ends. But I found a CFIDS Association newsletter that indicated that six months later or so Dr. DeFreitas did complete her end of the study and that she too was unable to determine who had CFS and who didn't. That was when the CAA, which had been her sole support, stop funding her. They also stopped funding Dr. Martin. They continued funding Dr. Grossberg for years in his search for a retrovirus but that never panned out either. I think its Ironic that the only group that ever funded Dr. DeFreitas search for retrovirus in CFS - and they did it for years - got so slammed afterward. Its kind of surreal to me

The results of DeFreitas' leg was definitely in OW. I remember it clearly. I will try to find it if you would like.

 

[bluebell]

I do feel that Dr. Mikovits is held to a different standard than other researchers. I believe the meme that she is angry and inappropriate is being perpetuated by those with a vested interest in preserving the status quo.

The more I see, the more I believe this is the case. It just doesn't make sense that there are people who have done us intentional harm, "advocates" who (while I'm sure very professional) have done very little to help us, quacks bleeding our thin wallets dry...and yet all this - it really seems like anger - directed at one of the most unlikely targets possible. It seems like people like to go the parade of horribles route and suggest that she has, by calling the situation as she sees it, authored her own and the ME community's collective doom. This is patently absurd.

Another thing to think about is that she probably knows some things that she has, despite her hysterical and unprofessional nature (j/k), managed to keep quiet. Her cockiness is hugely reassuring to me. Anyone who knows someone with profound autism will understand, if WPI has found a solid link, that the Africa comment was not particularly inappropriate. The agony that condition causes in families cannot be overstated. Agony is agony, whether it causes death or not...as we all know.

 

[justinreilly]

The more I see, the more I believe this is the case. It just doesn't make sense that there are people who have done us intentional harm, "advocates" who (while I'm sure very professional) have done very little to help us, quacks bleeding our thin wallets dry...and yet all this - it really seems like anger - directed at one of the most unlikely targets possible. It seems like people like to go the parade of horribles route and suggest that she has, by calling the situation as she sees it, authored her own and the ME community's collective doom. This is patently absurd.

Another thing to think about is that she probably knows some things that she has, despite her hysterical and unprofessional nature (j/k), managed to keep quiet. Her cockiness is hugely reassuring to me. Anyone who knows someone with profound autism will understand, if WPI has found a solid link, that the Africa comment was not particularly inappropriate. The agony that condition causes in families cannot be overstated. Agony is agony, whether it causes death or not...as we all know.

The examples that you and Rebecca cite- CAA (I am infering McCleary and Vernon) and Dr. Klimas are women, so they don't support the charge of sexism against Dr. M. I do think some of Dr. M's statements are probably at least a stretch and are counterproductive. (She has also done more than almost any other scientist for us so overall she gets much luv from me).

 

[serenity]

sorry to hear about your loss Martlet.

 

[bluebell]

The examples that you and Rebecca cite- CAA (I am infering McCleary and Vernon) and Dr. Klimas are women, so they don't support the charge of sexism against Dr. M. I do think some of Dr. M's statements are probably at least a stretch and are counterproductive. (She has also done more than almost any other scientist for us so overall she gets much luv from me).

Some of the most sexist people I know are women, but point taken. I didn't quote anyone and was just speaking in general terms. We could add ERV in there, but I don't think she actually qualifies;-). It's not that I think Mikovits is perfect - I just don't get the obsession over her manner, when the safety net of being right will make all of these supposed flaws into the endearing quirks of a Nobel Prize winner (as the other poster pointed out). If she is wrong no one will care - how could the research money be reduced, how could anyone treat us worse than they already do?

@Cort - In my younger days I used to work as a server at a cafe frequented by bankers during the day and as a cocktail waitress in a nearby bar at night. I performed the same functions at both jobs and frequently served the same customers. My manner, however, was different, because the atmosphere was. The atmosphere at WPI must be very different from the other places Mikovits has worked.

 

[justinreilly]

NIH's Straus: The culprit is naps, emotions and failure to exercise, not a retrovirus

The results of DeFreitas' leg was definitely in OW. I remember it clearly. I will try to find it if you would like.

It's mentioned on p.679 of OW.

Osle's Web concludes on p.684 with a talk given by Stephen Straus at the American College of Rheumatology in 1994:

He cited, in addition, thirty year old medical papers that pinned recovery speed among mono and influenza victims to "the emotional state of the patient." "If we had been aware of these studies," he said, "some of us might not have tried to reinvent the wheel" by attempting to assign the disease a virological cause...

[Retroviral causation] "doesn't make any sense because ...retroviral infection... includes progressive hematologic, immunologic and neurologic deficits in one mix or another, and those aren't really prominent features of chronic fatigue syndrome."...

[Re: DeFreitas' work] "there's really no good scientific merit to it." He further posited, "There is no current evidence for chronic infection in CFS. Therefore, broad screening of CFS patients for infections is completely unwarranted. Your patients may demand exotic screenings," he added, "but it's only confusing."...

A significant portion of the symptomology of the disease, he commented, was a result of "poor sleep hygiene" and failure to exercise: "Patients exacerbate things because they take multiple naps during the day and break up their rest periods and sleep periods. They stay in bed a lot...

The scientist was roundly applauded, with at least one audience member shouting, "hear, hear!"

[emphasis added]

 

[Snow Leopard]

If you are a researcher, and you see that CFS Europeans are testing positive for XMRV, ASD children are testing positive for XMRV, would you sit back and do nothing? Seriously?

Science in reality is messy. If I was the researcher in question I would definitely not talk about as if it was established fact until my research was published in a reputable journal. Not just because it would destroy my credibility, but simply that preliminary research simply doesn't give you that degree of certainty.

In principle, there are an almost infinite number of hypothesis to explain any given set of data. Correlation is not causation, it isn't until a plausible mechanism is shown to have the effect that the link can be considered highly likely to be real.

 

[Martlet]

sorry to hear about your loss Martlet.

Thanks, Serenity. It was expected but it doesn't really make it any easier. He had a perfectly normal PSA test then, only months later, his PSA was sky high and he was found to have metastatic prostate cancer that had gone to his spine and ribs. Several rounds of chemo and surgeries later, he was left unable to walk and was in incredible pain, yet he was an incredible man who put up a good fight because he wanted to see his youngest son graduate. Sadly, he died just a couple of weeks before this will happen.

 

[natasa778]

Correlation is not causation, it isn't until a plausible mechanism is shown to have the effect that the link can be considered highly likely to be real.

Andrew, when it comes to autism the possible mechanisms are already very well known! (though unfortunately not widely discussed or publicly admitted by so called “experts”). No need to guess.

This is thanks to already known pathological mechanisms through which another retrovirus, HIV, causes neurodevelopmental symptoms identical to idiopathic autism in 1/3 to a half of HIV-positive children.

Some of those are listed here, but there are many more
http://autismcalciumchannelopathy.com/HIV_and_Autism.html

There is a striking correlation between neurodevelopmental symptoms found in children infected with HIV retrovirus and those children diagnosed with idiopathic Autism Spectrum Disorders (of still unknown aetiology). Furthermore, the underlying biomedical pathologies found in HIV-positive children are in many ways identical to biomedical pathologies found in children diagnosed with ‘common’ idiopathic autism.

The mechanisms of HIV-injury on host cellular systems have been identified in recent years and these pathologies often very closely match those found in autism, such as chronic microglial activation, cellular calcium overload, oxidative stress, vasoconstriction, glutathione depletion, chronic inflammation of gastrointestinal and central and peripheral nervous systems etc (see list below).

Many treatment agents used in treating autism, whether with studied and proven beneficial effects or anecdotal reports of reducing autistic symptoms in some affected individuals, have antiretroviral mode of action and have been shown to inhibit the retroviral activity and/or reduce HIV viral load.


Neurodevelopmental findings in children infected with HIV retrovirus

Impairments in language, especially expressive language, behavioural symptoms: irritability, lack of social skills, repetitive actions (rocking etc).

Severity of autistic symptoms in HIV positive children is correlated to levels of retroviral load/replication, as well as CD4+ levels. Symptoms of autism – deficits in language, behaviour and social skills – in HIV infected children often recover upon administration of single or combination antiretroviral treatments, at least to some degree. Sometimes recovery is complete, with total remission of autistic symptoms. ...

 

[Mithriel]

The AIDS epidemic in Africa has been made massively worse by denial and disinformation from governments, particularly in South Africa where the official view was that HIV was not involved.

HIV also removes the productive part of the workforce in the same way ME/CFS does.

The history of science is littered with jealousies and controversies. It is a myth that it is an ordered process where everyone simply follows the evidence. Gallo and the discovery of HIV is a case in point.

The world of stem cell research is being rocked with allegations of peer review failures and the "old guard" preventing new types of research being funded.

Mithriel

There are

 

[V99]

The Chicago article has made the LA Times.
http://www.latimes.com/news/health/la-he-chronic-fatigue-20100614,3,5214211.story

Seattle Times
http://seattletimes.nwsource.com/text/2012093566.html

 

[redo]

The Chicago article has made the LA Times.
http://www.latimes.com/news/health/la-he-chronic-fatigue-20100614,3,5214211.story

Seattle Times
http://seattletimes.nwsource.com/text/2012093566.html

About the LA reprint:
The emails mentioned in the tribune, which I suspected had been sent as part of the interview have been labeled as part of the interview.
The emails with the worst quotations, which I suspected had quotes taken (with purpose) out of context has been removed.

The article looks totally different with just small changes.

I'd really like to see which context the quotes from the original article was taken from. I'll repeat what I wrote earlier, if Mikovits wanted to send out messages such as "Our continent will be like HIV Africa only worse!" without a specific context, she could have done so in other ways than to write it to Trine.

 

[V99]

About the LA reprint:
The emails mentioned in the tribune, which I suspected had been sent as part of the interview have been labeled as part of the interview.
The emails with the worst quotations, which I suspected had text taken (with purpose) out of context has been removed.

The article looks totally different with just small changes.

I'd really like to see which context the quotes from the original article was taken from. I'll repeat what I wrote earlier, if Mikovits wanted to send out messages such as "Our continent will be like HIV Africa only worse!" without a specific context, she could have done so in other ways than to write it to Trine.

Well spotted Sherlock redo.

Perhaps they were not up to the editorial policy of the LA Times?