XMRV Article in Chicago Tribune and other papers

serenity

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as i say i am pro-Mikovits, i am anti freak out tho - haha!~
i think AIDS Africa & BIGGEST epidemic & things like that are what are freaking me out.
 

acer2000

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Honestly, a successful replication study would shut everyone up and get them back to work. We really need one soon. :-/
 

Forbin

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Great moments in science reportage…

On January 13th, 1920, The New York Times ran a front page editorial ridiculing and misunderstanding the theories of Dr. Robert Goddard, the scientific acumen of Jules Verne and, for good measure, Newton’s Third Law of Motion.

[Oh, and they took a swipe at Albert Einstein and his colleagues, too.]

- - -​

After the rocket quits our air and really starts on its long journey its flight would neither be accelerated nor maintained by the proposed explosion of the charges. To claim that it would be is to deny a fundamental law of dynamics, and only Dr. Einstein and his chosen dozen, so few and fit, are licensed do that.

That Dr. Goddard, with his “chair” in Clark College and the countenancing of The Smithsonian Institution, does not know the relation of action and reaction, and of the need to have something better than a vacuum against which to react – to say that would be absurd. Of course, he only seems to lack the knowledge ladled out daily in high schools.

As, it happens, Jules Verne, who also knew a thing or two in assorted sciences, deliberately seemed to make the same mistake that Professor Goddard seems to make. For the Frenchman, having to get his travelers to or toward the moon into the desperate fix of riding a tiny satellite to the satellite, saved them from circling it forever by means of explosion, rocket fashion, where an explosion would not have had in the slightest degree the effect of releasing them from their dreadful slavery. This was one of Verne’s few scientific slips, or else it was a deliberate step aside from scientific accuracy, pardonable enough in him as a romancer, but its like is not so easily explained when made by a savant who isn’t writing a novel of adventure.


- - -​

The New York Times retracted the editorial on July 17th 1969, as Apollo 11 was heading for the moon.
 

Mithriel

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If XMRV is validated as a cause of CFS and the whole epidemic becomes public knowledge, how we are treated will depend on how the media decide to tell it.

Any input from the scientists involved will be swamped by how the papers choose to tell the story.

In the past, the media have decided to portray us as "yuppy flu" and neurotic women - "middle aged women with psychosexual problems" one newspaper editor called us. If they had decided to see us as victims of an uncaring medical profession we might have done better.

Mithriel
 

natasa778

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Thanks for that post Forbin!! :D:tear::(:Retro mad: it would be nice to know how Goddard did after that in terms of funding for his research?


"Great ideas often receive violent opposition from mediocre minds" - Einstein
 

Wonko

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Great moments in science reportage

On January 13th, 1920, The New York Times ran a front page editorial ridiculing and misunderstanding the theories of Dr. Robert Goddard, the scientific acumen of Jules Verne and, for good measure, Newtons Third Law of Motion.

[Oh, and they took a swipe at Albert Einstein and his colleagues, too.]

- - -​

After the rocket quits our air and really starts on its long journey its flight would neither be accelerated nor maintained by the proposed explosion of the charges. To claim that it would be is to deny a fundamental law of dynamics, and only Dr. Einstein and his chosen dozen, so few and fit, are licensed do that.

That Dr. Goddard, with his chair in Clark College and the countenancing of The Smithsonian Institution, does not know the relation of action and reaction, and of the need to have something better than a vacuum against which to react to say that would be absurd. Of course, he only seems to lack the knowledge ladled out daily in high schools.

As, it happens, Jules Verne, who also knew a thing or two in assorted sciences, deliberately seemed to make the same mistake that Professor Goddard seems to make. For the Frenchman, having to get his travelers to or toward the moon into the desperate fix of riding a tiny satellite to the satellite, saved them from circling it forever by means of explosion, rocket fashion, where an explosion would not have had in the slightest degree the effect of releasing them from their dreadful slavery. This was one of Vernes few scientific slips, or else it was a deliberate step aside from scientific accuracy, pardonable enough in him as a romancer, but its like is not so easily explained when made by a savant who isnt writing a novel of adventure.


- - -​

The New York Times retracted the editorial on July 17th 1969, as Apollo 11 was heading for the moon.
I dont know about anyone else but I dont have another 49 years
 

garcia

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If XMRV is validated as a cause of CFS and the whole epidemic becomes public knowledge, how we are treated will depend on how the media decide to tell it.

Any input from the scientists involved will be swamped by how the papers choose to tell the story.

In the past, the media have decided to portray us as "yuppy flu" and neurotic women - "middle aged women with psychosexual problems" one newspaper editor called us. If they had decided to see us as victims of an uncaring medical profession we might have done better.

Mithriel
Great post Mithriel. Couldn't have said it better.
 

garcia

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What perplexed me the most was that Coffin's about-face. We need more information about how and why his thinking has changed. I would not presume that this is due to fear of a single scientist from a small research institute. Mikovits has played in the big sand box before, they know her well enough. I think this shift goes deeper and there are things not being told to us yet.
Not sure if I would call it an about-face. Coffin uses the phrase "It's not impossible", which normally implies that the person attaches a very low probability to the event. Coffin was always a neutral third party, and still is. There is no about-face or shift.
 

alex3619

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Hi

Dr Barry Marshall has been my hero for a decade and a half. He totally deserved his share of the Nobel prize. I knew in the mid-90s that CFS needed someone similar, and now we appear to have them at the WPI - scientists betting on hard science, showing conviction, and willing to challenge dogma.

It is interesting to note that Dr Barry Marshall was under investigation at one point to see if he should lose his medical licence, according to one of my sources - he was "clearly" a crank. Does this sound like any doctors we know?

Any bets on how many years it will be before the WPI researcers win a Noblel prize if their results are validated? If they come up with a cure? Any guesses? I am putting my bid in for 2029, Nobel prizes take time to be awarded.

Bye
Alex

And ulcers: Remember this? In 1982, when H. pylori was discovered by Dr Marshall and Dr Warren, stress and lifestyle were considered the major causes of stomach and intestinal ulcers. And notice these unorthodox methods: Dr Marshall proved that H. pylori caused gastic inflammation by deliberately infecting himself with the bacterium. The Nobel citation praises the doctors for their tenacity, and willingness to challenge prevailing dogmas.
 

alex3619

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the worse epidemic we have ever seen?

Hi Serenity,

As someone who has the same opinion as Dr. Mikovits on this issue, I'll have a go at explaining the position. Please be aware that my response is heavily coloured by my own bias, there is little I can do about that except warn you.

This issue is being ignored. Dr. Mikovits statements represent a worst case scenario - not the most likely. She is emphasising the worst case to make the authorities sit up and take notice. Since the original paper she has seen results from family members of the XMRV cohort - lots of people with cancer and autism have XMRV in these families, way too many to be by chance (or so it appears, I would like to see hard data). Three cases of atypical MS have been identified (does anyone know if they have found more since that report?) and it is suspected to be behind some cases of Gulf War Syndrome and some cases of fibromyalgia. In other words, the picture we get of only something like half a percent of the population sick or disabled could be very very wrong ... and the incidence of new cases of autism and atypical MS is claimed to be on the rise (but I have not confirmed this myself). These diseases appear to be on an epidemic growth curve, which if it climbs to a critical mass could see the entire world population infected (remember, this is the worst not most likely case scenario). Added to this I suspect that many if not most cases of postcancer fatigue are actually XMRV, although this has not been investigated yet. If so, I wonder how high the prevalence of disabled XMRV patients will eventually be?

If the worst case is correct then perhaps about 2% of the worlds population (give or take a little) are sick or disabled. Somewhere between 6 to 10% carry the virus. Since HIV is something like 0.1% in the western world, this would make the problem 1000 times worse than HIV - and we regard HIV as a disaster. ME and CFS are only one aspect of this infection. The burden to society is higher than HIV as well, as most with HIV are able to work unless they develop AIDS. Many of us are disabled, perhaps 10% of us requiring a high level of care. Most of those will be too sick to use a computer, so aren't on these forums, though I suspect a few family members might be on here looking for answers.

On the PR side, might I add that if the powers that be get behind a vaccine it will probably take less than a year to develop. XMRV is not a complicated virus unlike HIV. But first we have to act, which means that someone with power or money or both has to commit to this bigtime.

IMO Judy Mikovits is just trying to get attention so that if the worst case scenario, or something close to it, is actually real, then can act before the problem becomes even bigger. If you think we will have a problem with excessive alarm now, what will happen if this scenario is real and twenty percent of the population is infected before we act? What about thirty percent? Forty? What about a quadrupling of disability prevalence? The sooner we know the truth, the sooner we can find a good source of action.

I am still hoping XMRV is innocuous, I just don't think there is much chance of that. Failing that, I am hoping that many are immune, or only a small percentage of the population is at risk of many of these diseases due to genetic predisposition. We will only know the truth of this when the research is done, and that only happens with funding ... and funding follows alarm.

Bye
Alex

PS Does anyone know if any pure MCS patients are XMRV positive?

i'm concerned, i have a watch & wait attitude over all this - but when & if XMRV turns out to be it, statements like "we will be like HIV Africa only worse" dont' really seem to be what i'd call helpful. please understand my concern, i'm pro Mikovits. but that is a pretty outrageous statement, isn't it? i really dont' want to be sent to leper island, & i can't see how a statement like that is good PR for us. hurry science along yes, but cause public chaos no. please.
so i'm worried, this worries me. she must be very tired. i am grateful to this lady, but is she losing perspective / control?
please understand this is a question, i am one of those who believe in my bones XMRV is sensible, i feel it - but... the worse epidemic we have ever seen? how can that be? how can i be that dangerous? no one i know has this.
if someone could explain, these claims seem over the top a bit? no?
i understand they are linking XMRV to lots of things & that she is sayin IF nothing is done but it still seems to be some very strong statements.
help! i dont' get it.
 

serenity

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thanks Alex, & all who answered. i've been reluctant to voice my fears because i dont' want to scare anyone - but let me talk for a moment about our worst case scenario. maybe i'm paranoid, but do you really think this society has come so far that we are past things like lynchings, hate crimes, holocausts, witch burnings, scarlet A's, stonings? i'm not so sure. i haven't encountered a lot of compassion. people dont' like sick people, they dont' like to deal with them & they certainly don't like the idea that they could get it. it would be nice to be treated as the victims we are, but will that happen? or will we be dragged from our homes & families to be quarantined?
ok, i said it all out loud. those are my fears. i'd love for someone to help me not feel that way, but something tells me we need to be a little careful here. the general public in my opinion are not nice, they certainly haven't been nice to us so far so i dont' know why anyone would think that would get any better once they find out they actually have something to fear from us.
 

jeffrez

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Mikovits isn't helping her case any by sounding so hysterical about "epidemics" and AIDS, imo. Saying she "has no recourse" but to "play the autism card," and then try to imply there is some kind of sexist gender-based bias going on among researchers also just makes her sound a little bit crazy.

There is a recourse: have someone replicate the findings. It's called science. Presenting unverified information at an autism conference along with that discredited autism doc doesn't sound like the course of action someone takes who is sure of their findings. It sounds like a last move of desperation to push a pet theory that no one can yet verify.
 

alex3619

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do you really think this society has come so far that we are past things like ...

Hi

The short anwer is no. However, three observations are important here. The first is the vaccine we can develop will allay much of the fear. The second is that this virus is actually hard to catch, its not like the flu. The third is so many are infected that mainstream society would collapse if it tried to quarantine everyone. Nobody could afford it, not in the current financial climate anyway. Dont forget that most of the infected are working at all kinds of jobs - many will be politicians. I don't doubt there will be some hate crimes, but then it is not much short of a hate crime to walk into some doctors or disability clerks offices at present. I have had this discussion elsewhere, and I think that it will go the same way as HIV AIDS did - fear and misunderstanding, some hate, then finally acceptance, understanding and funding for research and treatment. The really big question that could change this is: what are the modes of transmission of XMRV? We are still guessing.

Watch out for what is happening in Africa with HIV AIDS though. It is probably a barometer of the worst case here, and HIV is a serious epidemic in Africa. Mostly there are those who are rich and safe, and those who are poor and vulnerable. The same could happen in many western countries if there is a lack of political will and we don't vote.

For everyone on these forums who is living in a democracy and is not registered to vote, you might like to do so before the next election, even state elections. You might like to make sure that everyone who is sympathetic to your situation is also registered to vote.

Bye
Alex


thanks Alex, & all who answered. i've been reluctant to voice my fears because i dont' want to scare anyone - but let me talk for a moment about our worst case scenario. maybe i'm paranoid, but do you really think this society has come so far that we are past things like lynchings, hate crimes, holocausts, witch burnings, scarlet A's, stonings? i'm not so sure. i haven't encountered a lot of compassion. people dont' like sick people, they dont' like to deal with them & they certainly don't like the idea that they could get it. it would be nice to be treated as the victims we are, but will that happen? or will we be dragged from our homes & families to be quarantined?
ok, i said it all out loud. those are my fears. i'd love for someone to help me not feel that way, but something tells me we need to be a little careful here. the general public in my opinion are not nice, they certainly haven't been nice to us so far so i dont' know why anyone would think that would get any better once they find out they actually have something to fear from us.
 

serenity

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walking into a doc's office can be pretty tough, but it isn't the same as being beaten possibly to death. not one hate crime is ok with me, so i am going to watch what language i use when i speak to people about this. being atagonistic doesn't seem the way to go to me.
 

alex3619

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HI

One more thing about fear of XMRV - all of you who have had trouble getting disability should have less trouble every time you front for the bureacracy. They will want to expedite you out of their offices. The same goes for disability reviews. Once the fear is past, this will be replaced with understanding - and you should have even less trouble. We live in self imposed quarantine due to our poor health anyway, and if we play that right people might actually try to help us for a change!

OK, OK, this is probably optimistic, but I refuse to dwell too long on the dark side of humanity. Honestly, the biggest downside of XMRV fear that I can see is that many will lose some of their remaining friends. This has already happened to some I hear, but is still rare.

Bye
Alex
 

garcia

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Mikovits isn't helping her case any by sounding so hysterical about "epidemics" and AIDS, imo. Saying she "has no recourse" but to "play the autism card," and then try to imply there is some kind of sexist gender-based bias going on among researchers also just makes her sound a little bit crazy.

There is a recourse: have someone replicate the findings. It's called science. Presenting unverified information at an autism conference along with that discredited autism doc doesn't sound like the course of action someone takes who is sure of their findings. It sounds like a last move of desperation to push a pet theory that no one can yet verify.
How very patronizing.
 

alex3619

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Hi Serenity

Being polite and non-antogonistic is good advice at any time, as long as you can still be assertive when you need to. Most people are going to take a long time to wake up to the issues after it is brought to public awareness (presuming there is any basis for it of course) and by that time a vaccine could well be on the way. People are slow to figure things out. The only read downside would be if there was a major media disinformation fear campaign. How we handle the media is much more important than how we handle most people.

Also, please keep in mind that this is all based on a worst case scenario. It is much more likely that things will not be nearly so dire, and the problem not so big. There is no point in worrying about future maybes, but there is point in discussing them and working out strategies ahead of time, just in case.

Bye
Alex

walking into a doc's office can be pretty tough, but it isn't the same as being beaten possibly to death. not one hate crime is ok with me, so i am going to watch what language i use when i speak to people about this. being atagonistic doesn't seem the way to go to me.