XMRV Article in Chicago Tribune and other papers

[alex3619]

Hi Natassa778

Thanks, this is pretty much what I suspected but I could forsee arguements about this in the future.

Bye
Alex

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

 

[Cort]

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.

That may not have been a good idea . Dr. Mikovits e-mails can be very fierce. Why in the world she would send inflammatory e-mails to a reporter is beyond me! We'll see what they look like.

 

[KnightofZERO]

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.

That information was in the book Cort. I think her narrative was more sympathetic to Defreitas and not to Walter Gunn & the CAA, however it was in there. And since you've read the book, you've seen how much terrible abuse the patients have had to endure while having the CDC do nothing, or throw a wrench into good research (see the part about the Annals Article by Gallo, Cheney etc. and the CDC's response, authored by Reeves among others).

I believe there is a quote from Dr. Cheney saying the CAA "offered her up." From what I've read and heard I doubt he is a conspiratorial-type guy.

 

[Esther12]

That may not have been a good idea . Dr. Mikovits e-mails can be very fierce. Why in the world she would send inflammatory e-mails to a reporter is beyond me! We'll see what they look like.

I initially just asked if she could foreward me context to the AIDS statement. I have to admit, my first response on hearing the plan to release the whole e-mail on their website was 'uh-oh'.

Still, I'm instinctively in favour of spreading information about, so lets see how this goes.

Mikovits always seems to talk to people as if they're on her side, and starting from the same assumptions as her. I think this leads her to make these sort of over-blown statements, as if she's talking to her friends rather than to a reporter likely to be sceptical of her work because of the autism link.

 

[KnightofZERO]

I initially just asked if she could foreward me context to the AIDS statement. I have to admit, my first response on hearing the plan to release the whole e-mail on their website was 'uh-oh'.

Still, I'm instinctively in favour of spreading information about, so lets see how this goes.

Mikovits always seems to talk to people as if they're on her side, and starting from the same assumptions as her. I think this leads her to make these sort of over-blown statements, as if she's talking to her friends rather than to a reporter likely to be sceptical of her work because of the autism link.

The few times I've read her responses seem to bear this out, imo. She writes in a very informal manner, and I think she makes statements of the sort that we'd use in informal conversation with other patients but would want to refine quite a bit before we saw them in newspapers or the public domain.

 

[Cort]

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;-).

Dr. Mikovits spent most of her career in the very strait laced National Cancer Institute where talking to the media is frowned upon. Researchers in those environments are expected to let their results for themselves. If she had said anything remotely like this in that environment I imagine she would have been gone very quickly.

Thats the NCI - the WPI is not the NCI but I think its a mistake for the WPI to have their Research Director saying these things publically - whether they are true or not . Their truthfulness is secondary if they hurt the WPI's ability to attract funding and researchers etc. I don't know but I would imagine there are some researchers out there who would have been interested in working with her or the WPI who wouldn't be willing to do that right now.

I really don't get...it seemed like things had quieted down and these kind of 'headline type' comments had ceased, and now there's this......Those emails will be interesting.

 

[Robyn]

xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[usedtobeperkytina]

Something just occurred to me, we have been thinking that possibly, ME/CFs folks have XmRV at anywhere from 67-98%. But we think the rest of the population may have it anywhere from 2-6%.

But, actually, we aren't considering the possibility that it is in MS folks at possibly 20%? Maybe those diagnosed with depression (but actually have CFS) at 30%? Prostate Cancer patients at 20-30%? And, possibly autism patients at maybe over 50%? Oh, yes, and the fibromyalgia folks, maybe 50-70%?

So, it likely isn't a 98% of us and 4% of the rest. Add all those percentages (possible) of those with these other illnesses and you have a much bigger epidemic.

Tina

 

[serenity]

Martlet - don't forget how powerful the net is. i understand your "been there done that" feeling but the difference is we do have the net this time. there's no sweeping things under the rug with the internet up & runnin
Esther thank you for gettin the full quotes for us, i will be hopeful that things aren't as bad as they were worded in the article when we get the full text. comparison to Aids in Africa is just bad, & if she only meant the number of people who have it then let's hope that is stated clearly.

 

[usedtobeperkytina]

If she is not getting enough attention and funding and research to the level that the public health threat calls for, then she has no choice but to take extraordinary measures. In fact, it would be wrong for her to not make a public outcry.

Just imagine what it was like for her to see that virus budding out of a previously healthy cell. The implications are massive.

She played it cool until publication. She did it according to protocol. But, if as she said, the research world did not respond appropriately, what is she to do. It's like a weatherman seeing the weather models of a hurricane forming off shore of Los Angelas with wind patterns showing it likely going toward shore. You know it will take over half a day to evacuate. You pass on your information to your boss, but your boss does nothing, does not let the public know. Are you sure the forming hurricane will hit Los Angelas? No. But the potential threat to life calls for an early warning, considering the difficulty in getting people out of the city.

She has seen the hurricane. She sees it already doing damage. The potential of what it will do to the human race calls for extraordinary resources. Just because other scientists aren't responding, doesn't mean the moral imperative is not on her to get the word out and cry louder to get someone to respond appropriately.

It would be wrong for her to not speak out.

Tina

 

[Cort]

now

That information was in the book Cort. I think her narrative was more sympathetic to Defreitas and not to Walter Gunn & the CAA, however it was in there. And since you've read the book, you've seen how much terrible abuse the patients have had to endure while having the CDC do nothing, or throw a wrench into good research (see the part about the Annals Article by Gallo, Cheney etc. and the CDC's response, authored by Reeves among others).

I believe there is a quote from Dr. Cheney saying the CAA "offered her up." From what I've read and heard I doubt he is a conspiratorial-type guy.

I believe that quote is from Dr. Bell. He felt the CAA moved too quickly to ask for double blinded studies..that she should've concentrated on doing more basic research but he also said that the CFIDS Association never had the resources to properly support her now. He also said that the fact that the CFIDS Association was supporting her meant that she would never get funded by the NIH.

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.

I actually thought Hilary did a pretty good job in displaying what went on. She was clearly sympathetic to the CDC retrovirologist in charge, Dr. Tom Folks, who tried to find the retrovirus for several years and eventually concluded that it had been a contaminant. It was the rest of the CDC that was problematic to her.

(That's except for Dr. Gunn, a huge supporter - who actually quit the CDC and joined the CFIDS Association's efforts to retrovirus, who at the end questioned whether he'd thrown his career away for naught)

 

[serenity]

i gotta say this... i certainly do not want to lose Mikovits! someone said that somewhere back & what a scary thought it is! i am pro-Mikovits & fairly certain if it's not XMRV it's something close. they are on the right track & research will continue now i think & i am hopeful & optimistic. & we owe a lot to Judy Mikovits! i am even convinced by you all now that the Biggest epidemic in US history quote might not be so off base, it's still the Aids Africa quote that bothers me & i hope that sort of thing does not happen a lot - that will cause panic & i do not think it is accurate. let's hope she was misquoted or it was taken out of context. but our hero has a lot riding on her shoulders, so much - a slip up in wording is not out of the question & can certainly be forgiven. i just dont' want it to happen again, because it could be bad for us if the public hears such talk.

 

[KnightofZERO]

now

I believe that quote is from Dr. Bell. He felt the CAA moved too quickly to ask for double blinded studies..that she should've concentrated on doing more basic research but he also said that the CFIDS Association never had the resources to properly support her now. He also said that the fact that the CFIDS Association was supporting her meant that she would never get funded by the NIH.

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.

I actually thought Hilary did a pretty good job in displaying what went on. She was clearly sympathetic to the CDC retrovirologist in charge, Dr. Tom Folks, who tried to find the retrovirus for several years and eventually concluded that it had been a contaminant. It was the rest of the CDC that was problematic to her.

(That's except for Dr. Gunn, a huge supporter - who actually quit the CDC and joined the CFIDS Association's efforts to retrovirus, who at the end questioned whether he'd thrown his career away for naught)

Thanks for clearing that up. Your memory is quite good. Yes the CFIDS Assoc. was criticized in the book, and by even more so on her website after and they never should have been in the position of having to fund research to begin with. It is sort of like someone who makes a great accomplishment but due to their mistake their accomplishment is not used-- you can appreciate the accomplishment but you are upset at them for making a mistake which makes it to a greater or lesser degree wasted. Whether they made a "mistake" in cutting off her funding I know is something that is even now debated very hotly. As for the quote thanks for the clarification!

Regarding Gunn, he just showed he is a moral person. It might have better for his career to stick to the company line but what good is all the prestige and money in the world if you can't live with yourself?

An extra detail: I think she said she was using a development phase test (using the RNA) and not the original test for the replication the CAA wanted? I don't know why she did that, but there it is. Also I might not be completely accurate about that, it is completely from memory.

Hopefully Doctor Bell will test his former CAV+ positive patients and we shall get some answers about how this virus is related to XMRV, if at all.

 

[Snow Leopard]

Thats the NCI - the WPI is not the NCI but I think its a mistake for the WPI to have their Research Director saying these things publically - whether they are true or not . Their truthfulness is secondary if they hurt the WPI's ability to attract funding and researchers etc. I don't know but I would imagine there are some researchers out there who would have been interested in working with her or the WPI who wouldn't be willing to do that right now.

I agree. The fact is that Mikovits has been acting unprofessional in general - presenting questionable data at a questionable Autism conference is not a great idea to get serious researchers onboard. ERV has been saying this for a while and I have come to see that she is probably right.

It is a mistake to put all our eggs in one basket. Instead of preaching XMRV, she should simply be preaching the seriousness of the disease and the incredible disparity between the huge economic costs of the disease and the complete lack of high quality research.

The sad fact is that the WPI is never going to have the resources to solve the puzzle on their own.

 

[Cort]

Regarding Gunn, he just showed he is a moral person. It might have better for his career to stick to the company line but what good is all the prestige and money in the world if you can't live with yourself?
.

Thomas Gunn was really something else - a huge proponent for us. He was no spring chicken at the time - he wasn't like he threw away a budding career - but he did cut his ties with the CDC abruptly. I wonder what happened to him?

 

[Martlet]

i understand your "been there done that" feeling but the difference is we do have the net this time. there's no sweeping things under the rug with the internet up & runnin

Of course, I hope you are right, but the internet is both a positive and a negative for us. While it allows us to come together and make a noise, it also means that every unguarded word is out there for all and sundry to read.

 

[serenity]

i come from a PR background - hahaa! all PR is good PR
no seriously, making a noise is what we need as long as it doesn't turn into the wrong noise
so yeh i hear you, i just don't think we can get enough out there right now - we need every word we can get
& maybe that's why Mikovits is making outrageous statements i get that
but - as a scientist she does need to keep to a professional tone i believe
my argument here has come full circle, i see both sides of the case
i still say Aids Africa was a boo boo
just a bit more careful about stuff like that please!

 

[Martlet]

i come from a PR background - hahaa! all PR is good PR
no seriously, making a noise is what we need as long as it doesn't turn into the wrong noise
so yeh i hear you, i just don't think we can get enough out there right now - we need every word we can get
& maybe that's why Mikovits is making outrageous statements i get that
but - as a scientist she does need to keep to a professional tone i believe
my argument here has come full circle, i see both sides of the case
i still say Aids Africa was a boo boo
just a bit more careful about stuff like that please!

Absolutely right with you. I mean, some part of me says "Go girl! Sock it to them right between the eyes," but then I know this doesn't get us the right sort of attention.

 

[JillBohr]

Absolutely right with you. I mean, some part of me says "Go girl! Sock it to them right between the eyes," but then I know this doesn't get us the right sort of attention.

So Martlet, I am sorry but I am confused. WPI releases a paper in Science showing a relationship between XMRV and CFS. The powers that be do nothing with this. Meanwhile, there is some unpublished data showing 60 percent of ASD children either have the live virus or antibodies for it. This is presented at a CFS meeting. Meanwhile, I hear birds chirping, some psychologists out in Britain and the Netherlands whose careers depend on maintaining the belief that CFS is caused by lack of motivation, not illness publishing papers that there is no association between XMRV and CFS or that XMRV does not exist in Europe. 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?

Poor Dr. Judy, she is damned if she does, and she is damned if she doesn't. I guess she should have played it smart and blew off ASD. I had no idea my boys were "controversial" because they have ASD and seizure disorder. Sorry but showing that there may be an association with XMRV and autism is NOT controversial. Ignoring these poor kids to "look good" is abominable. Yes, it would be a better career choice because no one is penalized for ignoring the problem.

One more point, bringing awareness to the autism community may also bring in funding for XMRV research. It would be great if the money were used to find the cause instead of searching the genome for centuries. Many ME/CFS patients are too sick to advocate for themselves. Parents of ASD children have more energy (well, except those with ME) and are not afraid what some amateur writer from Chicago thinks.

 

[rebecca1995]

...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?

Martlet, is it your opinion that the three negative papers on XMRV and CFS are equal in quality to the paper by Lombardi et al?

Is it also your opinion that the methods in Lombardi et al, which was co-authored by such luminaries as Dr. Silverman (the discoverer of XMRV) and Dr. Frank Ruscetti (the co-discoverer of HTLV) are backed only by Dr. Mikovits' "word"?