Pop science journalists are finally getting a bit wary of the XMRV-->CFS story. The first to stick her neck out is Trine Tsouderos. You know Trine. She wrote that great piece calling out Dr. Oz, and the krazies at Age of Autism HATE HER.
Trine is super cool.
So I was a little annoyed she wasnt as ruthless when it comes to Judy Mikovits and the WPI. This article seemed to be more like "Heres what Judy says, heres what other scientists say. Heres what Judy says, heres what other scientists say. etc etc." Not the more pointed jabs Trine took with autism woo and Dr. Ozs silliness. Looked like generic 'balanced' science reporting-- "Heres what crazy person says, heres what other scientists say."
Then I went back and really read what Judy was saying.
Then I appreciated Trines latest piece.
She got some of the most incredible, delusional statements out of Mikovits. These quotes are AMAZING!
In response, Mikovits has accused other researchers of bias and amped up efforts to sound the alarm over what she views as an epic health crisis. Invoking the world's slow response to AIDS, she warned that XMRV infection "could be the worst epidemic in U.S. history." Though her published findings address only chronic fatigue syndrome, Mikovits also has publicly linked the retrovirus to autism, atypical multiple sclerosis and other disorders.Mikovits, director of research at the 5-year-old Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nev., said in an interview and by e-mail that she feels her finding is being ignored by a dithering, even hostile scientific world.
In January the Reno Gazette-Journal quoted her as saying one British team had "skewed" its study design to avoid finding XMRV in patient samples. "Some are not trying in completely good faith," she said in an interview with the Tribune.
Mikovits wrote in an e-mail that she realizes presenting at the conference "could destroy what is left of my career" but felt she had to accept.
"I know that presenting unpublished data will hurt me but the political attacks on the WPI and the lack of government response to a Science paper showing a new human retrovirus detected in a huge proportion of CFS patients told me that 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!"
"It was an incredibly proud day," Mikovits said of the paper's publication. "I got calls from around the world. Dubai, China, you name it."
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Meanwhile, some people with chronic fatigue syndrome already are getting tested for XMRV and taking toxic drugs intended to treat the retrovirus that causes AIDS -- an idea Mikovits does not endorse but declines to oppose.
Mikovits said she neither opposes nor endorses people's experiments with anti-retroviral drugs. But, she said, the Whittemore Peterson Institute is helping some physicians monitor some patients' therapy.
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Last month she spoke at the Autism One conference in Chicago about her new research on XMRV and autism -- joining a speakers lineup that included disgraced autism researcher Andrew Wakefield, who recently lost the right to practice medicine in Britain for serious professional misconduct.
Mikovits said she accepted an invitation to speak at Autism One to help sound the alarm. She accused researchers and government agencies of being more interested in previously published research linking XMRV and a form of prostate cancer than in her work. Chronic fatigue syndrome affects women at four times the rate of men, according to the Centers for Disease Control and Prevention.
"So research dollars will go for XMRV infected men with cancer but not women with CFS," she wrote in an e-mail. "(This) left me no recourse but to play the autism card! Will they ignore the children too?"
I dont really feel as if I need to say anything. These comments remind me of my 'debate' with Lenny Horowitz. The comments are so outlandish and absurd I dont need to say anything to refute it. World-wide conspiracy, personal vendettas against Judy, organized sexism against CFS patients, not 'supporting' antiretroviral use while supporting antiretroviral use (more to come on that), cryptic predictions of the apocalypse...
I think its best to just let Judy speak for herself in this post.
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Your really ignoring or not aware of some important fact/studies in writing your blog.
THe WPI did it's initial study that was published in Science finding 67% of CFS patients vs 4% of controls in collaberation with the National Cancer Institute and the Cleveland Clinic. So if you are saying Judy Mikovitz and WPI have been in error than you are also basically saying the National Cancer Institute an Cleveland Clinic are also in error. What are the odds of that?
Another important point as world renown retrovirologist John Coffin has pointed out on record is that the initial science study looked for xmrv using four different techniques. The negative studies have only used one technique, PCR.
Also there have been two studies, one published recently in germany which found XMRV in 2% of controls. The other study done by the Japanese red Cross also found XMRV in 2% of Controls.
Oddly the negative cfs studies you point out in your blog found 0 XMRV in either CFS patients or Conrols! One might conclude that they found no XMRV in any sample because there testing was not sensitive enough to pick up XMRV at all.
Dr. Nancy Klimas another well Known HIV and CFS researcher at the University of Miami recently spoke at a CFS conference and said a positive study finding XMRV in CFS has been approved for publication in a medical journal by a research group and will be coming out soon.
So before you try bury the CFS and XMRV connection you should really look at all the science and be patient because true replication and quality studies take time and the negative studies have been rushed and used the quickest most simplistic ways to look for a very slow replicating virus indeed.
And I wish you ALL a good long life filled with CFIDS. Then not a peep of mocking Mikovits, WPI, and the rest of the CFIDS researchers would be heard from any of you kind, ultra-brilliant types.
Really, I think most of you need to change careers and go into trash collecting.
um....i was bedridden for several years and life was an utter nightmare. i spent 100K getting tested for everything under the sun. all they could tell me was that certain immune tests indicated that i was probably fighting a virus.
finally, desperate and close to suicide, i began the HIV drugs, under the care of a sympathetic infectious disease specialist.
i am now slowly recovering from CFS.
you do the math.
Given the results of the recently published German study which found XMRV in the respiratory fluids of immunocompromised patients and the unanswered questions about the immune status of the vast majority of ME/CFS patients, then continued speculation about XMRVs role in ME/CFS is inevitable.
Time will tell whether Dr Mikovits & the WPI are correct (or not) with regards to proving a statistical link between XMRV and ME/CFS.
With more and more highly respected researchers now being convinced (because antibodies to XMRV were also present)that the contamination theory is no longer valid and no proper replication studies having yet been published, then the "Science" paper, linking XMRV with ME/CFS, still stands firm.
IMO, given the significance of what she believes that her research group has discovered, what do yet expect a researcher like Dr Mikovits to do?
In all good conscience (and in the interest of patients), she cannot remain silent and thus fail to defend her work. She has a responsibility to ensure that the research community examine her findings thoroughly - but also fairly. That hasn't happened yet, hence there remains a need to challenge the research community to do so. She therefore has no choice but to plough on in the face of speculative and unjustified criticism.
I therefore believe that criticism (both direct and implied) of Dr. Mikovits & the WPI on this forum, needs to be more thoroughly based on provable facts rather than cynical speculation, because their work might just prove to be invaluable to us all.
Respectfully, this entire blog does a disservice to anyone with CFS. I'm a 40 year old man, have had CFS for 15 years and am a long-term patient of Nancy Klimas, who is one of the premier immunologists in the world. The negative views shared on this blog regarding XMRV and WPI are baseless and ignorant. Most of the preeminant CFS practitioners (Klimas, Cheney, Peterson, de Melier, etc) have indicated that they believe the WPI study is good science. My understanding is that the CDC and NIH will, in the very near future, also confirm that they were able to replicate WPI's results. I readily acknowledge that this does not mean that XMRV is the cause of CFS; however, it is a highly important finding and may lead to additional research and treatment protocols. CFS practitioners are also not telling their patients to get tested for XMRV or take anti-retrovirals; everyone acknowledges that the assays need to have improved accuracy and that additional research and clinical drug trials need to be performed. So with all that being said, attacking Mikovitz makes little sense to me. All she's done is unearth a potentially important discovery which most within the CFS community are highly grateful for.
I'm not sure who's sounds worse, the ignorant blogger who clearly knows nothing about CFS or, as an one poster wrote, the school yard bullies in the comments section. Dr. Mikovits's study is very solid, and was co-authored by both the Cleveland Clinic and the National Cancer Institute. The studies that failed to find XMRV all also failed to follow the WPI protocols. Retroviruses are damn hard to find and one has to at least follow what another researcher did before saying you failed to replicate their findings.
And, as someone who's suffered greatly from CFS for 18 years, it's not news that the NIH and the CDC haven't actively avoided dealing seriously with this disease. I spoke with an HIV researcher back in 1992 when I was first ill who said that it was well known among his colleagues that the NIH didn't want to hear about another expensive disease especially as the symptoms were invisible and 3/4's of the cases were women. And the similar comments from an HIV researchers a few years later on the west coast who told me that among young researchers putting out a grant to study CFS was "career suicide".
That there's the possibility of an epidemic of an infectious disease that's been spreading for more than 25 years . . . this may sound like hoot to the frat house gang posting to this blog but to me and those I care about who've lost much of their adult lives to this disease, it's just a given. Is it XMRV? Time will tell. Certainly, with the mysterious hold on Harvey Alter's positive replication study after it was in galleys at PNAS -- while the Reeves and his pals at the CDC get to publish their study . . . even I wasn't that paranoid. Oh, yeah, Alter's another hysteric and grandiose loony.
And the horrible risk of taking potentially toxic AIDS drugs. Two of the three drugs under discussion are not all that toxic. Rather well tolerated from folks I've talked to. Also, if the drugs do not help someone with CFS then they simply stop taking them. Not a huge risk there. Why do I think you people know nothing about CFS? Because the "risk" of doing nothing means remaining an invalid for life. It's a rather safe and informed risk/reward ratio. Not loony. Not crazy. Again, I'll repeat, if someone who tests positive for XMRV and has moderate to severe CFS symptoms takes these three drugs for six months, say, and sees no improvement and has the necessary lab work, they simply stop taking it.
Oh, and by the way, do any of you know the difference between 'regressive autism' which has been epidemic since the early 1980s and classic autism? I bet not. Up until the 1970s, autism, if anyone was paying attention was apparent from birth. Read Bernard Rimland. The new version of autism hits kids around the age of two, children who've developed normally then suddenly regressive over the span of days or weeks. This version is new and began around the time CFS began to appear in epidemic numbers. And there's been talk of similarities between CFS and autism for ten years, well before Mikovits got interested.
Is there really a link? I don't know. But asking the questions is not loony.
And, yes, kids of all ages, I have a Ph.D. earned before CFS destroyed most of my life.
Judy is speaking truth- people are sick and dying horrible deaths- this is an epedemic and pandemic! Covered up by the CDC for over 24 years. I have almost died 4 times- I am bed ridden. I have been tested for HIV over 10 times because the infections I get only people with HIV get-but I do not have HIV. I use to be very healthy.
Dr. Loveless testified in 1995 that people with CFS suffer everyday as someone with late stage Aid's- 2 months before death.
Dr. Klimis said she would rather have HIV then CFS!
I suppose all these experts are wrong-NIH, FDA, Cleveland Clinic, National Cancer Institute! They will Ban out blood soon- just wait... you could be next- and end up bed ridden for life..You are sick to write this! MENTALLY SICK!
Nice.
Give her enough rope and....
""Our continent will be like HIV Africa only worse!""
Wow.
Just wow.
Which comes back around to:
That is some awesome reporting skillz -- get out of the way and let the interviewee hang herself from her own words. IMHO she's on her way to the Tina Fey award.
CFS in the US will be worse than HIV? Wow indeed.
My favorite bit was this:
Their Science paper is dated Oct. 23, 2009. Of course, a Science paper is pretty hard to ignore to begin with, but this one was also accompanied by a special editorial in the same issue. IOW, it got extra special notice from day 1.
In the seven and one-half months since that paper, there have been no less than seventeen publications indexed in PubMed that mention the terms "xmrv" and "chronic fatigue." This includes as least three independent (and unsuccessful) attempts to confirm an association between xmrv and CFS.* The first of these confirmation attempts was published exactly 75 days after the WPI paper.
And Mikovits says her finding is being ignored by the scientific world?
This woman is seriously delusional.
She's completely correct, her findings are being ignored. But that's because they were confirmed as bad science, not because of a conspiracy.
"....that's because they were confirmed as bad science,..."
Nonsense.
Didn't you see the photo? She is wearing a lab coat with "Judy" embroidered on it. They don't just hand those out to anyone.
Besides, there was a person with latex gloves, also in a lab coat, moving a tray of science things in the background. We have empirical evidence that Judy is very scientific.
Nobody could stage something like that.
Case closed.
Prometheus,
I must strenuously disagree. If they were scientists, at least one of them would be holding up some flask or tube of colored liquid to peer at.
That would be "don't listen to me because I'm talking utter shit" alarm.
quetzal's powers of observation are superior to mine.
Note the lack of goggles in the photo. Scientists cannot scientifically evaluate brightly colored science liquid unless they observe it through goggles.
Errors in the photo aside, it is nice to see that Aileen Wuornos has turned her life around.
Judy puts her name on her lab coats. How cute!
Seriously, something about that amuses me. Perhaps just that it reminds me of Real Genius:
@quetzal -- Dont forget the grey vapors. The brightly colored liquid must be giving off smoke-like vapors.
I think Judy should play the dead babies card next. XMRV must cause SIDS. That's the ultimate. Or maybe nesting birds on Gulf Coast wetlands. Who could resist?
The WPI (p)sychophants are eager to blame flagging subscriptions at the Chicago Tribune and other newspapers for the attack on Dr. Judy's career and integrity. Who could target someone as earnest looking as Judy in that brilliant white coat with the big "JUDY" patch above her left breast? She even has pens and maybe a slide rule in her pocket. Certainly a meat thermometer is packed in there. Judy has bet her bartending career on this discovery. She's repeated her Science publication of Oct. 09 with 13 authors by one in May 2010 with only two signers. (Do you think she's extorting Ruscetti with photographs taken at long range?) She's waited a whole year since submitting the manuscript to Science for some half-as-smart a-hole to validate her incredible finding. Yet she's had her hands in her pockets texting gullible patients the whole time, something only 15 year olds can do without their parents' notice. She is counting her gold pieces all the way to the bank. Squirelling away profits with her wealthy benefactors as VIP Diagnostix charges $450 per unqualified XMRV test. Next gig: Celebrity Apprentice. Sharon Osborne might eat her alive. If so, I'd pay to watch. Happily.
What is this, some kind of professional smear campaign site masquerading as a legitimate debate forum?
Your comments are cringe worthy and you don't even do the subject of your ridicule the basic courtesy of revealing your identity. You come across as little more than schoolyard bullies.
Have the courage to show your faces at least.
No, just a group of people (some of us CFS patients, like me) disgusted at what Mikovits is perpetrating. Look at this:
Meanwhile, some people with chronic fatigue syndrome already are getting tested for XMRV and taking toxic drugs intended to treat the retrovirus that causes AIDS -- an idea Mikovits does not endorse but declines to oppose.
Declines to oppose a toxic and potentially life-threatening "treatment" for a problem that isn't even close to being proved to exist? What the hell kind of patient advocacy is that?
It isn't. It's Mikovits advocacy, same as her acceptance to speak at AUTISMONE, and as a CFS patient who would like to see results one day from actual science, I'm tired of her shenanigans. Anyone who publicly speculates about a connection between vaccines and autism just to get a chance to show off at a convention makes me ill.
By the way, I've long since been promised an explanation by she-who-cannot-be-named-on-this-blog for Mikovits' behavior regarding AUTISMONE. Guess how that panned out.
Lisa Simpson@#13
".... the basic courtesy of revealing your identity. You come across as little more than schoolyard bullies.
Have the courage to show your faces at least."
A harsh observation from someone posting pseudonymously under the name of a cartoon character for an eight year old girl.
I noticed around January the Guardian was trying to hang the Lynn Gilderdale assisted suicide case on "WPI denialism".
Precedent is set, you might as well stop mincing around and just call us murderers.
I am just glad to hear that Judy is keeping up with the latest scientific developments in the XMRV field. Especially by going real conferences like AutismOne while skipping those rubbish pseudoscience meetings like the Cold Spring Harbor Retrovirus meeting. I mean what more can she learn from a meeting like that, she has already proved everything. Its not like there were 21 abstracts accepted (only a few directly about prostate cancer), or that one of the keynote speeches was by Sandra Ruscetti, or even the fact that there were two sessions of talks about it.
I mean come on why are we all dragging our feet. Her Science paper was held up 6 months in review, its been 9 months since the publication, given a similar period in review that would leave 3 months to do all the good science necessary. We are dragging our feet, it is totally a conspiracy.
prometheus @9
Oh please! Everyone knows the goggles do nothing.
Dr. Horrible and others* would beg to differ.
*http://lordwhatsmymotivation.files.wordpress.com/2008/09/young-frankens…
I think this has been the best news article on the subject so far.
Mikovits is going all out to announce that she is a quack. Whoever still sticks by after all the signals can be milked to the fullest. That is how quacks work.
If you saw the chat transcript, Trine the reporter is quite empathetic with everyone. She mentioned that there have been 2 more negative studies which have been presented at conferences but not yet published. One of them by Huber which Mikovits had previously said she had a good feeling about. Some patients pulled out the Barry Marshall (Nobel Prize for H. pylori) comparison, not realizing that they didn't win the Nobel Prize by "sounding the alarm" at quack conferences even when faced with seemingly insurmountable opposition.
Look! While Doc Judy has been "sounding alarms" and "playing cards", Annette has gotten a medical license. She's suggested an antidepressant to a patient on another organization's Facebook page. (Why not an ARV cocktail?) Seems like she would have something more important to do in the midst a PR crisis at the sullied WPI. http://www.facebook.com/CFIDSAssn?filter=3 Guess she's just SO compassionate that she can't restrain herself from trying to help.
This is a point that I bring up with Creationists/HIV Deniers/Woo Peddlers/etc. Its called the Galileo gambit.
But I take it further, like you do, and point out that not only were Galileo and Marshall not wrong, they did science, not PR tours.
Marshall was not campaigning to local school boards to teach the Pylori Hypothesis to elementary school kids before it was established fact in the scientific community. Marshall didnt go to anti-vaccination rallys telling parents autism is caused by Pylori and EVIL VACCINATIONS. Marshall didnt claim that people were skeptical of his ideas because hes a MAN and MEN are twice as likely to have stomach ulcers as women and everyone is SEXIST its a CONSPIRACY.
Scientists dont do stupid this like that.
Kooks do.
Its always laugh-worthy when people pull out the H. pylori card. Do they not realize that he went from hypothesis to Nobel prize in a relatively short period of time?
"Marshall was not campaigning to local school boards to teach the Pylori Hypothesis to elementary school kids before it was established fact in the scientific community."
He did spend an inordinate amount of time traveling and asking the worlds top researchers in microbiology to replicate his results, while Robin Warren was developing the double blind studies on antibiotic treatments.
Ostracized alone and struggling against all odds he/she/it won/discovered/climbed/beat...etc.
They do this to everybody and Marshall Plays along just like Sir Edmund Hillary went hoarse shouting "....and Tenzing Norgay!" until he just gave up and used the myth to raise money for Sherpa schools and hospitals.
Does anyone else find the naked part-human, part-merman, part-helix creature on the VIP Diagnostics page (www.vipdx.com) deeply disturbing? Perhaps no more disturbing than the news posted there that WPI is spinning off all sorts of businesses under space-age sounding names like Unevx. Or that they received 777 XMRV specimens before June 1. $450 x 777 = $349,650. That total is twice the average annual NIH grant for a female PI, in just about 6 months time.
(http://report.nih.gov/nihdatabook/charts/Default.aspx?chartId=174&catId…) Demand WPI created for its VIP XMRV tests certainly saves Dr. Judy the trouble of having to painstakingly fill out an RO1 application, submit it to a picky peer review committee, revise, resubmit, etc. By playing the autism card, the specimens arrive right at your door! Call XMRV the biggest spectacle on the planet and you get free advertising for your product to build on your word-of-mouth marketing plan. That IS a brilliant business strategy even if itâs not particularly scientific. (Maybe Sharon Osbourne wouldnât beat Judy at Celebrity Apprentice.)
One more thing that Marshall and Warren did not do is pull out the Galileo Gambit! You only get to make comparisons to Galileo or Marshall after you have been proven right, not before. But by then, you wouldn't need to....
However, I have made comparisons before between CFS and the ulcer story but regarding the type of logical fallacies that Marshall describes in his Nobel lecture as having to confront. Like doctors thinking they knew ulcers were psychosomatic and caused by stress when they had no such evidence and even when presented with H. pylori evidence.
Highly recommended if anyone hasn't read or watched the lecture before:
http://nobelprize.org/nobel_prizes/medicine/laureates/2005/marshall-lec…
@22 JohnV - Is 24 years considered a relatively short period of time to go from hypothesis to Nobel Prize?
I thought that's what dedicated scientists do even if it takes 24 years. Not go over to quackery the day after publishing in Science.
@24 lvlheaded1 - So I see WPI is going to acquire VIPdx. I initially thought that a couple hundred thousand dollars or even a million should be little incentive for a multi-millionaire, but I think I was wrong. Not all the players are multi-millionaires, and this is just the beginning. On the bright side, 777 is like 0.01% of people with CFS. On the other hand, note how little of the population you'd need to dupe for your non-profit to make big profits.
My bad, Smurfette. I wondered about that too. Then last night, with the help of a little more tequila than I should have had, I realized that I neglected to factor in the revenue from the negative XMRV tests that VIP has done. In one of her elequent presentations, Judy reported that 40% of the tests done at VIP are positive for XMRV. So if VIP has 777 XMRV specimens, they must have done 1942 tests total. 1942 x $450 (conservative, since they first charged $650) = $873,900. Now that Trine's article has been picked up in the Seattle Times and LA Times, they've just gotten free marketing in two large population centers. I think...I'm becoming...a fan of the WPI/Mikovits strategy. Sure beats the mucking folks like me do for relatively piddly sums of NIH money. I suspect it's even easier to get parents of autistic kids to part with $450 for an XMRV test.
Si nos curamos alguien va a dejar de ganar mucho dinero. propongo que vayamos contra ese alguien.
Munich
"Si nos curamos alguien va a dejar de ganar mucho dinero. propongo que vayamos contra ese alguien."
If we cure someone it is going to cost a lot of people a lot of money. I propose we oppose those people(person).
Tr: Big Pharma, Big Psych etc.
Hmmmmm. Dropping the ball today. I usually don't have to dust off my Latin extrapolated high school Spanish before we see the standard combo of Cluster A+B personality disorders.
Circle gets the square for borderline PBHN and I feel a drinking game coming.
Hola yo soy de Munich, he nacido en España, y vivo en España. Tengo FM, SFC y SQM. No entiendo el comentario, te última porque mi inglish no es muy buena, lo siento. Por favor, traducir el comentario, te última, traductor de Google no es buena. Thanks.I pensar en esta situación es muy, muy, muy dificil mantener la calma. Estamos nerviosos, por supuesto, que no?, Pero no somos tonto. Es simple.
Y creo que el parecer: lo que la gente es bueno si somos malos?. Es simple.
The problem is alwais the sistem. But the sistem are person as you and me. Person wiht power, yes, but whe are a lot of people, a lot of ants. Ants + technology + an idea(*) = best and more just world. Pobably not now, pobably not in many many years, but the ideas and the humanity is the most important things we have in our little lives. We are so specialized that we are lost the Nort. We are extinted if we dont stop ball now. Is simple.
(*)good and white idea. This chat is free, is wonderfull. we must be free to see other world more best. Is our obligation now.
i agree woth Prometheus,give her enough rope....
This is all gossip - designed to tear down the work others are so diligently carrying out. Why don't you spend your energies on something productive. You're nothing bur a heckler.
I'm sick. I've been sick for two decades. I have things to do. I want to get better. You'd rather see me in a box before anyone had any success in treating me. That would be "fun" for you.
You're one sick Puppy. "Look at me!"
I may not have CFS, but I have been ill with some unknown immune disorder for decades after a terrible virus that nearly killed me in '89, tested positive for high anticardiolipin antibodies & XMRV PCR & Serology (antibodies), & have an Autistic child that turned into a vegetable after his 1st DPT. You guys are probably right.