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DBL%20Hendrix%20small.png College chemistry, 1983

Derek Lowe The 2002 Model

Dbl%20new%20portrait%20B%26W.png After 10 years of blogging. . .

Derek Lowe, an Arkansan by birth, got his BA from Hendrix College and his PhD in organic chemistry from Duke before spending time in Germany on a Humboldt Fellowship on his post-doc. He's worked for several major pharmaceutical companies since 1989 on drug discovery projects against schizophrenia, Alzheimer's, diabetes, osteoporosis and other diseases. To contact Derek email him directly: derekb.lowe@gmail.com Twitter: Dereklowe

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September 29, 2011

XMRV: Over With and Done?

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Posted by Derek

Here's an excellent post-mortem on the whole XMRV chronic-fatigue controversy, which I think almost everyone can agree is now at an end. The latest results are from a large blinded effort to detect the virus across a variety of patient sample (and across a number of labs) - and it's negative. The paper that started all the furor has been partially retracted. As far as I can see, the story is over.

But Judy Mikovits of the Whittemore Peterson Institute for Neuro-Immune Disease (WPI) in Nevada, whose work started all this off, is still a believer. And so, as you might imagine, are many patients:

Mikovits has become something of a savior in the community of people with CFS (also known as myalgic encephalomyelitis, or ME), who for decades have endured charges that the disease is psychosomatic. The 2009 Science paper shouted out that CFS may well have a clear biological cause, and, in turn, raised hopes of effective treatments and even a cure. The new findings give her “great pause,” yet she suspects they're but a speed bump. “I haven't changed my thinking at all,” she says. And she worries that the Blood Working Group conclusions will confuse people with CFS, some of whom got wind of the results early in the blogosphere and contacted her in a panic. “I had 15 suicidal patients call me last week,” she says.

In scientific circles, Mikovits has developed a less flattering reputation. Critics have accused her and her backers of stubbornly wedding themselves to a thesis and moving the goalposts with each study that challenges their conclusions. Even disease advocates who welcome the attention XMRV has brought to CFS believe the time has come to put this line of research to rest. “It's hard to say that this has not received a fair appraisal,” says Kimberly McCleary, president of the CFIDS Association of America, a patient group in Charlotte, North Carolina.

At the worst extreme, you get things like this. Note that that post's comment section filled up with people doubting, very vocally, that any such thing was going on, and sometime hinting at big conspiracies to keep the truth from being heard. I'll be a bit disappointed if some more of that doesn't attach to this post as well.

But while I can see why patients in this area are frustrated beyond words, and desperately hoping for something to help them, they're going to have to deal with what every scientist deals with: the indifference of the universe to what we want it to provide. Blind alleys there are beyond counting, wasted effort there is beyond measuring, in trying to understand a disease. We're used to, as humans, seeing agency and design when something seems so well hidden and so complex - in this case, malevolent design. But just as I reject the intelligent design hypothesis to explain what looks benevolent, I reject it for what sometimes looks like an evil practical joke: the perverse difficulties of biomedical research.

Comments (31) + TrackBacks (0) | Category: Infectious Diseases


COMMENTS

1. johnnyboy on September 29, 2011 12:08 PM writes...

New Disease Syndrome identified: Wakefield-Mikovits Delusional (WMD) disease. Observed mainly in susceptible medical researchers. Can remain dormant for years, but is precipitated when a subject's paper is latched onto by a vocal segment of the population and hailed as a ground-breaking discovery of unprecedented importance. Aggravated by incessant media attention and the fawning adoration of followers. Symptoms include a refusal to admit one's errors and a blanket refusal of any and all evidence contradicting one's theory. Usually results in disgrace and career death for the subject, but not after years of confusion and suffering has been incurred in the general public.

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2. qetzal on September 29, 2011 12:29 PM writes...

johnnyboy,

I don't think that's a particularly new syndrome. Pauling suffered from it (re vitamin C) long before Wakefield or Mikovits.

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3. Milo on September 29, 2011 1:01 PM writes...

i have to ask you this... if XMRV is dead, why Lipkin is spending over a million $ doing the research that was planned?

Why do patients with MECFS have a defect in te enzyme RNASE-L which fighhts viral infection? Why arethe NK cells subdues, which too fight for viral infection but also kill the circulating cancer cells? Why do patients have viral reactivation, just like AIDS patients? Why is there family units, even non blood related, acquired MECFS and have children on the autism spectrum? Why, according to Statistics Canada, the number of MECFS patients has risen from 333 000 to 413 000 in 5 vyears? Why is there so much persistance in making believe that MECFS patients have false illness beliefs?

Judy Mikovits may or may not have scientific respect, I cannot answer this. However, she is not only researching xmrv. She is trying to understand what's wrng with MECFS patients, when just about no one- mius a few exceptions, have wanted to go there for decades, even the governments.

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4. johnnyboy on September 29, 2011 1:20 PM writes...

qetzal, I believe you may be confusing this with a slightly different syndrome, namely Pauling-Montagnier disorder, which sadly strikes the most highly respected scientists, generally around retirement/obsolescence age, and is characterized by the subjects spouting unimaginable drivel in a field completely out of their previous expertise.

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5. qetzal on September 29, 2011 2:08 PM writes...

johnnyboy,

I don't think that's a particularly new syndrome. Pauling suffered from it (re vitamin C) long before Wakefield or Mikovits.

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6. old man on September 29, 2011 2:39 PM writes...

@ Johnnyboy,
Don't forget James Watson on race and intelligence.

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7. Carbocat on September 29, 2011 3:48 PM writes...

It's disgraceful to compare Pauling with Wakefield or Montagnier.

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8. Janelle on September 29, 2011 4:30 PM writes...

Hi, thanks for your post. I agree that XMRV looks pretty unlikely as a cause of disease right now.

One thing to remember about ME/CFS research is, although yes, it is a complex disease and yes, doing science is complicated... here a huge part of the problem for ME/CFS is funding, or the almost complete lack thereof.

ME/CFS is consistently one of the bottom 5 worst funded of all conditions, getting about $5-6 million per annum. Compare that to a not-particularly-well-funded but similarly-debilitating disease, MS, which gets $144 million (and has about half as many patients as ME). Or compare to Alzheimer's disease, better funded at $500 million.

Regarding the alleged death threats, certainly such words are to be condemned. But that is not to be taken as representative of the patient community.

Nor should any isolated incident of an alleged death threat, some understandable mouthing off out of frustration stemming from decades of neglect, and reasoned scientific discourse from patients with relevant educational backgrounds, be conflated, as is typically done in the news coverage and from, shockingly, authority figures in the medical world.

The real story is that an entire patient population is being shamefully neglected. In addition, it would be helpful to do a search for a speech by Dr. Kenneth Friedman, to learn about the top-down abuse faced by researchers on the biomedical side.

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9. Spiny Norman on September 29, 2011 4:49 PM writes...

@7. Hear, hear.

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10. Slurpy on September 29, 2011 5:14 PM writes...

Critics have accused her and her backers of stubbornly wedding themselves to a thesis and moving the goalposts with each study that challenges their conclusions.

Um, isn't that the whole point of scientific criticism? Someone points out what's wrong, and you adjust the hypothesis to fit the new facts?

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11. AIDAN WALSH on September 29, 2011 7:14 PM writes...

AND THE BAND PLAYED ON AND ON AND ON...

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12. DCRogers on September 29, 2011 7:23 PM writes...

@1

Wakefield-Mikovits Delusional (WMD) disease is just a mutation of the previously-recognized Deusberg Delusional Syndrome (DDS). Very hard to eradicate once the mental infection fully manifests. At least WMD is not as life-threatening compared to those with DDS, who often refused proven medications.

http://www.duesberg.com/

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13. AIDAN WALSH on September 29, 2011 7:28 PM writes...

THEY DID THE SAME TO ELAINE DECADES AGO AND NOW THEY ARE TRYING TO RUIN JUDY...WELL I GUESS ITS OK TO START DONATING BLOOD AGAIN SINCE IT IS ALL IN ONE'S HEAD...THEY CALL THIS SCIENCE SOUNDS LIKE THE COMEDY NETWORK...I GUESS THE WEASLE MUST BE JUMPING FOR JOY NOW AS THIS IS EXACTLY WHAT HE WANTED TO HEAR...LAST I HEARD HE WAS HIDING OUT IN SOME BUNKER IN IRAQ BUT SAID HE FELT BETTER AND SAFER THERE...I WOULD ONLY HOPE THE WOMEN DO NOT GET TO HIM...HE IS SUPPOSE TO BE USING CBT THERE AND TELLING THE WOMAN TO TAKE THE CAMELS FOR A RUN THAT THEY WILL FEEL BETTER...TOTAL CFIDS CIRCUS COMEDY AT ITS BEST...

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14. Anonymous BMS Researcher on September 29, 2011 9:02 PM writes...

Anybody who wants to be a successful scientist has to learn over and over: there is no relationship between my degree of emotional attachment to a hypothesis and its validity.

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15. jessica on September 29, 2011 9:27 PM writes...

yes.perhaps we should all donate blood right,or maybe just threaten to. The funny thing is its all kind of an honor system thing as it stands know [we arent "supposed" to doate blood but really theres no "honor"/respect for us. I really do think all the naysayers who believe we are nuts SHOULD be willing to take our blood and organ donations. I used to be an organ donor on my licence but did the honorable ,decent, humane thing and removed it. No one wants my organs,Im pretty convinced of that. WHY would we want this,why? Why would CHILDREN lie and "pretend" to be bedridden and racked with illness when they could be playing and enjoying their childhoods.C'mon people...get real....and if [by chance]xmrv is not a factor,well then theres a whole lot of other wierd stuff going on with us that is definately not "normal" and surely not made up.evidence.hows abt the 700 or so protiens in our spinal fluid,or the fact we have low nk cells or just the plain ol deaths due to cancer and heart disease,[20 yrs younger than the rest of population and of course we kill ourselves. Imagine feeling like your brain was swollen everyday,like you have aesenic or drano in your veins and frequently waking up from what kina feels like a heart attack...regularly,day after day,no help and all you can do is guess your own best health plan because truly some of your help is dreadfully unhelpful,[granted some drs do try and some are kind,few are truly knowlegeable. I had one who was fairly knowledable but also told me there were no treatment centers around,not much hope. seems certain people seem gleeful to rule out xmrv[erv,esp....cant stand that person,now theres someone id like to see live with m.e. for just a week...no compassion and such a horrible arrogant attitude.erv you are not einstein] My thanks goes out to all the wonerful doctors and researcher who are trying to help [and if its not xmrv,are looking into what "it "is because let me tell you within a day or two your whole life and world changes.forever. I still try new things and yoga [if im not too sick] along with healthful eating,drinking lots of water...yes,these things help...and you are fored to do them if you want to function at all,but theres no lazziness here,just neverending struggle. im frustrated by the nasty tone, im disappointed by the arrogance, its too much to have this AND have to defend youreslf.

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16. Jose on September 29, 2011 11:11 PM writes...

Sigh. And the troll-fest begins. Again.

I think Pauling *did* go off on a crazy tangent, but reading around several years ago, many of the Pauling backed studies showed very impressive results with *injected* Vit C. Interesting in a theoretical sense, but far less so in a practical, public health vein....

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17. Morten G on September 30, 2011 1:08 AM writes...

I'm just happy that people with CFS aren't too fatigued to write really long comments on the internet.
Isn't there a truism about smart people being less inclined to give up false beliefs because experience tells them that they are always right?
I think the Lipkin studies of CFS are interesting. He has a proven track record of finding new viral pathogens. I am worried about the patient population though - it is likely to be highly inhomogeneous.

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18. Anonymous on September 30, 2011 10:57 AM writes...

I could be on my death bed and as long as I am able to move my fingers and type I would contintue to write"really long" comments regarding m.e.[too bad if it annoys some people, after all some people annoy me also]

Thanks to all the m.e. suffers who continue to speak out and tell it like it really is. Thank you Aidan Walsh for your posts,they are very informative,and its not easy to speak out in the hateful climate that seems to be present for people with m.e.

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19. jessica on September 30, 2011 10:59 AM writes...

I could be on my death bed and as long as I am able to move my fingers and type I would contintue to write"really long" comments regarding m.e.[too bad if it annoys some people, after all some people annoy me also]

Thanks to all the m.e. suffers who continue to speak out and tell it like it really is. Thank you Aidan Walsh for your posts,they are very informative,and its not easy to speak out in the hateful climate that seems to be present for people with m.e.

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20. jessica on September 30, 2011 11:00 AM writes...

I could be on my death bed and as long as I am able to move my fingers and type I would contintue to write"really long" comments regarding m.e.[too bad if it annoys some people, after all some people annoy me also]

Thanks to all the m.e. suffers who continue to speak out and tell it like it really is. Thank you Aidan Walsh for your posts,they are very informative,and its not easy to speak out in the hateful climate that seems to be present for people with m.e.

Permalink to Comment

21. Edward on September 30, 2011 2:20 PM writes...

I could be on my death bed and as long as I am able to move my fingers and type I would contintue to write"really long" comments regarding m.e.[too bad if it annoys some people, after all some people annoy me also]

Thanks to all the m.e. suffers who continue to speak out and tell it like it really is. Thank you Aidan Walsh for your posts,they are very informative,and its not easy to speak out in the hateful climate that seems to be present for people with m.e.

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22. qetzal on September 30, 2011 9:15 PM writes...

Very interesting new development here. Jessica/Edward/anonymous may not want to click through.

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23. Pete on October 1, 2011 10:19 AM writes...

@qetzal

If only they looked the same.

If only one was not an env and the other gag.

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24. Chronic Fatigue Sufferer on October 1, 2011 11:19 AM writes...

To be honest, I am quite relieved xmrv has been put to bed, it didn't ring true to me at all in the first place, but I understand it deserved rigorous follow up, and am grateful with how many teams/laboratories raced to confirm or discredit the hypothesis. I firmly believe the disease is endogenous and that it CAN be caused by psychological stress, particularly prolonged stress. I am not convinced this is the sole etiology of the disease. What I do find peculiar is that there are a number of actual biomarkers elucidated in the literature, albeit somewhat disparately, from elevated AGEPs (pentosidine), depressed serum ferritin, Retinol, zinc, magnesium and amino acid profile as well as links to RLS, Sjorgen's syndrome, polycystic ovararian syndrome, the last two falling under the heading autoimmune. I have long suspected a CNS etiology with all of the above abnormalities and maladies to be downstream effects, mediated most likely through neuroendocrine dysfunction. That damned hypothalamus, (could it be the most complex part of the most complex organ to have ever evolved? )

What I suppose I'm saying is that they're are already a few 'clues' and they didn't point in the xmrv direction unless the viral load was going to be truly profound.
Thanks as always for the excellent post.

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25. qetzal on October 1, 2011 12:58 PM writes...

@Pete,

Those two supposedly different blots are exactly the same. They are two copies of a single blot. Yet one was published in Science with one set of labels, while the other was allegedly presented by Mikovits at a recent conference with a very different set of labels purporting to be an entirely different experiment. IF that's true, it indicates extreme carelessness by Mikovits at the least. I emphasize IF, because I don't have any independent knowledge regarding the supposed conference slide.

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26. S on October 1, 2011 8:01 PM writes...

Of course it didn't ring true to you.

Because you think the disease is being really, really tired and a few other symptoms.

And that is what your disease is.

Please educate people that many people have died from a multisystem, AIDS-like neuroimmune disease, which is roughly described at minimum by Carruthers et al. 2011.

Otherwise the people for whom a retrovirus makes sense will keep dogging you and nobody will find better treatments for your really, really tiredness + a few other symptoms.

Get it? There are 2 diseases given the same name. Nobody benefits by combining them.

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27. S on October 1, 2011 8:03 PM writes...

The short version:

There is more than one disease given the same name.

A retrovirus is the ONLY GOOD HYPOTHESIS AT PRESENT for the severe one.

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28. MTK on October 2, 2011 11:31 AM writes...

@22 qetzal,

That link showing the two gels was damning. Not only did Mikovitz present the same gel as representing two different experiments, but even if it was an innocent slide mix-up, she should have realized that there was no positive control and that something was wrong.

Wow.

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29. Kathy D. on October 5, 2011 4:51 AM writes...

I don't know what happened with Judy Mikovits. I think she is extremely well-intentioned and wants to help people with CFIDS. She deals with many people who are ill with this disease.
However, she can't let go of her hypothesis.
There are some points in her behalf in her arguments with Whittemore-Peterson over their owning a company that tests for gammaretroviruses. It sounds like she was principled there.
I'm for waiting and seeing what Ian Lipkin comes up with. He is investigating 20-30 possible viral causes of this disease.
And about frustration for medical researchers--that is one thing. It is intellectual, it is professional. It can consume someone but it DOES NOT make one have to deal with an illness and its symptoms every single hour of every day of one's life, cutting off lots of things one wants to do, longs to do in the worst ways -- and instead gives almost constant muscle pain, exhaustion (not fatigue, that's absurd) where one can barely get to the front door, where one can't get the mail for a few days, where one can't stand up long enough to make a meal -- and there is no one else to do it.
So it's different! It's our lives.
Lots of scientists are finding real physical differences between people with CFIDS and healthy people in terms of genetic expression, brain matter from spectral EEGs, spinal fluid proteins.
This has to add up sometime -- and I hope it's soon.
More research helps. It's a good thing. At least some people are listening and doing something.
I hope Judy Mikovits can adapt and move in a helpful direction.

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30. Justin Reilly, esq. on October 7, 2011 6:42 PM writes...

Dr. Lowe,

Once again, as you know, the subject of your blogpost is the severe and common neuro-immune disease ME ("CFS") not 'chronic fatigue.' This is a harmful and unscientific elementary mistake, or intentional obfuscation you keep making. This is like calling Leukemia or MS 'chronic fatigue.'

Secondly, Mikovits has given up XMRV. That was a mistake made by Silverman, not her fault. She is saying other, closely related HGRVs are associated with ME. She has found this in the lab many times and it also makes perfect theoretical sense. It is not settled scientifically, yet of course, but should of course not be dismissed at all.

Why do you trot out Wessely's lies again when you've been informed they are such?

Yours,
Justin Reilly

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31. Del on December 11, 2011 12:41 PM writes...

"However, she can't let go of her hypothesis."

You don't when the hypothesis has not even been tested by any other lab but Lo and Alters.

Failure to clinically validate or replicate proven methodology is not testing a hypothesis.

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