XMRV and chronic fatigue syndrome: PI FAIL, revisited

@Moron #99: "ERV's not exactly the sweetest being on the planet but it's a bit much to advocate messing with her in real life."

You're right, of course. People: Please do not f*ck with ERV in real life! Srsly. But it does go to show that it's all for lulz until it's *you* being ripped on, by name, on the web. Perhaps Judy M feels equally creeped out by your ongoing vitriol, ERV - like why does this chick have some kind of vendetta against me (A** W** seems to). Remember that old golden rule! Maybe this can be a little afterschool special lesson for us all. C'mon, group hug. No? jk!

@ERV EVERYONE PAYS TO PUBLISH.

Like Mikovits had to pay to publish in Science? You cannot be serious. Your link is to a selective price comparison table of Gold Open Access journals, lol.

Gold OA journals account for only 15-20% of research all told, and only half of those charge author fees.

90% of authors don't pay. You would know this if you actually published any research.

What else are you an authority on?

erv-

Are you a 'pathetic excuse for a [future] scientist', 'mentally handicapped' or 'just plain stupid' because of some irrelevant, superficial indicia like that you 'just' went to Truman State, are 'just' a grad student at Oklahoma State or aren't knowledgeable about the whole sordid history of politics of 'CFS' posing as science? No, you are not.

I would like to judge you on your thoughts and what you contribute to science and society. Please give Dr. M and other ME/CFIDS experts the same curtesy.

@ERV EVERYONE PAYS TO PUBLISH.

Like Mikovits had to pay to publish in Science? You cannot be serious. Your link is to a selective price comparison table of Gold Open Access journals, lol.

Gold OA journals account for only 15-20% of research all told, and only half of those charge author fees.

90% of authors don't pay. You would know this if you actually published any research.

What else are you an authority on?

Wow, hadn't checked this blog for a while, and now I read Abbie (the author, "ERV") complaining that people are "threatening and intimidating a grad student" (i.e. her) in asking for a civil discussion, a request that has been made for quite some time.

Oh my. Poor little grad student, who uses her internet platform to call well-respected scientists and sick patients names in a string of foul-mouthed ad hominem attacks, and appears simply as a bully who has to have her own way, damn the evidence?

Really? Get a life, Abbie. Maybe this blogging thing ain't your cup of tea.

For the guy who wrote that people with ME\CFS were all mentally ill people who suffered suicidal ideation I am shocked at the absolute hatred in your post. It was vile and nasty.

I am a medical doctor who really didn't believe in ME\CFS. I knew patients were ill or thought they were ill but I didn't know why they were ill. There were a few I thought were depressed etc but others were patients who had been healthy, happy outgoing people that I rarely saw except for well woman check ups etc etc. Suddenly they were ill, listless etc.

But I still didn't believe in ME/CFS as such. I believed that they might all have different illnesses or that they may be atypically depressed. Then I got ME/CFS.

I am lucky as I have enough money to not have to work for a few years and I can rest as much as possible, afford to eat well and live a pretty stress free life. I do not have children either so my days really are my own.

I am not suicidal, or depressed neither do I have any OCD symptoms (except checking the gas is off a couple of times before bed lol). Yet I am still physically ill over eighteen months later. One thing I have found in really beginning to talk to people who have contracted this illness is just how many 'high acheivers' get it. Lots of sports people suffer with it and many business people. That doesn't fit with neurotic under acheivers moving from doctor to doctor desparate for a diagnosis that allows them to wallow in self pity.

The remarks by some alleged scientists on here are enough to bring the whole profession into disrepute. Surely a scientist without a scratch of humanity is a poor scientist indeed?

With regards to the psychologising of this disease - it is not just this disease - it is happening more and more with many illnesses. A patient of mine who had cancer was upset that she was told by a nurse that her attitude was not positive enough and that this would effect her outcome. This is now a pernicious belief within parts of the health service in the UK yet studies show no correlation whatsoever between positive mental attitude and recovery.

As more and more illnesses are facing being re-classified as somatoform (asthma, interstital cystitis, etc) then scientists should keep an open mind and keep looking into possible causes even if they face many dead ends. Not just give up on huge swathes of patients and label them as mentally ill. Shame.

I don't know who you are - oh I see - Abigail - if I was a future employer and I poked into this blog, as I'm sure they will, honestly I wouldn't hire you if you were the last grad student standing. Forget about the science,you can always get good postdocs - my guess is that your blend of arrogance, bizarrely cutting remaks and misanthropic tendencies will cause most employers to run far and wide - as they should.

Honestly I wonder - did you experiment on live animals when you were younger?

I don't care about your thoughts on Dr. Mikovits; you may be right, you may be wrong - but most people with CFS, depressed or not,unhealthy as they are, stressed to the hilt, chronically ill with no treatments in sight,dismissed by much of the medical profession - are in far, far better control of their emotions than you are.

Its kind of strange....

You flatlanders amaze me with your hand wrapped around your brain like that and clicking you boots and uttering your heil slogans to the gods of good science but then you turn around and unravel and offer yourselves up to the gods of psychobabble. These gods offer up a pot fermented in the juices of Freudian, Jungian, a dash of Rogerian, a little dash of Gestalt but finding the stew lacking some meat, these gods throw in a bunch of frontal lobotomies from years past and zap it with some good old electric shock therapy. Finding it lacking in some kick, they spice it up with some pop psych I'm OK, You're OK or should it be I'm not OK & Your Not OK, squeeze some Mars& Venus juices in it or some light energy therapy but then a thunderous voice from one of the gods speaks and all is still.

Here's what I want, throw in some CBT and GET. Booms the voice from the god Wessely but Wait is it from Prism? Yes, good because I only want the best, booms Wessely as he reads the recipe from NICE.

Wessely stirs the fermented pot. Wow, did you see those vultures fly out of the pot. Don't worry about them booms Wessely,that's what you call UNUM Vultures. They occasionally drop DSM manual shit everywhere. Search through the crap to find the latest psychobabble disorders so we can mix em in, he booms. Don't they need any scientific research for verification before they can come up with a disorder? Nope we just pull things out of the air and call it science and everyone believes the gods. We can make nothing into something and back into nothing. Booms Wessely.

Remember the good ole days when they call people with Parkinson, Diabetes, MS, Polio SIDS with psychiatric disorders? Then the gods of science came linking them to organic conditions. I mean what field day we had playing around in medicine without having to actually examine an organ at treatment? Psychiatry? You Bet! Making nothing into something and back into nothing squawks Wessely. We can't measure Serotonin, Dopamine, Noradrenaline but we can sure give you medication and we don't even know how much to give? We guesstimate. Is that science? To them it is. Heck, We don't take spect or mri or fmri scans. It is really psychobabble. Yes and the medical profession must bow down to us the gods of psychobabble! Nothing into something and back into nothing squawks Wessely.

Did you happen to see who else is speaking at that "conference?"

Discredited fraudster Dr. Andrew Wakefield is giving not one but two presentations, including (WARNING: turn off all irony meters before reading further: The Elizabeth Birt Center for Autism Law and Advocacy Keynote Address!

Rather-son tag-team quacksters Mark & David Geier will also present.

Then there's the session on "Homeopathy & Homotoxicology and Their Role in Reversing Vaccine Injury." (Although I admit, it makes a certain kind of sense to treat imagined vaccine injuries with imaginary medicines.)

Is Mikovits really that clueless, or does she consider this an appropriate forum for her work?

There's Karaoke.

I hope somebody from the CFS crowd covers Drimble Wedge and the Vegetations....

http://www.youtube.com/watch?v=Au9_vfx6t6c

That speakers list sounds like "Orac's greatest hits". Someone send him the transcripts.

After I recovered from the facepalm, I did a Google search for "XMRV and autism" because I hadn't heard anything about this. I discovered this marvelous quote from Mikovits (emphasis mine):

"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."

I have definitely moved from seeing her as a researcher with a cause to a researcher with a desire to get her name mentioned everywhere possible, no matter what bullshit she needs to cook up in order to get there.

Ah, I also found the abstract for her presentation:

Chronic fatigue syndrome (CFS) and autism spectrum disorder (ASD) share common clinical features including immune dysregulation, increased oxidative stress, increased expression of proinflammatory cytokines and chemokines, mitochondrial dysfunction and chronic active microbial infections suggesting an underlying immune deficiency may be involved in subgroups of CFS and ASD. We recently demonstrated the first direct isolation of an infectious gammaretrovirus, XMRV, from the blood of CFS patients. We have developed quantitative assays to detect XMRV replication and infection in cell culture. Moreover, we found evidence of XMRV infection in >85% of more than 200 CFS patients tested to date. These data implicate a role for XMRV infection in the pathogenesis of CFS. Because of the clinical similarities of CFS and ASD, we hypothesized that XMRV infection may also be detected in subgroups of ASD. This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD.

Which I translate to "I really wanted to get my name associated with autism too, so here's a whole buttload of baseless speculation for you."

ZenMonkey,

I saw the abstract, but hadn't seen the other quote about "why vaccines would lead to autism in some children."

Until now, I was still trying to give her some benefit of the doubt. No longer. This woman is a crank.

qetzal, I hear that. I also didn't want to write her off entirely, because as someone with CFS I do have hopes, and am trying to remain a good skeptic. (That is, keeping my mind open about XMRV, but not so open that my brain falls out.)

That she has thrown her lot in with the "vaccines cause autism" crowd has utterly discredited her with me, possibly permanently unless she turns her act around.

You all are funny with your half a batch of info and trying to make anything other than a sad sad cake. If you watch the show that quote is from, Nevada Newsmakers, you can see that Dr. Mikovits just gets enthused and starts speculating as to the possibilities, which as far as I'm aware is what makes a good scientist.

She just discovered a new human retroviral infection at the time and was pumped. She also likes to speculate as well, what a bitch. Thinking about things is for dummies, dontyaknow? Perhaps you happened to miss the part where she clearly stated "if I might speculate a little bit..."? The host is the one who brings up autism and Dr. Mikovits refers to unpublished work the WPI has already done which found XMRV in a 'significant number' of samples taken from autism patients. What a showboat! She also clearly mentions 'the hypothesis' that kids were fine until they got a vaccine, which is a pretty common statement among parents of autistic children, so she speculates on that hypothesis. What a fucking douche; a scientist who likes to think about things and conduct research.

"She just discovered a new human retroviral infection"

No, she did not discover XMRV.

"The host is the one who brings up autism"

And yet Mikovits is presenting at an autism conference.

Your apologia is entertaining, to say the least.

http://www.ncbi.nlm.nih.gov/pubmed/15566860

For the same reason you would be in denial that vaccines cause cancer.

From what I've heard, the prostate cancer study didn't prove XMRV was a human pathgen, but the Science paper did. Perhaps someone a little more educated on the subject can expound on that.

From your own post- "This presentation will update the status of XMRV research, show evidence of XMRV infection in ASD and discuss the implications of XMRV infection in the pathogenesis of neuroimmune disease including ASD". XMRV found in samples taken from autism patients= making a presentation at an autism conference. What nerve. She's also going to present at a haematology conference in Europe!http://www.bshconferences.co.uk/prog/prog_wed.htm#

Call tha po-lice, Dr. Mikovits be presentin' research at conferences!

Oh no! She's also collaborating with the NCI! How pathetic! http://ccr.cancer.gov/Staff/staff.asp?profileid=5518

Conducting research, publishing that research, and presenting said research at scientific conferences; what a bunch of bullshit. Well said, ZenMonkey, well said.

John, you are completely missing the point of my objection, which is this:

"This might even explain why vaccines would lead to autism in some children..."

There is no link between vaccines and autism. She is now in the land of Wakefield with that statement. Of course it's only speculation, as you say...because she's talking about a problem that doesn't exist! On the basis of her one (as yet unreplicated and uncorroborated) study, she is now playing to the antivax crowd.

Where exactly in the abstract did you see anything about vaccines? In an interview she speculated on a hypothesis; big fucking deal. Again, some people like to think about things. From what I've seen her paper is on XMRV and autism, which looks to be what she is to be presenting on at this conference.

"She also clearly mentions 'the hypothesis' that kids were fine until they got a vaccine, which is a pretty common statement among parents of autistic children, so she speculates on that hypothesis."

The issue of vaccines and autism, CFS, etc. are somewhat to relatively prominent hypotheses. She speaks to the hypothesis of vaccines and autism, clearly stating it as such. Fuck anyone who says that the issue with vaccines and illness is solved, over, done, etc. There's plenty of reasons why vaccines might not be totally healthy, and fuck anyone who labels people who either find fault or merely discuss potential faults with vaccines as 'antivax nutjobs'. Vaccines are a primary method of introducing illnesses in laboratory animals such as EAE, yet vaccines are just a-ok in the human population and produce no illness whatsoever. Just like MLV's don't infect humans, right? Everybody knows that!

What some people seem to be forgetting is that basically every single advance, not only in medical science but in human history itself, came as a result of basically everybody else either being wrong or just plain ignorant of the subject, which is the very reason why it's labelled an advance. An advance establishes new ground. Retroviruses themselves weren't thought possible to exist. The retrovirus from which XMRV came was thought not to be able to infect humans. Do you realize there are probably more examples of the medical establishment being wrong that there are of it being right? The entirety of the medical establishment has a long and convoluted history of having no fucking clue what it is talking about, and yet you and so many others expect people to believe that somehow on the subject of this and other as yet undeciphered illnesses the medical establishment is somehow magically on top of the ball. In case you haven't noticed, a significant proportion of this same medical establishment doesn't even believe the disease you and I suffer from(CFS) exists, either, so that in itself should tell you how far you can trust these 'experts'.

"Ten years in the scientific wilderness is a long time; few have had to bear the silence of their colleagues for so long. I can remember meetings in the 1960s when Howard[Temin] would present his latest data supporting the provirus notion only to be greeted by either skeptical questions or quiet, polite disbelief."
http://www.ncbi.nlm.nih.gov/bookshelf/br.fcgi?book=rv&part=A4

Well, John, your calm, reasoned rhetoric does certainly invite further discussion, but I think I'll leave that to someone with a more masochistic bent. One last clarification:

"Fuck anyone who says that the issue with vaccines and illness is solved, over, done, etc."

Check my previous comment. I said "autism," not "illness." Again: no link between vaccines and autism. Have fun.

"Vaccines are a primary method of introducing illnesses in laboratory animals such as EAE, yet vaccines are just a-ok in the human population and produce no illness whatsoever."

We measure the rates of adverse reactions in human populations that are associated with vaccines. So your speculation is uneccessary (got more than one example of vaccine-induced animal illness?). Instead we can refer to the data form population-wide human surveillance. Don't forget, vaccines are tested for safety prior to use and some have been withdrawn. So they are not assumed to be safe automatically.

A scientist should publicise her results, not her hypotheses.

Fuck anyone who endangers public health without a good reason.

This is so sad. John, Mikovitz is presenting at an antivax event. She's at the very, very least giving credibility to Wakefield and McCarthy. Of course, she isn't just doing that very little bit - she's also going to "speculate" for the attendees, playing on their preconceptions. This is despicable behavior from a PI and the 'final straw' for me. She's irredeemable without drastic and public changes.

Not that you would probably care, since you seem to be just fine with people claiming autism has anything to do with vaccines. These people aren't 'wondering' about potential effects of vaccines, they're making utterly unsupported claims and making strong insinuations. It's why they're attending an antivax conference rather than, you know, publishing their speculations or actually working on seeing if they have any basis in fact. Mikovitz has nothing to offer parents with autistic children. Nothing.

For those (one guy?) too uninterested to get why even just that one quote by ZenMonkey is utterly irresponsible, I have an example.

Let's say we have a different PI who says this: Let me just speculate for a bit. This could explain how antibiotics would cause brain damage.

All by itself, it's awkwardly phrased and imprecise. Are they speculating about both the explanation and whether the brain damage is caused by antibiotics, or just the explanation? Well, let's add the context: they're joining a circuit of speakers and events that routinely try to claim an association between antibiotics and brain damage. In fact, several of the speakers' actions directly led to the underuse of antibiotics, resulting in the deaths of several people as well as serious illness for others. Most were children. None of this has any basis in fact, yet this PI is giving such misleading presentations, throwing themselves in with a group directly opposed to public health.

I would hope that most people would find the PI's actions damning.

Crank magnetism, straight up.

John: Knock it off. Any attempt to write off Mikovits' comments as idle speculation is blown out of the water by her participation in an antivax/woo conference. You don't idly speculate and then give speeches about it to those who desperately want to believe it. She either believes it too, or wants others to believe it.

But then, her idle speculation should have evaporated with a couple seconds' thought in the first place. As in: "Hmmm...what ELSE ramps up an immune response?" Or how about: "Hmmm...IS there an association between vaccines and autism to idly speculate about the causality OF?"

John you are a dumbass. EAE creates antibodies to MOG35-55, a glycoprotein in the myelin sheath. So its a vaccine but designed to incite an autoimmune response. Obviously it causes demyelination and MS like illness, that's kind of the point. Likely if I incited an immune response to other innate animal proteins I could similarly cause illness. Since vaccines incite an immune response to viral proteins that tend not to be expressed all that much by human cells your comparison with EAE is entirely invalid and frankly laughable.
Try again fuckwit.

John at #8-etc

"You all are funny with your half a batch of info and trying to make anything other than a sad sad cake."

Dismiss the meandering yet ultimately advancing path and past of medical science...if you will.

Laud an opportunistic bargain basement Rasputin of a Reno real estate dynasty as the reincarnation of Snow, Lister and Marcus Welby all rolled into one....if you will.

Shout "fuck anyone who..", throw roundhouse blind punches, make bar room generalizations, pejorative yourself into a frenzy and froth with anecdotes of your personal suffering...if you will.

But do not ever talk smack on the cake.

Cake never did anything to you.

Leave cake out of it mother fucker.

I think Mikovit's comment in the press was just idle speculation. But she seems to do it a lot, making comments in the media which she really shouldn't.

In a way, I like this, as it lets us see how she's thinking and where she's a bit nutty - I find her lack of self-awareness kind of endearing too. On the other hand, such speculation can end up misleading those who instinctively think anyone claiming to be a 'scientist' must be making only proven claims supported by all the evidence. The vaccine debate has been rightly politicised, as a lot of parents are scared of vaccines and putting their children at greater risk by not vaccinating them.

I don't know anything about autism - but even if there was good reason to think XMRV was linked to autsim it seems strange for the WPI to be moving on to this while their work on CFS is looking so tenuous. They're not timid, and their lack of caution, even as three studies have come out showing no link between xmrv and CFS, seems a bit crazy.

I've seen lots of things linking autism and CFS over the years, but have tended to dismiss them as being primarily marketing driven. If you want to sell a quack cure to desperate patients willing to try anything - these are good groups to go for. It would be pretty funny if the WPI was just a scam organisation who'd managed to get a paper in Science and are now out to fleece a load of ill people.

Saying all that - if a flood of papers replicating their work on XMRV and CFS came pouring out, none of this would matter.

Amy, you are one pathetic excuse for a "scientist". Are you just insanely jealous of Mikovits or hoping to get hired by Merck for more phony avian/swine/etc, etc,/flu "pandemics" propaganda? Wakefield is not the fraudulent huckster - the vaccine makers are. Recently found in vaccines: unrelated, unnecessary pig DNA, that they say isn't harmful. Right! It's all about the money; create a fear and sell the antidote. Public health? In a pigs eye!

oregano@#22

"Amy, you are one pathetic excuse for a "scientist"."

Who is Amy and why are there scare quotes around scientist?

Seriously, nothing in your post makes sense.

My wife's best friend is the power lobbyist for PhRMA (Pharmaceutical Research and Manufacturers of America). If ERV wants a private sector gig I guess could make a call.

My drinking/dominoes/pretend to be hunting buddies are Monsanto execs so behave yourself or the black helicopters will show up and rendition you out of your mom's basement.

*sigh*

It's a new McCarthy era.

OMG YOU GUYS PIG DNA!!!!!! I HEARD THERE WAS BEAR DNA TOO THEIR TURNING BABBYS INTO MANBEARPIG!!!!!11!!1

LEAVE ANDY ALONE!!!!!!

Seriously...what?

All you monkeys go back to the jungle and let scientists do their work.

This pig dna in the vaccine crap is gonna get real old real fast.

gf1,

Sorry, but I don't think it's fair to pass off Mikovits's vaccine comments as "idle speculation." There's no reasonable scientific basis to link vaccines and autism. On the contrary, multiple large, well-designed studies show that vaccines are NOT detectably linked to autism.

This woman is supposedly a scientist, with a professional interest in autism (based on the claimed association with XMRV). Is it really possible that she's unaware of those studies? I find that hardly creditable. It's much more likely that she's consciously pandering to the anti-vaccinationists. Either that, or she's an anti-vaccionationist herself. Why else would she be speaking at a conference sponsored by proponents of the scientifically discredited autism-vaccine link? Why is she sharing a stage with the likes of Jenny McCarthy, Andrew Wakefield, Mark & David Geier, & David Kirby?

She's a crank, pure and simple. If WPI wants to be a serious, data-driven research institute, they should get rid of her right away.

ZenMonkey: "Which I translate to "I really wanted to get my name associated with autism too, so here's a whole buttload of baseless speculation for you.""

No, it means "My woo-marketing patron has identified the autism market as a target-rich environment of stooges willing to spend lots of money on quackery."

#26

"Posted by: Prometeus " ???????

Heavens to Betsey! I've been spoofed.

Here I spend all day watching episodes one and two of season 5 of the Golden Girls; Sick and Tired, so that I can speak with authority on the subject of Chronic Fatigue Syndrome only to be shabbily treated.

What an affront to the spirit of internet civility.

Harumph.

@ qetzal

I don't know. Mikovits has always seemed willing to say what she thinks about subjects she doesn't know much about. I saw some video of her answering audience questions, and she just jumped in (with provisos, but even so, it was certainly not how I'd have responded).

I think it's quite possible she just answered a question based on her own parital memory of speculation that vaccines could be linked to autism. I think that it's bad for her to have done this given the cultural climate in which she was speaking, but I don't think that it means she is being intentionally dishonest or that she is a commited anti-vaccinationists. At the point she made this statement she may not have only just started to look at autism.

There are a number of things about the WPI which give us reason to be sceptical about them, but I think it's all still quite uncertain. I wouldn't feel comfortable classing them as cranks at this point. The most troubling thing about them (to me) is their apparent lack of concern about the three XMRV/CFS studies which have found no cases of XMRV infection - that Mikovits shoots her mouth off about things she knows little about is far less significant.

It's certainly not impossible that the WPI are being intentionally fraudulent, although if this is the case they've gone about it in a strange way.

Actually... in addition, the linking of XMRV to autism at this point rings alarm bells to, but seeing as I know so little about autism, this could well just be a reflection of my own prejudices.

gf1,

Just to be clear, I don't classify WPI overall as cranks, nor do I think they are being intentionally fraudulent.

But Mikovits is definitely a crank (IMO), and she makes WPI look bad. It's not just her speculation on vaccines and autism. It's also this conference she's speaking at. Not to mention her reactions to the contradictory XMRV studies (including alleging fraud by Erlwein et al!).

One act of crankery might be forgiven, but hers is a consistent behavior pattern.

qetzal and gf1: I just sent a polite but concerned email to the WPI asking if they could clarify Mikovits' comment as well as the reason for her participation at AUTISMONE. I'm very interested in the response (including whether I even get one).

Jon H: Probably another very good translation.

gf1:

What qetzal said.

Mikovits' participation in this conference goes well beyond idle speculation. And while to my knowledge there isn't direct evidence for this yet, it seems plausible that she's shopping around for a disease for XMRV to cause and found a credulous population ready to support her. Whether she believes the link herself or is merely exploiting it for possible research support is almost academic; either way, she should know better.

On a personal level, there's something I like about Mikovits.

I like the fact sh so totally failed to spruce herself up for this magasine's photo: http://www.unr.edu/silverandblue/archive/2010/winter/Pages%20from%20NSB…

I like the fact she's seems so willing to say whatever's on her mind when she's asked a question, even though I also think it's irresponsible, and certainly makes her look bad.

I like the fact she seems so lacking in self-awareness and savy.

I think I feel an emotional desire to defend her in the way you would the school nerd when they're being attacked. This could well all be utterly misplaced, and maybe she's a cynical master-mind manipulating desperate and needy patients. It's certainly a bit unreasonable for me to interpret her actions more favorably because she didn't bother to glam up for a photo-shoot - but there we go. We're all a bit nuts in our own way.

@jaranath

I dont' really feel able to comment on the autism stuff. I don't know enough about it. It could well be that speaking at this conference requires you to be a self-confessed quack - I really don't know. I've tended to be dismissive of any talk of links between CFS and autism, but because of this instinctive scepticism I've never actually taken the time to try to understand why some argue that there is a link.

I certainly think it's possible that the WPI is now just targeting desperate patient groups, but her presentation's abstract could be entirely reasonable. I don't feel able to judge.

gf1@#36

"I like the fact she's seems so willing to say whatever's on her mind when she's asked a question, even though I also think it's irresponsible, and certainly makes her look bad.

I like the fact she seems so lacking in self-awareness and savy.

I think I feel an emotional desire to defend her in the way you would the school nerd when they're being attacked."

I get that completely but be careful.

There was a lot of conversation about this very thing around the JREF ten years ago and how the shabbier, rougher or more ridiculous the Psychic was the more effective they were at selling cold readings.

We were calling it the "Spivey Effect". People were more willing to swallow the snake oil because they believed they couldn't possibly be fooled by somebody so improvised or just plain silly.

This is Spivey:
http://www.garyspivey.com/

It tends to be a retreat of people with rationally indefensible positions, like McCarthy's Mommys=Experts shtick.

There are some non-quacks speaking at the conference, but mostly it is a quack-fest.

@ Prometheus: It's a danger. But things seems so uncertain now, and I think it's generally best to give people a bit of leeway for wackiness.

I think it's most likely that Mikovits and the WPI are honest researchers who have somehow made a mistake in their work, but got sucked in to believing their own hype. CFS is a difficult disease to produce solid research for, so there will always be some genuine reasons for dismissing papers you disagree with, and it seems quite normal for academics to get caught up in their own initial interpretations of their results. But I still think there's a significant chance that they might have found something important.

At least with XMRV there really should be enough objective evidence that we'll be able to find out fairly conclusively one way or the other. If their testing for XMRV is found to be unable to distinguish between blinded samples from CFS patients and healthy controls, but they go on pretending otherwise, then we'll know that they're kooks.

The link between prostate disease and autism is similar to that with bowel disease. It's only obvious if your brains in your arse.

I hope somebody from the CFS crowd covers Drimble Wedge and the Vegetations.

Best movie ever.

It's disturbing for a legitimate scientist to associate with conspiracy theorists. I cannot read minds and can not know what inspired JM to step into that trap.

That shouldn't distract people from looking or more definitive information about CFID and also XMRV.
At least to people without the tools to dissect each of the recent studies it isn't clear whether

- XMRV is or is not present in most CFID cases
- XMRV is or is not present in the general population
- XMRV is or is not associated with prostate cancer
- Something different from but close enough to XMRV to show a positive lab result exists in CFID cases
- None of the above, unknown pathogens likely play a role in CFID but have not been identified.

Finding the answers will yield considerable knowledge about how the immune system works. It would be pretty dumb to let a personality and politics circus end a scientific effort to light up a dark highway in medicine.

> I have definitely moved from seeing her as a researcher with a cause to a researcher with a desire to get her name mentioned everywhere possible, no matter what bullshit she needs to cook up in order to get there.

I think you are misreading her. She is obviously mildly dorky (yup, takes one to know one). I think she can be a touch naive or unworldly, or over-gentle. Otherwise she would at least realize that all y'all consider this vaccine-autism stuff to be anathema, and that it is Machiavellianly speaking a terrible idea to be associated with it. (I haven't read any pertinent lit myself and have no opinion, other than being aware that the question is well-amenable to study, and thus the scientific consensus is pretty likely, or quite likely, to be true).

She might be a little impressionable, and I suspect she was influenced by A*** W*** having had a relapse upon receiving immunizations required for her to enter or re-enter college. (A.W. is of course the daughter of the benefactress of the WPI.) She has pointed out that replication of A.W.'s lymphocytes after vaccination might well permit increased replication of XMRV. This is certainly plausible. I'll remain agnostic on whether it is a good idea for Mikovits to theorize about this publicly.

Honestly, I don't really care what she dabbles in. I don't think it is *good* for her to bolster this Jenny McCarthy sort of stuff which is probably just a bunch of loonery. But on an emotional level I don't really care, being a bitter chronic sickie - nor do I care very intensely whether people think they need to badmouth her rudely in order to save the precious children. I'm sure most of you know that Newton was more interested in alchemical mumbo-jumbo than physics. Then too, Pauling is probably the most accomplished American scientist or intellectual ever, and you know how he ended up - pushing vitamin C as a cancer treatment. The ideal creative original personality may not necessarily always be the lean epistemic machine who can ruthlessly deracinate virtually every last false idea from his mind. Maybe you don't even disagree with that much. But at any rate, she is much more likely to be a partial naif, a bit hyper-open-minded, and so on, than to be some kind of cynical publicity plotter who wants to extort NIH using lightly armed mobs of autism parents. Which I wanted to point out just for the heck of it.

My best to her and to mankind, etc, but I mainly care about XMRV. And there is NO QUESTION that it has now been PROVEN to be the cause of CFS. Wessely said it's not, therefore it is. Just kidding. I realize of course that the odds are now somewhat against XMRV causing CFS, at best. Yet hope abideth.

> But Mikovits is definitely a crank (IMO), and she makes WPI look bad. It's not just her speculation on vaccines and autism. It's also this conference she's speaking at. Not to mention her reactions to the contradictory XMRV studies (including alleging fraud by Erlwein et al!).

> One act of crankery might be forgiven, but hers is a consistent behavior pattern.

Why are you counting autism crankery and participation at a crank autism conference as two distinct crankifications? I question your method, sir. And getting all mad at your enemies is not crankery, it's commonplace. You know, read between the lines, in any bitter science dispute. The hate is intense, dude. So, assuming for the sake of argument that she's right about XMRV, she'd be no crankier than Pauling.

> They're not timid, and their lack of caution, even as three studies have come out showing no link between xmrv and CFS, seems a bit crazy.

Logically sound in form sir. And yet I think you are not bearing fully in mind that it's an XMRV problem, not a CFS problem. The data on Mr. X in both normals and prostate cases are just as fubar as the data on him in CFS. Obviously XMRVirology is yet languishing in its barbaric stone age (which is not to imply that it's necessarily ever going to get any better).

Why are you counting autism crankery and participation at a crank autism conference as two distinct crankifications?

They are two separate examples of crankish behavior. gf1 wanted to argue that TV interview, where she talked about vaccines and autism, might just be "idle speculation." And if that was the only example, I'd agree to give her a pass.

But now she's speaking at a Generation Rescue conference. So she's either incredibly naive for a scientist with a professional interest in autism, or she's a crank, or she's willing to cater to crankery if it advances her own agenda.

Take your pick.

P.S. Pauling was a crank when he pushed all his orthomolecular medicine crap, too, and I bust on him just as much.

XMRV, it's gonna be me and you, girl
They're gonna see me and you, girl

Run your Env through my dendrites
I'm on top of the world

And TNF-a wouldn' have nothing on you
And type I interferons can't believe that it's true

They pile up like cold conjectures
Screaming to their blunt effectors
In the eye of their storm
You're a lavender worm
With your trundling DNApol
Slowly re-arraying all

Has anyone pondered whether vaccines could precipitate autism in babies who are already developing it anyway, or going to? If so, the anecdotes about babies being fine until injections might be true (I don't know how credible they are in themselves). At the same time, empirical evidence on vaccines not increasing the prevalence (or severity - ?) would of course also be true.

@Moron #49,

Yes, people have speculated about that. I've never seen credible evidence to support it, but it's impossible to rule it out.

People have looked for evidence linking vaccines to autism over all, and they find no evidence for such a link. But we can't rule out a link between vaccines and some small and currently unrecognized subset of autism cases. In order to test that, you'd have to have some way to distinguish that putative subset from the rest of the autism cases, so you could study it specifically.

The problem with that is that there's no good basis to pursue such links. The whole reason to blame vaccines in the first place was the apparent temporal relation between when kids get vaccinated and when they begin to show signs of autism. But research has failed to find a link. Moreover, it's been shown that parents often 'misremember' that their child's autism symptoms began right after a vaccination.

In other words, the temporal connection doesn't really hold up either, except in the really broad sense that kids generally show symptoms of autism beginning around 2-3yo, and kids also get vaccines during their first 2-3 years. But a lot of things happen during a kid's first 2-3 years. They get weaned onto 'real' food; they start watching TV; they get their first colds; etc.

So if vaccines aren't linked to the majority of autism cases, and if the claimed close temporal link doesn't usually hold up anyway, why should we continue to focus on vaccines as a possible cause of a hypothetical small subset? Isn't it better to continue looking for the cause of the majority of cases?

I don't think those anecdotes are too credible...scratch the surface and you find dates are fuzzier than reported, the parents were already primed to fear vaccines, the reported reactions aren't as specific or documented as implied, confirmation bias, etc. It's also quite a shrunken gap to cram a vaccine role into. But to the question itself, I don't know if research has looked specifically at that idea or not. But I would think it ought to show up in data on age of incidence. At least that's how I'd look for it. And I think (?) that data is available. I wonder how it would be affected by the confounders.

Moron @#44

"She might be a little impressionable, and I suspect she was influenced by A*** W*** having had a relapse upon receiving immunizations required for her to enter or re-enter college."

Aaaaaaaand there you have it.

Mikovits is goal oriented to the loss of all objectivity.

This makes her behavior unseemly and her claims at least subject to being viewed with a jaundiced eye.

This remains unchanged if tomorrow while fiddling with the Transmission Electron Aberration-corrected Microscope she got from Annette for Christmas, a virus in a g string playing a tune on the alto sax called "I've got those mean and nasty chronically fatigued blues" hoves into view.

Her entire career hinges on being able to cure cfs in one person.

Her benefactor demands results in the same way his clients demand results for his lobbying efforts and his partners for his luxury real estate schemes.

Harvey has thrown piles of his own money at Mikovits and used political muscle to extract over 19 million from the State of Nevada and millions annually in federal grants. Why? To determine cause? To refine a scatter shot clinical definition?

Nope.

While the line forms out my door for wills, trusts and advance directives and I am conducting the kind of triage where I say things like "Unless you are stage 4 I couldn't possibly see you until the end of next week." a gazillion tax dollars in a busted economy are pouring over the general malaise of a 32 year old socialite.

Don't get me wrong.

I think it would be nifty if Mrs.A*** W*** was cured of her syndrome and freed from the burden of Ampligen, homeopathic medicine, yoga, meditation, nutrition etc. and she could perhaps sponsor a Cris-Craft in Concours d'Elegance this year or whatever the Reno idle rich do to fill their days.

If everybody else was incidentally offered said cure that would be even niftier.

A cure extorted from a researcher who wakes up every night sweating bullets because she dreamed A*** got the hiccups and she had to go back to screaming at the Res-bar supply guy over bev-nap orders seems an unlikely scenario.

Aye there's the rub of familial patronage.

There is a distinct possibility that Judy is being battered between competing complex personalities.

She has a patriarch who demands results (Cure her!) combined with a matriarch and a scion who have spent twenty years defining themselves as respectively, the support system and victim of a dread disease.

While she waits (and waits)for her results to be reproduced she is as aggressively jumping the gun in defending her study as she jumped the gun on the issue of causation and mounting a pulpit in front of the most critically impaired audience since well....

http://www.youtube.com/watch?v=LQqq3e03EBQ

I'm betting that bartender gig is staring to look better and better.

I definitely agree that normal people can come up with bunk anecdotes and the like pretty frequently. While this is pretty obvious prima facie, one can also look at data on the unreliability of eyewitness testimony in court, etc.

> This makes her behavior unseemly and her claims at least subject to being viewed with a jaundiced eye.

Well with like 25 labs already in the game, it's really only what they find that matters. When and if she publishes another paper saying "wouldn't you know! I'm *still* finding it!," that won't make any difference if 20 other labs found nil.

Don't forget, Science News - admittedly an interested party since it was Science that published her paper - said both sides know of forthcoming work supporting their own side.

source: http://news.sciencemag.org/sciencenow/2010/01/06-01.html

So allegedly there is Something out there, though I wouldn't bet my life on said allegation. As far as I know Science is the only public source for such information (and I don't know of any private ones either, not that I would).

> While the line forms out my door for wills, trusts and advance directives and I am conducting the kind of triage where I say things like "Unless you are stage 4 I couldn't possibly see you until the end of next week." a gazillion tax dollars in a busted economy are pouring over the general malaise of a 32 year old socialite.

I think she is pretty much prostrated, and I doubt she socializes in person very much - note that she was unable to attend or finish college. But that's not even the point - those who fall very ill find that the ability to do stuff or not means little, compared to whether you simply feel OK or awful (perhaps awful enough to want to die). This is borne out in research. To the extent that you can accurately measure someone's happiness by just asking them, the handicapped are no less happy than they were when bodily intact. In contrast the pained are markedly unhappier than controls.

Cancer primarily attacks people who are 45+ and especially 55+. A*** W*** got sick at like 15 or something. Someone who got terminal cancer at 60, or even 40, probably got a sweetheart deal compared to her. Personally, while I'm now much better, indeed rather near normal, I was in hell for two years starting at age 22. I spent like 6 hours a day just contemplating suicide, every single day, and just reflexively imagining spurting blood whenever I saw my wrist. I did not have enough attention and focus to stop this train of thought. I could only halt it for 30 seconds at a time tops, except when I was feeling relatively well. You sound like a man who has probably gotten extremely wasted at least a few times in life, so I'll just say it was like a very severe hangover except with much worse mental stuff. But it never ended (until it did), and for all I knew I would be like that every day til I died.

Moron @#55

She was 11-12.

Same age I was when I got out of my leg braces.

Protip 1: Don't expound your jolly cripple theory anywhere near a rehab center unless your suicidal fantasies involve death by sodomy with a Fetterman forearm crutch.

Protip 2: My trusts are not for people that are dying, they are for the ten year olds watching mom scream in agony at the grocery store when she put her hand in her pocket before she remembered the radiation made her fingernails fall out.

I don't have less sympathy for you than anyone else who is extremely ill but don't have the expectation that my sympathy should be greater.

Or that Judy throwing fits and playing Rasputin scores points.

One of my coffee buddies has CFS, or rather he did. He put on his pajamas, walked out into the back yard and blew his brains out last year.

He would have made a good spokesman or maybe you would.

Cause it aint conducive to appropriate public recognition of your illness to have it carried to its royal wedding by a team of private medical professionals in a ampligen studded palanquin chair.

Your wikipedia is showing, Prometheus.

> I don't have less sympathy for you than anyone else who is extremely ill but don't have the expectation that my sympathy should be greater.

Bah, didn't ask for it to be. It seemed like you were saying CFS didn't merit research compared to cancer, and I was reacting to that. But anyway, twice as miserable *is* twice as miserable, though the experiences aren't measurable. And getting sick as a kid is worse than in one's 20s which is worse than in one's 40s, ceteris paribus. As you seem to agree. At least you can always kill yourself, at worst - if you're sane, anyway. That's one of the heart-warming features of the universe.

I was somewhat wrong about the jolly cripple thing, which is pretty weak of me. (But maybe my name, which is not meant sarcastically, partly indemnifies me.) They are thought of as being "surprisingly happy," but *not* close to as happy as controls on average. This paper showed lower happiness for chronic osteomyelitis patients (painful bone infection) than certain amuputees:

"Quality of life assessment of patients with posttraumatic fracture nonunion, chronic refractory osteomyelitis, and lower-extremity amputation."

Another paper, "The disability paradox: high quality of life against all odds," states

"we note that 54.3% of the persons with serious
disabilities in the study reported that they had an
excellent or good quality of life. These numbers com-
pare with 80-85% of persons with no disabilities who
report they are satisfied or very satisfied with their
quality of life in various national surveys in the 1990's
(Leitman et al., 1994)."

Though you have to wonder if the figures are exactly comparable.

> He would have made a good spokesman or maybe you would.

My social acumen is around the 20th percentile for the US population, as best I can tell. I would probably make a public faux pas before long.

HEY ALL YOU PEOPLE IT IS OBVIOUS VACCINES CAUSE AUTISM IT IS PROVEN BY ARTICLES IN MEDICAL HYPOTHESES THE MOST IMPORTANT MEDICAL JOURNAL OF OUR TIME. JUDY MIKOWITZ SHOULD PUBLISH IN IT MORE. JUDY WE LOVE YOU AND YOU CAN SERVE ME A DRINK IN YOUR NEW BAR ANY TIME!

Whatever. You're badmouthing one of the most accomplished and beneficient people alive - maybe. If she turns out to be right about XMRV in CFS and autism, you'll seem like kind of a jaggoff in retrospect, nein? We'll know soon enough. I still give it 33% odds. Again, note that

1. XMRV findings in prostate patients and normals are maximally contradictory so far - not just the CFS findings. It's an XMRV mystery, not a Mikovits-only mystery.

2. Cleveland and NCI had her back on the Science results - they replicated.

Why only attack Mikovits, what about these two http://www.youtube.com/watch?v=RWOWvdiXiSE. No need to focus on one person.

Moron-- ...one of the most accomplished and beneficient people alive...

Not on the planet Im living on, whether shes 'right' or not. Could you even name another scientist?

LM--
1. I have already written about XMRV and prostate cancer.

2. Silverman didnt go into hysterics and accuse other laboratories of fraud when they didnt find XMRV in their cancers or their RNaseL connection.

3. Silverman is not speaking at anti-vax conferences.

I have no problem with Dr. Silverman, so what exactly am I supposed to 'attack' him for?

What of the video? and the following bits.

XMRV discovery and linkage to Prostate Cancer & Chronic Fatigue Syndrome.
Also investigated if it may be also be associated with CFS.
We identified XMRV in 67% of CFS patients.
This exciting discovery may open the door to new diagnostic treatments, and ultimately lead to a vaccine that prevents diseases caused by this virus.

Sandra Ruscetti is to speaker at this Event http://meetings.cshl.edu/meetings/retro10.shtml

1. Silverman was a collaborator in CFS XMRV study
2. Fraud is an enoumous problem in CFS, psychiatric research. (Reading papers will demonstrate this - The Wessley school) Try Magical medicine, by Prof Hopper.
3. Wessley collaborated on the first UK study.
4. What if someone who disagreed with the vaccine/ autism theory presented at the anti-vax conferance. Would that make you feel better? What exactly makes the conferance unworthy? Is it your assumptions? Mikovits is also presenting to the British Heomotology Socitey. If she presents the same information there, does that make it more valid?

Sorry, should have read British Society of Hematology. (I will blame the broken hand)

There aren't many recent achievements in medicine of this magnitude, again if she's right. I'm speaking on a purely medical point of view, and only of things that have come to fruition clinically. The major advances in transplantation were decades ago. All very important achievements in infection and antimicrobials were decades ago, except the HAART stuff and H. pylori: beyond those two you're going all the way back to streptomycin, PAS, and izoniazid, and then penicillin. Endocrinology: decades ago. Anti-inflammatories: decades ago, except anti-TNF Ab.

I leave out of account surgery, which I know nothing about. Not very knowledgeable about cancer either. The cervical cancer thing is fantastic but it's not an abundant disease. It's no footnote either. I'd place it in the meso range.

Obviously a lot of luck goes into most advances unless one is Isaac Newton or something, and a whole lot of knowledge from prior workers goes into it too. But a win is a win. The point of science is to advance. Just to have the most formidable knowledge of what is already known, is not in itself the point, and is not what I'm claiming may turn out to bring immortality to Mikovits' name. I'm sure you're aware of the hilarious beliefs of Kary Mullis, yet he's not exactly unaccomplished (though I don't think he invented the actual concept of PCR int he most abstract sense).

Newton was pretty lucky to have that apple fall when it did. I've sat by many an apple tree and not seen one fall. Lucky bastard.

> I'm speaking on a purely medical point of view, and only of things that have come to fruition clinically.

Eh, since her thing hasn't come to clinical fruition itself, I guess my post has a little logic problem. Still, you get my point.

And how many definite major disease etiologies have been uncovered in recent decades? HIV. H-py. Cervical cancer (meso prevalence - not sure when discovered). Cystic fibrosis and CFTR, I think (a minor disease - minor prevalence, I mean). Borrelia burgdorferi (not an important disease, as far as we know).

So HIV and H-py are the only big ones I've got. I hope I don't seem like a jerk for rating the importance of various diseases. Public health people and big jocks at NIH do it: they measure in terms of DALY (disability-adjusted life years), or something like that.

There's that super-hydration treatment for cholera. That's probably important. But my mind was on things that affect our world here in the West.

> beyond those two you're going all the way back to streptomycin, PAS, and izoniazid, and then penicillin.

And polio in between. Those were the decades.

Fuck all of you and if you don't stop talking about me Im going to sue all of you for defamation of character.

The previous comment will be reinstated if said user emails me proof if their ID/dox.

Otherwise, *frowny face* at someone who used a real name as a handle for lulz... Not funny when dealing with CFS True Believers.

But... lulz.

My blog readers, you will have to forgive me.

Though I take pride in the free speech allowed on ERV and never censor/edit comments, especially reasonable ones, A*** has asked that her name be removed from the comments on this post.

No, readers, I have not sold out.

I have sold out for lulz*.

And that I shall never apologize for.

*lulz forthcoming tomorrow-- I got a presentation at 8-fucking-15 am tomorrow, so Im going to bed now.

This has to be the most disgusting blog I have read. Tall poppy syndrome for sure. I'm glad this research is not in your hands.

Yeah, Abbie! It's DISGUSTING!!! how you demand evidence and don't just through patients to the wolves of whackos and woo merchants and random internet fuckwads like mgb!

Shame on you!

Tall puppies for you!

I think a lot of people should keep their opinions to themselves. Personal attacks are not needed, so keep your beaks out. Let the scientists involved get on with discovering the truth. Shame on you all for making fun of ME patients, disgusting!

I have complete and utter respect for the WPI Institute, Dr Judy Mikovits and the Whittemore Family. I can understand why people may be sceptical but not with the venom some of you seem to feel on this. I have CFS/ME, I live in the UK and I am XMRV positive so for forgive me for believing in their research, I do not feel it is a coincidence that I have both. In all my dealings with the WPI I have found them all to be utterly honest and committed to finding a cause and a cure for CFS/ME, that does not just include for their daughter, it is for everyone with CFS/ME. You complain about Dr Mikovits and all her hypotheses, hers are backed up through years of experience and years of science...what are all your hypotheses backed up with? I think some of you have been offensive personally towards Dr Mikovits..well give me someone anyday who is more dedicated to her work than perhaps looking in a mirror. I think some of you have too much time on your hands.

what have ervs got to do with humans

perhaps there needs to be some epigenetic control of this erv

The difference is that dr mikovits is a real scientist and erv is not nor likely to be given the level of knowledge displayed in this area.

the study of the epigenetic genetic control of ervs should be a fairly short one as they are themselves epigenetic ageants

perhaps ervs problem with dr mis a mouse to woman thing

@79 gerwynn

What?

By the way, it has just been announced that Glaxo Smith Kline have funded a new study that will evaluate CFS patients with characteristics similar to the Science paper. CFS patients known to have XMRV from the Science paper will be used as a positive control. This study is designed to estimate the prevalence of XMRV in CFS subjects (selected by the modified Fukuda criteria and the Canadian criteria) and healthy control subjects. Ethics board approval is pending but they expect the study to begin shortly. Arguably this is the first true replication study announced since the Science paper was published last October...why don't you wait and see the results before you hypothesize again.

Sounds like a real + control and a real, proper replication. Very glad to hear it.

JAS, experience is not a get-out-of-science-free card. Abbie has listed several flaws in Mikovits's research and explained the problems, so you should understand what's wrong with it.

Her attendance as a speaker at an antivaccine conference simply seals the deal. It is an irresponsible move for any PI, let alone one going around irrationally accusing others of fraud and making a stink about their own ill-supported conclusions. There's a pattern here: sloppy conclusions, sloppy public relations, sloppy relations with other labs, sloppy regard for the truth. Whether she works hard doesn't matter if she's working hard for the wrong thing.

Prometheus wrote:

"There is a distinct possibility that Judy is being battered between competing complex personalities.

She has a patriarch who demands results (Cure her!) combined with a matriarch and a scion who have spent twenty years defining themselves as respectively, the support system and victim of a dread disease."

If we're being honest, surely we can understand why stumbling across that sort of speculation about yourself would be pretty hurtful if you'd spent most of your life being seriously ill and desperate to get better.

Imagining the psycho-dynamics of the WPI might just seem fun here, but it's not really fair on the individuals involved, especially the daughter, who doesn't seem to have done anything to make herself a public figure.

I didn't bother mentioning it at the time, but kind of wish I had now.

#75 MGB

"This has to be the most disgusting blog I have read."

Lurk more but in the meantime, congratulations on your purchase of the Tandy 2000. Your spread sheets are going to look fantastic!

"Tall poppy syndrome for sure. I'm glad this research is not in your hands."

ERV is a North American, one of the winner obsessed freaks of the first world. North Americans don't get Tall Poppy. We're whores for wealth and fame for their own sake. We have no regard for merit.

If you need a derisive sociological metaphor, this blog is more like "Crabs in a Bucket".

#84 gf1

" ...but it's not really fair on the individuals involved, especially the daughter, who doesn't seem to have done anything to make herself a public figure."

I worry about my privacy too, that's why I grant consecutive interviews and photo shoots for the New York Times and post my biography in support forums.

Now stop criticizing me or I will sue you.

Signed,

Greta Garbo

The proof'll come out
Tomorrow
So just stay in bed
'Til tomorrow
Don't have to pay!
Tomorrow! Tomorrow!
I love ya,
Tomorrow!
You're always
A day
A way!

-Annie

@Shirakawasuna....you are right, experience is not a get out of jail card, however, she deserves more respect than you are affording her. If you have a point re flaws you feel in the science great...state them...I am all for free speech. However, the way that it is being done in relation to both Dr Mikovits and the Whittemore family including of a very sick woman is in my view unacceptable. Where you are wrong is a sloppy disregard for the truth..her work was peer reviewed for 6 months by the best you can get and verified in 3 seperate laboratories. It is being put to the test with this latest study and she is co-operating with that. History will determine who is right.

The proof'll come out
Tomorrow
Bet your bottom dollar
That tomorrow
There'll be proof!

Takinâ my Ampligen âtil
Tomorrow
Noblesse oblige is hollow,
And the sorrow
Iâm so bored!

You can confirm contamination in 20 separate laboratories or 3, who cares? Explain to ERV why the sequences are freakin' identical. These peeps for 25 years had a retrovirus and they did not get any mutations, that is impossible.

If you want to make a complaint about Erv here's her details:

http://blue.butler.edu/~mzimmerm/Resources/sci_expert_data_base.htm

Name: Abigail Smith
Title: Graduate Student
Address: Department of Immunology and Microbiology
University of Oklahoma Health Sciences Center
Oklahoma City, OK 73104
Areas of Expertise: viral evolution, endogenous retroviruses, genetics

Here's her uni: http://www.ouhsc.edu/

"The Office of Community Partnerships and Health Policy is a part of the OUHSC Provost Office. The mission of Community Partnerships and Health Policy is to better connect OUHSC to the community."

Maybe this is her way of connecting OUHSC with the community?

Hey Sal, is that you again?

Dinna fash yerself, folks.

Just keep calm and carry on...

Ive heard the best way to gain scientific legitimacy is to post the personal information of young female graduate students on the internet, and encourage harassment.

Oh, wait, no, that was a move from the HIV-1 Deniers.

ie, The Kooks.

Congratulations, CFSers! YOURE CREEPY! *balloons and confetti fall from the ceiling** YAAAAAAY!!!

Shame on you all for making fun of ME patients, disgusting!

I'm a ME/CFS patient and I'm not remotely bothered.

If the WPI and Mikovits are so morally upright and open about their intentions, I'm curious why I still haven't received a response to my email. You'd think they'd be eager to correct my "misapprehensions."

This is one of the the most factually inadequate "scientific" blogs I have read in a long time. But then it is written by a young grad student so what more can one expect? Perhaps said grad student should do a bit of reading into the history and politics of M.E. before spouting regurgitated drivel. There are a lot of dodgy dealings on the psychiatric side of things in the UK. The first negative study was conducted by a psychiatrist (psychiatrist and virology study...hmm one of these things is not like the other) who has a lot to lose if XMRV were found to be the cause of M.E. Having built his livelihood on the false belief that M.E/CFS is psychiatric condition. The third XMRV study (although you can hardly call it a study) is the same. A "friend" of first negative proclaimer. Now whether it's fraud is another matter but all were rushed to publication with little to no peer review - and in one case (the first neg study) money was exchanged to get it published. Hmmm. Hardly sturdy, robust science. Several weeks research versus several years; 2 day review by editor of online journal versus 6 months peer review in Science. Which one sounds more credible?

You might also be interested to know that Wessley (first neg study) holds sway over the media, being on the panel of the Scientific Advisory Panel set up by New Labour in the UK. He has access to all major media channels and decides what information relating to M.E. is given out to journalists. Another reason why he has been able to hoodwink the general population and repress the true nature of M.E.

Being in the US you may not realise exactly what M.E. sufferers are having to endure here in the UK. We are not given full access to pertinent tests; our doctors are specifically told NOT to test for co-conditions that will prove the physiological nature of the illness, ie doctors are told not to conduct a tilt table test which would show how our circulatory system is compromised; and we are only offered psychiatric treatment. (Wessley was responsible for setting up the M.E. clinics in the UK which offer purely psychiatric treatment measures and where M.E. sufferers are forced to exercise and take CBT or face being sectioned).

Please, please, please do some research on the matter before you start attacking Dr. Mikovits on her reaction to these ludicrous XMRV-negative studies. http://www.meactionuk.org.uk/magical-medicine.htm There are a lot of desperately ill people here in the UK who are being criminally neglected. You could actually do a lot of good - just do a little reading first.

Please also be aware that the results from the WPI study was supported by two other studies so it's not just one positive study but 3.

@Moron: I like you.

@ERV: Poor thing, outed on the interwebs. It's hard when the shoe is on the other foot, isn't it? Sad face.

I am amused but not surprised by the replies

Zen Monkey - maybe they are too busy actually working instead of wasting time answering your insignificant rants.

"because when I criticize or condemn another, it makes me feel bigger, superior."

Wow big ego's here.

Thanks yo.

ERV's not exactly the sweetest being on the planet but it's a bit much to advocate messing with her in real life.

95ME cries conspiracy. The insurance companies control "Wessley." He controls the media. The media control the sheeple.

But it doesn't make sense. I work in insurance. I dont want to pay claims. I want my company to deny CFS claims so I decide CFS sufferers are malingerers. I control Wessely so I tell him to cook up research that CFS is a crock of shit. The absolute last thing I want is Wessely saying CFS is a real debilitating disorder. The next to last thing I want him saying is there is therapy that works and I the insurance guy, should pay some damn psychologists for people to get it.

With my awesome conspiracy in place why does Wessely say exactly what I don't want him to?

mgb: Amazing! You work for the WPI? Or are you monitoring my email? Because I'd love to know how you became so intimately familiar with the email I sent to characterize it as an "insignificant rant." Please, for all our edification, provide a few quotes from the specific email I sent to demonstrate that it was a rant.

And I reiterate that if this comment by Mikovits was an error, or she misspoke and didn't mean it, I would expect WPI would wish to correct our misapprehensions. Until I or anyone else hears from them on this matter, then we have only Mikovits' very own words to go by.

JustBelieve,
If it's contamination, why do negative controls work as expected with PCR and Ab-based visualization, for two or three labs including NCI? Why are the subjects seropositive for two or three labs including NCI. Why did Urisman et al 2006 visualize the gentlemen in situ, in tissue frozen immediately after prostatectomy, with both FISH and Ab. Why did PMID 19805305 also visualize it in situ with Ab.

I wouldn't necessarily rule contamination out completely. And yeah, the lack of quasispecies is discomfiting, no doubt.

The Urisman paper is DeRisi: a hotshot who built his own DNA chip machine from scratch and went on to invent the Virochip. Not exactly a marginal PI. And he also found the same lack of diversity as you probably know.

Soho, the pychiatric treatments on offer to sufferers ie CBT and GET are cheap therapies and if they do work they get some of the people off benefits. Those who recover after psychiatric intervention are most likely not suffering with neurological M.E but with depression. The thing about M.E/CFS (in the UK) is everyone with fatigue symptoms gets diagnosed with it. So it's a grab-bag. The therapies will work on some simply because not everyone has true neurological M.E. and as further investigative testing is not recommended in the UK no one actually knows the true number with M.E. Those with M.E. who don't recover are left to deal with their condition. No more treatment - no more costs.

Sorry Zenmonkey, just assumed after reading your emails that it was you preferred method of communicating.

correction- posts

Promo,
By the way the CFS/fibro research outlays are much smaller, per sick capita, than for other diseases. Probably by 5x or so. I've looked it up (and more recently than that other information I attempted to cite from memory).

Doesn't exactly make me happy personally, though given the lack of biomarkers I can understand not funding it somewhat less than equally - when I look at it sub specie aeternitatis plus squint really hard.

The thing is, actually, I just remembered, I think a whole lot of that money goes to psychobabble research - so actually scratch that sub specie thing. You'd be amazed how many neurological type diseases have had a very significat psychologic etiology school in the past, and sometimes that school dominated. One by one these diseases have fallen into the definitely-biological realm. Meanwhile psychological medicine has never one brought forth a radical cure - or even a really significant diminishment (like more than 30% or so better than placebo) - of any disease entity. That's quite a record. I'm not saying it's totally useless, but it is extremely unlikely to ever hold the key to the actual cause of any chronic illness.

Petra-- ERV was started in 2007 2006 (Christ Im old). I am not, nor have I ever been, an anon blogger. And, my info has been on the Clergy Letter Project for just as long.

This isnt new info.

But the manner in which it was used here and in the 'About ME/CFS' forums is creepy.

The only other people who do things like this are kooks, like HIV Deniers.

Kooks also attempt to silence dissenting opinions via bullying and intimidating legal threats, like what A*** W*** did.

Which doesnt speak well for the CFS community, if they want to be taken seriously.

*shrug*

Weak!

Really, erv, you and many others on this forum post some very weak stuff. Obviously for science to progress, which is the whole point of science, scientists must form hypotheses (ie speculate). Einstein said that imagination is more important than knowledge. I don't know if this is true, but it is certainly the case that knowledge without imagination is not very useful. And to make a larger point, she's a good scientist and a good person, so back off on the unprofessional ad hominem attacks.

Don't mind the kooks, ERV. It could've been worse. An anonymous clan could've called in their politicians to shut off all funding to the state of Oklahoma until the authorities handed you over. On the bright side the subsequent compulsory long walk off a long pier would've positioned you well to investigate the existence of Tahoe Tessie.

@100 Soho- Wessely and co. say ME is 'real', not real. A lot of the time even complete with quotation marks! Kind of like how nightmares are 'real', ie yes you 'really' had a nightmare and a nightmare itself is a real event, but that doesn't mean that what occured in the nightmare was real, hence the quotation marks. Confusing? Good! You're halfway to psychville already.

The thing is that there are different kinds of insurance- medical insurance and disability insurance. By including CFS as a psychiatric disorder, disability insurers can avoid paying claims related to CFS. It's really just passing the buck, and it's a mighty expensive buck at that.

For most disorders(or at least a lot of them), you can run a simple blood test which tells you what the diagnosis is. Symptoms + specific abnormality= diagnosis(at least in general).

However since there is no biomarker for CFS as yet, it's the opposite- doctors must run a comprehensive battery of tests to exclude other diseases. I think I've read that 'diagnosing' CFS is one of the most expensive parts of modern medicine. Instead of running maybe a handful of tests, you've got to run a whole shitload of them. Over and over and over and over again since CFS patients will go from doctor to doctor in an attempt to find someone who actually believes them. So by hampering research into CFS in order to save money themselves, disability insurers have instead dug a money pit that a ton of other industries have to throw money in- medical insurances, hospitals, medicaid and medicare, etc.

And as for that 'therapy that works'(CBT?) as you call it, basically it's a lot cheaper to tell someone there's nothing wrong with them and if there is it's because they're not 'committed' enough to the 'therapy' than it is to pay a disability claim.

[in b4 'if there's no biomarker then there's no disease': there are plenty of biological abnormalities in CFS patients, it's just that most of the time they only occur in a percentage of patients, which has given rise to the theory that CFS is actually a heterogenous disorder, similar to the recent hypothesis that MS also occurs in two forms, one characterized by gamma-interferon-secreting T cells and the other by IL-17-secreting T cells*. If CFS is heterogenous why would XMRV occur in most all patients? Good question.]

*http://www.businessweek.com/lifestyle/content/healthday/637340.html

> there are plenty of biological abnormalities in CFS patients, it's just that most of the time they only occur in a percentage of patients

That's only quasi-true - unless we assume the papers by V. Spence and by Maes, showing radical abnormalities, are correct. (They haven't been confirmed in print so far, and I have to wonder whether they might have been disconfirmed without any publication).

Other 'softer' abnormalities have been found. The most robust and confirmed of which is low NK cell function. However, this isn't some thing that no normal person has and that 30% of CFSers have. Rather, 'low' NK cell function means lower than the 5th percentile, or the 2nd percentile, or the 0.1st percentile of healthy people (I'm not sure which). And whatever that threshold is, 30 or 40% or whatever it is of CFSers are below it. There's nothing vague about this. It is a perfectly formal and proper abnormality even though not all of us have it, and it does help make an (objective) case for the physical nature of the disease.

However, just because there is a molecular abnormality, that doesn't absolutely prove the etiology to be physical (unless the abnormality is a gene with high penetrance). For example, it is not controversial that a big percentage of depressed subjects, in the neighborhood of 50%, show 'elevated' cortisol (whatever elevated means - and there is almost certainly some amount of healthy normals who also have elevated cortisol). Yet, the psychogenic theory of depression has hardly been driven from the field, though physiogenic theories exist too. The psychogenic school simply says that the psyche and psychical processes cause the hypercortisolism. Mind states are of course considered to simply be brain states by virtually all scientists, though certain difficulties are associated with this hypothesis and a truly radical proof of it is probably not possible, at least not anytime soon. So there is no separate 'psyche,' on this picture. But the word is still convenient. It refers to the supposed high-level integration of purely physical processes in the brain to produce emotion, desires, beliefs, and of course (and this is the sticking point philosophically) qualia.

Cortisol is of course a stress hormone secreted at elevated rates when stress is registered in the psyche, and misery can be considered stressful. So the psychogenic school of depression has a somewhat plausible story for the psyche causing cortisol to go up. (Though I don't know whether or not it *stays* up chronically in a healthy person that is *chronically* stressed.)

Why exactly the mind state of CFSers could lower NK cell function is a bit more of a stretch. There is no known reason for a mind state to have this effect, and it seems like plausible hypotheses would be really hard to think of. On the other hand it is certainly possible for the brain to modulate the immune system. So there's certainly "a way" - whether there is "a will" is much more dubious.

Soho. To Clarify as it appears from your statement that you arenât from the UK.

The insurance industry doesnât pay for treatments in the UK, the NHS or the government does. We have a national health service here.

Wessely DOESNâT believe itâs a ârealâ debilitating condition but says it is caused by âabherrent illness beliefsâ i.e. itâs all in the head and can be cured with a little bit of his magical talk therapy. In my opinion, heâs selling his own brand of snake oil here. Heâs probably making a mint from the government to set up and run the ME/CFS clinics, in addition to his consultancy services and work with DWP and UNUMProvident. The government desperately need a solution to the escalating disability costs; specifically the incapacity and disability benefits paid to UK sufferers.

Disability benefits are not frowned upon in the way welfare benefits are in the US. Therefore most people who find themselves incapacitated for a long time will be in receipt of said benefits. If they can jump through the numerous hoops set up along the way and prove to government-paid doctors that they are truly deserving. This is expensive for the government.

So, how do they alleviate these costs?

1. In the UK doctors are told to stop testing after the initial round of blood tests. This will appease some patients who will often get the âall clearâ and soldier on alone until they have a health crisis. REDUCTION IN SERVICE LEADS TO REDUCTION IN COSTS. Check the NICE Guidelines for substantiation.

2. If the patient continues to make a nuisance of himself and bothers the busy doctor then give him a diagnosis of ME/CFS and dish out a succession of antidepressants and sleeping pills. This will appease some patients and is cheaper than expensive testing.

3. In the UK ME/CFS is diagnosed as a psychiatric condition, despite the fact that M.E. is classified as a NEUROLOGICAL disorder by the WHO (since 1969). The treatments offered (talk therapy and graded exercise) are cheaper than the convoluted tests and treatments required for neurological M.E. Remember I said that pretty much anyone with symptoms of fatigue is given the wastebasket diagnosis of ME/CFS. So, those with depression will most likely be relieved of their symptoms at this point. This takes some sufferers out of the equation with very little expenditure and reduces further costs.

4. Doctors are told NOT to conduct further tests. Tests that will likely confirm the biological nature of the condition, such as the simple tilt table test. REDUCTION IN SERVICE LEADS TO REDUCTION IN COSTS. Only the very persistent will get through the testing threshold. Often patients are just too ill to fight. 25% are housebound/bedbound. Check the NICE Guidelines for substantiation.

So, you are left with the very ill who may or may not be on benefits but will almost certainly not have been given appropriate testing and treatment or will have had that testing or treatment delayed. Costs have been cut by reducing the level of service to the sufferer. No conspiracy here but fact and makes perfect sense if your goal is to reduce expenditure. I know thousands of sufferers and I am unaware of anyone who has had proper testing without having to fight tooth and nail to get it. I retired from teaching 4 years ago, at age 38 and have been housebound ever since. I still havenât received neurological testing or an investigation into my severely low blood pressure which is permanently in the 80âs/50âs. Just one of a multitude of other symptoms. I have saved the UK government thousands of pounds by being too ill too fight and because my doctor, seemingly, has no idea how to treat me. Very few sufferers have been given the tests required to confirm M.E. They are left in a vacuum. Many commit suicide. 3 in 4 will go on to develop cancer, in particular lymphoma.

The situation in the UK is very different from the US. We are in the cold, hard grip of a psychiatric stranglehold and itâs a very unhealthy place to be. Sufferers are being sectioned because they refuse psychiatric treatment. Child sufferers are being taken away from their families and their mothers are labelled with having Munchausen Syndrome by Proxy. My god how can that be right? Call me a conspiracy theorist, scoff and ridicule me (I donât really care, Iâm far too old to be concerned about ego, leave that to you youngsters ;)) but I live with the disease daily and know that this cannot be ethical or just. Iâm talking real politics, the politics that matter to everyday people, the politics that should matter to you letâs face it; you too could get it. No, not conspiracy. A conspiracy is something that is dubious and ill-substantiated. Wessleyâs part in the ME/CFS fiasco is well documented.

N.B. ME has been confused with the term CFS. In fact in the UK it is called ME/CFS. ME is a distinct illness, with over 70 recorded worldwide epidemics and has been in existence since at least the 1900âs. Not mysterious but well-defined with over 4,000 scientific papers written on its physiological nature. CFS is a false disease construct, brought into existence in the 1980âs after an unknown epidemic hit Lake Tahoe. Chronic Fatigue Syndrome - itâs like tuberculosis being called Chronic Cough Syndrome. The isolation of one symptom has been used to create a term that belies the severity of the illness. But this is good for the insurance industry because they can easily refuse to pay out on an illness that involves feeling tired because everyone gets tired, right? It canât be that bad, can it? If they havenât had the full tests conducted and have been given the âall clearâ by the doctor then thatâs even better. Better still say that they are mentally ill and then no one will believe them or take them seriously.

P.S. Bringing attention to my misspelling of Wessely is hardly relevant and was used in an attempt to disparage my comments. Didn't work.

Justin Reilly-- ...unprofessional ad hominem attack...

There are no 'ad hominem' attacks in this or any posting on ERV.

I write ERV to improve scientific literacy. Your good old fashioned 'illiteracy' is not something I can help you with.

Do you all have anything to say about the OP, or are you just going to keep posting tl;dr;dc crap?

> 3 in 4 will go on to develop cancer, in particular lymphoma.

Interesting post, but that one statistic is very very hard to believe.

What about the tilt table thing, what's the formal way of measuring the response and what's the formal, precise statement of how patients differ from normals? And has it been confirmed by many different labs?

I certainly have a wacky autonomic nervous system, myself. I used to have 80s over 40s BP all the time (all self-measured though, I think). And would be very woozy for a few seconds upon standing (though at times I felt faint constantly, even supine, which is a real misery). I still sweat buckets when I get really cold.

>Why exactly the mind state of CFSers could lower NK cell function is a bit more of a stretch. There is no known reason for a mind state to have this effect.

What can decrease NK cell levels and function? Lack of exercise. Who doesn't get much exercise? CFS patients. Like the people the ME malicia bully and brainwash to refuse GET. (I stole that malicia bit from Orac.)

What else decreases NK cells? Stress. Like what happens when you cruise the internet looking for conspiracies and affronts. Or when you confront doctor after doctor after doctor and work yourself into conniptions until you find one to sign off on the diagnosis and treatment you want.

What else? Sleep disturbances. How many people do you know who go from blog to blog to YouTube to news comment section and back around for days without sleep? I know some ME patients who do that, then they crash for a few days, then they go right back at it again.

Why reach for a virus when stress, disrupted sleep, and sedentariness could explain the phenomenon? Because it's easier to read a summary of a De Meirleir abstract on feelsorryforME dot com than to actually learn about NK cells. By the way, all three conditions can be treated by behavioral therapies and are associated with a variety of mental disorders. Don't blame CFS patients for their conditions. They have serious problems. Blame the ME milicia who keep sufferers in denial and away from treatments.

Dear University of Oklahoma Health Sciences Center,
Abbie Smith (aka ERV) is totally awesome and I love the way she takes the piss out of frauds and kooks who lie to suffering people about fake treatments to steal their money. Please give her something awesome that she'll appreciate. Like a dinosaur riding a jet-ski shredding a double-neck guitar. Or an Aye-Aye with a laser harp.

Soho,
I acknowledge having a frank case of the disease, so I wonder whether you would acknowledge any possible conflict of interest you have (like working in psychiatry). But don't get me wrong, I'm not demanding that you do so.

I'm sure you can agree that there is an inside and outside version of the CFS question. I'm on the inside. I know I used to feel flu-like (colloquial sense, not influenza) every day, and be pained by bright light. I know I used to feel faint all the time, have thousands of heart palps per day, and break out in petechiae after showering or exercising. Just like I know the sky is blue. I am more certain of these things than I am certain that my mother loves me: they have less positive emotion associated with them, but that hardly matters much in epistemology; what matters is that they are simpler and more immediate. So I don't acknowledge that there's an inside question, but I do of course acknowledge the outside question.

I would support 100% an experiment to see whether some period of inactivity, or stress, could lower NK cell function in normals. Or whether any other manipulation could do the same.

I agree of course that CFSers have elevated rates of neuroses including depression, anxiety, and OCD. I have all three though I am much less depressed than I was. But I believe these have a physiologic origin.

Your notion about people reading/blogging compulsively can be interpreted in other ways. CFSers can have major insomnia problems and can have a constant 'tired but wired' syndrome. Insomniacs, with or without CFS, of course have to read or something if they can't sleep. Reading and chatting can also be a narcotic distraction from ill-being. So, not only is it conceivable that entertainment junkie-ism could cause ill-being. It is also conceivable that feeling ill could cause entertainment junkie-ism. The person who feels ill and has trouble feeling pleasure seeks pleasure clutchingly, like a miser. Also, partial and total sleep deprivation have acute anti-depressant properties which are well known to science.

I myself have been really anxious about something in particular, which is why I've been writing so much on this blog for three days. While I do find these discussions fascinating, I would restrain myself if I were feeling better, and spend that energy doing something to further other goals.

Here's the thing though. Not all CFSers are physically inactive. Even back when I felt indescribably awful, and certainly had some fatigue, I walked 1.5 miles every day, or often 2.0, the most I could comfortably do. It was one of the few things I could get faint pleasure from, and I love the outdoors (once did a 300-mile hike, 20 miles a day in the Appalachains, and I loved one-day and two-day bike rides). There are even a few who are able to exercise aerobically, though not many, and when one is dealing with only a few it is more worrisome that they might actually have some other, separate disease. But I would suspect that a large fraction walk many miles per week. There might be an X such that quite a percentage of CFSers walk more than X miles per week and quite a percentage of normals walk less. If you wanted to look at the NK cells of such people I would certainly wish you godspeed, and I acknowledge that such explanations are quite conceivably true a priori.

Speaking not of NK cell but the illness more generally, very large numbers of CFSers have been treated with graded exercise programs. Whether they have on average improved by 10-20% or something is highly debatable. What's not debatable is that it hasn't cured them.

I don't think many CFSers go around looking for affront on the internet. But when we find it, it's almost impossible for it not to smart some. You can't understand our underlying enraged mentality, though most of generally find some level of resignation about it, in time. You just can't understand how piss-mad you would be if you longed to die every hour, and thus were withstanding far more than most people dream of, yet lots of people said or obviously at least suspected that you were just a weakling. Perhaps even your father. I am now nearly in normal health, but I remember it well. When you are in suicidal agony but haven't killed yourself so far, your main companion and the thing you know most deeply, almost like a lover and a PhD thesis combined together and changed into evil, is your terror of the death you desire. It's like being in hell, and having people in heaven jeer at you as a hilarious panicky weakling who is imagining hell. When there is less than zero joy in the present and no clear expectation of escape, your life is destroyed except for weak, intermittent hopes of eventual escape - and half the people you know might disdain you, maybe your family or spouse; you might well end up divorced or on the outs with your entire family.

Eventually though, I just stopped caring all that much about CFS detractors. After all, being piss-mad for a few minutes is like a gnat buzzing in your ear, compared with the actual problem of dealing with the disease itself, assuming a severe case of it. I don't really care anymore that my father doubted my experiences without even doing any significant reading on CFS, so I just hang out with him and largely forget that it all happened. Though this took a few years. I'm sure sick people are revolting to many people - and many organisms. After all, in terms of evolutionary analysis it is not exactly fitness-enhancing to ally with, or donate resources to, a chronically non-functional miserable organism such as I used to be. And I am a firm believer that humans are subject to, in many ways dominated by, hard-wired drives of an organismal nature rather than a uniquely human nature. Many people behave that way toward CFSers and I suspect it is largely genetically determined. I could easily have been born with a genome that partially determines the same traits.

Even the hilarious jabs of Prometheus sting me, but then I laugh because it's really not malevolent, it's uproarious wit, and I believe in thick-skinnedness and the traditional virtues of hardness and toughness. Also, wit is profound when it has the strength to take a great deal of suffering somewhat lightly. It is necessary for both laughter and ecstasy to comprise and partially neutralize suffering and take precedence over it. The individual that has escaped suffering must move beyond it. Some won't live to escape. But the rest of society has to largely move on past it to a very significant degree, or the result is a pathological culture where the highest value is compassion. This is somewhat what we have in the West today and it is not desirable. I largely side with Nietzsche against this. It is essential to have some compassion, but joy, celebration, cheerful struggle, and achievement must unmistakably be the highest values.

This thread's moved on rather.

@Prometheus: I'm afraid I've not read those pieces. Maybe they do justify your comment, but to me, it seemed unfair.

@ Soho: That's the problem with those who believe that the abnormal biological findings in CFS patients prove that the cause of the illness must be biological. On the other side though, the evidence that CFS is caused by psychological illness or abnormal beliefs is just as weak. Doctors tend to prefer to believe that it is not a medical problem for which they are responsible, and patients tend to prefer to believe it is not a psychological problem that they are responsible for.

@ CFS patients: ERV's said she's not interested in the politics surrounding CFS. I think that this means she will not be able to judge to WPI's actions within their proper context, but it shouldn't affect the virology. We've now had three papers showing no link between CFS and XMRV, and it is almost impossible to believe that this could be driven by patient selection, the interests of insurance companies, Wessely's influence or anything other than a genuine inability to find the thing. It could be that these studies failed to find a link because of some error or peculiarity of the virus, and that there is a link between XMRV and CFS, but I think we can be quietly confident that this will be sorted out in the lab.

Yeah, I'm fully confident that it will be sorted out empirically. I was just chatting idly about whether CFS=XMRV can be ruled out yet, just for the heck of it.

Sorry Moron and others.

I should have made it clear that my comments only apply to some of the recent CFS posters.

If you do not have CFS/Me, please keep your assumptions(assumption is a proposition that is taken for granted, as if it were true based upon presupposition without preponderance of the facts.) to yourself. If you are not currently using the methods and protocol used by the WPI, NCI and Cleveland Clinic to find XMRV in CFS/ME,Prostate Cancer or any related neuroimmune illness, please keep your assumptions to yourself. Some here may not like Dr. Mikovits or her manner being in the public forum...Oh Well...She has, with only a handful of researchers moved CFS/ME Science into the 21st century.If you disagree with the Science Paper, Get off your ass and prove it to be incorrect.One would think with all the hard working LabRats here...The questions re: XMRV and/or CFS/ME would have been solved prior to the death of Gaetan Dugas.

Replication Study of Whittemore-Peterson XMRV Findings
âGlaxo Smith Kline, a pharmaceutical firm in Research Triangle Park, NC, has funded a new study that will evaluate CFS patients with characteristics similar to the Science paper

http://www.prohealth.com/library/showarticle.cfm?libid=15255&utm_source…

Guess these LabRats are doing these studies Just for Kicks!

Raltegravir Is a Potent Inhibitor of XMRV, a Virus Implicated in Prostate Cancer and Chronic Fatigue Syndrome
Xenotropic murine leukemia-related retrovirus (XMRV) is a recently discovered retrovirus that has been linked to human prostate cancer and chronic fatigue syndrome (CFS). Both diseases affect a large fraction of the world population, with prostate cancer affecting one in six men, and CFS affecting an estimated 0.4 to 1% of the population.

Forty-five compounds, including twenty-eight drugs approved for use in humans, were evaluated against XMRV replication in vitro. We found that the retroviral integrase inhibitor, raltegravir, was potent and selective against XMRV at submicromolar concentrations, in MCF-7 and LNCaP cells, a breast cancer and prostate cancer cell line, respectively. Another integrase inhibitor, L-000870812, and two nucleoside reverse transcriptase inhibitors, zidovudine (ZDV), and tenofovir disoproxil fumarate (TDF) also inhibited XMRV replication. When combined, these drugs displayed mostly synergistic effects against this virus, suggesting that combination therapy may delay or prevent the selection of resistant viruses.

If XMRV proves to be a causal factor in prostate cancer or CFS, these discoveries may allow for rational design of clinical trials.

http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0009…

JAS, you've given no reason why we should show her any more respect than anyone else foolish (crass?) enough to attend antivax conferences to give people false hope and spread nonsense. That is what she'll be doing, you know.

Many criticisms have been listed in this thread and many earlier ones, I point you to them. Some of this stuff is very basic - undergrads wouldn't make her mistakes. So why is a PI doing a PR nosedive with such poor science?

The answer is not, "she's a hero", if that's what you're still thinking...

@Shirakawasuna That is your 'view'....I do not happen to share it. I do not pretend to have a scientific background, I am XMRV+ve so I happen to believe that she is not 'foolish or crass', if you were XMRV+ve and were facing all the realities that entails I think you may feel the same way. I am also in the UK where ME is seen as a psychiatric disorder which I have always known is wholly untrue. Who knows where this will lead...? You are too quick to judge all this..give it time, this is only at the very start, why do you have to decide everything now? On this blog things are being said rather for personal entertainment or personal notoriety...but actually this is not a game...this is not 'nonsense', this is mine and many other people's lives.

This is a flat out, 100% serious question to the ME Mafia: Are you people mentally handicapped?

Do you honestly think this or this or this or this excuses Judy Mikovits presenting at an anti-vaccination rally?

Do you understand the criticism being leveled on Judy Mikovits, or do you just see someone criticizing your Messiah, and "DISSENT MUST BE ATTACKED!"?

Because people who are just plain stupid are different than people who are medically mentally handicapped, and I will deal with this issue differently depending on the answer.

"ME Mafia." Great. That's helpful. Ever wonder why people might do this for any other reason than thinking that they're mentally handicapped? I was afraid something like this would happen when I saw that Mikovits was doing something at this conference, but I didn't think it would get this bad. And for the record, although it seems to be public info, I thought it was kinda shitty to post Abbie's stuff in a comment. That said, Abbie's been kind of shitty herself on this topic, not that it deserved something like that.

Ask yourself this, Abbie. You have broken your leg just as CFS patients have broken bodies. No doctor will offer anything but that the fracture is a result of psychological causes and that inappropriate measures such as behavioral therapies and graded exercise are the only treatments. They don't think there is anything wrong with you, which some will state flat-out, while others will just look upon you as a malingerer. Broken leg. Compound fracture. And you've in a quandary with a large number of other patients, all with a similar problem, if not completely identical symptoms.

I know you've said you don't give a shit about CFS, but humor me, if you will.

What's worse is that for every one of you, there are two or three others who have received the same diagnosis, but whose illness is not the physically broken leg you're dealing with. They are dealing with mental issues, psychiatric illness, depression, psychological problems. Doctors are weary of dealing with them, and project that weariness onto you even though you have a broken leg. They won't so much as take an x-ray. Think you'd get a little irritated?

After being treated like a mental patient, you might try to explain things to a doctor, not that it will do any good. Somewhere along the way, you might try to reason with them that your condition is real, that your broken leg is an actual, genuine condition. Cue a horde of people whose interest in mental issues has trained them to pounce on anyone seeming to minimize the legitimately major problem of mental/psychiatric issues. How dare you characterize a psychiatric or mental issue as not 'real.' Shame on you for diminishing the suffering of the mentally ill. This scenario plays out time and time again. And there you are, in great pain, with a broken leg that's being utterly and completely ignored by people who are trying to tell you the only things you can do are either talk therapy, which is worthless to your situation at best, or exercise, which will make you worse. And since those treatments do work well for the larger group who share the same diagnosis with you, there is an evidence base that undermines your position even though you know it's going to damage you. Yet if you refuse those treatments, you may be at risk of losing your coverage.

You might not believe this analogy, but it's more accurate, at least for the UK, than perhaps you'd like to admit. And I'm going to ask that you think about that, just for a second--being trapped in a dead-end diagnosis that caters to people whose suffering is for reasons other than yours, and people like you lay in agony for years, ignored by medicine, thanks to Wessely & other like-minded folks.

It's a little better in the States, generally, a lot better for some, just as bad for others. But for those whom it is better, it's better only in the sense that they are able to find a doctor who has a better understanding of the condition and at least doesn't think you're mentally handicapped. If so inclined, they can perform a test that shows an issue like NMH, which is not permitted in the UK. If you are put on a tilt table & given a diagnosis of NMH, you're told to drink a lot of water & consume a lot of salt. In the UK they section you in a psychiatric ward for following through on this advice. And smarmy bloggers who don't have an understanding of any of this, because, as she admits, she doesn't give a shit, ends up focusing on an admittedly questionable series of quirks visible in the behavior and views of a person responsible for some of the most promising research being done in this condition, for which no significant treatments exist, in nearly two decades.

For anything you had a problem with Mikovits for, you did something that other bloggers seem to do--you focused on a couple of things that bother the crap of you, to the exclusion of any other considerations. Fuck the big picture, the only recourse you have is to proclaim the woman a cunt. How professional.

I knew there were issues with her statements to the press, and connection that could be made to questionable entities. You went after each one as though it was the only issue worth mentioning. But for others, there is a bigger picture. And it's not lost on everyone who comprises the "ME Mafia" that some of the statements Mikovits has been taken to task for perhaps would not have made it to the press had she not found herself beset with circumstances she may not have been prepared for. Like the rigors of what amounted to a publicity tour, which I doubt anyone could have forseen. But forget about cutting any slack to a person who is traveling and probably not eating or sleeping properly, and finds themselves in that situation likely with little warning or understanding of what they were in for.

That said, I am not her defender, because I think some of the issues you have jumped on her for could have been avoided. I'm not a fan of the anti-vax people, to put it mildly. I think she put her foot in her mouth, more than once. I'm less inclined to care about the association with ProHealth, or some of her remarks, but I don't deny that they could be looked upon harshly. But enough already--call off the dogs. For the reasons I have described above, a population of extremely sick patients have seen her stumble upon something that does indeed cause them to view her with great admiration. And they certainly don't care about you. So the resulting situation is unfortunate.

But it's unfortunate when a patient who is desperate to be part of your skeptic clique decides for herself that because a small number of patients don't grasp that the XMRV connection is not settled science, that she has to reach out to the skeptic community to present the perfectly obvious. In doing so she chooses a source that has repeatedly offered the considered opinion that CFS = somatization. Yeah--I need someone from that group with those views to tell me what I already know about how XMRV is not exactly settled science. Said poster--whose comments appear above--isn't interested in their view on her illness (that it's all in her head), only a perceived much-needed response to a small group of people whose loud voices have somehow convinced people who are supposed to know something about critical thinking, that a couple of dozen desperate people with loud mouths represent millions' worth of patients. Ah...no.

Interesting that someone who claims to suffer with the same ailment, not that I don't believe her, would think so little of her fellow patients--and herself, seeking out the counsel of folks who don't even think there's anything wrong with her or anyone else with this diagnosis. Yeah, she's the only one capable of thinking for herself. The rest of us follow Mikovits around like lapdogs, believing anything & everything before independent confirmation is forthcoming. Sure.

Complicating it further is that the European studies are given equal weight by you and others, in spite of Wessely in one, an equally dubious figure using a joke of a CFS cohort in another, with nearly 20-year-old blood samples, no less, in another, and a third perceived as more credible since it was led by CFS-friendly doctors. Well, even some doctors who are not great fans of Mikovits couldn't understand why that second UK study didn't bother following the WPI procedures.

I wasn't going to bother responding again to you, since you took my pointing out that your concern about rheumatoid arthritis, in juxtaposition with your lack of concern about CFS, to be worthy of the label 'emotional trainwreck.' Well, I'll leave that to your readers to decide for themselves. This, from someone who could have criticized Mikovits for the litany of perceived offenses without calling her a...cunt? For Pete's sake. If truth is on your side, which isn't yet known either, this is the route you choose to take in your criticism. This says a lot more about you than it does about Mikovits, David Kirby or no David Kirby.

If you dealt with decades of a broken body, while being told it's all in your head and disbelieved by friends, family, and loved ones, you might be a little prone to anger at this point as well. Or a lot prone. You might even give someone the wrong impression on a comments thread because you perceive them as the same enemy you've dealt with for so long. But, hey, what do you care about any of this? Judy Mikovits is irresponsible and unprofessional, and that's all that matters. These patients, they must all be nuts.

Good luck with that.

Three Chord Monty-- blah blah blah tl;dr;dc

You think its 'odd' that I refer to people who treat criticism with legal and real-life threats as a 'mafia'.

You do think its a problem that I point out Judy Mikovits un-scientific behavior.

This bizarre position is not the result of a real medical side effect of CFS (lower IQ, slower brain development, mental impairment), but of your own irrationality.

Question answered. Decision made.

Thanks for your help!

ERV, go look up the difference between criticism and ad hominem.

ERV - I don't think it's odd that you should point out unscientific behaviour by a scientist. I'm a CFS/ME patient, and I'm not particularly invested in the whole XMRV thing one way or another; just waiting to see what pans out. Nor would I claim to understand the scientific details about virology and lab methods. I'm also uncomfortable with the how militant the so-called "ME Mafia" come across online. There are many of us who are not represented here.

The only thing I would point out is that it appears that AW reacted (even if she perhaps over-reacted) above to personal attacks made by some of the people commenting here. That has nothing to do with the scientific debate. You're conflating the two. Surely you can see the difference?

Criticisms of Judy Mikovits behavior on ERV:

Just after Jenny McCarthys 'keynote address' at an 'autism' conference sponsored by AUTISMONE and Generation Rescue, Judy Mikovits is going to talk to everyone about XMRV (3-4 pm).

Judy, you are one pathetic excuse of a 'scientist'.

Lets be 100% clear, here. What Mikovits is suggesting is an organized conspiracy, lying, and scientific fraud in another lab. How is this statement any different than anti-vaxers saying researchers 'dont want to find the link between vaccines and autism', and they sold out to BIG PHARMA? How is this statement any different than Creationists saying Average Joe/Jane scientists are SUPPRESSING evidence to support Creation?

This is some serious shit. This accusation is no fucking joke. The scientific world runs on all of us being truthful-- this is my reaction to a Creationist calling me a scientific liar. If another researcher said what Mikovits just said, to me, in real life, there would be a fight. If I were the British group, Id have an awful hard time not taking advantage of their loose slander/libel laws...

...Unless, of course, Mikovits has evidence to support her claims. So where is the evidence that McClure et al were purposefully and knowingly performing scientific fraud? Intercepted emails? A whistle-blower from the inside? Why do I get the feeling that this evidence does not exist, and Mikovits is just a gigantic fucking cunt?

...No one who has ever published anything would say something that goddamned stupid. You pay to publish in every journal, stupid! Thats the whole fucking point of PLOS! Classic journals make you pay to publish, then volunteers review your papers, then the journal charges for article access. PLOS, you pay, people volunteer, but everyone gets to read your shit...

...So let me be 100% clear again. What Mikovits just did was misrepresent Science to the public in order to gain sympathy from laypeople and to discredit other scientists valid work, in a completely non-scientific manner. So, now she is a deceitful, conniving, gigantic fucking cunt. You think I get mad when journalists misrepresent Science, for a PhD, a principle investigator to do it in a malicious manner... Im not being funny, guys. I am genuinely angry at this woman.

'Ad hominem' statements that do not appear on ERV:

Judy Mikovits is fat, therefore, her science is flawed.

Judy Mikovits eats babies, therefore, her science is flawed.

Judy Mikovits is a cunt, therefore, her science is flawed.

'Ad hominem statements that do appear on ERV:

Abbie is MEAN, therefore, her criticisms are invalid.

Libelous statements that appear on ERV:

You can't claim to replicate a study if you don't do a single thing that we did in our study," she said. "They skewed their experimental design in order to not find XMRV in the blood."

"They paid to have their study published in the Public Library of Science, and it was then picked up by Science (magazine)," said Mikovits said, who suspects insurance companies in the United Kingdom are behind attempts to sully the findings of the Reno study.

As we say on SciBlogs, sir/madame, go fuck yourself sideways with a rusty knife.

ADS-- The only thing I would point out is that it appears that AW reacted (even if she perhaps over-reacted) above to personal attacks made by some of the people commenting here.

Quote it.

A*** W*** has not been a topic of conversation on ERV in anything but a casual manner-- "She got sick when she was 15" "No she was 11 or 12" whatever. This is all information available online/in press. A CFS patient brought up that Mikovits might be influenced by A*** W*** relapse after vaccination. It is 100% valid to wonder if WPI/Mikovits might be biased by their personal feelings for A*** W***.

There is no excuse available to WPI for threatening and intimidating a grad student.

"I know you've said you don't give a shit about CFS but humor me if you will."

Okay.

*binnng*

You're humorous.

Have fun at the convention, but don't sit next to the aspies they won't "get you" if you are humorous,

JAS, you asked for criticism of her work as if there wasn't any that was legitimate. I pointed out that there has been plenty listed, almost none of which has been addressed. Now you excuse yourself from that discussion by saying you don't have a scientific background? It sounds like you didn't really want or expect there to be legitimate criticism of her work or more recently her embarrassing public actions and now don't know what to do.

And no, if I was XMRV+ve I would still know how weak the science is at the moment. You keep saying we should 'wait and see'. I agree, right now the data is very ambiguous, so much that one shouldn't even speculate about XMRV unless it's with colleagues. Not directly to people with diseases, that's extremely irresponsible behavior. If every researcher (or doctor) talked about every ambiguous potential cause of a disorder you would be overwhelmed, even if it turns out to have only one etiology. That's why they don't do it: they don't want to give false hope, they want to be clear about how little is known. 'Possible' often means 'probable' in common vernacular.

You keep telling me not to decide too soon... and you keep thinking that it's about any association between XMRV and ME. We're not the ones deciding 'too soon', we're simply pointing out how causality hasn't been shown. In fact, mere *correlation* hasn't been shown. Yet because she has done research which may be related to your disease, this excuses her irresponsible behavior? Her knee-jerk accusations of *fraud* when another group could not confirm her findings? Her public statements promoting her research, despite ambiguous results? Her speaking at an antivax convention? I don't see how that could possibly work, even if you're desperate.

Your final comment is about tone. Just to be clear, you *came* to this blog, read it, and are now complaining about tone. You don't actually have to read it and a blog is a 'weblog', a personal account. There's absolutely no reason Abbie or anyone else has to censor themselves and not mock someone acting so stupidly as Mikovits. All kinds of crackpots attempt to speak about serious issues - should they not be mocked? Should they not be seriously criticized? Pointing out (humorously) that a researcher is acting crazy (or evil) is fair play. The researcher being irresponsible is the one playing games with you, giving you false hope.

ERV,
I think your criticism is perfectly fine. Good, even. Two points not inconsistent with this are the points I was making.

1. A person can be naive on one thing, and right on another. (I just thought of another: Lynn Margulis.) This has nothing to do with your criticism per se, but rather with the bigger controversy around the paper in Science.

2. Even the best criticism should have the right tone. At least, most people would think so. One has to wonder what your thoughts are about the tone traditionally used in scientific conflicts, which your voice, uh, diverges from. Why does that tradition exist, how does it function? I suspect it is not totally without benefits to the process of science. Everyone knows that opposed scientists usually hate each other and that their restrained tone is 'phony.' But nevertheless, the human mind has lots of cognitive biases. Superficially different presentations of the same essential thing are not always treated the same way by the mind. It is possible that reading half-snide euphemisms is not as offensive as reading the actual thoughts we all know they really stand for. There is an compelling interest perhaps in not creating scientific factions that are not on speaking terms with each other, since obviously there is a great deal of protracted uncertainty and conflict in science, much more than laymen realize.

Three Chord Monty, Mikovits almost hypothetical contributions to CFS research do not excuse her behavior. Your desperation to have your condition treated as a legitimate illness does not excuse her behavior. It doesn't matter if she won the Nobel Prize at some point, *she's acting like an irresponsible, evil person* right now. Acting like this just once is often enough to ruin a reputation because there are actual standards in science. Publically displaying a lack of integrity, obviously and illegitimately accusing others of fraud, and jumping on the woo/antivax bandwagon are all very clear signs that she's given up being a responsible scientist.

And I suppose I shouldn't even have to mention this, but it seems necessary: anecdotes are not correlation and correlation is not causation. There could be a user group of 50,000 people with CFS who 'just know' it's not psychological and they would all be *anecdotes*. A handful on a blog who 'just know' is not impressive. It's the same fallacious reasoning used for all kinds of pseudoscience and antiscience, so you should recognize why it's not convincing and unimpressive to someone with a scientific bent. Your personal outrage at receiving rational skepticism is misplaced and does not constitute an argument for the legitimacy of an XMRV-CFS connection, the acceptability of Mikovits' actions, or Abbie being incorrect.

Now presumably all of you will get distracted by tone again, since mockery is just so 'unprofessional'.

> we're simply pointing out how causality hasn't been shown. In fact, mere *correlation* hasn't been shown

Correlation has been shown by reports from three labs. But it hasn't been shown to be true. Reports are reports, wide-scale replicability is truth.

If a ~100% correlation is actually shown to be true, doubts about causation will be fairly limited. Koch's postulates are an epistemological ideal, they are not a standard that can actually be met in most cases. The ideal is very useful nevertheless: it shows you what work should be done to make conclusions as strong as they possibly can be.

> Now presumably all of you will get distracted by tone again, since mockery is just so 'unprofessional'.

Why do you think professional decorum is traditional in science? No reason at all? That's possible.

Anything I have had published I have been paid for. In the publishing world if you have to pay to get something published it is usually by a vanity-type press and isn't considered a legitimate form of publication.

An illiterate writer. How poetic.

Let me try to make this more clear for you:

EVERY PUBLICATION THAT ANY SCIENTIST HAS EVER SUBMITTED TO ANY JOURNAL HAS BEEN PAID FOR BY THE SCIENTIST. EVERYONE PAYS TO PUBLISH. THAT IS HOW IT FUCKING WORKS IN SCIENCE, LIKE I SAID FUCKING MONTHS AGO, YOU ILLITERATE RETARD:
...No one who has ever published anything would say something that goddamned stupid. You pay to publish in every journal, stupid! Thats the whole fucking point of PLOS! Classic journals make you pay to publish, then volunteers review your papers, then the journal charges for article access. PLOS, you pay, people volunteer, but everyone gets to read your shit...

ME: every single published paper in every scientific journal I have ever read has a small section on the bottom of the first page saying that the printing costs have been paid for in part by the publishing scientist and the paper must therefore be marked as an advertisement. Every grant has included in it funding to pay for the publication of papers for this reason. I suspect therefore that you aren't in the habit of reading or publishing scientific papers, in the future I would refrain from commenting on them to avoid looking like a complete tit.

The characterization of scientific journals as "vanity type press" might have some truth to it though.

ERV, I don't know if the ME Mafia are mentally challenged, but what they describe here about themselves is often consistent with debilitating mental illness. Suicidal ideation, drastic sleep disturbances, obsessive/compulsive behavior, hypochondria, persecution complexes.

In a psych ward, a patient may be treated with all sorts of medications and other therapies, but often the biggest contributor to recovery is being "reset" in an environment where illness-driven self-destructive behavior is replaced by regiment. Going to bed and getting up at a certain time every day. Eating three healthy meals per day. Interacting with other people in the real world. Getting some exercise and engaging in productive activities.

Simple as it would seem, it's easier and more attractive to deny the real problem and time-tested solutions and instead to construct an enemy--Simon Wessely, ERV, XMRV--and pour one's life into destroying that enemy. It's destructive for everyone involved, and the "enemy" Wessely, ERV, or XMRV is not real. He/She/It is a caricature, a construct.

You could excuse this behavior with a kind of insanity defense but even very ill people probably including some of the ME commenters above understand that the EVIL ERV in their heads is different from the real Ms. Smith. Different enough to make them uncomfortable with real world attacks on her. The ME maliciosos and their truly twisted "scientific" and political puppeteers are happy to ignore the distinction.

Soho @ #145

Uh-oh. You stuck the pin in the party pig.

Please adjust your cluster B personality disorder headgear and keep your arms inside the gondola.

We're goin' for a ride.

> what they describe here about themselves is often consistent with debilitating mental illness

You are travelling in circles. You are assuming that a mental etiology is proven for 'mental illness.' Is this possible a priori, yes. Is it proven that depression is psychogenic? No. Is it proven that the cytokine hypothesis of depression is false? No, it is a vigorous hypothesis. Here is one of the most impressive papers that found many different cytokines to be very highly elevated in major depression. There are several more such reports. There are equally many that found nothing, so there is a big and very longstanding dispute. What is not controversial at all, and repletely confirmed, is that administration of exogenous cytokines for cancer, hepatitis, etc, is highly depressing, and mentally and physically fatiguing.

'Mental illness' is not a clearly objectionable phrase. It does describe the illness. But the fact that it implies a mental etiology is very unfortunate.

> often the biggest contributor to recovery is being "reset" in an environment where illness-driven self-destructive behavior is replaced by regiment

Fair. This may stabilize people, and there's no doubt that behavior patterns can be a determinant of the waxing and waning of degrees of distress in mental illness. But can you show that it regularly effects radical cure? What's the evidence for a long term effect on chronic mental illnesses? If there isn't much, why should we think that this is pointing to the actual root of these conditions?

> Suicidal ideation

It should be pretty clear that suicide can result from any unbearable distress when there is little hope of relief - not only from the disease entities known as mental illnesses. Suicide rates are robustly elevated in severe physical illness. I would appreciate it if you would concede this point if I have convinced you on it; I will very readily do the same if you convince me of something.

Prometheus,
Don't be a wallflower. Since you get such a kick out of this, why not pitch in and join the pyrotechnical meltdown yourself? I realize you aren't trained as a scientist, but you aren't exactly slow witted. So whaddya think of the logic I just applied?

By the way y'all, the paper I just cited is free online. If you just want to see the data, go here:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2267745/table/T1/

The paper is from Harvard. That doesn't prove it's true or imply that one should not appraise it on it's technical merits. In reality, though, we all know that there is no belief or disbelief, only degrees of belief and disbelief, and being from Harvard increases the probability that the paper is true. If there were a betting market on scientific disagreements, and we were all betting in it, obviously none of us would completely discount the information of where a paper was written and where it was published.

> what they describe here about themselves is often consistent with debilitating mental illness. Suicidal ideation, drastic sleep disturbances, obsessive/compulsive behavior, hypochondria, persecution complexes.

Google [insomnia lupus]. Then google [insomnia multiple sclerosis].

> obsessive/compulsive behavior

"CONCLUSION: Obsessive-compulsive disorder was 10 to 15 times more common in this cohort of patients with SLE [lupus] compared with those in community-based studies of OCD."

http://www.ncbi.nlm.nih.gov/pubmed/15096067

If anyone doesn't know what systemic lupus is, it's a physical, inflammatory illness.

> hypochondria, persecution complexes

Obviously CFSers are in conflict with those that deny their physical illness. This conflict is legit if they really feel like they have the flu. When you say "persection complex" you are covertly assuming that they don't really feel like they have the flu: else their beef would be legit. Therefore, your argument has the form:

-CFSers don't really feel like they have the flu

-Hence, there is no reason for their anger at people who deny that they feel like they have the flu

-Hence, they have a persecution complex, suggesting a mental rather than a physical illness

-Hence, we can conclude they don't really feel like they have the flu

Do you see a logical fallacy here?

Moron,

I don't think your proposals are out of left field.

I don't draw mind-body bright lines.

In the past when I have suggested that anybody battling a major illness can use a little cognitive behavioral therapy and depression treatment to avoid alienating social support systems and family the response was...well...crappy.

The CFS gang accused of carrying water for a balding British bicycle enthusiast and the reactions were akin to walking onto the set of Romper Room and saying "Wow! You kids sure are sexy."

All psychiatric, psychological and cognitive treatment modes apparently incorporate straw, chains and shock therapy tailored to discredit the physiological causation model of CFS(who knew?).

There is also the downside of discussing post-cartesian scientific models attracting christian apologists.

I'm no wallflower but I will not dance with christian apologists. They step on your feet and want to saddleback in the parking lot.

I missed the part where I argued for complete mind-body separation. Must have been the other Soho who said that? Or maybe someone just knew what I meant, like they know what Wessely means? About time for me to make a negative behavior choice to grab a cold brown bottle. Happy weekend.

Oh, you're gonna get all biopsychosocial. Uh oh.

I haven't thought about that stuff much before. I mean I get what a diathesis-stress model is. But I haven't like, pondered it much.

How about Swedo's paper about 10-15x overrepresentation of OCD in lupus. That might let you make a decent argument that OCD, at least, might in some or all cases be *solely* physiogenic, not at all psychogenic.

Such an argument might not convince everyone completely but here it is. OCD might cause lupus (rather implausible). Assume lupus often causes OCD. Why? Through a physical mechanism, a psychical one, or a mixed one. Lupus sucks, but it's a lot like other inflammatory diseases mostly, and all diseases mostly have the same fundamental nature: they suck. So why would having lupus cause OCD through a psychical or mixed-psychical mechanism, when other diseases don't? Therefore it is likely to cause OCD by a purely physical mechanism, not a mixed mechanism.

I admit, something like 10% of lupus subjects are somewhat psychotic. That's quite interesting, and unusual for a common chronic illness with well-known physical lesions, better known for bodily effects like arthritis, rashes, fatigue, and malaise. So maybe psychosis could cause the OCD of lupus through psychical mechanisms. This would explain why rheumatoid arthritis, cancer, and all kinds of other diseases doesn't cause OCD: they don't cause psychosis. But I really doubt that all the excess OCD Swedo found in lupus stems from psychosis.

@ "Soho":
"What can decrease NK cell levels and function? Lack of exercise."

In that case there would be no difference between CFSers and sedentary controls, and everyone who wasn't exercising would be complaining of the things that poeple with ME are complaing of. If your answer to that is "yes they are", that only demonstrates with great clarity you do not know what it is that ME sufferers are complaining of, that you do not care to know what it is sufferers are complaining of, and how much you buy into the enforced squaring of the circle which has been going on since before 1988 when the CDC laughed at the people/doctors of Incline Village they had yet to visit.

"Like the people the ME malicia bully and brainwash to refuse GET."

GET is contraindicated in ME, which is a chronic exertional disease, not an acute or behavioural one. GET is however, suitable for the people you obviously have a greater interest in. In case you hadn't noticed, the data from large reviews of GET in Europe shows working hours decreased after GET. And there are still no GET studies on those with significant disability. Of course you won't hear that from those whose careers have been built on saying otherwise. It sounds like your the one who's been "brainwashed".

"What else decreases NK cells? Stress. Like what happens when you cruise the internet looking for conspiracies and affronts."

Early outbreaks recorded in 1930s (atypical polio) and 1950s. No Internets. 1980s - still no internets to speak of. Sporadic cases = no knowledge from mass "hysteria". Oh dear, your garbage theory is collapsing.

"Or when you confront doctor after doctor after doctor and work yourself into conniptions until you find one to sign off on the diagnosis and treatment you want."

I shouldn't really be dignifying this drivel with a response, but I was "signed off" by the first doctor who I saw. I think it's supposed to be part of the agreement that doctors don't have a right to foist treatments on people either, yet that hasn't stopped many damaging cases of eg. children being forcefully removed.

"How many people do you know who go from blog to blog to YouTube to news comment section and back around for days without sleep? I know some ME patients who do that"

How do you "know" this with such avowed perception, are you living in some sort of field "hide" in some sort of ME commune in order to glean these anthropological pearls? Or is it, this is what the gossip says at the canteen and in the Daily Bigot? Or maybe you'll just bullshit whatever reifying nonsense comes into your head? I hope you don't treat your "other mentally ill" (sic) patients with such obvious disdain.

"Why reach for a virus when stress, disrupted sleep, and sedentariness could explain the phenomenon?"

Firstly, because science is about examining all possibilities to discover the facts and not merely making an assumption based on a dice-roll, and secondly, because it can't. You'd have to be either a) very illiterate in the field or b) Very biased ie. prejudiced that CFS "unexplained" = "mentally ill" or c)Very stupid, to make such a claim. Oh, but I'm sure you'll follow up by claiming that inactivity also "causes spinal inflammation", as some wag at Crippen's blog propounded, amidst a flurry of invective.

"Blame the ME milicia who keep sufferers in denial and away from treatments."

Treatments that surveys show make 50% people worse, and which large reviews of RCTS show lead to reduced functionining? And when you say "ME milicia (sic)" who are in "denial", you mean who reject your cultish belief system that "ME doesn't exist"? Nice try.

In your NK speil you managed to not mention any of the other plethora of "unexplained" (see, that means, "not explained by deconditioning or wackiness or laziness" as much as anything else) findings such as muscle function abnormalities, endothelial abnormalities, Co-Q10 and hormone deficiencies (opposite of "stress"), specific signs such as dysphasia, episodic blurred vision, wheat and alcohol intolerance, the possible presence of remissions (sometimes lasting years) in some cases. Many published studies show responses to exercise paradoxical to what would be expected in sedentary or deconditioned pts. Lynne Gilderdale had had GET at a hospital, it put her on morphine on her back permanently. No-one like her has ever been studied in your blessed RCTs, but hey, who cares about the facts!

The day you can convince me (perhaps) of CBT/GET is the day you can show me a paper where the above symptoms/problems have been addressed and not merely "chronic fatigue", whatever that is. How can deconditioning be causal if there can be spontaneous remissions?

I don't care if tired mentally ill depressed/anxious people want CBT/GET, more luck to them, but it's the apathetic lumping of people with disparate diagnoses together and the cynical flying of all under a "ME/CFS" banner which is foolish at best.

BTW, a recent paper seemed to confirm Bazelmann's one that found a lack of deconditioning (which has never been proven, merely parroted with sneering arrogance by people like yourself). Anyway you got bit of a lesson here. If you're a scientist or a clinican I hope your thinking cap is on straighter, normally, and you don't make such an amateurish hash of it as you do with your "debating" or whatever your half-baked sophistry could be called.

PS. Re Mikovits and XMRV, I'm still doubtful, and I do think the WPI suffer from poor PR judgement. But lets not forget the NCI and Cleveland clinic were also involved in the original study. Good science rather than hot air will clear this up, eventually.

And accusing ME sufferers of "bullying" is laughable, when the medical "profession" are the ones calling people "pond life" (prescribers' journal) and "lazy bastards" (nurse in
survey) and saying sufferers should have a bullet in the head (anon doctor on blog).

They're the ones calling patients "disgusting", denying social and financial support, threatening to section, remove kids because to a pediatrician ME = child abuse obviously, and promoting therapies as "safe" which have a very high degree of worsened outcomes in the subset of CFS who meet ME criteria. You couldn't make it up and nobody is making it up. What planet is it on that none of this exists and instead patients have the entire medical establishment in an armlock, and not merely, the reality of a dozen mild-mannered people at a May 12th demo and some letter-writers and bloggers?

I think you'd have to have a very skewed perception to view a patient group who were so much disagreed with as somehow having this imaginary upper hand. Authorities and experts are called so for a reason (though not always the right one, as the MP expenses scandal illustrates).

This sort of nonsense is the stuff calculated to keep the status quo and keep people hateful, mocking and suspicious of sufferers, which so belies your assertion of there being no affront and so on.

Someone suggested suicidial ideation was a symptom of ME/CFS - it's not, by the way.

Yes it is. Nice post though. Well, maybe it is. Are you saying there is no excess as compared to healthy normals? I couldn't disprove that categorically. I'm relying on my impressions from reading thousands of pages of posts written by patients, not on real data.

"While vigorous aerobic exercise is beneficial for many chronic illnesses, CFS patients can't tolerate traditional exercise routines. Exercise programs aimed at optimizing aerobic capacity are not recommended."

http://www.cdc.gov/cfs/cfstreatment.htm

Compare with a UK (Liverpool) clinic:

"The type of exercise needed for recovery is aerobic exercise"

Are they really talking about the same illness?

I ran three miles, fast, three times a week for almost the entire 12 months of so of my decline. I cycled everywhere, not having a car. My running performance got lower and lower. After I was really severe, I ran three times, and got sick from it each time. Then I had to move out of where I lived with a few possessions and no furniture. My parents did most of it, but I got sick from the effort, had dyspnea for hours after stopping while lying perfectly still, and had total agony the next day. I was a competitive athlete from ages 14-18 and an avid recreational one from 18 until getting sick at 22. I'm hardly the only one meeting this description.

I did about fifteen bicycle rides of 80-120 miles, from ages 18-22.

Twice I rode 120 miles to visit my folks and then rode back after two days of rest. Not exactly a world record. (The Race Across America covers 3,000 miles in about a week.) But not trivial.

Even the tide wouldnae take ye oot, Bessie.

A bit but and a bit ben maks a mim maiden at the board end.

Though I'm loath to even throw my two cents into this longwinded diatribe by many parties, I'm on vacation and I forgot the next book in my series with no local bookstores, so why not......

I have published quite a few papers (as senior author) in several journals from work that I have done in industry. I never paid anything to publish. In the old days (the ones when you weren't born yet Abbie - no you're NOT old) we would have to pay extra if we wanted more than the standard 10-20 reprints we got when the manuscript published. However, neither I (nor my employer) ever paid any fees for publishing in the chemistry journals. So I believe you are mistaken on that point. I am NOT justifying the remarks made by Mikovits regarding PLOS vs. Science ect. and have never published in either journal. Paid subscriptions are usually required to view most journals, although reports of (some, all?) govt.(NIH?) sponsored studies are available to anyone for free. Perhaps, there is the distinction to which you refer. Journals may require fees for those types of publications for open access.

Also, with regard to Moron's statement in post #154 regarding 10% of lupus patients being "somewhat psychotic". I would suggest that your knowledge of SLE is very limited. Demyelinating lesions in the white matter of lupus patients is very common and the disease falls in the differential of other demyelinating ailments including HIV infection, syphilis, Devec's disease (neuromyelitis optica), lyme's disease, HAM/TSP and, of course, multiple sclerosis. Suffice it to say that white matter lesions can cause a multitude of psychological manifestations too lengthy to list here. However, I do not believe that demyelinating lesions are commonly found in CFS patients.

One other tiny piece of advice for the posters on this blog: Be humble - a lot was discovered before you were born.

Cynical,
I own Dubois' Lupus. But I haven't read the whole thing, let alone scrutinized it. Or many papers. So, no true expertise claimed.

Anyway, I didn't say a single word about demyelination: I just said 10% of SLE patients were somewhat psychotic. It is, honestly, not clear in what way you are disagreeing.

You are right that excess rates and amounts of demyelination, (compared to normals) are not found in CFS. Indeed, there don't seem to be any kind of structural abnormalities in the brain that are visible on scans of the living person: but there are a number of claims of functional ones, visible on (at least) SPECT.

Here is a ref claiming 10-15% lifetime incidence of acute psychosis in SLE (see the bottom of the page). This figure includes iatrogenic cases, but specifies that they are a minority. And here is Dubois' Lupus giving a figure of 8%, seemingly also a lifetime prevalence including acute episodes.

By psychosis I mean frank and disruptive hallucinations, or multiple wacky delusions of a sort not found in wacky normal people. When I googled on this, it seemed that some sources do use a very broad definition of psychosis in lupus that I would consider very strange. I also saw this estimate (of psychosis in SLE) running down to 2.5% (that's a prevalence - and apparently a lifetime prevalence rather than a point prevalence).

So yeah, estimates vary but I'm not sure my statement was way off-base. My statement was vague of course because I didn't specify "lifetime prevalence, including acute episodes" or what have you.

Moron - Your use of OCD in lupus patients to make or further any argument above is hopelessly flawed. Get over it. If you want your disease to be taken seriously (as I think it should), then you ought not try to be its scientific spokesperson. You are ill-suited to the task.

Cynical,
Your arguments are mistaken. I think I see now (and only now) what you are saying about known, gross lesion types. You are suggesting that if there is a purely-physical cause of OCD in SLE, then said cause is probably some sort of known gross brain lesions. These lesions are absent in CFS, so you therefore suggest that there is not likely to be a purely physical cause of OCD in CFS.

What you bring up is not uninteresting, but it is far from conclusive. You are making two important assumptions, without recognizing them as assumptions.

First of all, the known brain lesions of SLE are not, to my knowledge, proven (or nearly-proven) to be the cause of any or all of the clinical symptoms termed neuropsychiatric. (I would request a reference, if you disagree.) In fact, while correlation is not causation, there is not even a 100% correlation between clinically-defined neuropsych lupus, and those lesions (seen on autopsy). The correlation is a fair ways south of 100%. Therefore, your criticism of me rests squarely on an assumption that is quite unwarranted: the assumption that those lesions are the only possible physical cause of OCD in SLE.

Second, it is entirely possible that the gross lesions do cause the OCD of SLE, but that other lesions, yet-unknown and very fine, cause it in CFS. But anyway, I tried to make clear that my point was simply to suggest, and perhaps provisionally/experimentally prove, that OCD has a purely physical cause in lupus. If someone accepted my proof, he might go on to strongly suspect a purely-physical cause of OCD in other contexts. But he certainly shouldn't be 100% confident that this suspicion is true - and I acknowledged this.

To repeat an important point lest I be misunderstood, I'm not using a non-materialist philosophy of mind when I say "physical" or "psychical." I am assuming that mind states are simply brain states, and using "psyche", purely for succinctness, to refer to the particular brain states and brain state changes involved in what we call "the mind," "psychological trauma," and so on.

proofs in the pudding