XMRV and chronic fatigue syndrome: Brainstorm Challenge!

1 - These cells would reveal the gene expression God intended before evilution got a hold of them

2 - No, he's magic. Duh.

3 - a. The virus is happy the way it is
b. The British population was put there by the devil to test our faith
c. False positives were put there by... Actually, I have nothing for this one, it makes no fucking sense.

4 - a. Absolutely, Science is whatever we want it to be http://bit.ly/8ErxcT
b. Take your company public and let me buy in to the IPO...

Let me see...

1. No.
2. Yes.
3a. Single crossover event?
3b. Popuylation differences pointing to the fact the the virus doesn't cause CFS?
3c. They're pooling the samples?
4a. No.
4b. Do the research to support your assertions and stop acting like scientifically ignorant journalists.

So, what's my grade?

1: I've no idea. Could this really have thrown their work in a way that could explain the results published in Science?
2: In the abstract, AIDS and CFS are both symptomatic diagnoses, so it's possible that an infection caught early and treated effectively might not lead to these diseases. But an HIV infection's not going to help your chances of avoiding AIDS.
3: I really want to know this. Did anyone look at that article I posted about the trouble with identifying Lyme disease with PCR? http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1195970/?tool=pmcentrez I didn't really understand why this is the case and was hoping someone with a better understanding of the science would be able to help. From what I've read, properly calibrated PCR should be able to detect any virus going. I don't know why this doesn't seem to be the case with Lyme, and Mikovits thinks it is not the case with XMRV. (The above article looked respectable - is it?)
4: I didn't watch the Mikovits talk, but I have seen written summaries in which she told patients that they should not be paying for XMRV tests at this stage, and that it would be better to be trying to get involved with one of the studies currently taking place.

The WPI certainly seem over-enthusiastic about their work, and that makes me suspect that they may be nut-jobs. But their enthusiasm could be justified. Based on the currently published work, it is not - but I expect they'll be in contact with a number of other ongoing replication attempts. The London group reported that they'd heard that other replication attempts were failing, but either way we'll have to wait and see.

One other thing I disliked about (perhaps inaccurate) reports of the talk I've seen - apparently she said that XMRV is very difficult to find, and many of the samples needed to be tested multiple times. As their initial study was not blinded this makes it sound quite likely that XMRV (or whatever they found) could be endemic, and either able to take advantage of the weakened immune system of CFS patients, or they just looked harder with the samples from CFS patients, or they just kept looking until they happened to get a positive for whatever reason.

I'm really not in a position to judge, but it seems unlikely to me that Mikovits is as incompetent as you seem to imply. She could well be wrong about XMRV, but if so I expect there would need to be more reason behind her mistake than sheer thoughtless stupidity.

I also read that she said she did not know much about CFS, and was just concentrating on the virology. Given the confused and contradictory state of the research surrounding CFS Iâm worried that she could easily have found supporting evidence for whatever theory she developed, especially if she was being guided through this research by those at the WPI who already seemed to be working on the assumption that CFS has a viral cause. A skewed reading of the available literature could further inculcate the exaggerated confidence that researchers develop in their own data. She occasionally seems to make controversial claims about some of the data surrounding CFS as if these are settled matters of fact.

I really want to know why so much of what I've read about PCR assumes that it is totally accurate, and able to detect anything - but Mikovits seems to think this is not the case with XMRV, and the article I posted above says it is not the case with Lyme.

Iâll be sure to watch this talk soon if itâs still online. I understood there was some problem with the broadcast? Only the first twenty minutes were shown?

Without reading the comments here - post only:

1. I'm not entirely sure what 'methylation' is. But without following the link:

What do you think will happen?

Sounds like you'll wind up with a bunch of messed-up white blood cells. My guess is they'll either die, or mutate into a useless goo.

Do you think that is a good diagnostic test for retroviral infection?

Based on my guess, I fail to see how this could be a test for anything other than "What happens when you mess with normal DNA/histone methylation in human white blood cells?"

In brief: No, I don't think it would be a good test.

2.

Is there a chance MJ would develop AIDS despite receiving antiretrovirals? Well... From everything I've read here, HIV is a hardy little shit.

Retrovirals aren't a cure so much as a means of getting HIV to settle the fuck down and thus extend the life expectancy and quality of life of the patient. Early treatment is obviously good, but without knowing the data, I'd say there is definitely a good chance HIV will come back despite receiving early treatment.

3.

What are possible explanations for this?

a) If the 1984 strain examined was already a fit little bastard, there would be no selective pressure to evolve over time.
b) Evolution magically stopped working in this specific instance.
c) The methodology of the analysis was flawed.

... why could the British group not find MLV sequences we know are conserved?

... Isn't that a contradiction? If the conserved sequences aren't conserved, then that constitutes evolution, no?

Throw in option d) The researchers are demented half-wits that don't understand what they're doing.

... why would the PI looking for this virus be worried about PCR giving 'false negatives'?

Sorry - without following up with more research online, I don't know what 'the PI' or 'PCR giving 'false negatives' means. Can't comment.

That said, if options c) or d) above are at all correct, it sounds like they're trying to ignore data that doesn't match their desired conclusion.

4.

Do you think that is the most scientific approach to this new virus?

Fuck no.

What advice would you give this group of scientists?

Do some actual science.

The scenario described is that of a transparently money-grubbing, panic-mongering fraud.

-----------

How'd I do?

Daniel Schealler, is what you posted satire?

Actually, no... And now I'm worried I've gone and embarrassed myself somehow. Did I pull a Poe or something?

My knowledge of biology is genuinely really limited - consider me highly ignorant of the topic at hand. I thought that was kind of the point of the blog post in the first place - to find out what I thought from the context presented. Presumably because if it turned out I agreed with Abbie this would contribute in some way to a Hilarious Smack Downâ¢.

Now you've asked me if it was satire, and I was semi-serious... So I'm not so sure. Should I be blushing in embarrassment right now?

Wow, ERV. I was really hoping that you'd refrain from cherry picking remarks and/or take into consideration other comments that contradicted your already cherry picked bashing material, but I guess not. Maybe someday, huh? Hope springs eternal?

To answer your question, I would say that my opinion of those researchers is that they're working their asses off on a problem which has been ignored for the past several decades by pretty much the entirety of the world's governmental, biomedical and research establishments, and to rock on, you bad mothafuckas!

Seriously ERV. Look at the NIH budget for CFS research. An average of $5 million per year for the past several years, $4 million in 2009 and a projected $3 million in '10. It's the same all over the world. The UK government has never funded one single piece of biomedical research into ME/CFS, instead funding severely methodologically flawed behavorial management studies run by investigators with heavy insurance industry conflicts of interests and who consistantly misrepresent their findings. By all means, if you think you can do better, and this goes to anyone reading as well, then please be my guest. Sincerely.

1. This one I can't comment on.

2(and part of 4). What is your point? That early detection of any disease in the entire fucking universe isn't a top priority in regards to treatment? The notion of the benefits of early detection is so prevalent that I don't ever think I've heard it challenged. But not by you, ERV! That's not the way you operate! You don't fall for that 'early detection' mumbo jumbo, do you? Pshaw! Let that disease progress! Who else but a total bitch would even suggest such a thing, right ERV?

As gf1 pointed out, Dr. Mikovits clearly stated that there was no reason to spend money on testing, with patients being much better served by simply enrolling in ongoing research studies instead. What a fucking cunt. I mean... I just... I can't even find the words. Can I have some of your Valium, ERV? This is pissing me off way too much.

3. Did you miss the numerous reasons given why the PLoS results might have been affected? Are you completely ignorant of the current status on research into XMRV, with three studies finding significant associations to disease and three not finding any XMRV whatsoever in 914 samples, or is this just another example of that nagging/inconvenient 'context' which you seem unable to grasp the import of? That fact alone is more than enough reason to be worried about 'false negatives'.

The PLoS researchers didn't quantify their DNA, therefore who knows if they had enough to even run the tests accurately? Their control was plasmid in water, which gave extremely weak positives. If you can barely read your control, which again is plasmid in water, who knows if your test is sensitive enough to detect XMRV in blood?

4. Have you ever considered that she knows more than you on the subject, has inside information due to the nature of her work, and knows more than she can say in detail publicly? XMRV is being studied in gynocological malignancies by the same group in Utah that found an association with prostate cancer, led by Ila Singh, so who knows who else is studying it and what early results they are finding?

Not to mention, my impression, as well as most everyone else I've seen comment on it, was that Dr. Mikovits was just speculating about XMRV and breast cancer and not drawing any firm 'connections', as you put it. Not to mention I think she was referring to a certain type of breast cancer that is very aggressive, so what's wrong with speculating? Everyone but you seemed to be aware that Dr. Mikovits was just speculating on the subject and not 'connecting' anything, so that's purely on you, not her.

As for XMRV and autism, maybe you should ask Dr. Thomas Insel*, Director of the National Institute of Mental Health and Chair of the federal government's Interagency Autism Coordinating Committee (IACC), who stated the following when questioned about a potential link between XMRV and autism- "We are hot on that, and I wish I could tell you more," Insel said. "All I can tell you is that we have an intramural program here which is kind of our home team, which has seen about 400 kids with autism over the last couple of years. And they have been looking at regression; they've been looking at recovery." He said the researchers "jumped on the XMRV thing even before it was published."

Dr. Insel said that he had heard that researchers at the University of Nevada had identified XMRV in about 40% of ASD children studied. "I have been trying to track that," he said. "There is a paper that has been submitted, but I haven't been able to get it, and I don't know what the data look like. But I think this is really interesting."

As for Lyme disease, Dr. Mikovits noted the similarities between 'Chronic Lyme' and CFS and speculated that XMRV might have a role in it as well.

As for the supplements, I believe it has been found that XMRV has three different receptors- cortisol, maybe estrogen(don't quote me on that) and one other, and Dr. Mikovits was just giving general advice as to what kind of supplements could be taken that would reduce inflammation. Holy fucking shit, what a maverick!

Not to mention another inconvenient piece of context on the subject which you have dutifully ignored, is the types of diseases that MLV's have been known for several decades to cause in other mammals. Yet more inconvenient context on the subject, huh ERV?

And to everyone commenting solely based on ERV's shitjob of a review, the answer to your final question is easy- you fail.

* http://www.ageofautism.com/2009/12/david-kirby-dr-insel-on-rising-asd-n…

So just to get this out into the open from the start:

Is this a critique of Judy Mikovitz (and her personality) or is it a serious review of the work done by the NCI, the Cleveland Clinic and the WPI?

If it's more about Judy M then I'd like to suggest another critical review of a ERV's 'careful and detached analysis' as well her personality.

John, it's nice to see that some people are consistent in their posting about science. Your track record is unbroken.

And unless ERV checked back on the ProHealth site (they got the web-cast back on the air after it crashed from too many hits), ERV divined all of this as conclusive from just over 27 minutes of a 2:30 lecture (nearly 90 minutes of question and answer were aired from about 4-5:50 PST but there was 60 minutes of blank air between that and the first 30 minutes).

The entire lecture is due out on Monday or Tuesday.

@ERV - You just couldn't wait another 2-3 days before shooting your mouth off and revealing your insane biases, could you? Now that's some real objective work on your part!

This is a trip! Smith, you are doing science right, girl!

Have you dunces (SC, John) ever heard of Koch's Postulates? Does this new fangled XMRV satisfy them, or have they merely been ignored?

Have they infected Chimpanzees with XMRV? If so, did the chimps get CFS?

Mickovits is overeducated ditz. Anyone with a brain can see what she is doing -- manufacturer a narrow "cause" for a multi-factoral, amorphous syndrome (Chronic Fatigue Syndrome), develop a test for this "cause," develop a vaccine for the "cause," develop drugs to target the "cause". Write a buncha papers on it.

This is so blatant. CFS, also known as the "Yuppie Flu", probably is a bummer for people who have it. However, it has absolutely nothing to do with some new mysterious virus. Great job, Smith.

I don't know about Magic Johnson, but this website is quickly developing AIDS in the comment threads. I had no idea that such an obscure topic could be such a lightning rod for fruitbars and their tl;dr rants.

Tyler,

Do you have anything to add about CFS or XMRV or are you just a fat moron?

"Anyone with a brain can see what [Mikovits] is doing -- manufacturer a narrow "cause" for a multi-factoral, amorphous syndrome (Chronic Fatigue Syndrome), develop a test for this "cause," develop a vaccine for the "cause," develop drugs to target the "cause". Write a buncha papers on it."

Haha, find the cause of a disease, develop an objective diagnostic test or tests for this disease, develop a vaccine and/or drugs to treat this disease, and yet she's a ditz for doing so. That's gold, man.

Anyone who watched the lecture knows that she's well aware of the limitations of the current case definition, which itself is one of the biggest trips about this whole thing.

Right now anyone with just about anything wrong with them actually get excluded from the case definition. To say that the implications for this are enormous would be an understatement.

What happens is that the exclusionary criteria, while necessary to exclude more common ailments, create a catch-22. What if the current criteria for CFS are in reality only describing the beginning stages of XMRV infection? Then when more objective abnormalities start becoming apparent, the person neatly gets excluded from further 'CFS' research, and the whole thing just keeps on repeating ad nauseum? How neat is that in a case study of how not to research a disease? Can anyone else understand how fucked up that is? CDC currently excluded patients who have abnormal Romberg tests. Other researchers use abnormal Romberg as strengthening their diagnosis. Some investigators exclude those with POTS. Others say that POTS is simply an objective manifestation in CFS.

Nancy Klimas recently noted that the case definition for AIDS was originally males between 18-65 with opportunistic infections. Only when HIV was discovered did women and children get included. Now hopefully instead of 'CFS', people will have to be XMRV positive to be included in (certain) research studies. At the very least, CFS studies might have to distinguish between XMRV+ and XMRV- subjects. Then those with other objective abnormalities will start to be included and these abnormalities will actually be listed as part of the XMRV disease process instead of these patients being excluded from studies as they currently are.

Can you fucking dig that?

http://www.virology.ws/2010/01/22/kochs-postulates-in-the-21st-century

Love this quote from john: "Dr. Insel said that he had heard that researchers at the University of Nevada had identified XMRV in about 40% of ASD children studied. "I have been trying to track that," he said. "There is a paper that has been submitted, but I haven't been able to get it, and I don't know what the data look like. But I think this is really interesting.""

Science by urban legend! Clearly the best methodology.

I just finished grading my King Willamâs GKP and it is objectively established that Iâm reel dummm. But Iâll try.

1. I donât know what they would be if there was no replication but I am assuming they would be useless so ...goo and no.

2. If by early you mean during the window before mutation resulted in anti-retroviral resistant quasi species then ...yes.

3.
A. Because mutations have not proven sufficiently advantageous in the last 25 years to pressure select for quasi species.
B. Because infections with the virus may be localized.
C. Because they have a vested bias toward a specific outcome.

4.
A. No
B. Stop

There are two obvious and flawed premises held by those defending Mikovits:

1) Her results aren't impressive. I don't know how many times the flaws in her studies need to be pointed out before they'll get addressed, but *I* can spot them on my own and I'm a lowly undergrad. ERV listed several today, but there are many she's addressed before and some she hasn't even pointed out yet.

2) As such, it's more than fair to point out that she's jumping the gun by doing *anything* other than saying that she has tentative maybe-positive results. Not going out and giving speeches to CFS patients when she doesn't even have a defensible link. Not discussing the possibility of treatment or test. She needs to do more work. This is truly low behavior for a PI and you *have to* start speculating about why she's doing it. Is she just incompetent? Does she want money for more research or maybe just more money, scruples be damned?

I suppose I didn't state what the flawed premises were... of course, they are that

1) Mikovits found a cause of CSF and
2) Mikovits is just reaching out to help people in a reasonable fashion, shouldn't PIs do that?

oops.. I meant no for Magic Johnson. Tole u I wuz dummm.

Hey Stephen,

Here's where your 'Urban Legend' started:

http://www.hhs.gov/advcomcfs/meetings/presentations/peterson_1009_pt4.p…

Slide four. These 15 autistic patients were all first degree relatives of the 101 CFS patients. If you picked 101 people off of the street and 15 had FIRST degree relatives with ASD, YOU would be a negligent idiot not to follow up on this.

I'd suggest waiting for the additional studies before revealing your ignorance?

This slide was presented to the HHS CFS Advisory Committee. Remember J. Coffin's commentary on the WPI Science article - "A New Virus for Old Diseases?"

http://www.sciencemag.org/cgi/content/short/326/5952/530

Nice blog ERV. You've created a place where the Blogger is the Troll and in doing so gave license to cowards like yourself hiding behind the facade of a bully. You've created a whole new mode of 'investigation' - Science by character attack. You, Science Blog, The entire state of Oklahoma and your Advisor should be proud.

Cherrypicking results?

No, ERV is cherrypicking methodologies, which is legitimate science.

As in, the methodologies of this PI and her "conclusions" are worthless. Even worse, she seems to think they're valid and is acting on them, no doubt to the detriment of her victims patients (and presumably to the benefit of her purse).

Without good methodology, all the work in the world might well be useless.

The fact that the PI is attacking those who are attacking her methodology is just icing on the cake -- proof that she's a quack, and no scientist. If her methodologies are good, she should defend them. Being indefensible, however, she can't.

Eyesoars - spare me the hyperbole. You want to do calisthenics with your word processor, go right ahead, but you come across as a sycophant with nothing of substance to say. JM doesn't have patients, you donk.

| "no doubt to the detriment of her victims patients (and | presumably to the benefit of her purse)"

You come across just as flaky and deranged as the nutjobs alleging a CDC counterplot.

#20 SC,

Somebody needs a hug.

*hug*

See? All better now.

This whole blog comes across as amateur and juvenile, running on cheap put-downs and character assassination rather than reasoned debate.

I was not surprised to see it is run by a graduate student -- apparently a very narrow-minded one who is wholely ignorant about published clinical research into CFS/ME.

When I got my PhD, there were always a few grad students (and faculty) out to prove themselves by cutting down others rather than engaging in a more thoughtful process. Insecurity is rife in the lower rungs of the academic ladder, so it is not all that surprising.

"Insecurity is rife on the lower rungs of the academic ladder." So THAT'S why Judy Mikovits is so mad at the world?

1. You reactivate latent viruses and bits of old viruses like, gee, ERVs?

2. Low but possible.

3. You contaminated all your samples with the same virus. You know, that plasmid you got from Silverman.

4. Advice. Get somebody to run your institute who has some experience running a lab and dealing with the public. I dunno, say, someone whose last job was not tending bar.

"Do you have anything to add about CFS or XMRV or are you just a fat moron?"

Neither. A moron would be someone who ranted in a comment thread feigning some technical knowledge of virology.

Fill in the blanks, genius.

25# Lisa

Yea!

Quit putting people down erv, you juvenile thoughtless amateurish character assassinating narrow minded ignorant lower rung on the academic ladder.

So Lisa, I already have a doctoral degree but I was thinking about a PhD in self important hypocritical bullshittery. How many box tops do I need and how long have you had your "disease'?

Oh, great. Now in addition to all the CFS/XMRV quacks, we've got a goddamn tone troll. Go away and never come back, Lisa. kthxbai

The PowerPoint link in post #20 is from a presentation (XMRV Association with CFS) which Dr. Peterson (of the Whittemore Peterson Institute) gave to the US HHS Chronic Fatigue Syndrome Advisory Committee on October 29. 2009.

You can find links to all of the PPTX files from that presentation here:
http://www.hhs.gov/advcomcfs/meetings/presentations/xmrv_cfs.html

The agenda for the meeting is here:
http://www.hhs.gov/advcomcfs/meetings/agendas/cfsac091029_agenda.html
It included, of course, a number of other items besides Dr. Petersen's presentation.

Links to all of the presentations at the meeting are available here:
http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html

And in case anyone's interested, here's a page with links for all CFSAC meetings:
http://www.hhs.gov/advcomcfs/meetings/index.html

Note that a PowerPoint presentation is not a scientific paper; it is a visual aid to a spoken presentation, and as such, it is at best a very limited source of information.
I'm a techical writer; I write end-user documentation. On more than one occasion, I have been in the position of using PowerPoint presentations as source material, and I have found that it is not always easy to derive concrete, unambiguous, useful information from them -- I generally wind up contacting the author of the presentation and asking what this or that item on a slide acutally meant.

Note also that presentations before a government committee investigating a controversial issue can (and often are) political, or at least politicized, to at least some degree.
When it comes to controversial medical issues, the most vocal and active participants in public discussions are often representatives of advocacy groups. Such groups can do a lot of good -- drawing attention to a problem, demanding funding for basic research, and later on, for treatment, etc.

But I don't think that advocacy groups are generally that good at acutally doing scientific research, analysis of research results, or decisions about the scientific aspects of the research. Even if an advocacy group includes experts in the field, the basic purpose of such a group is to fight for a particular position, idea, or course of action, and not to examine an issue dispassionately.

It is, I think, very likely that when an advocacy group is involved in basic research, it will be inclined to attach itself to a theory at an early point -- long before the matter is settled on the scienctific side of the question -- and fight for it as if it were a political cause. The result is, unfortunately, ganerally neither good science nor good advocacy.

I do get the strong impression that the Whittemore Peterson Institute does function at least in part as an advocacy group, and that it is approaching the XMRV theory as a cause to be fought for, rather than strictly as a scientific question. There may be (and probably are) people on the other side of the XMRV question who are driven in part by advocacy (the psychiatrization of medical problems, for one thing, was not a high point in the the history of 20th century scientific thought, and we are still dealing with its reprecussions). That happens, and it is one of the reasons why it is important to have more than one or two research teams investigating a controversial problem.

People can generate as much heat as they want on a subject, but without light, it's still hard to see what's going on, and political debate is still no substitute for scientific research.

ATTN TERRIBLY OFFENDED NEW READERS
If you dont like me, my blog, my tone, thats fine and dandy. Im misanthropic, so its hardly fair of me to judge someone who doesnt like me. Im all for it!

Though I think the answers to these questions are on my blog, I totally understand why you arent reading/exploring here if you dont like me.

So, why dont you go to Wikipedia, Google, anywhere else, and learn a bit about retroviruses. Look up 'quasispecies' and 'drug escape' and 'epigenetics' and 'ERVs' on a site that you trust, written by a person you like. Read statements from the XMRV-->prostate cancer researchers (a disease that kills people), and compare them to comments from XMRV-->CFS researchers.

Then come back and read/answer my questions.

Im just asking questions.

#30 ERV

Don't scare them away.
1. Collect TERRIBLY OFFENDED NEW READERS
2. ????
3. Profit!

#27 Tyler DiPietro

"A moron would be someone who ranted in a comment thread feigning some technical knowledge of virology."

True.

Yet you failed to counter the accusation 'fat'.

What say you to that Mr. Fatty McFatpants?

Can we get more people in here who will make crass immature remarks to the effect that ERV et al are crass and immature?

Maybe we can plump up the stats and get Arnie a valentines sweater before the next cold snap.

ERV, the point is you aren't "just asking questions." You're slandering someone doing important research in the field. If you want respect for your ideas, show it for others.

Hey, I like misanthropes very much. But the discourse isn't misanthropic, it's simply nasty and childish.

Having a public blog means you get public responses. Sorry if that disturbs you and some of your followers.

What have a written, exactly, that is 'slander', and towards whom?

What Judy Mikovits did was slander.

Im asking (admittedly) advanced science questions, and (rightly) questioning the bizarre behaviors of a group of researchers, including Judy Mikovits. Just in case you think Im picking on Mikovits, I am also disappointed in the PIs who have jumped to make speculative claims to the press.

So, why dont you Google around and see if you can figure out what Im getting at. I think that will be more satisfactory for you than reading what I write.

ATTN gf1 and your question about PCR & Lyme disease!
So one of the other PIs around here is a big-wig in Lyme disease, so I went and asked him your Q!

He said the reason why PCR isnt useful for Lyme disease is that the little buggers arent just floating around your bloodstream. Even in people with really bad Lyme-disease arthritis issues. Take 10 mls of blood from a patient, you cant be sure youre going to get enough bugs to get a PCR reading, even if they are super positive.

There are also a ton of issues with Westerns/antibodies for Lyme disease, because the bugs you grow in the lab/in ticks express different proteins on their outsides than bugs that are in humans.

Lyme disease is apparently a big pain in the ass to diagnose :-/

For those of you keeping score at home....

Simon Wessely Shill, Civility and Slander/Defamation cards played.

'Science is a Religion', wall-o-text illness anecdote and All Caps post are still in the deck.

C'mon Erv! big bucks no whammies!

Thanks a lot for that info ERV. Is it possible something similar could be happening with XMRV? Or do we not really know enough to say? Is it really rare for a virus to behave like this?

If the WPI's culture tests are picking up many more positives than PCR, what should they be doing to ensure that this is not the result of contamination? Ta.

Prometheus, I think the sarcasm card has been played out too.

@ TotallyUncool, you're right about the ppt's author being Peterson and I also agree with you on the amount of weight that ought to be ascribed to information presented in such settings - it MIGHT be interesting and if so, it might warrant further investigation. My point in posting it was to quell the accusation of the 40% figure being an 'urban legend' and also to point out that it was based on 15 ASD patients. While not an Urban Legend, it should be viewed as highly statically unstable at best.

Thanks for posting all of the additional detail for those that might be interested.

I cribbed off of Kevin's test, because he's the cutest boy in the class.

40

I cribbed off of Kevin's test, because he's the cutest boy in the class.

Posted by: Teresa | January 25, 2010 8:42 PM

No, no, no!
This is why the younger generation is having so much trouble in school!
You're supposed to crib off of the dweeby-looking boy who wears thick glasses and only talks to his calculator.
You play doctor with Kevin!

(Don't look at me! I was never the cute boy.)

These 15 autistic patients were all first degree relatives of the 101 CFS patients. If you picked 101 people off of the street and 15 had FIRST degree relatives with ASD, YOU would be a negligent idiot not to follow up on this.

Doing a little mental math with the incidence of ASD and average number of first-degree relatives, why do you think this is such a huge thing?

Hm. Where to start. Chronic Fatigue Syndrome is such a poor name for this condition, everyone is fighting to rename it but nobody can agree on what it should be called, because the root cause has still not been discovered. (Even with all the hoopla surrounding XMRV, most commentators are careful about saying it has not been proven to be a root cause, only that it *might* be, and further research is necessary.)

A survey indicated that approx half the practicing physicians in the country don't even believe that it is a real illness. However, it *is* a real syndrome, and people with it are genuinely ill, often extremely ill. To clarify, the word "syndrome" is defined as "A group of symptoms that collectively indicate or characterize a disease, psychological disorder, or other abnormal condition." There is a group of symptoms that collectively characterize this illness.

Although aspects of the illness vary from person to person, generally speaking it's characterized by a number of biological abnormalities: low body temperature, low blood pressure, low blood volume (about 80% of average), low thyroid function (and other endocrine abnormalities), impaired methylation cycle, certain patterns of hypoperfusion in the brain (low blood flow in parts of the brain), and so-called post-exertional malaise. This last condition is easily measured, but requires 2 stress tests instead of 1: The first day, the patient's results will often be normal or near normal. However, if the patient comes back and re-tests one or two days later, the results will be distinctly abnormal, because they don't recover from exertion in the normal way. Also, the immune system is almost always abnormal, with patients turning up positive for a variety of pathogens, frequently half a dozen or more at the same time. In most CFS patients thus far studied the RNase L enzyme is broken up into pieces, rather than being intact as it should be. These things are not just hearsay, all of them are quantifiable with the appropriate testing.

So we have a profile, a characteristic collection of abnormalities that is found in a lot of CFS patients, but we don't have the root cause yet. I think the WPI's study is an important step. They'd be the first to tell you that it now requires many more studies (dozens of which are now underway) to confirm or deny or amend the results published in the Oct 2009 study. Science is a big sandbox, and the process is messy. I'd really like to see people give the XMRV issue and the WPI/JM etc some time for this to work it's way along before lambasting them.

Last point: Dr Nancy Klimas, a doctor and researcher in Florida, has spent decades working in the HIV/AIDS field. She knows retroviruses, and she says that the XMRV retrovirus is both simpler than HIV and more stable, i.e., isn't mutating as quickly. For those reasons, she's optomistic that treatment options will be easier to find for XMRV than they were for HIV.

@ DC Sessions

"Doing a little mental math with the incidence of ASD and average number of first-degree relatives, why do you think this is such a huge thing?"

It is an interesting thing, one deserving more investigation. It's not necessarily huge, that will be borne out.

So, what is the prevalence (not incidence) of ASD? According to Newschaffer CJ, Croen LA, Daniels J et al. (2007). "The epidemiology of autism spectrum disorders," Annu Rev Public Health 28: 235â58; the prevalence is 6 per 1000 but they concede that this is probably an underestimate.

So lets increase it by 66% to account for the admission tha tthe figure is probably low and say that the prevalence is 1%. How many first degree relatives does the average person have (parents, offspring and siblings)? I'd suggest that most of the persons with ASD were either siblings or children. Say we each came from families with 2.5 kids and each had 2.5 kids (and just for kicks, throw in one parent - again these are probably generous estimates - CFS patients often are single and too sick to have families) that means there are six first degree relatives in the pool. Any of the five without CFS could be candidates and therefore in the general population you'd expect at best roughly one in 20 families with a CFS patient to have an ASD family member; 5%.

15% is a three fold prevalence rate (again in a very small group) and within that group, WPI found a XMRV in 40% (compared to the 3-4% that was found in the population), a ten fold increase.

Again, nothing that I'd write a paper on but one hypothesis is that IF XMRV is found to play a role here and that role involves immune suppression, (Dr. Klimas has said there does seem to be reason to suspect vertical transmission), then why autism. If the infant was born with XMRV and then the immune system fails to control infectious entities during a period of critical brain development, would the impact of an infection that in many adults leads to numerous autonomic and CNS problems be much more fundamental damage to the child than it would to an adult with a much more robust immune system?

The prevalence of ASD and XMRV (as measured by the WPI) is much higher in this preliminary group than one would expect. I haven't run the statistical probability here but I really don't care. Small numbers are inherently unstable and should only be used cautiously both when deciding to follow something further or to dismiss it as meaningless.

A reasonable hypothesis or an important question is an large part of what makes this worth exploring further.

Prometheus, instead of your predictably supercilious, and insufferably smug witticisms and wisecracks (in other words, your schtick), why don't you put your mazuma where your mouth is? Perhaps the Cleveland Clinic, The National Cancer Institute, and the WPI (and, by extension, Science Magazine and the New York Times) are all wrong on the CFS XMRV correlation. But there is not much doubt, these days, that CFS is in fact a real illness that causes significant morbidity. Sandwiching the word *disease* with quotation marks in order to ironically accentuate all of the banal misconceptions of CFS (CFS patients as deluded, CFS patients as feckless moaners and groaners) only proves what a completely incurious schlemiel you really are. Other than championing the tired cliche of the neurotic, achy neurasthenic, what's your point? CFS is a wilderness. There are chuckleheads on both sides of the debate in this wilderness - and you're one of them.

Whoops, I guess you were waiting for a non sarcastic response?

Ok. You and I are on the same page in that I think there is probably a physiological determinable cause or causes for a large percentage of people who fall within one or more of the half dozen different CFS diagnostic criteria which would conform to one or more of the half dozen definitions of disease.

For someone who has had the mantle of CFS draped over them the preceding is a crushing paragraph but it is an honest one that has nothing to sell.

It is not like it hasnât happened before. People used to joke about âeverything diseaseâ until DiGeorge syndrome explained the cause of a ton of conditions formerly believed to be unrelated but that took years of work, technological catch up and reproducible results.

Acceptance of the length of the CFS tunnel is a cognitive challenge from hell. It is going to lead to chronic depression, alienation, resentment and rage that will aggravate the symptom profile to a state of what seems to be insurmountable disability.

At that point, and until causation/correlation is legitimately established without bias and with reproducible, results a CFS sufferer is left with the support cohort that accompanies anything else from lupus to a threshing machine amputation: PT, CBT and treatment for depression.

The people associated with Mikovits are recommending an expensive VIP Dx test as well as therapeutic touch, healing touch, Reiki, Johrei, vortex healing, polarity therapy, ginkgo biloba, white willow bark, valerian root, the Gaby nutrient cocktail etc..

That is, in every respect, opportunistic morally bankrupt exploitation.

Yet the indictments from at least one contingent of chuckleheads are all against a balding British bicycle enthusiast who is portrayed as a Wagnerian dragon clutching a huge heap of blood soaked coins.

Until the Mikovits results are replicated they are not science. Even then....no causation just a soft clue.

In the interim if you are going to assign dubious motives I think a jaundiced eye is better directed at someone plucked from obscurity and handed many millions by a political machine boss with a sickly child and his own cement mixer.

@ ERV

âThank you for commenting.
Your comment has been received and held for approval by the blog owner.â

A bit cowardly of you given your misanthropic streak, don't you think?

And this:

Your post was denied "because too many comments have been posted by you in a short period of time!"

@ Prometheus - You suggest that all that is left is PT, CBT and treatment for depression. Aside from the treatment for depression when present; Wrong and Dangerous!

CBT/GET (PT) was tried extensively across Belgium for several years. And what was found was that CBT and GET are actually harmful to many with CFS.

Neuro Endocrinol Lett. 2009;30(3):300-11.
Chronic fatigue syndrome: la bête noire of the Belgian health care system.

Maes M, Twisk FN.

Maes Clinics, Antwerp, Belgium. crc.mh@telenet.be

Abstract:
The World Health Organization acknowledges Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) to be a medical illness. ME/CFS is characterized by disorders in the inflammatory and oxidative and nitrosative stress (IO&NS) pathways. In 2002, the Belgian government started with the development of CFS "Reference Centers", which implement a "psychosocial" model. The medical practices of these CFS Centers are defined by the Superior Health Council, e.g. treatment should be based upon Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET); and biological assessments and treatments of ME/CFS should not be employed. Recently, the Belgian government has evaluated the outcome of the treatments at the CFS Centers. They concluded that a "rehabilitation therapy" with CBT/GET yielded no significant efficacy in the treatment of ME/CFS and that CBT/GET cannot be considered to be curative therapies. In case reports, we have shown that patients who were "treated" at those CFS centers with CBT/GET in fact suffered from IO&NS disorders, including intracellular inflammation, an increased translocation of gram-negative enterobacteria (leaky gut), autoimmune reactions and damage by O&NS. Considering the fact that these findings are exemplary for ME/CFS patients and that GET may even be harmful, it means that many patients are maltreated by the Belgian CFS Centers. Notwithstanding the above, the government and the CFS Centers not only continue this unethical and immoral policy, but also reinforce their use of CBT/GET in patients with ME/CFS treated at those Centers.

PMID: 19855351 [PubMed - in process]

http://www.ncbi.nlm.nih.gov/pubmed/19855351?ordinalpos=1&itool=EntrezSy…. Pubmed.Pubmed_ResultsPanel.Pubmed_SingleItemSupl.P ubmed_Discovery_RA&linkpos=4&log$=relatedarticles& logdbfrom=pubmed

@ Prometheus - If you break down CBT into its two primary components the connection (and the fact that in the 'B' in CBT is really just GET) becomes clear.

According to Judith Beck, Director of the Beck Institute for Cognitive Therapy (and daughter of the psychologist Aaron Beck, the founder of the Institute as well as the 'father' of Cognitive and Cognitive/Behavioral Therapies themselves):
In Cognitive Therapy: ...patients learn specific skills that they can use for the rest of their lives. These skills involve identifying DISTORTED THINKING, MODIFYING BELIEFS, relating to others in different ways, and changing behaviors.â

The essential components of CBT are:
1) identifying distorted thinking
2) modifying beliefs
3) relating to others in different ways (hmmmmm?)
4) changing behaviors

CBT for CFS assumes - and has no place without - DISTORTED THINKING!

Those distorted thoughts lead to beliefs that MUST BE MODIFIED.

The goal of modifying your distorted beliefs IS CHANGING YOUR BEHAVIOR.

GET as an integral part of CBT is intended to show you that you are not as sick as you think you are (identifying and modifying your distorted thinking).

If your immune system is in overdrive trying to deal with excessive viral loads,etc., GET as a mechanism to overcome the belief that you are actually sick (and feeling sicker because of the added strain of physical exertion) is INSANE.

IT IS NOT THE CFS PATIENT THAT HAS DISTORTED THINKING. Nor is it the CFS patient that needs to relate to others in different ways or to modify their beliefs.

This has been tried on a very large scale and it not only failed, it harmed the CFS patients and the Light and Klimas studies give one hell of a big clue as to why it failed!

See the (see the end of the "Idiocy thread": http://scienceblogs.com/erv/2010/01/xmrv_and_chronic_fatigue_syndr_6.php - posts 40 and on)

Sometimes even the best intentions are dangerous in the hands of the uneducated!

If an illness leads to behaviors that alienate your emotional support system then your thinking is distorted.

The B in CBT is not de riguer gradual exercise therapy.

The Belgians studied only the combined model.

The two approaches to CBT illness support are reversible and irreversible models.

You are talking about reversible and yea that doesn't work.... so competent cognitive therapists don't treat CFS that way.

The Canadians studied both models and the irreversible model without GET works pretty well.

Of course at this point I am prepared to acknowledge anything you say as correct and want to be friends with you because in addition to calling me uneducated and TEH CAPSLOCK you use too many exclamation points not to be credible.

@ Prometheus - SO SORRY!

"I think a jaundiced eye is better directed at someone plucked from obscurity and handed many millions by a political machine boss with a sickly child and his own cement mixer."

Prometheus, may I please bear your children?

@ Prometheus - "If an illness leads to behaviors that alienate your emotional support system then your thinking is distorted."

That's quite a telling assumption.

As long as we're talking about Canadians, this is taken from the Canadian Dx Criteria (2003). In it they refute the use of the term 'CBT' because of exactly the type of imprecision and misuse you are talking about. They instead suggest the term 'Self Help Strategies.' I have no problem with this but cannot see how it differs from simply counseling to deal with the dramatic impact that CFS can have on one's life. Everyone with a chronic illness should have access to this type of support.

SELF-HELP STRATEGIES (SHS)

A hypothesis underlying the use of Cognitive Behaviour Therapy (CBT) for ME/CFS is based on the premise that the patientâs impairments are learned due to wrong thinking and âconsiders the pathophysiology of CFS to be entirely reversible and perpetuated only by the interaction of cognition, behaviour, and emotional processes. The patient merely has to change their thinking and their symptoms will be gone. According to this model, CBT should not only improve the quality of the patientâs life, but could be potentially curativeâ(46). Supporters suggest that âideally general practitioners should diagnose CFS and refer patients to psychotherapists for CBT without detours to medical specialists as in other functional somatic syndromesâ(47). Proponents ignore the documented pathophysiology of ME/CFS, disregard the reality of the patientsâ symptoms, blame them for their illness, and withhold medical reatment. Their studies have often included patients who have chronic fatigue but excluded more severe cases as well as those who have other symptoms that are part of the clinical criteria of ME/CFS. Further, their studies fail to cure or improve physiological impairments such as OI, sore throat, IBS, etc. Dr. A. Komaroff (48), a Harvard based world authority, stated that the evidence of biological process âis inconsistent with the hypothesis that (the syndrome) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to restâ. Some physicians, who are cognizant of the biological pathophysiology of ME/CFS, teach patients coping skills but call them âCBTâ. We urge such doctors to use the term âSelf-Help Strategiesâ and avoid using the terms âCognitive Behaviour Therapyâ and âCognitive Retraining Therapyâ.

46 Sharpe MC, in Demitrak MA, Abbey SE (editors). Chronic Fatigue Syndrome. Guilford Press, NY 1996, pp. 248.
47 Wessley S, Nimnuan C, Sharp M. Functional somatic syndromes: one or many? Lancet 354(9182):936-939, Sept 11,
1999.
48 Komaroff AL. The biology of the Chronic Fatigue Syndrome. Amer J Med 108:99-105, Feb 2000.

@ Prometheus:

"If an illness leads to behaviors that alienate your emotional support system then your thinking is distorted."

That is not true.

It's quite possible, indeed common, for ill and disabled people to be abandoned by their support groups because of the distorted thinking of their friends and family. We've got all sorts of data on the way people respond to injustices, inequality, etc, and it broadly seems to indicate that we're not terribly fair to those who face difficulties in their lives. We like to blame others and hold them accountable for any hardships they may endure. It's not just those disabled with CFS who find themselves isolated and stigmatised, but the greater uncertainty that surrounds CFS does allow people more room to impose their own prejudices and instincts.

I think itâs very easy to medicalise the thought processes of those suffering from a condition like CFS in a way which would not be done for those not already viewed as âweakâ. CFS patients will often develop distorted beliefs about the nature of and potential treatments for CFS. So will doctors, politicians, researchers, friends and family, insurance companies, welfare officers, etc. Because of the broadly powerless nature of most CFS patients, their misplaced beliefs are seen as something to be âtreatedâ or taken as evidence of the psychological nature of their condition, while the distorted beliefs of those with greater power are casually imposed upon them.

CBT has been abused within CFS, with patients being treated, not by properly qualified therapists, but âCFS specialistsâ who have been taught that CFS is entirely the result of distorted thought processes. A lot of the more general criticisms that are made of CBT have been realised in the way itâs been applied to CFS (cookie-cutter therapy by under-trained staff with a disinterest in underlying causes). Anyway, there still seems to be some debate as to what exactly counts as CBT, with the elements I think are most broadly useful (encouraging critical analysis of your own thoughts, decisions and behaviours) being viewed as outside of the CBT framework by some of its originators. Given all this, it's important to be clear by exactly what's meant when you promote CBT for CFS patients.

CFS is such a convoluted shit-hole of a topic that I donât think itâs really suited to brief flippant comments - it requires endless rambling.

SC--
*bored*

1-- You havent answered the questions proposed in this post.

2-- The MoveableType software has built in spam filters. One of these filters prevents people from posting more than X numbers of times in Y minutes. Another of those filters stops comments with +3 links. Sometimes, my own comments get held up for these very reasons. Its annoying, but its worth it not to have to delete ~300 Turkish/Chinese spams one morning (which happened to me at Blogger).

Most people wait patiently for me to notice their comment in the spam box and restore it (I check every morning, lunch if I have time, and after work).

Or you can freak out. Whatevs.

Others
Im planning to update this post with my personal answers tonight :)

ERV-
So sorry your bored.

1 - I haven't responded to the questions because no one has the entire video and I feel the questions were premature. 27 minutes from a 150 minute lecture.

2- As for the limit on posts with over three links, not too far fetched. As for the limit on posts in a given period, could you share how many posts are allowed within a given period. Just looking at the posts, my 6th post on this thread was blocked after prometheus had already posted 7th times and mine were psread out over a longer period of time (two of my posts were 13 hours prior to prometheus' first post). Doesn't seem to make sense on the surface.

Don't worry, I've been bored for months.

The entirety of Judy Mikovits' Jan 22 talk is now posted at:

http://www.prohealth.com/library/showarticle.cfm?libid=15114

@sc - I don't want to get involved with what seems to be a personal discussion, but obsessing over the spam filter is a bit odd. I don't think it's out to get you: computers just feel like that sometimes!

1-- The ERVs that are normally silenced by methylation would be able to express themselves. Hence a ton of ERV proteins would start to show up. So any generic test for retroviral proteins would be a bad idea.

2-- Yes.

3-- It hasn't been put under substantial selective pressure / doesn't mutuate.

A. MLV sequences rely on their reputation as fantastic cooks, and would never show up in England for fear of being associated with boiled everything.

B. Because the PI has a really crappy PCR.

4-- If I've learned anything from the public debate about science, the scienciest response is the one that is yelled the most vehemently in front of the most people.

In 12 months, anything that anyone says here about XMRV and CFS wonât matter one whit. Here is a list of SOME (that's for you prometheus) of the ongoing/upcoming studies:

North America:

⢠The Health and Human Services Working Working Group on XMRV will have oversight over the federal effort on XMRV. With regards to ME/CFS the group is taking a three stage approach:

(1) First they will attempt to standardize and validate tests for XMRV. Then they'll test 1,200 healthy donors and 100 patients provided by the Whittemore Peterson Institute.

(2) Secondly they'll assess the prevalence of XMRV in the general populations, the blood supply and in other groups of people with CFS

(3) Lastly they'll dig into to how XMRV is transmitted, what effects it may have, and how it may affect other groups

⢠The CDC's HIV division study will reportedly assess WPI samples, CDC'S Wichita/Georgia samples and possibly samples from other CFS groups. As of Oct 29th Dr. Miller reported that 100 'CFS' samples had been tested

⢠Dr. Nancy Klimas - ME/CFS patients in her ongoing "Good Day: Bad Day" study - Miami, Florida

⢠Dr. Nancy Klimas - Gulf War Syndrome patients in another ongoing study - Miami, Florida

⢠Cornell University in cooperation with the Columbia University Center for Infection and Immunity and the Whittemore-Peterson Institute are embarking on a study assessing XMRV status in relation to functionality

⢠Dr. Bell will be assessing patients from his pediatric Lyndonville cohort from the early 1980's using Dr. Ruscetti 's laboratory at the National Cancer Institute.

⢠Dr. Illa Singh (author of a 9/09 XMRV and prostate cancer article) and the retroviral lab at the University of Utah at Salt Lake City are developing a test for XMRV.

⢠Dr. Joliceur at L'Institute de recherche attached to the University of Montreal in Montreal, is reportedly doing a 50 patient study.

Europe and the UK:

⢠A UK study involving Dr. Kerr and including samples from Dr. Enlander in the US - uses both Fukuda and Canadian criteria, assessing gene expression in NK cells and XMRV status - Target Date - Summer 2010

⢠Another UK study from the University College London: http://www.findaphd.com/search/showproject.asp?projectid=18971

⢠A Swedish study: http://www.meresearch.org.uk/research/projects/xmrvsweden.html - Target Date - Spring/Summer

⢠Robert Koch Institute in Germany

⢠Institute Ferran Spain - 100 patients with demonstrated abnormalities on repeat exercise tests/100 controls Study begins - January 2010

Other:
⢠Dr. Lloyd in Australia is testing his Dubbo study patients. Target Date - January 2010.

⢠A New Zealand study has been proposed.

@ ERV - re: comment # 56
Posted by: ERV | January 26, 2010 7:18 PM

"I'm planning to update this post with my personal answers tonight :)"

It's been almost 6 days since you said you were going to publish your personal answers. After all of the accusations and bluster, have you decided not to comment after all? If so, was that because you actually watched the rest of the lecture? I was looking forward to hearing your take on this.

Do you still consider your original questions unaddressed/valid? Why or why not?

Sorry!

Weve had an ice storm here in OKC, plus work shit, I havent had time for a serious post-- Ill give my answers their own post now :)