XMRV and chronic fatigue syndrome

XMRV is so hot right now.

Read the paper on XMRV and Chronic Fatigue Syndrome last weekend:

Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome

My conclusions from the paper: XMRV is capable of infecting humans and producing viable progeny.

How this fact relates to CFS, Im still not sure.


Let me go through exactly what these researchers did.

1– Nested PCR looking for XMRV genomes.
Nested PCR is kinda ‘better’ than regular PCR, especially when we are talking about retroviruses. How do you know the signal you are seeing is because of XMRV, and not, say, an endogenous retrovirus that your primers happen to bind to? With nested PCR, you say ‘Hey, some of this signal might be non-specific in our first round of PCR, but with this second round, we know the resulting signal going to be what we are looking for, and its going to be a nice bright band.
My conclusion: There is XMRV DNA in the white blood cells of some patients with CFS. Patients who were positive for gag were also positive for env, except for one ‘Normal’ patient who was pos for gag only.
There was nothing particularly ominous about this data. Not sure I would have done it any differently, except Id probably use real-time PCR instead of just running out gels.

2– Looking for full-length XMRV RNA genomes, phylogeny
The sequences of XMRV isolated from CFS and prostate cancer patients clusters together in a phylogenetic tree. They do not cluster with other, similar viruses in mice.
My conclusion: This tree looks like trees I generate every day looking for relatedness between mother/child samples vs HIV-1 consensus sequences and SIV variants. Nothing ominous about this data either. They didnt contaminate their shit.

3– Flow Cytometry looking for XMRV proteins in white blood cells
Just because cells have XMRV DNA doesnt mean they make any XMRV proteins. Sometimes with xenotropic infections, we are like the cockroach hotel– viruses can check in, but they cant check out.
So they used antibodies to MLV/SFFV (just another control) to see if the white blood cells from CFS patients were making MLV-like proteins. They were. Normal controls didnt.
My conclusions: Pretty damn weak shifts in mean fluorescence intensities, but they were shifts, while the cells from ‘normal’ humans didnt shift. *shrug*

4– Western Blots looking for XMRV proteins in white blood cells
This is just another way of confirming that DNA positive cells were actually making proteins. Blow up some white blood cells, run their guts out in a gel, and look for the proteins with antibodies.
My conclusions: Whoooooeee them be some ugly, over exposed, wrong side of the film Western Blots! Seeing them in ‘Science’ really does make me feel better about my lab hands, and a little annoyed at my perfectionism, but their CFS samples are positive, and ‘normal’ ones arent. *shrug*

5– Which white blood cells are infected?

Okay, I only want one thing from the bags of blood I get from the blood bank– CD4+ T-cells. Use em to play with HIV-1. The trick is purifying the CD4+ T-cells from all the other crap in your blood. Soooooo first thing you do is spin a tube of blood real slow over this sugar/salt solution and you pellet red blood cells, plasma floats, and your white blood cells form this creepy cloud between the other two layers.
This white layer still contains B-cells, CD4+ T-cells, CD8+ T-cells, macrophages, etc, so then you have to use this nifty technique to purify B-cells only, or CD4+ T-cells only, etc.
Once these folks got purified populations of cells from CFS/’normal’ patients, they looked for XMRV proteins via flow. Both B and T-cells were positive in CFS patients.
My conclusions: Once again, weak shifts in fluorescence, but they were shifts. However, now I am having some ‘issues’. MLV is a simple retrovirus, whether its in mice or humans. It requires actively dividing cells to infect. Thus it is not infecting mature T-cells (like HIV-1 does), it must be infecting these cells at a very early stage in their development, ie, how MLV infects mice– bone marrow. Thats why we use it for hematopoietic stem cell gene transfer.
Yet humans dont get cancer from all of this XMLV insertional mutagenesis in CFS patients, even though the kids in our tightly controlled defective moloney murine leukemia virus gene therapy study got leukemia. What?? *FROWNY FACE*

6– Western Blots to assess whether the detected XMRV proteins actually make infectious virus
Co-culture of white blood cells from CFS patients and a susceptible cell line lead to infection of the cell line (cell-cell transmission that retroviruses sometimes prefer).
Supernatant from cultured white blood cells from CFS patients could infect the susceptible cell line (cell-free virus).
Images of the susceptible cell line showed budding viruses.
My conclusions: This is not the normal way of showing your viruses are infectious. The normal way is an assay that measures increases in reverse transcriptase activity over time. I wouldnt have done this experiment this way.

7– Detection of XMRV antibodies in patients
Instead of using patient white blood cells and known antibodies to do flow, they flipped it around and used a cell line they knew expressed XMRV, and used antibodies from patients. If the cells didnt light up, the patients dont have antibodies to XMRV. Some of the CFS patients had XMRV antibodies.
My conclusion: Nice study design. These folks arent amateurs.

Overall conclusions–
The science of this paper is fine. Their experiments are fine. And, there is clearly a bias for the presence of XMLV in CFS patients.

BUT, this story doesnt make sense.

Not all the CFS patients have XMLV. I assure you that all AIDS patients have HIV-1.

XMLV in nature gives you CFS. ‘XMLV’ infection in gene therapy trials gives you leukemia.

You know, this paper, while fine, highlights for me One Of The Things Wrong With Research. Instead of doing some basic goddamn virology, cell biology, and biochemistry, we jump up with “OMFG CFS IS CAUSED BY A RETROVIRUS OMFG SCIENCE XPRESS! XPREEEEEEEEEESSSSS!!

Its the same damn shit hole we have ourselves in with HIV-1. “VACCINES! VAAAAAAAACIIIIINES!… oh wait, maybe we should have done some basic virology before we started throwing shit in vaccines we now know wont work after we did some basic virology.” Oh, but determining receptors and cell tropism of viruses, even though knowing that information is fantastic for determining future directions/future questions/future studies, isnt gonna get you a ‘SCIENCE XPREEEEEEEEEEEESS!’ paper. Its not sexy. Basic population dynamics of a virus? Not sexy, even though it is essential information for logically designing a vaccine.

The most valuable piece of info I got from this paper and the marketing of this paper, is how much I am really, really, really starting to hate ‘Science Xpress’.

Its a slut.

Comments

  1. #1 ellindsey
    October 16, 2009

    My wife has CFS, and all week we’ve been getting excited calls from friends saying “Did you hear they found the virus that causes CFS? And a cure is coming soon?”. And all week we’ve been having to patiently explain that no, what one not-yet-replicated study found was a retrovirus detected more often in CFS sufferers than the rest of the population, and that causation is far from established. And even if causation was established, we’d still be nowhere near a cure. Sigh.

  2. #2 K
    October 16, 2009

    “Yet humans dont get cancer from all of this XMLV insertional mutagenesis in CFS patients”

    I’m confused by this, as I thought one of the reasons that this line of research started was because Dr Peterson was finding that 5% of his CFS patients got Mantle Cell Lymphoma?

    “Not all the CFS patients have XMLV.”

    I read that later research said that 95% of them had antibodies compared to 4% of controls.

  3. #3 ERV
    October 16, 2009

    The words ‘lymphoma’ and ‘leukemia’ are not used in this paper in reference to patients or reasoning behind this study.

    ‘Cancer’ is used once, as in ‘CFS have an elevated risk of cancer’, which could mean anything. Their reference for this claim is from 1992, and its not particularly persuasive.

    And, only 50% of these CFS patients had XMLV antibodies, lower than the number who made XMRV proteins– another thing that doesnt make sense.

  4. #4 K
    October 16, 2009

    “And, only 50% of these CFS patients had XMLV antibodies, lower than the number who made XMRV proteins– another thing that doesnt make sense.”

    OK, thanks for reply, I haven’t heard anything about XMLV in relation to this research, only XMRV, so I’m going to see if I can find out what this is. (I’m not a scientist of any sort, just a CFS patient.)

  5. #5 Brian
    October 16, 2009

    “Science Xpress, you ignorant slut.”

  6. #6 Sili
    October 16, 2009

    The patients not expressing the retrovirus can possibly be explained by malingerers. Or people for whom CFS is genuinely psychosomatic.

    It comes across as having been something of a catch-all diagnosis (like cancer, once), so it shouldn’t surprising if the patient samples aren’t ‘pure’.

    So good to hear that there may be a ‘simple’ physiological explanation for some of the cases. If true, I do hope a cure is found.

    But the post on Sciencebased Medicine made me more … hesitant to be generous to the patient body than I were beforehand. It seems that some of them are less than … openminded.

  7. #7 James F
    October 16, 2009

    It’s that damn XMRV! He’s so hot right now!

  8. #8 titmouse
    October 17, 2009

    My conclusions: This is not the normal way of showing your viruses are infectious. The normal way is an assay that measures increases in reverse transcriptase activity over time. I wouldnt have done this experiment this way.

    These little details illustrate an important point: smart outsiders really aren’t in a position to critique the methods section of most papers. And to further illustrate my point: the best neuroimaging study EVAR!

    A taste:

    Subject. One mature Atlantic Salmon (Salmo salar) participated in the fMRI study. The salmon was approximately 18 inches long, weighed 3.8 lbs, and was not alive at the time of scanning.

    Task. The task administered to the salmon involved completing an open-ended mentalizing task. The salmon was shown a series of photographs depicting human individuals in social situations with a specified emotional valence. The salmon was asked to determine what emotion the individual in the photo must have been experiencing.

  9. #9 K
    October 17, 2009

    Sili – I don’t know which post you are referring to, but the story of Sophia Mirza’s death is still fresh for many CFS sufferers, so it’s not surprising some of us react strongly against suggestions that the illness is largely psychological.

    As for “The patients not expressing the retrovirus can possibly be explained by malingerers.”

    I am a CFS patient and I will certainly get this test done whenever it is available, but I won’t be surprised if I score negative, one of the doctors in this study refers to “non-classic cases of CFS, such as people that have had fatigue all their lives. He believes they suffer from an organic mitochondrial disease, whereas post-infectious fatigue patients have “acquired mitochodrial disease,” which is secondary to immune dysfunction.”

    I have had fatigue all my life, and have tested positive for mitochondrial dysfunction. If I next test negative for XMRV, I don’t think that would define me as a malingerer or a psychosomatic case.

  10. #10 titmouse
    October 17, 2009

    K, malingerers don’t read ERV hoping to understand their experiences, so no worries there. And “psychosomatic” may mean that unconscious factors cause the symptoms, or it may mean that there is some other cause we haven’t yet uncovered.

    Unfortunately we don’t have a wastebasket term meaning “we don’t know” that doesn’t involve the psyche somehow, as ruling out unconscious processes is nearly always impossible.

    It’s hard enough feeling sick. Feeling one must always fight against a presumption that one is making things up can only make the suffering worse. I think the best way to handle that burden is your way: to trust that science will eventually sort the problem.

  11. #11 Kelly
    October 17, 2009

    ERV: Are you talking about two different retroviruses here, or is your spell-checker on the fritz?

    XMRV…or XMLV…which is it?

  12. #12 Myrtie
    October 17, 2009

    Hi ERV,

    You wrote, “BUT, this story doesnt make sense…Not all the CFS patients have XMLV. I assure you that all AIDS patients have HIV-1.”

    All gay men don’t have AIDS, don’t have HIV-1.

    Why are you requiring that all people with CFS have XMRV? Some will have XMRV and some won’t. The problem is not with the science. It’s with the sloppy, arbitrary, psychogenic, ever-changing definition of CFS.

    People who are XMRV-positive will need a new name for their disease–a disease that, I can assure you, is worse than AIDS. The name I like is ITVS (It’s The Virus, Stupid.)

    Anyway, thank you for your analysis. We non-scientists are hungry for information.

    Mrytie

  13. #13 Sili
    October 17, 2009

    Thanks, titmouse. That’s indeed what I meant. That we have a problem with the diagnosis still being catch-all.

    This is the post I referred to.

    I was gonna use ‘chronic lyme disease’ elsewhere as an example of why we can’t ‘just accept’ some patients claims that there are indeed germs/vira/intestinal flukes/alien implants making them sick. But apparently CLD is lumped in with CFS according to Wallace Sampson:

    chronic fatigue, fibromyalgia, da Costa syndrome/effort syndrome, neurasthenia (and even “pseudo-neurasthenia,”) myalgic encephalitis (M.E. – UK) chronic Lyme disease, multiple chemical sensitivities, Icelandic (Akureyrie) disease, subclinical hypothyroidism, hypometabolism, hypoglycemia, candidiasis, chronic mononucleosis/ Epstein-Barr disease.

    What made me annoyed was this bit:

    A signal finding of CFS people is a solidified lack of insight, and resistance to introspection and to pursuing psychotherapy or psychological investigation. Psychotropic drugs are generally unable to produce relief or a sense of help. This characteristic has made a diagnosis of underlying depression uncertain, and psychological approaches unsuccessful. But the lack of insight and the surface hostility to medical approaches cause a standoff between the affected and the medical system. Affected people drift easily into aberrant sectarian systems and methods, often claiming dramatic, though temporary results from them. Although most psychological approaches meet with resistance, some success is reported with cognitive behavioral therapy, perceived as non-threatening.

    I’m sorry, but if you’re not even gonna let us see if you might be depressed or otherwise psychologically affected, why should we bother listening to your complaints? We can hardly be expected to believe you’ve broken an arm without taking an X-ray either, can we?

    So, yeah, that made me hostile. But as I said, I’m more than willing to accept that there is indeed an underlying non-psychological cause for some of the cases, if the evidence is presented. And I’ll be happy if these results pan out as being real.

    I realise that part of the problem is continued public disdain of psychological illnesses, making it hard for some people to accept those as ‘real’. “It’s all in your head.” As discussed elsewhere (i.e. I don’t recall where) it seems to have some grounding in people still being mind-body dualists.

    Personally, I’ve been very lucky and have received nothing but understanding and support during my depression. Or perhaps Danish society has just become more open to the issues.

  14. #14 John
    October 17, 2009

    That post on Sciencebased Medicine was complete trash- the reason why people with CFS have problems with behavorial approaches is because they’re not suffering from a psychological disturbance and that fact has been shown time and time again- it’s the ‘psychosocial lobby’ that refuses to alter their ‘belief system’, because if they did they would face the utter destruction of their life’s work.

    Plus their theory doesn’t make any sense at all- ‘people with CFS don’t want to get better…’ if people with CFS didn’t want to get better then why would they spend tens of thousands of dollars trying to find treatment? Because they want to get better, but only through ‘biomedical’ means? Pssh. Psychobabble.

    Plus, the ‘psychosocial’ model is so riddled with holes it doesn’t stand even a chance. The methodologies used, the lack of rigour in the studies, the whole thing rests on a few well funded individuals flooding a sleepy research literature with complete and utter pulp.

    For instance, there are probably close to two dozen, if not more, papers showing physiological abnormalities in response to exercise by CFS patients, yet this information is completely disregarded by psychosocial ‘researchers’ who claim CFS patients suffer from ‘exercise phobia’. I use quotation marks around researchers because I truly believe they do not deserve the label.

    When they do their ‘research’, such as on CBT, they omit reporting dropouts of the ‘therapy’, with dropouts being widely recognised as a proxy measure of harm, not one study has used objective measures of outcome such as actometer data- one study in particular, the Prins ’01 Lancet study, actually took actometer data and when the data was analysed and showed absolutely no difference in activity levels of patients and controls post-treatment, the authors simply did not report the data, which only came to light several years later in a Netherlands government report. It’s just a complete farce.

    As for lymphoma, Dr. Peterson is following a cohort of patients with mantle cell lymphoma and his Institute is doing research on whether ‘cancer clusters’ exist in CFS populations, the whole story of why some get it and some don’t is up in the air. It doesn’t help that the NIH spent $5 million on CFS research in ’08, $4 million in ’09 and projected $3 million in ’10. As a researcher surely you realize how paltry these sums are for a disease which affects around 1 million people in the US alone, in fact the seed money for the Institute, which isn’t even built yet, was donated by the parents of a CFS patient.

    Presentation on Peterson’s B-cell lymphoma cohort-
    http://www.scivee.tv/node/7030

    Whittemore Peterson Institute research program-
    http://wpinstitute.org/research/research_basic.html

  15. #15 Eric Johnson
    October 18, 2009

    Sili,
    CFS patients are neurotic and frustrated on average, but that can be explained or modeled in more ways than one. Just check out the psychological morbidity found in systemic lupus patients – who can be frankly psychotic, not merely neurotic. Your implicit premise – that CFS patients, if authentic, ought to be able to impress you with their evenhandedness and high mindedness – doesn’t really make the best of sense. Google and you will find that tuberculosis patients were also noted for their lousy personalities, lack of generosity, and stunted personal appeal. I myself hardly claim to be an exception, in fact I am definitely quite an acrid little cabbage riddled with every kind of sourness and resentment.

    I can assure you that the shrill patient who leveled a very charmless blast of rhetoric at you on “In the pipeline” should not be considered terribly atypical for CFS patients, online at least – I’ve never met another patient in person. I too experienced comparable sentiments 15,000 times and did not always refrain from venting them – though I hope I never did so in the direction of anyone of your level of open-mindedness. But after most of a decade the bulk of that has burned out. Leaving me, perhaps, dispassionate enough to make the disease seem a bit more plausible to you, since you seem to be looking for that sort of shibboleth.

  16. #16 John Pombrio
    October 18, 2009

    Agree, ERV. New York Time’s headlines do not a diagnosis make. What is exciting is that the internet and headlines is a quick way to get the word out. If the science is at least feasible and a confirmation is not too hard or costly, what is the harm?
    I long ago gave up on any cure for my Fibro (24 years and counting) and the chances for a treatment/cure seem to me slim. What I would like to have is a definitive test that tells doctors that it is a real disease. I am so tired of the psychobabble bullshit about “my condition”. One year I am riding double centuries on my bicycle. The next year (and for the rest of my life) I can only ride 5-6 miles before the overall pain is too much. I also have not been able to run more than a block in over 20 years. I can HIKE for hours (did 2 1/2 hours today) but it takes me 3-4 days to recover. Does this sound like a “psychosomatic disorder” to you? I am a hard skeptic and it took me 8 years to finally admit to myself that I fibro and only after 3 doctors all agreed.
    One of the most appalling things about this whole study is that I have given 6 gallons of blood since I have had Fibro. Christ on a crutch, I hope to hell that it is NOT infectious. Imagining giving the “gift of life and chronic pain” to people already compromised by injury or disease.

  17. #17 PKL
    October 19, 2009

    “I’m a graduate student studying the molecular and biochemical evolution of HIV within patients and within populations. I also study epigenetic control of ERVs”

    Poor conclusions(assumptions), poor presentation. For a graduate student, I would have expected much better.

  18. #18 Rrr
    October 19, 2009

    @ 17: “Poor conclusions(assumptions), poor presentation. For a graduate student, I would have expected much better.”

    Im sorry, how do you mean? Could you explain a bit more specifically please? Afraid you lost me already there, PKL. (BTW, is that any relation at all to PKU? kthxbai)

  19. #19 Eric Johnson
    October 19, 2009

    ERV, you stated that you find the 50% seropositivity creepy. You want more like 100%. Understandable. But you don’t mention that the serology was done using SFFV Erv as a target. I’m not learned in virology, so maybe I’m missing something, but why would we expect almost every epitope on XMRV Erv to be cross-reactive with some epitope on SFFV Erv? MuLV is similar to but not highly identical to XMRV, so I doubt SFFV is any closer. Therefore, I wonder whether we might not expect this assay to have a sensitivity under 100%. In other words, patients who looked seronegative in the assay might be bearing anti-XMRV antibodies that don’t bind SFFV. …?

    Am I mistaken? Again, I’m not a viro man. Is there some body of work that should lead us to expect excellent cross-reactivity between SFFV and XMRV?

    Yea, ’twere sweeter yet to clone XMRV and do serology with that. And you have criticized the paper in general for not being more complete. Let me tell you, I like it how it is. It certainly has enough support for the whole notion to make it worthwhile for several labs to see if they can replicate the work, as even you seem to agree. And that, more or less, is the proper threshold for publishing a smoking new finding like this that does open /possible/ doors to therapy, which many many labs will want to work on provided it can first be replicated by others. That process is now in motion. Whatever else Mikovits might have done does not matter hugely; more salient is whether or not other people will replicate the basics of this succesfully.

  20. #20 ERIC BLACK
    October 19, 2009

    does anyone know if and when drugs will be available to CFS sufferers that are currently being used on XMRV for AIDS patients

  21. #21 Rick
    October 19, 2009

    You might have a graduate degree, but only if you walk in the shoes of a person with CFS will you ever know the HELL it is. I have had vertigo 24/7 for the past 4 1/2 years along with NON-STOP muscle pains, numbness, headaches, blurry vision, double vision, tinnitus, low blood pressure, nausea, vomiting, and more. I, too, am a college graduate, 2001. I was an athlete for the past decade before I suddenly got sick one day in April 2005. I despise the people who dont believe this is a real illness and think Im just “being lazy”. Thanks for kicking us when where down. Im sure God has nice spot picked out for you in hell…

  22. #22 Priscilla
    October 22, 2009

    You do seem to conflate XMLV and XMRV. Could you clarify, please?

  23. #23 Sili
    October 22, 2009

    For fuck’s sake! Noöne’s saying you aren’t suffering.

    We accept that the symptoms are very real for most sufferers. Hence syndrome.

    But as far as I as a laymen can tell, the jury’s still out one whether there’s an ‘external’ cause for your predicament.

    Far as I can tell, you’re the first one to use the word “lazy” here at all.

    And by the way, threats of Hell really don’t carry much weight in these parts. You might conceivably upset Wee Willy or Rho, but I doubt it.

    Chill, as the kids may or may not say.

    Now, someone please tell me why the fuck I’m suddenly whiteknighting?

  24. #24 Prometheus
    October 22, 2009

    “Now, someone please tell me why the fuck I’m suddenly whiteknighting?”

    Blame Chemtrail induced Morgellons and self diagnosed Asbergers.

    I noticed Field & Stream was trying to expand the market for Lyrica (Is Ralph Lauren running the marketing campaign for goof balls now?)by telling outdoorsy types it was for “phantom nerve pain”. COOL. They should call it “Harry Houdini Disease”.

    I wait with rapt anticipation for the viral factor causing old, snide and flabby. Vindicate me science. Vindicate me like jackhammer… all night long!

  25. #25 Eric Johnson
    October 22, 2009

    Prometheus,
    What’s clear is that your family must have felt thoroughly vindicated when it produced a scion like yourself, so far from the average in every way. Many persons, unless they were just out trolling which obviously could never be the intention of such as yourself, would get lost in technical minutiae or even cite a dull scholarly publication when making controversial claims in learned company – lest it seem like they might be spouting total bullshit for all anyone can tell. You stand above this sort of drudgery in every way, a unique and creative spirit beyond old traditions and constraints, in tune with the genius of your intuition. You hear the beat of a different drummer, which a select few can understand, and my hat’s off to you.

  26. #26 Prometheus
    October 22, 2009

    “You hear the beat of a different drummer, which a select few can understand, and my hat’s off to you.”

    I am warmed not only by your praise but the kiss of Helios as his roseate beams glance from your doffed example of the apex of a haberdasher’s aspirations executed in tinfoil of redoubtable gauge.

    Huzzah

    *fart noise*

  27. #27 Eric Johnson
    October 22, 2009

    You may be pretty far my elder, dudeheimer, but my editorial assistant is just the younger side of 23, a long-limbed, hyperflexible velveteen brunette with a light accent from her native Amiens-Besançon – basically Audrey Tautou with a cuter nose and plumper, almost imperceptibly downy cheeks. Anyway, reading your eloquent statement, she blushed when I noticed her ardent eyes, and she was about to rush over to your place in the most passionate hurry – until your last unintentional vulgarity made her turn up her nose, a problem you have no doubt experienced many times. All would have still gone very well for you had you not absent-mindedly transcribed that ungainly sound into your post, which was not very alert of you. While I understand you have been focused for several years on the possible role of cellphone radiation in promoting your colonic overgrowth of methanogenic archaea and hydrogen-producing propionisaccharoprechloroaspergillicocci, I would emphasize that persistent flatulence needs to be understood within a complex biopsychosocial context and broader functional-relational process. For example, do you even have any friends? I can help you heal, Brother – if you are open to being helped.

  28. #28 Prometheus
    October 23, 2009

    While the arabesque of your prolix has similarly inspired the romantic inclinations of my own secretary, her perambulations to the wellspring of your eloquence shall be less frenetic, she having recently injured her hip during the seventy second anniversary of her nascence. Alas.

    To request a respite from this rollicking repast in rhetoric wherein words are made not merely mince but chiffonade….

    Just being a dick is funnier and easier than making a point but I should have put out the effort.

    I apologize.

    The more enthusiastic people are over rudimentary studies looking for the causative factors the more they affirm some weird scale of legitimacy of symptom sets

    It should only matter whether an illness is viral, genetic, environmental, chemical, event related etc. for purposes of answering those symptoms effectively, not what weight or regard in which symptoms are held.

    Laboring under a symptom set with indeterminate cause and engaging in behavior that encourages the idea of preferential causation is nasty because every person with a condition that is the result of a ‘lesser’ cause is demeaned to the point they may not seek treatment.

    Encouraging research emphasis based on the bigot scale of cultural aesthetics is yucky dangerous and compromises the very thing we all want, data which instructs an effective treatment/prevention protocol.

    Since we all love anecdotal evidence:

    I have had three guys in this year with viable businesses in death spirals. That means I will see two more by Christmas. A kid with a psych associates degree and decoder ring could tell they are clinically depressed and need treatment. I’m just an evil old lawyer and despite more tricks in my bag than Felix the Cat I can’t do a thing to save a key man/woman and their employees when their day is spent curled up in a ball under the conference table with the phone off the hook.

    They aren’t going to get help because in addition to being awash in tears, scotch, cocaine etc. they are awash in the moronic proposition that a psych disorder isn’t “real”.

    The other end is the bride’s grandmother giving up on high blood pressure medications in favor of herbal fibromyalgia treatments and every G.P. in town handing gomers red and white Pfizer bombs while the pharma rep (picking up green fees and bar tabs) swears they aren’t just barbiturates in a new box.

    Beats having to tell a patient that it hurts to get old.

    But it messes up my life when they show up high as a kite and want to leave their house to Zbigniew Brzezinski because he has “nice hair”.

    Like I said, sorry to be a dick but you hit my phantom nerve.

  29. #29 Eric Johnson
    October 25, 2009

    I have no idea if Morgellon’s is real or no, having not really looked into it. (And, not having it.) I did look at one paper real fast, where the lesions were compared with self-inflicted ones from supposedly well-ascertained past cases of delusional mental conditions, involving beliefs of skin infestation I guess. The Morgellons lesions definitely appeared essentially identical to my untrained eye – but I didn’t see that as totally closing the case.

    I’m just sooo skeptical about this because of my background – because I know almost for certain that the CDC pronounced nonsense (psychobabble) about the Incline CFS epidemic. I /know/ they can screw up.

    I suspect that the psychogenesis people could pretty easily latch on falsely, not because of any maliciousness but just because most people are a little biased in their own favor and in favor of their own discipline.

    Science really frustrates me sometimes when it acts so wussy. I can’t understand why they don’t just put some Morgellon’s volunteer (I’m sure you could get 50) in a hotel room for three weeks and video them all the time with 30 webcams. Yep, including when they go to the bathroom. If their sores are self-inflicted, shouldn’t they heal in three weeks – or else the patient be caught on camera exacerbating them? Or can they simply not bear to not touch them – not even to prove their own non-deludedness – and yet still insist that their ministrations are not prolonging the lesions? In that case, just dope them up on benzos for the duration, for heavens sake. I can’t believe after years of controversy we still can’t settle whether a certain skin syndrome is self-inflicted.

    To simplify it, you could just strap some sheet metal over one of their legs while they’re under camera supervision. That way you can let them sleep under sheets and not have to watch them quite so minutely.

    How about it, science?

    I definitely agree that depression is serious, and by no means do I think it necessarily is always psychogenic. Chronicity correlates somewhat with severity, according to what I read on wikipedia. I would think severe and chronic cases would probably be where the physiogenic cases would be, if anywhere. I think people who don’t think it’s “real” suffering should just take a look at the suicide stats for major depression. There’s not much “secondary gain” to be had, economic or social, in shooting yourself – nor have many ever relished doing it.

  30. #30 Eric Johnson
    October 25, 2009

    Better yet, for my Morgellons experiment we should pick the three surliest, nuttiest, angriest patients as subjects, and the three sneeringist, closed-mindedest, most egotistical anti-Morgellons MDs to watch them. That way they can scream at each other the entire three weeks. Have Phil Donahue and Ricki Lake co-host and sell it as a reality TV freak show – no grant money will even be needed.

  31. #31 kg
    October 25, 2009

    ANYONE INTERESTED IN SCIENCE?
    I’ve posted this on two other blogs here but no-one seems interested in the actual science rather than politics or ya-boo! histrionics. If anyone can help on this I’d be grateful….

    “..the MLV coat protein can disrupt red blood cells in mice, leading to low blood oxygen levels..”
    http://www.bioedonline.org/news/news.cfm?art=5704
    I’ve been looking for the paper containing the above data and it’s driving me nuts. Any virologists out there know the reference?

  32. #32 daedalus2u
    October 25, 2009

    I have looked into Morgellons too, and to me it looks exactly like low nitric oxide with the skin as the major organ of involvement. I have a blog post about it.

    http://daedalus2u.blogspot.com/2008/02/morgellons-disease-hallucinatory.html

    kg, I think the description of the MLV protein disrupting red blood cells and causing low blood oxygen levels is misleading. I think it causes anemia and the anemia causes low hemoglobin levels.

    Blood oxygen can be measured in a couple of different ways, mL O2/mL blood, or partial pressure of O2. These two measurements are independent. Anemia reduces the first one, but it is the second one that is actually important for O2 delivery to tissues and minor anemia has no effect on the second one (physiology can easily compensate for it at rest).

  33. #33 Eric Johnson
    October 25, 2009

    The experiment I proposed for Morgellon’s is not a joke at all. The part about making it into a Jerry Springer television melee is a joke; the experiment itself is completely serious.

  34. #34 kg
    October 25, 2009

    daedalus2u : Many thanks for the info.

  35. #35 Mya
    October 27, 2009

    Does anyone know how similar MLV and XMRV are? Are the differences at the nucleotide level only? Are these differences across the entire genome or are they clustered around specific ORFs?

    I’m presenting this paper for all the students in my faculty… I thought it was interesting because CFS is something I’ve been coming across more frequently of late. I enjoy the commentary- I do more gene expression stuff but I would adore a bit of a review of the Flow Cytometry stuff…. Why didn’t they label any of the axes? I’m not well versed in this technique, so I had difficulty teasing apart information. Why would you select phytohemmaglutinin and IL-2 to activate PBMCs?

    Also, I realize XMRV is pretty new? So does that mean there aren’t any commercially Abs available? I guess they used the ones that were most closely related but that doesn’t seem to cut it….

    One last thing, why might you detect only gag and not env via PCR? If viable viruses are present, wouldn’t you expect to detect all of them?

  36. #36 cooler
    October 27, 2009

    Wow, this beats Gallo’s isolating HIV in 26/72 patients! It must be the cause! The whole field of retrovirology is junk science, these viruses barely infect enough cells, are harmless when injected into animals, have latent periods that get extended into the decades when no one gets sick……..these retroviruses are just the product of Gallo, Levy and Essex’s deranged imaginations. Anyone that spends their career studying these microbes is a nutcase.

  37. #37 W. Kevin Vicklund
    October 27, 2009

    Wow, this beats Gallo’s isolating HIV in 26/72 patients!

    Of course, cooler fails to mention that 88% of those 72 patients tested HIV+. Or that the samples for the AIDS patients were in poor condition for the test he ended up using. And under the current definition of AIDS, Gallo actually isolated HIV in 47/95 patients, and that in the 127 clinically normal patients, only one patient had HIV isolated – and he developed AIDS by the time the study was published.

    But most importantly, cooler fails to mention that follow-up studies, using better techniques and sample collection procedures, established a much higher, nearly 1:1 positive correlation.

  38. #38 cooler
    October 27, 2009

    They were antibody positive ie antibodies and no abundant virus, i guess I’m gonna die of measles in 10 years cause I’m measles antibody positive! What about FIV, oh god there not getting AZT either, max essex and FIV, there are cats dying everywhere oh lawdy! Max essex got the vaccine for FIV!

    Anyways there was a whole congressional investigation into Gallo’ papers that uncovered some crazy things, like how Gallo pooled the blood of ten patients together cause he couldn’t isolate the virus from a single patient. And as far as this 100% correlation that confirmed Gallo’s hypothesis, its just an artifact of the definition. If you have cervical cancer with HIV you have AIDS, w/o HIV its just called cervical cancer………even 100% correlations don’t prove much anyways, or else yellow fingers would cause lung cancer. There is not much of a correlation between HIV and illness cause most HIV antibody positives are totally healthy, thats why they had to extend the latent period from 10 months to 10 years! Whats ironic is that the entire hypothesis rests mostly on correlation!

    Anyways I have a cat, IM so SCARDEZ he’s gonna get FIV! oh LAWDY! When will they approve AZT for cats! Everytime I leave the house I see cats that died of FIV EVERYWHERE! Thank the lord Max essex Patented a vaccine, how many deadly retroviruses popped up at the same time, FIV htlv-1, htlv-2, HIV, by the same d list scientists that had no evidence? OH god im so SCARED! And now we have the XDRV CFS virus to deal with as well! Retrovirology= junk science.

  39. #39 W. Kevin Vicklund
    October 28, 2009

    One of my closest friend’s cat recently died of FIV, asshole.

    Anyways there was a whole congressional investigation into Gallo’ papers that uncovered some crazy things, like how Gallo pooled the blood of ten patients together cause he couldn’t isolate the virus from a single patient.

    Rewrite history much? The investigation found that Gallo’s claim that he developed a blood test by pooling patients blood couldn’t have been true, that he must have used the sample of LAV he got from the French group to develop his blood test. Pooling was not used for isolating the virus.

    And as far as this 100% correlation that confirmed Gallo’s hypothesis, its just an artifact of the definition.

    Again, rewriting history. The 2009 definition was not the same definition used to diagnose AIDS during the confirmation tests. The confirmation tests used the same definition as used by Gallo and previous researchers, which did not rely on HIV status. Only after the strong correlation (and many factors in addition to the correlation) was established did the definition change.

    There is not much of a correlation between HIV and illness cause most HIV antibody positives are totally healthy, thats why they had to extend the latent period from 10 months to 10 years!

    Why do you insist on rewriting history? The latency period was predicted to extend into the decade range before HIV was discovered. In fact, that’s why many researchers were wary of Gallo’s classification of the virus he discovered as HTLV – that type of virus doesn’t have a long enough latency period. Some viruses were known to have long latencies – including a class known as lentiviruses (lenti- means slow).

    BTW, ever heard of shingles?

  40. #40 cooler
    October 28, 2009

    haha! 3 sworn statements from Dr.Francoise Barre-Sinoussi say the blood was pooled! LIAR! see what all else the congress found out about this clown Dr. Gallo. HAHAHAHA, did your poor friends cat get Kaposis Sarcoma, bc there is a huge epidemic of Kaposis Sarcoma in cats due to FIV! How do you know your FIV cat died of FIV? Your dumb anecdote means nothing.

    As far as the latent period it was 10 months in 1984, Read Duesberg’s papers and book, he’s got all referenced from CDC sources.

    Looks like Gallo did pool the blood together!

    “Several important pieces of evidence point to the probability that if the “pool” experiment actually was done (versus LAI/MOV merely being renamed “IIIb”), LAI was deliberately used as part of that experiment. According to three sworn affidavits of Dr. Francoise Barre-Sinoussi, the IP scientist widely regarded as the true discoverer of the AIDS virus, in 1992, Dr. Popovic acknowledged that he mixed LAV (LAI) with other LTCB samples, as part of his “pool” experiment. According to Dr. Barre-Sinoussi, Dr. Popovic told her he did this to obtain a high-titre cell line, not knowing the IP virus alone would grow out of the pool. Use of the IP virus in this manner would not have been proscribed by the IP/LTCB transfer agreement. What was specifically proscribed, however, was commercialization of the virus, which is precisely what Gallo/Popovic did when they patented and licensed the LTCB blood test made with LAI/LAV.

    This is what the Office of research integrity found out about how shady Gallo et al are. LOL.

    ‘Research process can proceed with confidence only if scientists can assume that the previously reported facts on which their work is based are correct. If the bricks are in fact false…then the scientific wall of truth may crumble…Such actions threaten the very integrity of the scientific process.’

    § ‘In light of the groundbreaking nature of this research and its profound public health implications, ORI believes that the careless and unacceptable keeping of research records…reflects irresponsible laboratory management that has permanently impaired the ability to retrace the important steps taken. ‘

    § [This] ‘put the public health at risk and, at the minimum, severely undermined the ability of the scientific community to reproduce and/or verify the efforts of the LTCB [Gallo's 'Laboratory for Tumor Cell Biology'] in isolating and growing the AIDS virus.’

    § ‘Gallo’s failings as a Lab Chief are evidenced in the Popovic Science paper, a paper conspicuously lacking in significant primary data and fraught with false and erroneous statements.’ (This is the paper on which the HIV Test patent was based.)

    § Gallo ‘repeatedly misrepresents distorts and suppresses data in such a way as to enhance his own claim to priority and primacy in AIDS research.’

    § ‘The [lead] Science paper contains numerous falsifications… the paper was replete with at least 22 incorrect statements concerning LTCB research, at least 11 of which were falsifications amounting to serious deviations from accepted standards for conducting and reporting evidence.’

    § ‘The absence of virtually any assay data for the parent cell line is simply unbelievable. [Especially since this was] used to develop and patent the HIV antibody blood test.’

    § Gallo, ‘in violation of all research protocols, impeded scientists wanting to follow up on his research … imposed on others the condition that they did not try to repeat his work.’

    But despite the ORI supporting this with the testimony of over 100 scientists, the Panel (made up by lawyers, not scientists) decided that Popovic and Gallo were innocent since the ‘intent to deceive’ was not proved. (Dr Mikulos Popovic was Gallo’s chief investigative scientist and had co-signed all the science papers.)

    ‘The cover-up … advanced to a more active phase in mid-March 1984, when Dr. Gallo systematically rewrote the manuscript for what would become a renowned LTCB paper (Popovic et al.; Science).’

    § ‘The evidence is compelling that the oft-repeated [HIV] isolate claim – … dating from 1982/early 1983, are not true and were known to be untrue at the time the claims were made.’

    § ‘Many of the samples allegedly used for the pool [culture] were noted in the LTCB records to be contaminated with mould.’

    § ‘The notion that Dr. Popovic used such samples in an effort to obtain a high-titre virus-producing cell line defies credulity.’

    § ‘The [early] February 1984 experiment [said to prove HIV caused AIDS] was so faulty and so many aspects of it so questionable, that little or no confidence can be placed in any of its claimed findings.’

    § ‘Contrary to the claims of Gallo and Popovic, including claims in their patent applications [for the HIV Blood Test], several of the putative pool samples contained no HIV, while others did not even come from AIDS or pre-AIDS patients.’

  41. #41 W. Kevin Vicklund
    October 29, 2009

    haha! 3 sworn statements from Dr.Francoise Barre-Sinoussi say the blood was pooled! LIAR! see what all else the congress found out about this clown Dr. Gallo.

    Looks like Gallo did pool the blood together!

    Did you graduate from the Orly Taitz School for Investigative Journalism*, cooler? The claim that the blood was pooled came from Gallo himself. First time he made the claim – his April 1984 patent application for the blood test. May 1st 1984, paper he coauthored was submitted, and published in the August 1984 edition of Science. Another paper in 1985 also made this claim. All of this originated from Gallo himself.

    What the investigation found was that, assuming he pooled the blood as he claimed, the LAV sample must have been included – and there was no evidence that he ever pooled the blood.

    The pooling, if it happened (which the investigation threw into doubt!), was done in the process of creating the blood test. It has absolutely no bearing on whether he could isolate the virus from individual patients. The apparent fact that Gallo is a money-grubbing backstabber who didn’t give credit to others contributions has no bearing on whether HIV is the causative agent of AIDS.

    As far as the latent period it was 10 months in 1984, Read Duesberg’s papers and book, he’s got all referenced from CDC sources.

    That 10 months latency that Duesberg refers to was the estimated actual latency measured in a small group of patients with AIDS. It was not a prediction of the expected latency in general. In 1984, the prediction -taken from CDC researchers- for latency ranged from under a year to 14 years, with a median prediction of 6 years. There is an enormous difference between predicted latency and measured latency.

    *Orly Taitz made the SHOCKING discovery that Obama’s mother married a man from Indonesia! She even has the marriage certificate!!!!111eleventy-one

  42. #42 cooler
    October 29, 2009

    So the latency was between a few months to 14 years ie they had no idea. Which is not surprising since they had no evidence that HIV was even lethal, but that didn’t stop then from approving AZT in 1987. So smarty pants, the current window period is 10-12 years, what experiments prove this, describe them. You said the window period in the early days had a median of 6 years, what experiments prove this, describe them. Hell can you describe the experiments that prove HIV is lethal without spamming a website?

  43. #43 Yvonne
    October 31, 2009

    You may be interested in this -http://www.youtube.com/user/luminescentfeeling#p/u/6/9XedHYWEAVo – John Coffin ACS Research Professor Genetics, Molecular Biology presentation to the CFS Advisory Committee on 29 Oct. This is the first part of his presentation, however, you can access the rest of his presentation through the same avenue.
    You may also be interested in this job opportunity: http://www.findaphd.com/search/showproject.asp?projectid=18971

  44. #44 W. Kevin Vicklund
    November 5, 2009

    Sorry for taking so long to respond, cooler. I was busy over the weekend and was looking at the wrong thread when I came back.

    So the latency was between a few months to 14 years ie they had no idea.

    Not necessarily true. It was not clear whether the range was of predictions of individual researchers or for individual patients. But so what? Why should we have expected them to have a clue in 1984? The research was only three years old at that point, at least half of the research published that year was done before Gallo published, and the syndrome had only existed in the US for perhaps 6 years at that point. Did you know that the study that Duesberg got his 10 month number from was published the same month as Gallo’s paper – they didn’t even know about HTLV-III when they submitted!

    Which is not surprising since they had no evidence that HIV was even lethal, but that didn’t stop then from approving AZT in 1987.

    Why should it? AZT was approved in 1987 for AIDS patients, not HIV patients. The measured mortality in 1983 for AIDS was nearly 40% – which certainly qualifies as lethal, and the mortality rose from there. Having HIV was necessary for an AIDS diagnosis in 1987, but not sufficient – you also had to have an opportunistic infection. Whether HIV itself was lethal is immaterial to whether HIV plus OI is lethal – this was quite evidently lethal. And the 6 month mortality was cut in half by AZT.

    It wasn’t until a few years later that they did a study on whether AZT should be given to HIV patients. And the study concluded it shouldn’t. This is commonly known as the Concorde trial.

    So smarty pants, the current window period is 10-12 years, what experiments prove this, describe them.

    In fact, the current median latency (not window period – that is something different) is 10-12 years, and has been solidly so for the last 15 years. If Duesberg were to be believed, that number should have continued to rise for the last 15 years instead of leveling off. But it hasn’t.

    The reason why is because the experiments (called longitudinal studies) used to demonstrate the median latency will give results that increase monotonically until the median latency period has elapsed, at which point they level off. It’s quite simple, really.

    Take a group of people at risk for AIDS but without HIV, and a group at low risk. Track the groups for HIV and OI status for many years. After 1 year, if less than 50% of HIV patients get an OI, than we conclude that the median latency is at least 1 year. After 2 years,if less than 50% of HIV patients get an OI, than we conclude that the median latency is at least 2 years. After 3 years, if less than 50% of HIV patients get an OI, than we conclude that the median latency is at least 3 years. But what happens if someone doesn’t get HIV until the third year? Well, they get treated as if they were in the first year. Eventually, you’ll find that 50% of the HIV patients have OIs. The time it took to reach that point is the median latency. This number can of course be predicted ahead of time, but can’t be experimentally demonstrated with out the passage of time. The low risk group and the members of the high risk group that don’t get HIV serve to verify that it isn’t something other than HIV causing the OIs. If only those who get HIV come down with OIs, and the high risk group is significantly more likely to get HIV than the low risk group, then it is proper to link HIV to AIDS.

    Hundreds of these longitudinal studies have been run (though not all used the exact same methods I described – that was just a general description), and the results are fairly uniform, adjusting for some cofactors we’ve discovered.

    You said the window period in the early days had a median of 6 years, what experiments prove this, describe them.

    No, I said that the median prediction was 6 years. No experiment is necessary to prove this, because it is a prediction, not a measurement. Your question is nonsensical.

    Hell can you describe the experiments that prove HIV is lethal without spamming a website?

    “Falling doesn’t kill ya, it’s the sudden stop at the end.”

    Just using the numbers here, at least 20% of people diagnosed with HIV will die from an opportunistic infection in 11-13 years if not given treatment for HIV. That qualifies as lethal in my mind. But if that’s not enough, do a longitudinal study, this time using death as a stopping point. Surveys say: HIV->AIDS

  45. #45 Not Ignorant
    November 6, 2009

    You need to call the Whittemore Peterson Institute because XMRV was detected in over 95 percent of the patients’ blood samples in this study group.

    source: http://www.wpinstitute.org/xmrv/xmrv_qa.html

    “What is XMRV” ?

    If I remember right, the 67% of patients in the study group had the retrovirus in their blood, whereas the rest had the virus in their plasma.

    I have CFS and my pulse ox is only 80. So figure that one out.

    Judge not lest be judged !

  46. #46 sue
    January 13, 2010

    lol this guy thinks he’s House

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