Shorter “Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome“:

170 more CFS samples from two different cohorts.

395 more healthy controls.

No Simon Wesseley.

No XMRV by regular PCR, boosted PCR, or qRT-PCR on DNA or cDNA.

No meaningful anti-XMRV antibodies.

Still no XMRV in the Europe.

Longer “Absence of xenotropic murine leukaemia virus-related virus in UK patients with chronic fatigue syndrome“:

Basic PCR–
They extracted genomic DNA from white blood cells with a Qiagen kit. This is about stock-standard as it comes. They then used the exact primers the Reno group used to look for gag, env, and GAPDH. No amplified DNA from CFS patients or controls.

‘Boosted’ PCR–
Just in case they didnt have enough genomic DNA for some reason (I dunno why, they are just being super careful), they used another Qiagen kit to boost their overall signal. Just in case. Still no XMRV.

Quantitative Real-Time PCR
THANK YOU. Finally. They looked for XMRV proviruses and XMRV RNA. Nothing. Very pretty standards were positive down to 16 copies– Viral plasmid diluted in healthy genomic DNA. Very pretty standards *nod*.

Neutralization assays–

Just because they cant find XMRV in anyone doesnt mean it was never there. People will have antibodies to XMRV if they were exposed– thats the whole point of vaccinations. So they looked for antibodies that could neutralize XMRV (mix patient antibodies with viruses, can the viruses still infect target cells? If not, youve got antibodies!).

They did find people with a neutralizing antibody response to XMRV.

In 25 healthy controls.

And one CFS patient.

*blink*

And the ‘reactive’ patient sera? It works on other viruses too. Its not XMRV specific (the patient sera neutralizes other viruses, even nonretroviruses like VSV), so there is no reason to believe they were created by an XMRV infection.

So, still no XMRV in Europe.

Thanks to Bora for the tip, and thanks to Virology Blog for finding this first!

Comments

  1. #1 Jason
    February 16, 2010

    I’m glad that you, as a student of virology, have been sated and a much strong study-update is available. It’s interesting that not only did the repeat the same standards of JM with the same PCR primers, but went the extra mile there.

    Still, let the flaming begin.

    Also – have you read the paper about bornavirus and EBLNs in mammals? I’m curious for your take.

  2. #2 Optimus Primate
    February 16, 2010

    I think the implications are obvious: XMRV causes health!

  3. #3 Mark Elliott
    February 16, 2010

    So they still can’t find XMRV – big deal.
    WPI continues to find it so this proves nothing.

    Mark Elliott

  4. #4 gayle
    February 16, 2010

    Probably just as well that Wessely, who has spent his entire career unable to objectively prove that CFS is not an organic brain disease (ICD-10 G93.3), wasn’t involved.

    This is a psychiatric liaison who claims “…it is clear that the drive to find a somatic biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists.”

    Yeah right. It’s all about you. It couldn’t possibly be about good science.

  5. #5 gf1
    February 16, 2010

    Not only ‘no Wesseley’, but Kerr is the anti-Wesseley. He’s done a lot of the work disproving Wessely’s claim that CFS patients were depressed but unable to admit it to themselves.

    Kerr is also involved in a joint CFS study with Mikovits, so I don’t think that even the most ardent of WPI supporters could claim this was not a genuine attempt to find XMRV.

  6. #6 ERV
    February 16, 2010

    Jason– Im not really ‘sated’, it just is what it is. Also, endogenous non-retroviruses! :)

    Optimus– I dunno. XMRV exposure gives me headaches…

    Mark– What a strange statement. Of course this matters. From blood/organ donations to worldwide epidemiology.

    gayle– I dont give a rats ass about Wesselys personality.

    Wessely/psychiatrists/virologists/cardiologists/entomologists scientific publications arent ‘wrong’ because they have a grating personality or contrasting views on their research topic. Science is a self-correcting endeavor, moving in little wrong/little right steps at a time. Scientists are always wrong. We are always disagreeing with each other.

    Accusing scientists of scientific fraud for no reason other than they are jerks or have an opposing view, however, is wrong.

    Quote-mining is also wrong.

    The drive to find somatic explanations for psychiatric disorders remains as strong as ever for two reasons. First, because many people, including me, believe that they will eventually bear fruit. Few modern psychiatrists doubt that the causes of schizophrenia, for example, lie within the brain, nor that bipolar disorder is essentially genetic. And even if we do not embrace with quite such enthusiasm solely somatic explanations for disorders such as depression or the anxiety disorders, nor do we discount the role of genetics in determining predisposition, or biology influencing treatment response. Of course we know from sad experience that claims of the latest breakthrough tend to lead to disappointment, but perhaps no more so in psychiatry than in other areas of medicine. Overall many of us expect that just as neurology was transformed by new developments in neurophysiology at the end of the 19th century, neuroscience will transform psychiatry during the coming decades.

    But there is also a second and more disturbing explanation for the alacrity and uncritical nature with which somatic explanations are endorsed on often the flimsiest of evidence. Psychiatry, its patients and its practitioners, continue to be stigmatised like no other branch of medicine. In 2008 I spoke at a meeting on chronic fatigue syndrome organized by the Royal Society of Medicine (RSM). There was a concentrated effort by some campaigners to have my invitation and that of my two psychiatric colleagues rescinded. Others wrote to the President of the RSM asking why psychiatrists could be permitted to attend a meeting at a society with the name ‘medicine’ in its title, and seemed perplexed to learn that psychiatrists were actually permitted not just to attend, but to be members of the organization. If one reads the angry responses to any article that mentions chronic fatigue syndrome and psychiatry in the same breath, it is clear that the drive to find a somatic biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists. That it is psychiatry that to date has made the most progress in treating chronic fatigue syndrome is at best an irrelevance, and at worst just a further insult. Henry Cotton achieved his brief moment of fame by his rejection of anything other than a narrow somatic basic for psychiatric illness. He was intolerant of any other approach to the subject, and his views on psychoanalysis were close to unprintable.

    I find that statement reasonable, given the context. Frankly, I find the whole article reasonable, and if thats representative of Wesselys ‘bad personality’, some people are nuttier than I previously supposed.

    gf1– Thanks for the insiders info, as always!

  7. #7 Bob
    February 16, 2010

    Really good run down of this, and the original Science paper. I think all the people testing positive for XMRV should be less worried about CFS, and more worried about prostate cancer, because the smart money (ie the good papers, well researched) says that CFS is a red herring. I’d be far less surprised to here that XMRV is oncogenic (a la HTLV, koala gammaretrovirus, the mouse leukaemia virus it’s named for…).

  8. #8 Grease
    February 16, 2010

    Now poor Jonathan Kerr will be getting mean behavior and threats from the “ME” thugs as a fine reward for his efforts. He even put his name on Mikovits’ R01 application with no less then two questionable claims in the first paragraph (CFS is associated with lymphoma and CFS causes short lifespan, both bogus as blue buttercups) I guess he didn’t get the memo about toeing the line or else.

  9. #9 John
    February 16, 2010

    Nah, Wessely is a total piece of shit(I’m aware this is a total digression and has nothing to do with the current study, which is one of the beautiful things about the internet!). The problem is, unless you’re familiar with his tactics, ie couching what he really means behind ‘weasel words’, making leaps of logic that don’t connect, etc. then he can appear to be fairly benign. The problem is when you break down what he’s saying you have to do it sentence by sentence and it makes you look like a total psychopath. I think only when he’s not able to produce any more loquacious sleights of hand will a full accounting of his chicanery be made.

    A few examples-
    “There was a concentrated effort by some campaigners to have my invitation and that of my two psychiatric colleagues rescinded. Others wrote to the President of the RSM asking why psychiatrists could be permitted to attend a meeting at a society with the name ‘medicine’ in its title…”

    -The complaints had nothing to do with ‘not allowing psychiatrists to attend the meeting’, they had to do with the speakers at the meeting(again, a meeting of the RSM) being composed solely of psychologists and psychiatrists who believe CFS to be a behavorial disorder. Prominant biomedical proponants of CFS were completely excluded. Also I think Wessely and White, two of the speakers, were also on the meeting’s planning committee. “Well let’s see, who should we invite to speak? I know, I’ll invite you and you invite me! Brilliant!”

    “If one reads the angry responses to any article that mentions chronic fatigue syndrome and psychiatry in the same breath, it is clear that the drive to find a somatic biomarker for chronic fatigue syndrome is driven not so much by a dispassionate thirst for knowledge but more by an overwhelming desire to get rid of the psychiatrists.”

    -Again, this is total bullshit. The issue at hand is whether or not CFS is an organic disease process in need of biomedical treatment or a behavorial disorder to be treated with psychotherapy. Merely ‘mentioning CFS and psychiatry in the same breath’ has nothing to do with it.

    “But there is also a second and more disturbing explanation for the alacrity and uncritical nature with which somatic explanations are endorsed on often the flimsiest of evidence…That it is psychiatry that to date has made the most progress in treating chronic fatigue syndrome is at best an irrelevance, and at worst just a further insult.”

    - This one takes balls. First he brings up ‘flimsy evidence’ then follows up by stating that ‘psychiatry has made the most progress in treating CFS’.

    Psychiatric treatments such as Cognitive Behavior Therapy and Graded Exercise Therapy have indeed been reported to be beneficial for CFS. However the studies have been full of shit. The methodological flaws run the gamut of lax inclusion criteria, comparing CBT to ‘supportive listening’ and then declaring CBT to be ‘effective’ or ‘helpful’(who gives a fuck how a ‘treatment’ compares to supportive listening?), not including study drop out rates of up to 40% in the published results, failure to use objective outcome measures such as actometer data, and here’s the big kahoona- actually taking actometer data and when that data shows no increase in activity whatsoever between patients and controls you just simply omit reporting that data. One CBT study that reported improvement actually had the exact same amount of ‘improvement’ in a group of controls that were ON A FUCKING WAITING LIST for CBT. And this motherfucker has the gall to talk about ‘flimsy evidence’?

    The point is that Prof. Wessely will take exceedingly valid and pertinant criticisms and reframe them as being totally conspiracy theory wack jobs- absolutely no intellectual honesty whatsoever. This is not a once off thing, this is a pattern of behavior that is a large part of why people think he is a total piece of shit. Reading Wessely’s writings is almost like doing a crossword puzzle; picking out where he’s bullshitting could be a fucking drinking game if CFS patients didn’t have alcohol intolerance.

    Again, I know the above is totally off topic, but that’s part of the fun of the interwebz.

    Also, Leonard Jason did a study which found that people with CFS die of the same causes as others, ie heart disease, cancer, suicide, etc. except that people with CFS died on average 25 years earlier than the healthy population, so that’s where shortened life span comes in. Besides, if a CFS patient did die of something else they would then automatically be excluded from a diagnosis of CFS, see how neat making up the rules can be?

  10. #10 Prometheus
    February 16, 2010

    John@#9,

    Ummm crapola.

    Apparently Satan is an eloquent balding bicycling enthusiast and you have to use a brush so big to color him evil that you double coat all of psychiatry, cognitive behavioral therapy and psychology with bile.

    But by all means, wall-o-text and toss in a few personal anecdotes (love those).

    Let’s party.

    Meanwhile the CFS forums are on fire with the quest for $1,100 dollar a month AZT prescriptions.

    I suppose the next political initiative will be to include severe anemia from Mexican zidovudine as part of the symptom pantheon.

    Odds are Mikovits already has Harry Reid bugging the CDC about it.

  11. #11 Ben Rabb
    February 16, 2010

    I’ve been laughing my ass off for weeks on this issue. Mikovits is a bean-counting, quack. There’s not nearly enough evidence that XMRV causes Chronic Fatigue Syndrome. She wants it to cause illness, to generate a buncha tests, a new antivirals. Smith, I retract every bad thing I’ve ever said about you. You’ve done a fine job, debunking junk science and false hope.

  12. #12 ZenMonkey
    February 16, 2010

    As someone disabled by CFS, I have to say THANK YOU for your position on XMRV. Reading patient comments about how they can’t wait to get tested, and seeing the CFIDS Association enabling this behavior, is driving me crazy!

    I wrote a post about this which includes my yucky feelings about the WPI being associated with a lab that produces XMRV tests (for $300-$400 not covered by insurance, of course).

    Seriously, thank you. There is not nearly enough coverage of this in the skeptical community and I would love to see more.

    http://newly-nerfed.net/2010/02/08/xmrv-testing-and-questionable-ethics/

  13. #13 Prometheus
    February 16, 2010

    Whoopsie….missed this gem.

    “Also, Leonard Jason did a study which found that people with CFS die of the same causes as others, ie heart disease, cancer, suicide, etc. except that people with CFS died on average 25 years earlier than the healthy population, so that’s where shortened life span comes in.”

    How is cranking up life insurance premiums ‘helpful’?

    Nice little NIH grant mine he has there…..for a psychologist! *laser hate beams*

    Seriously how the hell do you come up with a sufficient long term and size sample demographic for a symptom set that has only been categorized definitively for a decade and is still being debated? Who the hell was his actuarial, The Amazing Kreskin? Maybe they held a series of diagnostic interviews with the dearly departed.

    Where did he publish this time the Journal of Alternative and Complementary Medicine….again?

    Unless all 14 of the ‘volunteers’ at the DePaul ME/CFS Research Team are being issued Clip/ Ouija boards, this makes no sense at all.

    If you were referring to a study by Leonard “The Fun Bus” Jason, I retract all criticism, because he is, of course, the bomb……

    http://www.amazon.co.uk/Jason-Leonard-Full-Time/dp/images/0007193920

  14. #14 Petra
    February 16, 2010

    Prometheus wrote: Meanwhile the CFS forums are on fire with the quest for $1,100 dollar a month AZT prescriptions.

    FYI everybody, this is just not true. There may be a few desperate folks doing this, but it’s far from the norm.

    @ZenMonkey, if you’re sick with CFS, you might want to look back over ERV’s other posts on the topic before you thank her for her stance. Just sayin’.

  15. #15 LM
    February 16, 2010

    Off the topic of XMRV or ME. Wessely says that Chronic fatigue (I know, he gets confused) is caused by abberant beliefs that make you ill. Please, where is the study that supports that belief? how would they ever measure it? Yep, it doesn’t exist. It’s just a belief.

  16. #16 Dizzy
    February 16, 2010

    Prometheus wrote: Meanwhile the CFS forums are on fire with the quest for $1,100 dollar a month AZT prescriptions.

    Well, I haven’t seen any of this, and I TRAWL the sites daily as a writer and researcher. I think you might be telling a porky for a bit of sensationalism.

    Prometheus wrote: Seriously how the hell do you come up with a sufficient long term and size sample demographic for a symptom set that has only been categorized definitively for a decade

    Are you serious? I mean, you come across as if you have some intellect. DO SOME RESEARCH BEFORE YOU SHOOT YOUR MOUTH OFF! M.E has been classifed since 1969 as a NEUROLOGICAL condition by the World Health Organisation – something our Government seems to ignore – and has been seen as a discrete disease since the 1930′s. CFS on the other hand was first named in the 1980′s after the epidemics in Nevada. These epidemics were almost certainly M.E. but the powers that be decided to rename it. With the emphasis being put on ‘fatigue’. Anyone suffering with neurological M.E. will say that fatigue is just one of many symptoms (as is often the case for many serious illnesses such as cancer, diabetes, MS) and is often not even the most prominent. Once they defined the illness by ‘fatigue’ then pandora’s box was well and truly opened. Insurance providers refused payment because ‘fatigue’ is such a subjective symptom and can mean many things to many people. And let’s face it; everyone gets tired. DWP in the UK used the term to justify refusing incapacity benefit and disability living allowance, homecare for those bedbound, mobility help etc. to ME/CFS sufferers. Incidentally, most of the main psychiatric players are involved in the UNUMProvident, Allied Dunbar and as consultants for the DWP. UNUMProvident has also beeen advising the DWP since the early 1990′s on ways they can reduce the number of payouts to M.E/CFS sufferers. One of the pychiatrists, Simon Wessely was involved in the second XMRV study. His whole career rests on the fact that ME sufferers have abnormal illness beliefs and only believe they were infected after a viral illness. If a virus is found his career is over not to mention his credability.

    Nowadays, CFS includes those with depression, irritable bowel, fibromyalgia and other undiagnosed fatiguing states. The problem is once you mention that you have some tiredness, especially if are a middle-aged woman (probably hormonal or neurotic??) and the first battery of tests come back normal, you are then you will automaticaally be given the diagnosis of CFS. In the UK, from this point onwards you receive no further tests. So, for those suffering with depression, they will get treatment that is likely to help. Those suffering with other illness will not. There will be no simple tilt table test given that would confirm a you are suffering with POTS (another common part of the illness) or brain imaging, which would show the small pinprick marks as proof of brain damage. In fact there are many different tests that can be used to define neurological M.E. but of course these are not performed. The doctor is actually ADVISED by NICE to discontinue testing. Can you imagine the enormity of this? Thousands of misdiagnosed people thrown under the umbrella of CFS. Only able to get psychological interventions, which do absolutely nothing to help, at best, and a worsening of conditions at worst.

    The next problem is that the Fekuda definition excludes certain symptoms, neurological signs, post-exertional malaise (a key symptom)but will accept depression. So, you can see that the samples used in the second study will not contain the same patient samples as those found at the WPI because they used the Canadian Guidelines which includes people with neurological M.E.

    That’s the main reason we are having problems. No one in the UK actually used the same definition that WPI used. So anyone with severe M.E., with neurological conditions etc. will be excluded It’s like apples and pears. You cut open an apple; you won’t find a pear. They both have different definitions.

    The politics surrounding this terrible illness goes back years. With Astounding levels of corruption involved. This is why feelings run deep. Unfortunately it is the patients who feel the backlash. They still have to stand their corner and educate the public, even when desperately ill, because many doctors, scientists and journalists still don’t know the facts. Many lazy journalists get their regurgitated science information from the New Labour’s Science Media Centre (which to add more fuel to the fire, Simon Wessely is on the committee for – I’ll let you think a bit about that one). Those ignorant of the facts seem to enjoy denigrating sufferers, who have already dealt with many years of abuse from the medical community, the media, society and even family.

    Here’s a bit of background information; I can send links if you are interested in anything. Now, don’t let me catch you being ignorant again, ya here?

    Fact: M.E. is classified by the World Health Organisation (WHO) as a NEUROLOGICAL disease and has been since 1969.

    Fact: Seen as a distinct illness since the 1930’s.

    Fact: There have been over 70 documented epidemics of the illness since 1934, like the incidents at the Royal Free Hospital in London in 1955 and Incline Village, Lake Tahoe, Nevada in 1984 See http://fm-cfs.ca/ME_epidemic.html for full details.

    Fact: Estimated to be 250,000 sufferers in UK, 4 million in the U.S. and 17 million worldwide.

    Fact: No substantiated evidence exists as to the psychiatric nature.

    Fact: A possible organic cause has been identified.

    Fact: Biological testing exists but unavailable to most patients.

    Fact: In the UK once you are ‘identified’ as a sufferer, medical testing is DISCONTINUED. No further testing is offered on the NHS. In fact doctors are specifically requested not to test further. Guidelines are given NOT to administer the simple tilt table test which would show that the heart and circulatory system of the sufferer is impaired.

    Fact: Some sufferers are so severely ill that they are housebound, bedbound, wheelchair dependent and/or tube-fed.

    Fact: The majority of severely ill patients are not regularly seen by a doctor and survive only because of the care of family members and friends. These are the ‘invisible’ ones and are unlikely to be used in any psychiatric or medical ‘studies’. Therefore the myth of the illness being one of ‘abnormal illness beliefs’ is perpetuated because only those mildly affected or with few or no physical signs are seen.

    Fact: The British psychiatric lobby have hijacked funding and are actively trying to change the world classification to that of a PSYCHIATRIC illness.

    Fact: Treatment consists of ‘talking therapies’ and graded exercise despite the fact that aerobic activity can lead to further biological damage. This is the only recognised treatment in the UK.

    Fact: There are secret MRC files on M.E. held at the UK Government National Archives at Kew. These files contain records and correspondence dating back to at least 1988 (which is the period when M.E was given psychiatric status in the UK, despite the fact that it was and is classified by the WORLD HEALTH ORGANISATION (WHO) as a NEUROLOGICAL disesase and has been seen as a distinct illness since the 1930′s). Initally closed until 2023, this period has now been extended to 2071. The normal closure period is 30 years.

    Fact: Adults are often sectioned because they refuse psychiatric treatment

    Fact: Children have been removed from their homes by child protective services. Parents or sufferers are further labelled as having Munchausen Syndrome by Proxy.

    Fact: Sufferers have a 3 in 4 chance of going on to develop cancer in particular lymphoma.

    Fact: There are many documented deaths associated with the illness.

    Fact: Sufferers in the UK are medically neglected.

    Fact: Research is underfunded and MRC continually reject quality medical research in favour of psychiatric studies.

    Fiction: This is not a real disease.

    All we are asking for is appropriate testing and treatment. Nothing more, nothing less.

  17. #17 ZenMonkey
    February 16, 2010

    @Petra: I thanked ERV for her stance on XMRV. I don’t need to read her other posts to know that I agree with her on this point.

    And I have absolutely seen comments by CFS patients considering expensive and unnecessary XMRV tests as well as AZT treatment. I agree it probably isn’t the norm, but it’s happening, and it’s not just an isolated case here and there.

  18. #18 John
    February 16, 2010

    Prometheus, my entire post was about Wessely’s habit of taking very specific arguments and mischaracterizing them by inappropriately connecting/rebranding them as some unstated larger and grander argument which is a)generally ridiculous, as well as b)then falling apart under further scrutiny.

    You repeat his actions precisely by taking my very specific examples of the kinds of misrepresentations Wessely has a habit of making and then incorrectly characterizing them as somehow ‘using a brush so big to color him evil that [I] double coat all of psychiatry, cognitive behavioral therapy and psychology with bile’.

    Nice try but to try and rebut someone by engaging in the very action they just got through criticizing isn’t exactly bringing the heat, if you know what I mean.

  19. #19 qetzal
    February 16, 2010

    Just as an aside, did anyone else notice that WPI just hired a brand new spokesperson? I guess Mikovits won’t be giving any more statements to the press, so that’s at least one good decision on their part.

  20. #20 qetzal
    February 16, 2010

    Dizzy wrote:

    The next problem is that the Fekuda definition excludes certain symptoms, neurological signs, post-exertional malaise (a key symptom)but will accept depression. So, you can see that the samples used in the second study will not contain the same patient samples as those found at the WPI because they used the Canadian Guidelines which includes people with neurological M.E.

    Incorrect. The WPI study used patients who met the Fukuda Criteria and the Canadian Consensus Criteria (link). However, it is true that the two UK studies used only the Fukuda Criteria.

    Here’s a bit of background information; I can send links if you are interested in anything. Now, don’t let me catch you being ignorant again, ya here?

    Fact: Sufferers have a 3 in 4 chance of going on to develop cancer in particular lymphoma.

    I’d love to see the link to support this claim! Also, if you have a link for the study that supposedly shows a 25yr decrease in life expectancy, I’d love to see that one too.

    TIA.

  21. #21 ERV
    February 16, 2010

    Everyone, I dont give a rats ass about anyones personality in science. Anyone. Including Wesseley. What youre doing is stock standard ad hominem. Take it somewhere else.

    ZenMonkey– *whispers* Petra thinks you havent read the post that you clearly linked to in your post, which you clearly linked to here. Following links is for l0s3rs! hehehe!

    qetzal– WPI hasnt said anything. Maybe they learned from their epic FAIL first go round… but probably not… *sigh*

  22. #22 ERV
    February 16, 2010

    qetzal and Dizzy– You two email me on my contact page, if youd like to exchange emails. I will happily arrange that.

  23. #23 NP
    February 17, 2010

    @ moaners:

    What are the chances that a CFS patient meets the Fukuda criteria, but not the Canadian consensus criteria?

  24. #24 LM
    February 17, 2010

    Well if you look at the definitions, Canadian criteria patients will most likely meet fukuda, but fukuda will not necessarily meet Canadian. It’s like having a disease, and saying fukuda is a fever, well not everyone with a fever will also have spots. They are not the same. They all talk about subgrouping, but psychiatrists, like wessely do not toward this, and block others from doing the same.

    As for studies that show death rates, look up Jason. The CDC used that information in their publicity campaign for CFS a few years ago. Even if you ignore that, people are still officially recorded as having died fr ME/CFS. And before anyone says, lying in bed, not always, there is mix. Deaths happen to those still working.

  25. #25 LM
    February 17, 2010

    I should add that when going from the fukuda, to the Oxford (used in the UK) the numbers jump 4 fold. Canadian to fukuda may be more than 4 fold. Some one may know of data on this.

  26. #26 John
    February 17, 2010

    @23-

    I’m not sure any prevalence studies have been done using the Canadian Criteria, but as the poster above notes, the prevalence going from Fukuda to Oxford rises substantially, even more than 4x. Previous prevalence studies using the Fukuda criteria in the US have found .24% and .42% of the population to have CFS. Studies in the UK using the Oxford criteria have found a 2.6% prevalence rate, which is an increase of between 6x and 10x, with psychiatric co-morbidity absent in only .5% of these patients. Notice the similarity between the Fukuda defined .42% and the Oxford .5% lacking psychiatric co-morbidity? It’s kind of like calling tuberculosis ‘Chronic Caughing Syndrome’, and including anyone who works in a dusty environment, has allergies, etc. as a ‘Chronic Caugher’.
    http://www.iacfsme.org/IssueswithCDCEmpiricalCaseDefinitionandPrev/tabid/105/Default.aspx

    This doesn’t even get into the subject of whether properly defined CFS is a homo or heterogenous disorder in and of itself, aka CFS type I, II, III, etc. similar to diabetes type I and II.

    For instance a lot of people with CFS have a sudden, acute onset to symptoms following an apparently viral illness, while other have a more gradual onset. Some have sore throat and lymphadenopathy while others don’t. Some have neurological sequelea, some don’t. It’s a pretty big mess. One thing that is really interesting is that a sizable number of survivors of the SARS outbreak in Asia are coming down with a ‘Post-viral fatigue syndrome’(PVFS) which is indistinguishable from CFS. Gene expression studies done in the UK have also shown that gene expression of ‘idiopathic’ CFS patients had similar patterns of gene expression as individuals who came down with CFS following infection with a documented Q-fever outbreak in the UK.
    http://jcp.bmj.com/content/early/2009/11/26/jcp.2009.072561.full.pdf+html

    I think the main difference between the Canadian and Fukuda definitions is the Canadian Criteria makes post-exertional malaise, ie a significant worsening of symptoms following even trivial exertion, mandatory vs. having it be optional as the Fukuda criteria does, as well as necessitating neurocognitive dysfunction, both of which are hallmark symptoms of CFS.

    With the ‘fatigue plus 4 of 8 additional symptoms’ criteria(Fukuda), it’s possible for a psychiatric(or biomedical) researcher who thinks CFS is just an anxiety disorder to say patients are ‘Fukuda defined’, but I don’t think the criteria used are at the bottom of this particular study; there’s just too much other stuff going on. Plus Kerr, Chaudhuri, Behan and Gow are all firmly on the side of CFS being an organic disease.

    In other studies though, which basically comprise the past 20 years of CFS research, the definition used is thought to make an absolutely huge diffence, although the dust-up is mainly between the Fukuda and Oxford criteria; with the Canadian criteria being a relative newcomer.

  27. #27 Prometheus
    February 17, 2010

    Dizzy@#16

    That’s a lota facts.

    I wouldn’t know they were facts but then (thank goodness) you labeled each one as “Fact:”

    I could not, alas, keep track of the facts because the facts were not preceded by roman numerals.

    Let’s put someone on that, shall we?

    Petra @#14
    “FYI everybody, this is just not true.”

    FYI Petra….suck it:

    ********
    ME/CFS Community.com

    CFS: Anyone on antivirals?

    * Posted by sue pattersnon on February 26, 2009 at 1:51am in Medical Treatments & Issues

    ************

    They started self medicating with valtrex a year ago and moved to the hard stuff when the WPI came out. Don’t you get memos from your own hugboxes?

    John@#18

    I’m sorry I didn’t bring the heat. I brought egg salad. I thought Frank was bringing the heat. We really need to coordinate these company picnics more efficiently.

    “You repeat his actions precisely by taking my very specific examples of the kinds of misrepresentations Wessely has a habit of making and then…”

    It’s legalistic representation. It demonstrates the capacity to defend a position in a multitude of settings. Never agree to work for an administrator who can’t do this. They don’t get funding and their departments die.

    Being convincing, however is not the same as cherry picking or lying so quit pretending he is Machiavelli because you are butthurt over his opinion, prominence and his talent for adversarial discourse.

    On this topic, a note to the new guests and adherents of the latest internet religion:

    these are “Fact:” so….

    I. Fact: This is neither ancient Sparta nor a Frank Kapra movie so you don’t ‘win’ by using caps lock or having the longest monologue.

    II. Fact: Anecdote has not been an acceptable form of explanation for natural phenomena for around 2600 years.

    A). That you really really really mean it and it makes you super duper sad does not matter. Not in the slightest.

    III. Fact: If you critique your opponent on the basis of style you had better be sure that your proponents are not tap dancing in vestments of a similar cut right behind you.

  28. #28 Petra
    February 17, 2010

    @ERV: Um, wrong. Aware of said link. And apparently ZenMonkey does in fact want to cosign on your views. You win!

    @Prometheus: One thread? Dated Feb ’09? That’s your evidence for the CFS forums being “on fire” with the quest for AZT? Well, I stand corrected then.

    So long and best of luck to both of you. You’re lovely, lovely people.

  29. #29 John
    February 17, 2010

    @Easterbunny-

    “ME/CFS Community.com
    CFS: Anyone on antivirals?
    * Posted by sue pattersnon on February 26, 2009 at 1:51am in Medical Treatments & Issues”

    How many positive responses did that poster get? And you characterize that as CFS forums being “on fire”? No wonder you characterize ignoring evidence which disagrees with one’s suppositions as well as misrepresenting valid criticisms of one’s stance as ‘being convincing’. Of course anyone can ‘be convincing’ if they do the above, most people just have a little thing called integrity which prevents them from doing so.

  30. #30 Prometheus
    February 17, 2010

    Petra@#28

    “Well, I stand corrected then.”

    Since it was started a year ago, is still ongoing and pops first in a search, yea you do stand corrected.

    Leave snide to me. You’re drowning.

    John@#29

    “misrepresenting valid criticisms of one’s stance as ‘being convincing’. Of course anyone can ‘be convincing’ if they do the above, most people just have a little thing called integrity which prevents them from doing so.”

    No. Most people can’t be convincing. You aren’t.

    Most people are incompetent at making a compelling or even an interesting argument.

    You should have a marble statue in the park with the words “can’t make a compelling argument” carved on your keester.”

    We can call it “John’s Integrity”.

    Outsmarting someone is not a “trick”.

  31. #31 LM
    February 17, 2010

    Has no one noticed that you cannot define a disease through a belief, which Wessley does? That’s not science.

  32. #32 Petra
    February 17, 2010

    Prometheus #30:
    “Since it was started a year ago, is still ongoing and pops first in a search, yea you do stand corrected. Leave snide to me. You’re drowning.”

    The “on fire” thread in question:
    CFS: Anyone on antivirals? – ME-CFSCommunity.com
    13 posts – 6 authors – Last post: Nov 25, 2009

    Okey-dokey, amigo mio. I’ll leave snide to you, and you can leave factual to me.

  33. #33 Second Study
    February 18, 2010

    Too bad the ME brigade reads Jason studies exclusively. A much larger study with an order of magnitude more patients found CFS had exactly no affect on lifespan.

    We believe CFS kills you and we believe we have a virus, yup LM@31, that is defining “a disease through a belief.”

  34. #34 thomas_bernhard
    February 18, 2010

    prometheus, once again you antagonize far more than you illuminate. your obvious intent is merely to taunt and to chafe.

    it is downright hogwash that a sizable population of CFS patients are seeking treatment with AZT. this bunk hardly deserves a response.

  35. #35 stogoe
    February 18, 2010

    your obvious intent is merely to taunt and to chafe.

    “Merely”? “Merely”?! There’s no “merely” about it dude. Mockery and taunting are the highest good here on the internets.

  36. #36 Prometheus
    February 18, 2010

    “Your obvious intent is merely to taunt and to chafe.”

    …..and I would have gotten away with it if it weren’t for you pesky kids and your Medical Mysterymobile.

    My M.D. got a fishing call for Isentress on Monday from somebody he has never treated before…sorry but I’m not wrong.

    Do you also deny that people were popping valtrex and Canadian immuno boosters even before the Mikovits fiasco?

  37. #37 LM
    February 18, 2010

    No, there are no other studies on death rates, but many have CFS as the cause of death on their death certificates. I truely hope you never gets this, as you will find much more difficult to deal with with you current mind set. ME patients don’t believe they have a virus, they just know they are sick. Thousands of studies back this up. I realise it is very difficult to step outside of a belief that has so much publicity, but the science is solid, and the psychiatric belief is flimsy. Please do not hold onto that belief because you havn’t read them. The only reason this belief lasts is because of money.

  38. #38 SC
    February 20, 2010

    Not to worry, far better minds than you’ll find here are hard at work:

    http://www.ifarablog.org/2010/02/friday-press-conference-1-mouse-to-man.html

    And yes, Prometheus, that was all about you.

  39. #39 SC
    February 20, 2010

    Here are links to Stephen Goff’s post CROI presentation interview:
    http://blip.tv/file/3242252

    And Dr. Coffin’s comments on XMRV – comments on XMRV start at 4:00
    http://blip.tv/file/3242206

  40. #40 SC
    February 20, 2010

    We’ll know that this is all settled when one of those Macaques logs in and calls Prometheus a jack ass.

    Virus-Host Interaction: HIV and XMRV Organ and Cell Lineage Dissemination of XMRV in Rhesus Macaques during Acute and Chronic Infection. Prachi Sharma, Yerkes Natl Primate Res Ctr, Emory Univ, Atlanta, GA, US

  41. #41 thomas_bernhard
    February 21, 2010

    Yes, Promestheus, some CFS patients were being treated with Valtrex and Valgan.

    Especially after this small Standford study in 2007:
    http://med.stanford.edu/news_releases/2007/january/montoya.html

    And some cancer patients are flying to Brazil to meditate with shamans and witches. If you scrutinize any chronic illness, you’ll find patients who resort to unproven, asinine treatments. What’s your point?

  42. #42 thomas_bernhard
    February 21, 2010

    theory on Prometheus: gum flapper who’s never been slugged.

  43. #43 Laura
    April 10, 2010

    I have CFS and I can say for certain that I am not depressed, so whoever this Wessley guy is, he’s way off-track!! Depression doesn’t make you get achey arms every day when you wake up! Also I would suggest it’s probably the other way around. CFS is a cause of depression, at least until you can acclimatise to it.
    I have my own ideas as to what may cause CFS, but I shall not post them here as I may investigate it myself in a PhD once I am a bit better :) … sorry.

    Thanks for all the wonderful information though. Not sure how I feel about the whole discussion of death by CFS though. Hasn’t made me feel too good! Bit like the time I read that you can be ill with it for 20 years… that sucked too.

    Hope someone works it out soon though as it’s a bugger to be ill with something that no one can find!

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