# Study isolates virus in chronic fatigue sufferers



## Cheshire Kat

October 11 2009 - Updated top post:Researchers from the Whittmore Peterson Institute for Neuro-Immune Disease have announced the following:"October 9, 2009: Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome"Source: http://www.wpinstitute.org/news/news_current.htmlAbstract of the article published in Science magazine:


> Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide. Studying peripheral blood mononuclear cells (PBMCs) from CFS patients, we identified DNA from a human gammaretrovirus, xenotropic murine leukemia virus-related virus (XMRV), in 68 of 101 patients (67%) compared to 8 of 218 (3.7%) healthy controls. Cell culture experiments revealed that patient-derived XMRV is infectious and that both cell-associated and cell-free transmission of the virus are possible. Secondary viral infections were established in uninfected primary lymphocytes and indicator cell lines following exposure to activated PBMCs, B cells, T cells, or plasma derived from CFS patients. These findings raise the possibility that XMRV may be a contributing factor in the pathogenesis of CFS.Source: http://www.sciencemag.org/cgi/content/abst...&siteid=sci


To my understanding, a formal presentation of the research will be held:


> Dr. Judy Mikovits to reveal results of recent CFS research at international conference, Oct 19Dr. Judy Mikovits, PhD, will present her important new chronic fatigue syndrome research findings in Lisbon, Portugal on Monday, Oct 19, at the Tri-Society Annual Conference 2009.* Dr. Mikovits is Director of Research at the Whittemore-Peterson Institute for Neuro-Immune Disease in Reno, Nevada.Note: The news embargo on an article describing Dr. Mikovits' findings, published in Science magazine, was lifted Oct 8 at 2:00 pm Eastern Time.Source: http://www.prohealth.com/library/showarticle.cfm?libid=14887


Link: XMRV Q&A from the Whittmore Peterson InstituteTest for XMRV Availability? - Added October 13 2009


> Heard Through the Grapevine: Test kit for XMRV to be available from Reno-based VIP Dx (Viral Immune Pathology Diagnostics)October 12, 2009Rumor on the ProHealth Message Boards has it that Viral Immune Pathology Diagnostics (VIP Dx) in Reno, Nevada (www.redlabsusa.com), will soon make available a test kit for the XMRV virus - the retrovirus which most of the world knows by now is thought to be a biomarker for a large proportion of chronic fatigue syndrome (ME/CFS) patients....Test Availability from Whittemore-Peterson?Meanwhile, according to the XMRV FAQ at the WPI website, "The WPI has developed a blood test for the detection of XMRV. The test is currently undergoing clinical evaluation and validation. We hope to have a clinical test available to the public within the year."Source: http://www.prohealth.com/library/showarticle.cfm?libid=14921


Links to news coverage:*There are currently over 70 articles relating to the discovery that can be found via a Google News search for XMRV. This is a sampling:Does a virus cause ME?*This article seems to be fairly well balanced and raises some very good points about the possible meanings and limitations of these findings.Cancer-Causing Virus Linked to Chronic FatigueHealth Buzz: A Virus Might Be a Cause of Chronic Fatigue SyndromeVirus Is Found in Many With Chronic Fatigue SyndromeRetrovirus Linked to Chronic Fatigue Syndrome-----------------------------------------------------------------------------------Original post:I just saw this news story starting to hit the wire on Google News. Other news outlets are also popping up with the info. Thought it might be of interest:Study isolates virus in chronic fatigue sufferershttp://www.reuters.com/article/latestCrisis/idUSN08531030


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## Naomi889

Yeah I say that. This is what the scientists found. "The virus, called murine leukaemia virus-related virus (XMRV), was found in 68 of 101 patients from around the US with chronic fatigue syndrome. This compared with just eight of 218 healthy "controls" drawn at random from the same parts of the US, the scientists said. But the senior author of the study, Judy Mikovits, director of research at the Whittemore Peterson Institute in Reno, Nevada, said further blood tests have revealed that more than 95 per cent of patients with the syndrome have antibodies to the virus – indicating they have been infected with XMRV. If the findings are replicated by other groups and the XMRV virus is accepted as a cause of chronic fatigue syndrome then it could be possible to treat patients with antivirals, just like treating HIV"I dearly hope that these findings will be replicated and that anti viral drugs may help ME sufferersME sufferers have had a bit problem with their disorder being treated as a more or less entirely psychiatric one, like IBS. It is not impossible that if two people were to be infected with this XMRV, the one more disposed to stress may be more likely to get CFS/ME. It's possible, but there's no evidence for it - and CFS/ME sufferers have been angry that all UK government funded research into their condition has focused on the alleged psychiatric side. They’ve argued that this is very influenced by this guy called Simon Wessley, and that this psychiatric research was being done at the expense of any other research into the basis of their condition, as requests for grants into research into a potential viral cause were being turned down. That’s exactly how I feel about IBS! The psychiatric side is being overstated –to the detriment of research into the physiological basis of the disease. Currently, about half of all papers on IBS go something along the lines of “Severe IBS is more common in those with depression”. Well, no ######, Sherlock! Those with a distressing and debilitating illness are unhappier than the average healthy person? Spot the flaw in that logic. I mean a few papers along those lines are fine, even if they are missing the point a bit. Research in every field runs along “trends” and “schools of thought” – very frequently leading us up the wrong road.


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## M&M

Indeed! I agree Naomi.The other problem I notice with many studies like this, is that they are done on patients who have been diagnosed with chronic fatigue syndrome, the diagnostic criteria for which are sketchy and vague. In fact, today, there are 9 different definitions of what "CFS" is. So who knows which set of criteria were used for this study. Some of the definitions (or diagnostic criteria) for CFS would not differentiate between patients who are fatigued from anemia, allergies, cancer, MS, mono/glandular fever, thyroid illness, multiple chemical sensitivity, rheumatoid arthritis or lupus. So, when you're studying a group of people who may include patients with any and all of the aforementioned illnesses, and maybe even some other illnesses thrown in to boot, any kind of results you get will not be reliable, because the patient sampling was not consistent.So, while many studies and articles, such as this one, mention CFS as being the same as M.E., confusion sets in. M.E. is a measurable, quantifiable illness. It's diagnostic criteria are quite strict, and there are many tests that can be done to find the abnormalities and diagnose it. CFS, on the other hand, is quite vague in its criteria, in fact there is no currently accepted 1 definition, so to talk about CFS is already getting into murky waters.Bottom line, research like this means well, and I appreciate that. However, it doesn't really tell us much, because we don't truly know what all the patients involved in the study really are ill with. Now, if they start doing more research on M.E. patients (the diagnosis being confirmed through various quantifiable tests like brain scans, blood work, cardiac testing and neurological testing) then we might get some really reliable, helpful data.(For anyone who would like to learn a little bit more about M.E., the diagnostic criteria and tests available, feel free to visit http://www.hfme.org/ )


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## Kathleen M.

I'll see if I can get access to the full paper and see what criteria were used for this patient group. It is hard to know from news articles who they were really studying.Some of the supporting material is available on line and I copied this about the patient selection, hopefully this adds some clarity


> Banked samples were selected for this study from patientsfulfilling the 1994 CDC Fukuda Criteria for Chronic Fatigue Syndrome (S1) andthe 2003 Canadian Consensus Criteria for Chronic Fatigue Syndrome/myalgicencephalomyelitis (CFS/ME) and presenting with severe disability. Sampleswere selected from several regions of the United States where outbreaks of CFShad been documented (S2). These are patients that have been seen in privatemedical practices, and their diagnosis of CFS is based upon prolonged disablingfatigue and the presence of cognitive deficits and reproducible immunologicalabnormalities.


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## Cheshire Kat

I was just about to copy/paste that too.There's a lot more info on the specific parameters here:http://www.nhs.uk/news/2009/10October/Page...s-cause-ME.aspxEdit: And yeppers, agreed, while this research and its findings are very exciting, it still needs a lot more validating. The researchers aren't the ones hyping and misrepresenting their findings. They're all for cautious and conservative statements. Its the media that's running away with it.


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## M&M

Ah, that is good to know. Sadly, the 1994 Fukuda criteria is one of the worst out there, there are worse, but the 1994 Fukuda et al is one of the worst. They revised the case definition from 1988 (which was already bad enough), and in 1994 the CFS case definition was widened to include other illnesses. Upon changing the diagnostic criteria, researchers and doctors alike were encouraged to integrate a number of different fatiguing illnesses and disorders under the larger "CFS umbrella". There is a long history with all the different case definitions, and once you dig into it, it gets sordid rather quickly!


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## Kathleen M.

Yep, no matter how careful the researchers are to say how preliminary the results are and how much there is to figure out the news media tends to go with the juicy done deal type of headline, and that never helps.


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## Cheshire Kat

Kathleen M. said:


> Yep, no matter how careful the researchers are to say how preliminary the results are and how much there is to figure out the news media tends to go with the juicy done deal type of headline, and that never helps.


It does and it doesn't help, all at the same time. The information is a powerful tool but it comes at a price.The media is a blessing and a curse. Without them, news like this would not get much notice and coverage, and would take long and long to filter down to those who have an interest in it. Unfortunately, they need to hype and exaggerate it to sell themselves as distributors of important information. The more hype, the more important it seems, the more their status rises. So, the media 'sells' information using sensation and controversy -that's their job if they are to get the advert. funding to stay in business. Its our job to apply critical thinking skills to the information that's conveyed. Ah well, that's the game. [/opinion]There are quite a few 'issues' with this research that need to be addressed.It was a very small and localized sample. They are moving to test on a national scale.Cross contamination in the lab has not been ruled out to the satisfaction of the researchers.Its unknown if the patients contracted this retrovirus before, or after, displaying symptoms of CFS.Those are just a few questions that still require answers. And still none of these issues detract one bit from the findings. They are groundbreaking and will likely lead to many changes and improvements in the treatment of CFS. I have no doubt that this XMRV plays an important role in CFS, you don't get positive detection rates like that for nothing (67% and 95%). Privately, one of the researchers has said that she believes that XMRV is a very, very likely cause of CFS. Yet she has not abandoned reason altogether as she also states the need for much more testing to be certain.


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## Kathleen M.

It does seem with those sorts of rates it isn't likely to be a random chance event. I like that the news media even reports at all about science, I just wish they'd be a little more circumspect about the headlines and include some of the caveats.Some of the "scientists have no idea what they are talking about" meme is from the news reporting where it looks like every other day all the scientists change 100% of their minds (fat is bad, no fat is good, carbs are bad, no carbs are good) where if they'd take a few moments to try to understand the whole study rather than just look for the sensational headline it would help everyone understand the process a bit better. Even the first "fat is bad" studies included "some fats are good" information. Of course it doesn't help when the food and supplement manufacturers add to the hype so they can sell more product this quarter.*countdown to the first anti-XMRV supplement hitting the store shelves*because you know they are just dying to find someway to package something that isn't selling enough units as a cure for that, especially if it takes science a few years to come up with something that may actually work, and even if they eventually prove it has nothing to do with ME or CFS or any other human ailment, actually especially if they prove it has nothing to do with anything. Those are always the best ones for selling quack cures.But I may be cynical.


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## Cheshire Kat

Kathleen M. said:


> *countdown to the first anti-XMRV supplement hitting the store shelves*


LOL -so sadly true. No doubt a spike in sales of Antiviral hocus-pocus boosters is on its way.10...9...8...7...Yep, context is critical. To isolate & rip out one fact from all its surrounding contextual supporting data and neglect to qualify it with the variable parameters that produced such a result creates nonsense. Makes a nice sound byte I suppose. But at best its virtually meaningless as a standalone 'fact', at worst its become dangerous.


> But I may be cynical.


If so, then we have that in common







I've grown quite cynical myself as a sufferer of MC. About half the time I have no enthusiasm to even try to help myself anymore. The other half of the time...well, I get up and fight the good fight.As to the news information, I simply and truly hope that it leads to improved help for the victims of CFS. My wish is for better days for all of us sufferers of debilitating 'mystery' illnesses. Till then, maybe some hope can sustain us.


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## M&M

I just wanted to point out that, in this study, I don't believe the results have very much value, period - and that fact doesn't have anything to do with the media. I say this because their sample pool was contaminated due to the diagnostic criteria they chose to diagnose CFS in those patients.Here is basically an illustration of what they did - suppose you want to do research on diabetes. Instead of testing people for diabetes to include them, you accept all people with increased thirst (since increased thirst is a symptom of diabetes) into the study. You then did your research on all the people with increased thirst, and say the findings are results of tests on diabetes patients. Increased thirst can be a symptom of many different illnesses, or could just be the result of being too warm. Increased thirst is not an illness in itself, it may or may not point to a specific illness. The results are therefore completely useless and without value, because not all of the test subjects had diabetes. Maybe some did, maybe some didn't, but there's no way to know. It's mostly a complete waste of time.That is exactly what researchers do (including the ones in this study) when doing research on CFS patients. They take any patient who has fatigue, although we all know that fatigue can be a symptom of any disease/illness, or a result of normal exertion or poor sleep. Fatigue is not a disease process. This type of research is also completely useless, but does serve to further confuse the issue for many people.And wanted to reiterate again that CFS is only a mystery illness because of the incorrect diagnostic criteria set up for it. CFS, as it is used today, is a wastebasket diagnosis that means nothing. That propagates the myth that it is "mysterious", that the cause is "unknown", that symptoms are vague, non-specific and vary from patient to patient, that there are no tests to diagnose it and that there are no effective treatments for it. CFS has been used as a label put on any patients who present with persistent fatigue. What those fatigued patients need is a real diagnosis, they are actually being misdiagnosed and their cases mishandled because of the way CFS has been defined. Any diagnosis of CFS based on the 1994 Fukuda criteria, the Oxford criteria or either of the Australian definitions does not mean that the patient has a distinct illness called CFS. Any diagnosis of CFS based on those diagnostic criteria can only ever be a misdiagnosis. The reason for this is that despite the fact that the new name and definition of CFS were created in a response to an outbreak of what was unmistakably M.E., this new name and definition did not describe the known signs, symptoms, history and pathology of M.E. It described a disease process which did not, and could not exist. Patients diagnosed with CFS based on this criteria have been misdiagnosed. M.E. and CFS are not interchangeable terms.CFS has been used as an umbrella term to encompass and label a variety of different issues that can cause fatigue, that's why it seems "mysterious" - none of the patients have very much in common, because they all have different issues/illnesses going on. M.E., however, is quite different. It is the same in each patient (though some are more disabled than others by it), it is FAR from mysterious and has specific standardized tests and treatment protocols. A misdiagnosis of CFS not only harms M.E. patients, but also harms the patients labeled as CFS patients - as it prevents them from getting a true picture of what is going on in their bodies.Another example - it would be the same if doctors decided that constipation or diarrhea = thyroid disease. Any time a patient presents with constipation/diarrhea, the doctor diagnoses thyroid disease. Of course, thyroid disease can cause constipation/diarrhea, so some patients with constipation/diarrhea have thyroid disease. But we also know that constipation/diarrhea can be a symptom of any other number of illnesses. Maybe the patient really has IBS, maybe they really have Celiac disease, or IBD or Crohn's. By diagnosing them as having thyroid disease, the doctor has mislabeled the patient, therefore preventing them from finding out what they really have, and also preventing appropriate treatment.When we choose just 1 symptom and focus on it as a specific disease entity, we always miss the big picture. That is what many doctors, scientist, researchers and government agencies have done by labeling patients presenting with fatigue as having CFS.


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## Kathleen M.

I'm just hoping most of them had the additional cognitive and other issues listed in the material and methods as well as met what I think is second more rigorous critera rather than taking the broadest range possible. Usually they do for most clinical trials at least make some attempt (sometimes easier than others depending on the disease) to get a sample population that is as similar as possible.I know for a lot of the asthma studies around here people often aren't accepted because they want a similar group rather than anyone with asthma no matter how mild or severe.


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## M&M

Well, I suppose anyone can hope anything. However, the truth is that the study said the people involved were diagnosed using the 1994 Fukuda definition. That right there completely flaws and skews the study. The Fukuda definition is worthless. Therefore, any study using the Fukuda definition for its test subjects is also worthless. It's easy to get a sample of people who meet those criteria. But the only thing they'll have in common is a few vague symptoms, rather than an actual disease process in common.ETA:While the 2003 Canadian definition is definitely better than Fukuda et al, it is still by no means complete, nor is it entirely accurate. It paints a picture that you just have to fulfill the Fukuda definition and have a few other listed symptoms, in order to be diagnosed. Sadly, that is inaccurate as well. The 2003 Canadian definition is better than the Fukuda, however it is still sadly lacking, and someone would be able to fulfill their diagnostic criteria without having M.E. Any diagnostic criteria that lists fatigue as a major symptom of M.E. is inaccurate. Fatigue is not a symptom of M.E., so when that gets listed among the top 2 symptoms, they are already off base.


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## Kathleen M.

I'm just not clear from the brief on-line supporting material that included a second criteria and said this " and their diagnosis of CFS is based upon prolonged disabling fatigue and the presence of cognitive deficits and reproducible immunological abnormalities."That just having the broadest definition possible was enough to by itself get you in the study. They may have checked that criteria but it sounds like (and in a few weeks when the whole paper is up without having to pay for it) I can see if they clarify that more and what % did not have any cognitive deficits and what percentage had no immunological difficulties or if any were not disabled from the fatigue and did not in anyway meet the second criteria listed (not sure if it is better than the one you don't like, but sounds like it can't be worse). Usually if you use more than one criteria somewhere is a table with how many were which one and if they different populations were checked for different outcomes.At least if I were peer reviewing the paper for a journal of that caliber I would have asked those questions.







Heck if I were reviewing the paper for a mostly junk journal I'd ask those questions. But I can be picky.


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## M&M

My last comment on the topic is that anyone worth their weight in the M.E. world would not be caught dead even MENTIONING Fukuda et al, nor the 2003 Canadian definition. So to mention both those definitions in conjunction with a study that is supposed to be taken seriously is laughable. I can't expect anyone outside the M.E. world to understand that apparently, however, so I'll quit trying to explain it. I can only equate it to something in the IBS world, perhaps mangosteen juice, or something like that.


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## Kathleen M.

So you don't like any of the other criteria they said they used, either. I knew you didn't like the one, but not that every other thing mentioned was also completely unacceptable, and equally bad.At least a few things I had read sounded like the Canadian one was acceptable to some people, and rules out most of the people the Fukuda that have random other things or are just a bit depressed.I do know if you use multiple criteria (even if no one likes any of them) somewhere they will have to answer the question of how many were from each differing criteria and how that effects (or not) the results.Iwould have guessed having to have demonstrated specific immunological problems and certain types of cognitive deficits would help rule out most of the randomly tired, but I guess not. (especially since even with all the fatigue I have I don't even qualify under Fukuda and never would meet criteria 2, or 3, or 4 that was listed and I, personally, would like to see the break down of who was just Fukuda but didn't have anything else, vs who met all 4 criteria).Is there a criteria you would think is acceptable so I at least know that name? Sadly a lot of what comes up on a quick google that is not the Canadian one are things that I wouldn't accept (like they all have mercury toxicity or whatever other alt med test is faddish after all there is nothing the alt med world likes better than a vague diagnosis they can add one or two of their own spin to, especially if it is a test you can make everyone fail).I'm not saying the picked the best criteria, but was trying to understand why the other things didn't in anyway exclude people from the one you said was so bad.


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## Cheshire Kat

M&M,This research was not set up to seek, nor focused on, the cause of ME. That was not their primary mission. They were/are researching CFS as its defined and understood (or perhaps misunderstood) today. It may or may not prove to have bearing on specifically ME, but no one here has made that claim. Sure, CFS is an umbrella term for many undiagnosed/misdiagnosed conditions. Sure, the media, and laymen like myself, may incorrectly use CFS and ME as interchangeable terms. I never did that. The researchers didn't do that. You seem to feel that the research doesn't apply to ME, maybe it doesn't, but that's never what it was presented as. It was presented as research into CFS. This being a CFS subforum, I felt that the news info. would be of interest to all members reading the CFS subforum trying to understand their situation, whatever it may be. Surely they can make up their own minds as to what's interesting and relevant, or not, to themselves. Peace.


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## Kathleen M.

I did look at the article, doesn't seem like it gives much more clarity than the online supplemental did of meeting one or both of the two criteria listed AND have certain demonstrated abnormalities other than the tissues were banked here http://www.wpinstitute.org/research/research_biobank.html and I do not know if they know what they are doing or not (probably not because it sounds like no one researching CFS or ME does know what they are doing). I'd like more confirmation they did the standard sort of intake blood tests most clinical trials do to try to make sure they aren't adding in a lot of people with other stuff that could confound the results. (either instead of or in addition to the main thing they are studying).


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