Game Changer

October 8, 2009

Posted by Cort Johnson

“Hopefully this will finally make people change their attitudes to this disease.”       Dr. Judy Mikovits

The news had been in the air for the last week; the Whittemore Peterson Institute was going to publish something big  – really big – on Friday.  Then early Thursday the news was out – a retrovirus had been found in many if not almost all ME/CFS patients.  The media had prepared themselves well – feature stories shot up on the Wall Street Journal, LA Times, NPR, Scientific American, etc.

It was big news indeed – after two decades chronic fatigue syndrome (ME/CFS) was back in the news in a big way. Ironically the last big splash like this  in the 1990′s featured a retrovirus in ME/CFS  that didn’t pan out and left a young researchers career in tatters. One has the feeling that that is not going to happen this time.

A Deep Bench – One reason is the extraordinary depth of the research team involved in these findings. It’s not often  that the head of the NCI’s AIDS and Viral Cancer Center of Excellence  has any reason to utter the words “chronic fatigue syndrome” to the national media. But here was Dr. Stuart Le Grice not only uttering the words but likening this stage of the fight to the early HIV epidemic and its partners pledging the National Cancer Institutes best at unraveling just what is going on.

“NCI is responding like it did in the early days of HIV,” says Stuart Le Grice, head of the Center of Excellence in HIV/AIDS and cancer virology at NCI and one of the organizers of the July workshop.

Besides Dr. Grice (not an author of the study) we had Dr. Ruscetti from the National Cancer Institute and the discoverer of XMRV, Dr. Silverman from the Cleveland Clinic chiming in. Clinic. To top it off the study was published in Science,  the most prestigious and oft cited scientific journal in the world – an extraordinary event for the ME/CFS  research community.

“These compelling data allow the development of a hypothesis concerning a cause of this complex and misunderstood disease, since retroviruses are a known cause of neurodegenerative diseases and cancer in man,” Francis Ruscetti, Ph.D., Laboratory of Experimental Immunology, NCI.

The Big Picture – ME/CFS patients have never seen anything like this. And in fact it isn’t all about them. Among the stranger findings emanating out of the Whittemore Peterson Institute is the fact that this retrovirus, which had heretofore been associated only with prostate cancer in some neurological diseases was founded on most 4% of the healthy controls blood. This suggests that about 10 million Americans could be carrying a ticking bomb. It also suggests that anyone who’s having a blood transfusion could be at risk. Those two things got enough of the National Cancer Institute’s attention that it quickly convened a workshop in August on how to deal with this problem.

The study released by the Whittemore Peterson Institute found that two thirds of chronic fatigue syndrome (ME/CFS) patients were carrying a recently discovered retrovirus called XMRV that is associated with severe cases of prostate cancer. They were lead to this discovery by the fact that both ME/CFS and prostrate cancer patients often have a dysfunction in an important immune enzyme called RNase L.  When they looked at the ME/CFS patients they were astonished to find that most of them carried the virus as well.

In fact the prevalence of this virus in ME/CFS may have been understated. In telephone calls Dr. Mikovits reported that the WPI was finding antibodies to the retrovirus in fully 95% of their ME/CFS samples. The fact that the few fibromyalgia patients tested also tested positive for the virus suggests that it may be found in other neuro- immune diseases  and the WPI will be testing that possibility.

“I can’t wait to be able to tell my patients. It’s going to knock their socks off”                                      Dr. Judy Mikovits

The New (Old) AIDS -  AIDS and chronic fatigue syndrome were often mentioned together earlier in our diseases history. The infectious onset , the chronic course, the devastating nature of the illness, the inability to identify a pathogen and the  fact that HIV  had just arrived on the scene as well  - all made both lay and professional people think ‘retrovirus’. Twenty five years later the WPI is asserting that, yes, ME/CFS  patients are infected with a retrovirus – in fact, one of only three human infectious retroviruses in existence.  In some ways it fits very well; all retroviruses disrupt the immune system in such a way as to allow other viruses to flourish. Several studies have, of course, found highly increased rates of opportunistic viral infections in ME/CFS – a common, though more devastating finding in AIDS.

The Long Road – But after the ill-fated Wistar retroviral finding (see Osler’s Web) the scientific community mostly begged off the viral hunt in ME/CFS. Part of the reason was just our bad luck.  HIV  was killing people by attacking the masterminds of the late immune response - the T- helper cells.  T cells were and are a hot item in the medical research community. It’s the late immune response, after all, that is primarily responsible for finally knocking down a pathogen.

The early or innate immune response, on the other hand, is ‘merely’ responsible for identifying the pathogens and engaging in a holding action until the big guns (T-cells) come to the rescue. Its the natural killer cells in the early  immune response that are primarily affected in chronic fatigue syndrome and they weren’t  getting much respect.  While they  certainly kill invaders natural killer cells are also responsible for putting out the alert that a pathogen is present.  AIDS wipes out T-helper cells, it may be that XMRV in ME/CFS patients  knocks out natural killer cells; either way the immune  fails to spot pathogen’s. AIDS and ME/CFS patients may suffer from a similar problem but in different parts of the immune system.

Once the innate immune response research got cranking it took some remarkable findings in the late 1990′s and the early 2000′s regarding the RNase L  enzyme  and ME/CFS to eventually to turn Dr. Mikovits head toward Dr. Silvermans work on XMRV.  Science did work – just  in a greatly delayed fashion.

Transmission - If the XMRV virus is the key to the viral cascade that the Whittemore Peterson Institute has  identified in so many of its patients a central question involves how did that did that key get in the door? Viruses don’t just jump up and attack people they need to be transmitted. It’s clear that this virus is not spread through the air which means that in order to get infected with it the virus  needs to be transmitted from human to human via the saliva,  blood, semen or mother’s milk .  Just how the virus gets transmitted and how easily it gets transmitted will surely be the one of the major questions the National Cancer Institute and the WPI  will be working on.

Treatment – the list of possible treatments consists of anti-retroviral drugs that can have severe side effects. The WPI will  apparently be  testing these drugs out in some of their patients.

The Cause? – Nor do they  know if it’s the cause of ME/CFS. Dr. Mikovits is  clearly leaning  towards that idea but the WPI is  careful to state  that that has not been proven. Until we know better the XMRV  is simply another virus –  albeit with intriguing possibilities – that  has been found in ME/CFS patients. It  will take much more study as well as independent verification of the WPI’s   results before we can say how significant this virus is.

Game Changer – Only time will tell  how significant this finding will end up being but it’s clearly already realigning the ME/CFS research playing field. Dr. Reeves stated that the CDC is already attempting to replicate the study findings. The National Cancer Institutes quickly convened workshop, the  presence of this study in such a prominent medical journal, and the incredible news coverage that have  accompanied these findings hopefully suggest that something fundamental has changed. Yes, there are  questions about the results and they will be covered in a later blog, but the  widespread interest in this study will surely translate into greatly increased funding for research into XMRV and hopefully into more immune research in chronic fatigue syndrome as well.

“This is going to create an avalanche of subsequent studies.” Dr. Schnaffer (Vanderbilt)

Regarding federal funding this study couldn’t  have come at a better time. Neither the CDC nor the NIH (with the exception of NK cells) have show any interest in pathogens or the immune system in over 10 years.  Research into ME/CFS has declined precipitously in both institutions over the past five years. Hopefully this  study will shine a light on how poorly our federal government has funded ME/CFS  research and open up much needed possibilities for research and treatment.

“The scientific evidence that a retrovirus is implicated in CFS opens a new world of possibilities for so many people,” said Annette Whittemore, founder and president of WPI and mother of a CFS patient. “Scientists can now begin the important work of translating this discovery into medical care for individuals with XMRV related diseases.”

50 comments

{ 47 comments… read them below or add one }

Carolyn Richards October 9, 2009 at 12:04 am

I want to know how a mouse lukemia virus can be in humans. From what I read this will not grow in mice.

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drew October 9, 2009 at 4:09 am

Forgive me for being cynical, but why should this be any different from all the other viruses that have been “discovered” in ME/CFS patients? There is a long list of viruses that researchers have found to exist in high levels in ME/CFS patients, and this is yet another one. I’m not understanding why things might be different this time.

Drew

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cort October 9, 2009 at 9:27 am

I think the difference is that many of the pathogens found in chronic fatigue syndrome patients are ‘opportunistic’; that is, they’re present but inactive in most people but have become activated in ME/CFS patients. This is a relatively rare virus – at most it appears to be found in about 4% of the population – yet it was found in most ME/CFS patients. The fact that it is associated with particularly aggressive forms of prostate cancer adds another layer. The fact is a retrovirus – a kind of virus known for its virulence – adds another layer. I was wrong in the blog – there are only three known retroviruses. I believe HIV was the first. So its an unusual type of virus, it’s rarely found and viruses like it tend to have serious consequences.

(Let me correct myself again! There are only three known human infectious retroviruses – according to the Whittemore Peterson Institute)

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Will October 9, 2009 at 8:13 am

I believe there are subsets of CFS/M.E. patients, but have a few questions regarding the latest research:
If this virus is transmitted via blood, semen or breast milk why do:
1) Young people who are celibate and have not had blood transfusions, also become severely ill with M.E/CFS? Do all of them belong to a different subset?
2) Why don’t more babies of women with CFS/M.E. (presumably some are breast fed) not develop the disease if this newly discovered virus can be transmitted via breast milk? Where did the mothers get the virus from if they are married to faithful spouses?
3) Why don’t more spouses of people diagnosed with CFS/M.E. fall ill as well? Or are they just ‘carriers’ of the virus?
Are we talking about a very very small subset of patients here, or am I just ignorant?

Are different viruses not showing up in our blood because of a dysfunctional immune system in the first place? What has caused this dysfunctional immune response? Certainly not only this newly discovered virus?

I do however believe that viruses and NK cell problems play a very important role in a fairly extensive subset of M.E./CFS patients.

Are our hopes raised in vain? Again?

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cort October 9, 2009 at 9:35 am

I actually was not complete in my description. The XMRV virus is apparently found in the saliva. Whether it can be transmitted via the saliva is an entirely different question. HIV, for instance, is found in the saliva but cannot be transmitted via saliva. It could sit latent in a mother who passes it via her breast milk to her child. Perhaps then it sits latent as well. Its been associated with prostate cancer – so it appears that can be present for long periods of time before it has a negative effect. How that virus has been transmitted will be a key question.

We appear to be talking about a very large subset of patients. Dr. Mikovits said that unpublished work indicates they’ve founded it in 95% of the patients. We don’t know who these patients are. Are they the fluey, pathogen ridden Incline Village cohort which Dr. Peterson has said makes up about 25% of the ME/CFS population or are they from the broad group of ME/CFS patients who fit the 1994 definition. It was intriguing that the virus was also found in a few fibromyalgia patients that have been tested. This suggests it could be found in a lot of people.

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Andrew October 9, 2009 at 8:44 am

It certainly is interesting and the fact that its associated so heavily with RNase L dysfunction is intriguing to say the least. I have really given up hope that a true causative single agent will be discovered in the next 20 years but it would be wonderful news to at least have a solid direction to go forward with.

I wonder how the CDC will be able to connect early childhood sexual abuse to a retrovirus? Maybe it makes the abuser’s brain want to abuse children and that abusive contact transmitted the virus? …and in the second generation it causes ME? hmm they have some explaining to do ;)

If it turns out true I am will write to every Journal that published psychobabble about CFS and ME and give them a eye full!

Did I read this right? “in fact, one of only four retroviruses in existence” Only four retroviruses exist? That doesn’t sound accurate.

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Andrew October 9, 2009 at 12:47 pm

I would have to say, I believe there are defiantly more than 4 known exogenous retroviruses and add to that, the endogenous.

It will be interesting to see how it all plays out. With the 95% antibody reactions… I would be curious to the see that data play out on antibody reactions in the general public.

If its in other diseases, particularly FMS, then I think we can rule this one out too. However, treatment of an active infection could turn the tide and help the body recover. Certainly can feel the excitement generated from their research :)

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Vickie October 9, 2009 at 3:54 pm

How does this particular virus that is spread through saliva, breast milk and other sexually transmitted ways account for outbreaks. In Lyndonville, it got children, adults and even farm animals sick. Do you really believe the whole town had an orgy or could it be that this mouse leukemia virus is secondary and not primary? And why did you knock the NCF, previoulsy, for funding leukemia work but now you laud these authors who are jumping on getting a test out when only 7 of the most serious patient samples sent to the Cleveland Clinic were positive?

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Keith October 9, 2009 at 4:26 pm

I’ve been a firm believer for years that a distinct pathogen was involved in cluster outbreaks( Tahoe Cohort) of CFS/ME. It makes sense if you read Oslers web and realize how many people became ill in such close contact. Perhaps this virus has a short time frame where it is contagious like a few months at the beginning of the illness then hides out somewhere in the body where it is not as contagious.
I worry about the cases the CDC would use to verify this study. If they use there watered down case definition they will be testing many people that do not even have CFS. They destroyed Elaine Defreitas years ago for claiming she isolated a retrovirus in the blood of CFS patients. Maybe she had even been looking at this exact same virus? Will they go out to disprove rather than prove this finding? Will they be able to?
Another thought. Should not the CDC immediately be advising and warning those with CFS not to give blood. Should not the blood supply immediately be screened for this virus if possible? As much as I want this to be a cause of CFS so we have an answer it terrifies me that I could pass it to someone and cause illness, I have never given blood and it was for fear that I could give someone my illness. I’m so thankful I never did but the CDC says 75% of those with CFS are not diagnosed. That means these people could be donating blood and not know they have a retrovirus. It’s very scary to think about. The CDC job is to primarily prevent disease. Are they going to step up and look into these issues. They had better do so!

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cort October 9, 2009 at 5:21 pm

The NIH is clearly concerned about the blood supply. I wouldn’t be surprised if that concern isn’t driving a lot of activity at the present. Even if the CDC uses the watered down definition of ME/CFS they should still find the virus in a significant percentage of patients. Suppose they only find it in 25% of the patients they are testing – it’s still a significant percentage and in fact illuminates a distinct subset of patients. It says hey! there is this group of patients walking around with a potentially deadly virus. I think all they need to do is find it in a distinct group of patients.

I can’t imagine that Dr. DeFreitas was looking at the same virus; she must’ve had markers that she was focused. Surely the WPI researchers are very cognizant of that earlier research. I think if the two viruses looked similar we would know about it. The National CFIDS Association tried to find evidence of that virus and failed.

I wouldn’t take the CDC to task for not warning Americans yet. It will take replicated studies before the scientific community signs onto this finding. They would be accused of overstating what they had if they did anything now.

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Matt October 9, 2009 at 9:00 pm

I’m with Will on this. If its only transmitted by body fluids why do so many celibate young people
who haven’t had any blood transfusions etc. get it? and why do many partners not get it? Mind you the scientists haven’t said it can definitely ONLY be transmitted by bodily fluids
I remain cynical, as others have said we have had several studies in the past that have been proclaimed in the same way.
I’m not saying the study is of no relevance – perhaps it points back to the fact that the immune system of CFS patients is weakened. That is the retrovirus is caught by people with CFS more easily but it is not what causes CFS
I still suspect its the natural killer cells. Didn’t Klimas et al look at perforin a few years ago, CFS patients were deficient, therefore killer cells weren’t working properly

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Will October 10, 2009 at 7:05 am

In spite of my always questioning mind I have to add that I am closely acquainted with a family of 3 who have all been medically diagnosed with M.E./CFS (in this case people who are truly ill and disabled). They have been ill for close to 20 years. Parents and a child, the latter who fell ill before age 3. There must be a common denominator.

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Keith... October 10, 2009 at 7:43 am

My mom my brother and I all have cfs and developed it after an ititial infection at the same time. We have all been ill for many years. I am adopted and obviosly have different genetics. Interestingly I have recovered more than my adoptive family. Maybe this virus could be transmitted via saliva through sharing house hold items like food utensils or tooth brushes. There is blood in saliva. Also perhaps some people can carry the virus and not be ill. Many people carry HIV and do not become ill for years.

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Andrea October 10, 2009 at 12:05 pm

http://www.wpinstitute.org/news/news_current.html
Hello I just wanted to let all of you know that information is still forthcoming on so many fronts. Please be patient but we are so excited about this research and hope to have new info posted very soon. And to all I hope you are having a wonderful weekend sharing news with family, friends and community.
All my best,
Andrea

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cort October 10, 2009 at 2:28 pm

That was from Andrea Whittemore, Annette Whittemore’s daughter (who’s had ME/CFS for many years now). Thanks for chiming in! Andrea really is at ground central at the Whittemore Peterson Institute; without Andrea no Annette and no WPI. Your family’s persistence and vision has obviously changed the face of this disease – what a remarkable thing! Thanks to all of you.

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HVS October 10, 2009 at 6:34 pm

Andrea, my family is very grateful to yours. My spouse and I are both Dr. P patients. The work of your mother, Judy M., Dan P., and others give hope for my toddler’s future health and happiness.

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Ann Corcoran October 10, 2009 at 7:37 pm

Andrea, I want to chime in, too, with my thanks to you and your family, particularly your mom, for what you have done to advance the knowledge of ME/CFS. My brother’s life has” been devastated for 20 years, by the illness itself and by outright scoffing at his “selfishness” and “laziness.” Heartbreaking. So, THANK YOU. (intentionally ‘shouting’ – from gratitude!).

For all in general: At this point, the most hopeful thing that I can see is that the research findings “legitimize’ what ME/CFS victims endure. But that is a MAJOR step.

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Matt October 10, 2009 at 7:53 pm

Andrea,I’d like to pitch in and state my great appreciation too. I keep an open mind about the research despite my cynicism. As you will no doubt appreciate there have been a lot of good sounding studies over the years that amounted to nothing. Enteroviruses, mycoplasma etc
Lets really hope and pray that this is THE one, that the retrovirus is a primary factor, and can be knocked away by anti-retrovirals, and we can all live highly improved lives

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Matt October 10, 2009 at 9:56 pm

Even if this virus does not CAUSE CFS then at the very least it shows there is something wrong with CFS patients’ immune systems. At the very least it brings back the IMMUNE system to CFS in a big way.
I still have plenty of questionmarks about the retrovirus. I came down with CFS following a flu-like illness when I was 17 – I had had no sexual relationships, blood transfusions nor used any form of drugs (therefore transmission throuhg syringes couldn’t have been a cause)
Sounds like there are plenty of others like this too.
I’ll keep an open mind, but based on my own experience I’d be surprised if this virus is the cause of CFS. I think its probably a secondary infection underlining an immune system defect, probably in the natural killer cells. But lets wait and see.

Speaking of which, in the mid 90s there was a bit of mini hype around a drug called SPG or sizofiran, which is derived from a Japanese mushroom called suehirotake. A doctor at Kyoto University had done some research on it, he seemed to anecdotally achieve very good results clinically, and apparently measures such as natural killer cell activity responded very positively in CFS patients. Does anyone know what happened to SPG, why research didn’t go any further? The internet is fairly scant on it.
Cort?

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Will October 11, 2009 at 4:53 am

Andrea, please convey my heartfelt gratitude to your parents for having made the Whittmore-Peterson Institute a possibility! My admiration to you too for having lived so positively with M.E./CFS during all these years. Despite my initial skepticism, I do feel excited about this research and look forward to its unfolding.

I am moved by the posts that I read today. For close to a decade we were told M.E./CFS could NOT be contracted by a spouse, nor appear in more than one family member, and that young children could IN NO WAY possible contract it. Yet, we suddenly found ourselves in a situation where the ‘impossible’ had indeed happened and nobody would believe, nor help us. Ten years into the illness we found a doctor who believed and diagnosed us. We also found great support from Jane Colby at TYMES Trust in the UK, even though we do not live there. Our deepest heartbreak has been to witness the devastation this illness has created in our child’s life.

We cannot fathom how we could have contracted such a virus, unless via gamma globulin injections…though that was only after we had fallen ill?? So many questions still unanswered, yet, that there is something ‘a foot’ is obvious.

With best wishes to all who are ill, their family and friends. May the mystery of this complex disease soon be unraveled.

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Heidi Bauer October 11, 2009 at 6:01 am

This is taken from the power point presentation on the WPI site. It’s a bit of history on the retrovirus.

“- Francis Peyton Rous discovered the first retrovirus (cancer-causing chicken virus, RSV) in 1910.
Was derided at time. Won Nobel prize for the work in 1966 (at age 87).

1960s: Howard Temin: suggested DNA “provirus” was
part of replication cycle:RNADNARNAProtein
- Originally derided
Won Nobel prize (with Baltimore) in 1970 after
they independently discovered RT activity in infected cells

1980: Human T-cell leukemia virus discovered,
the first pathogenic human retrovirus.

1982: Human immunodeficiency virus discovered.

1990: First gene therapy trial involving the use of retroviral-based vectors in patient with a deficiency in adenosine deaminase (ADA).

2006: Xenotropic murine leukemia-related virus discovered.”

In the continued studies that Dr. Mikovits talks about, 95% of the 300+ patients showed either the active XMRV virus, or antibodies showing the body had already launched the attack on the virus and won. I’m looking forward to seeing how the dormant XMRV is causing problems. Seems there could be a whole breakdown of dormant viruses turning each other on. Like a viral orgy.

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Shannon October 11, 2009 at 6:28 am

Okay, so here’s what concerns me. This CFS related virus is called XMRV, which stands for “xenotropic murine leukemia virus-related virus.” Has anyone else noticed the word “leukemia” in there? When we were all vaccinated as kids, nobody was ever told that there was live leukemia virus added in to the Polio serum, and nobody talks about it…

JS – just sayin’….

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Nancy October 11, 2009 at 8:55 am

This is all so fascinating.

Regarding Will”s comment: “We cannot fathom how we could have contracted such a virus, unless via gamma globulin injections…though that was only after we had fallen ill?? So many questions still unanswered, yet, that there is something ‘a foot’ is obvious.”

I recall getting a Gamma Globulin injection when I was 9 years old in preparation for moving to Korea (from the US). To this day ( I am 43) I recall the pain it caused me. I don’t remember any other vaccinations of my childhood, but this one sticks out. Weird.

Nancy

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VJP October 11, 2009 at 12:45 pm

I was just corrected by a scientist elsewhere who asked where “3″ retroviruses came from. I was referred to wikipedia for the phylogeny:
http://en.wikipedia.org/wiki/Retrovirus

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Marian Smartt October 11, 2009 at 1:04 pm

A special thank you to Andrea and your family. Thank you also for posting on this site that more information is coming. It gives all of us hope, something we desperately need to keep going. God Bless you and your family…and PLEASE keep us posted!

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Puzzled October 11, 2009 at 9:20 pm

As a sidenote, I’m a little tired of some NCF supporters’ bizarre attacks against Cort. I support the NCF and believe in their work, and think there will be some crossover with the WPI’s findings. As far as I know, no one directly involved with the NCF is speaking against Cort, so I’m not saying anything against the NCF itself. It just seems some of their supporters (or to be fair, perhaps just one under different user names) are misunderstanding where Cort is coming from and then going out of their way to speak angrily against him in various forums. I don’t think he has said anything against the NCF, he has just shown some slight reservation about accepting their direction just yet. He has not only been completely fair, but is entitled to his opinion. So please try not to be so sensitive about any perceived criticism that you are then doing what you are accusing him of – going on the attack.

Also, to some of the others here, I think Cort has done an excellent job answering some of your questions in both the article and his follow-up comments. So please show him due respect and read them a little more carefully. As he’s said, the other infections may be opportunistic infections, so I don’t see why other viral findings negate the importance of this new discovery. And, as stated above, the retrovirus may lie dormant. Or it’s likely it may not have effect until some of the opportunistic infections take hold, as happens in HIV. It also hasn’t yet been ruled out that this is transmissable by saliva. So there is no reason to rule it out as a cause yet simply because ME/CFS first appears in some people as a child (as it did for me).

Please also carefully go over all the information the WPI has released before being too dismissive. Much of the confusion people are feeling or the outstanding questions are answered within the information itself.

Some reservation and temperance of excitement is understandable, but there seems to be a certain amount of undue skepticism coming from not completely understanding the information. A retrovirus is not just any virus, it is a BIG DEAL. It could cause any of the other things thought to be a cause, like other viruses, gene changes, gut toxins or the NK cell deficiency mentioned above. I understand wanting to guard against false hope, but some of the dismissiveness or cynicism above goes too far.

Further, the WPI and the associated groups have a reputation for excellence and are not in any way prone to sensationalizing. If they have a great deal of confidence in what they are finding, it’s completely reasonable to have faith in them. Personally, I see their finding as tying up a lot of previous findings, rather than contradicting them.

A retrovirus is something serious enough to cause something as serious as what we have. I must admit, I have always found it puzzling in ME/CFS forums that viral causes – and now even a retroviral cause! – are treated with suspicion while other less likely and less serious causes – toxins, bacteria, various deficiencies – are readily taken up, especially when many of us have been attempting to treat these secondary issues for years with no improvement or only minor symptomatic improvement.

I have a great deal of faith in the WPI and I think we should avoid second-guessing their findings in a way that implies we know better than them, especially without fully digesting the weight of this information.

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Anne Örtegren October 12, 2009 at 4:35 am

I think two key questions have been raised here – does anyone have more info on these?

1. Which ME/CFS patient group is represented in the study? Citing Cort: “We don’t know who these patients are. Are they the fluey, pathogen ridden Incline Village cohort which Dr. Peterson has said makes up about 25% of the ME/CFS population or are they from the broad group of ME/CFS patients who fit the 1994 definition?”
The study says, under “Patient samples”: “Samples were selected from several regions of the US where outbreaks of CFS had been documented.” This points to the first alternative, the group studied have all been a part of ME/CFS outbreaks, and this makes it possible that the virus connection is relevant to this subgroup only. Still a major finding, but not relevant to all with CFS.

Does anyone know which patient group has been studied in the follow-up work, where WPI found antibodies in 95% of the patients?

2. Which definition is the CDC using when they are trying to replicate the findings? The CDC 1994 Criteria? Or the Reeves Empirical Definition? This should make a huge difference in their results.

Any info on these two key issues is appreciated!

Thank you Cort, for reporting in such a great way – as always!

And many warmly felt thanks to Andrea and her family. You are bringing hope to us ME/CFS patients all over the world!

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cort October 12, 2009 at 6:01 am

I assumed at first that it was the ‘Incline Village type cohort – pathogen ridden patients with very low natural killer cell functioning and messed up RNase L but I’m beginning to think that it’s much wider. The WPI got 14 of their patients from Dr. Cheney. He didn’t indicate that this is a special subgroup; instead given the results of those patients he thinks virtually all ‘well defined” ME/CFS patients will harbor the virus (!). Dr. Mikovits also reported that the few fibromyalgia patients tested were positive. I’ll bet they will be looking at other similar illnesses such as IBS and in diseases like multiple sclerosis. I have no idea where those 330 patients in the follow-up study came from.

That’s a great question regarding the CDC; I’m sure it presents something of it a dilemma for them. Unfortunately the Science paper did not indicate how the WPI defined their patients; they simply stated they were from ‘well-characterized’ cohorts. I don’t know why they didn’t say “well-characterized cohorts that meet the 1994 definition”. Dr. Reeves picked up on this immediately; he said he didn’t know who these patients were. This, of course, would seem to leave the door open for the CDC to pick the definition of their choice.

In any case all I think the CDC has to do is find this virus in significantly more ME/CFS patients than healthy controls; even if they do use the empirical definition I’ve gotta think that’s gonna happen. They won’t be the only ones looking at ME/CFS patients – this thing has gotten really big really fast – you’ve got to think they are going to be other research teams involved.

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Keith... October 12, 2009 at 5:42 pm

Reeves already says his expectation is that they will not validate the study. The bias starts already!

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Andy October 13, 2009 at 5:22 am

Dr. Mikovits just reported that they are finding XMRV in Autism too. Its starting to sound more like a significant co-factor instead of a definitive cause.

None the less! I want to thank all those involved at WPI and encourage everyone to donate whatever they can at the WPI web site. Even if every patient just donated $25 it could make a difference and keep the momentum going. Today is a good day for action!

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chris October 13, 2009 at 6:14 am

I personally found the NY Times article in the Science section tremendously irritating. The Times, our vaunted “National” newspaper, was late in picking up this story, showing how very weak their editorial staff really is. Even now they cannot figure their way on this situation – so they play both sides. It is a familiar pattern. The way I look at this situation is that Reeves is caught here with his pants down and he is acting the part. On the other hand, the WPI is moving forward, and they are not spending any time worrying about the stumbles of the past. Whatever happens, their “activity”, their aggressiveness will generate additional research. This is the beginning of their efforts, not the end. It is important to remember that there are not large numbers of people at WPI, that they are working hard at what they see as significant developments. Soon they will have more researchers and more money. Most important they are both projecting outwards, and bringing things in from the outside. They have the ability to act without restraint. They are not a self protective, dysfunctional bureaucracy. They certainly understand that their research needs to be validated, but I cannot imagine that they are expecting this to come from the government. The WPI, unlike Reeves, does not have the extra time to deal with the baggage of the past. The scientists at the WPI and other private labs are trying to make careers, not protect them. There is a big difference and anyone with exposure to academia (acanemia) knows what I am talking about. The WPI scientists are fresh on the scene with great empathy with patients. What could be better, even if the consequences of their research is not fully understood? Time will tell, but at least there is a direction and a momentum. At least they are moving forward with the “possibility” of great advances. I think this situation is pretty straight forward and not particularly difficult to understand. Since October 8, 2009, the world of CFS has gotten exciting and this will continue.

Chris

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Denise October 13, 2009 at 6:59 am

Cort,
Good comments from you as usual.
http://well.blogs.nytimes.com/2009/10/12/for-chronic-fatigue-sufferers-vindication-in-a-virus/

Not meaning to wish people ill, but I hope that Reeves is foundering with his remarks. If he IS, maybe we can get him OUT and get someone who knows and cares in his place at the CDC to work WITH us and not AGAINST us.

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Keith October 13, 2009 at 2:12 pm

Andy
I have CFS and I have two children both of whom are on the autism spectrum. One has aspergers the other PDD_NOS. I have been in touch with doctor Bell and he feels it will be looked into if this viur could cause both.

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Ross October 14, 2009 at 3:24 pm

At last….Justice begins! Too many have suffered and died needlessly for much too long. Too many unable to cope with this devastating illness have taken their own lives. Too many innocent children have suffered unnecessarily. This discovery is a game changer for certain and it opens so many doors for accelerated progress with research and treatment possibilities. I saw Dr Peterson this week and was unable to begin to express the gratitude I feel and see is rippling through the PWC community. I knew it was our time… I could feel it. We needed hope renewed. Now we have it!! Thank you WPI!

I also feel there is an ominous truth to some of this….and it’s best we get on with dealing with it now. Maybe they have uncovered a simmering epidemic of retro-viral caused NeuroImuune illnesses of which we have only seen the tip of the iceberg. I do believe (as do other qualified sources) that this is the same virus that Dr De Freitas discovered years ago….and if that is true, it will have horrific implications beyond conception, ie…..the CDC may have known what they were covering up and consequently allowed the spread of a very dangerous virus causing the widespread unnecessary suffering and deaths of thousands, the emergence of a NeuorImmune disease epidemic, and the spread of an extremely dangerous Virus through a contaminated national blood supply. If this is true, which I pray it’s not, then a lawsuit of massive proportion is in order. Even if it weren’t a deliberate cover up, it’s still criminal negligence of epic proportions. Of course Reeves will return a report of finding a low percentage of XMRV in his study group and of course that will be due to his group not being “True PWC’s”. We all expect that even though he is outnumbered and outclassed this time. But, this may not be such a bad thing since it may solidify the diagnostic criteria for real ME/CFS being a biological disease when compared to the WPI results.

I am so eager and excited to see where this is leading us. I hear many people concerned about the implications of this Virus for themselves and I personally feel this discovery may very well be nothing short of one of the most profound discoveries this century. At the least, it legitimizes this disease as physical and it opens the floodgates for attracting researchers and tons of $$…..and that is going to benefit all PWC’s…. XMRV positive, or not.

Anyhow….Thank you WPI!

Ross Radcliffe

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Nancy Klimas October 14, 2009 at 7:04 pm

WPI is to be congratulated! They deserve all of the praise and enthusiasm that this study has garnered. The next step is validation by one or more groups; extending the work into other neuroinflammatory disorders; and a carefully considered design of the intervention studies that should follow. Researchers, clinicians and patients are all excited about the possibilities. So now – association, causation, the role of co-infection, subgroup identification… all important questions that can be answered. Lets hope that there is enough research funding out there to get it all sorted out as quickly as possible. I can tell you that our group in Miami is keen to help out any way we can.

Two weeks before this paper, a group of international investigators met in Banbury to develop a research network to speed along research advances and develop a clinical research network. Suzanne Vernon of the CFIDS Asso organized the meeting with the ORWH at NIH, and an impressive group of investigators committed to work together and make this happen. That’s moving right along, with the investigators all committed to moving with speed to take our basic science advances to the clinics with effective therapy.

So it is a good time to have high hopes for CFS patients. I am jazzed…I hope you are too!

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Erik Johnson October 14, 2009 at 8:07 pm

Yes. The testing was done on the original “Tahoe Flu” group.
Which means that XMRV is not something that was discovered in people who were diagnosed with CFS, but rather, in the cohort whose illness “CFS” was coined and commissioned to investigate.
And, in opposition to the concept of “allostatic load”, Dr Cheney and Dr Peterson deliberately selected patients as prototypes for the 1988 Holmes CFS definition study group on the basis of a paucity of identified pathogens.
Not only to rule out the concept, but to make identification of the primary cause easier, when “The Tahoe Study” was passed on to the CDC.
We didn’t know then, that the CDC had no intention of looking.
Those were much simpler times.

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Elsie Owings October 14, 2009 at 10:33 pm

First, let me offer my profound gratitude to the WPI for their research, to Cort Johnson for his insight, and to Dr. Nancy Klimas for her professional comments. Call me an optimist, but I believe that this discovery will be a huge step forward in ME/CFS research, even after the CDC predictably denounces the findings.
Now for the weirder aspect of my comment: the “murine” aspect of the retrovirus intrigues me. For nearly 20 years, I have told people that I believe my pet mouse got sick from me, and I’ve always been told that it wasn’t possible. Maybe they’re right, but here’s what happened: about 8 months after I came down with ME/CFS, I was going through a really bad spell. I was feverish, my kidneys ached, and all I could do was roll around in bed and feel awful. My mother had to come from her house, 12 miles away, to fix a bowl of soup for me, because I couldn’t do it myself. It was one more in a series of miserable bouts that I suffered during that first year. Later that night, I heard my two pet mice running in the wheel in their cage. They were overdue to be fed, so I staggered out of bed and leaned into their cage and changed their food and water. “Mr. Mouse” was the older of the two mice and was very athletic and healthy. We jokingly called him “Arnold Swartzenegger” because he had powerful muscles from working out in his wheel. “Baby Mouse” was younger, probably female, and less robust than her roommate, although she ate well and seemed healthy. The two mice got along well with each other and appeared healthy when I fed them. After feeding them, I washed my hands, and it occurred to me that, although one should certainly wash AFTER handling mice, maybe I should have washed BEFORE feeding them as well, since I was sick and they were healthy. Within a day-and-a-half, “Baby Mouse” appeared ill. Later in the day, she began to roll around uncomfortably and shake with fever. The next day, she died. “Mr. Mouse” remained unaffected and seemed baffled by his roommate’s sudden decline.
Of course, the idea that she got sick from me is only a hypothesis, and rather a far-fetched one at that. But, on the other hand, where else could she have gotten it from? She had been healthy, her food was fresh, her cage was clean, and she certainly didn’t catch anything from Mr. Mouse, who survived for at least another year. Sometimes I wish I had kept her frozen remains. Then perhaps someone could have eventually proven or disproven my hunch.
PS: Both mice came into my home well after I came down with ME/CFS, so the contagion didn’t go in the opposite direction; I didn’t get sick from THEM.

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Mio October 15, 2009 at 2:19 am

Thanks WPI!
Andrea! What a wonderful mother you have! I salute her determination and the researchers, so brave, fighting this battle for all of us out there in the world. We who almost had given up hope of ever beeing understood an treated with respect and compassion, as we once were in society, before this illness struck us and we were seen upon as just lazy and crazy.

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Sarah October 16, 2009 at 6:11 am

Elsie, that is a sweet story about your little pet.
But you likely did not infect it with XMRV. The X stands for xenotropic, and here is the definition of that word, from One Look Dictionary:

xenotropic

(Science: virology) refers to a genetically transmitted retrovirus that cannot replicate in the host species that is harboring it but which can infect and can only replicate in the cells of a different species.
—————
The paper in Science Express had a nifty graphic that showed this concept in pictures. In their words, mice no longer have a receptor for this virus.

Learning these new words, I was wondering if we humans can still pick up the retrovirus from overly much contact with mice. Cort’s description [of how the lab checked to be sure they were not finding more or less random RNA associated with all the mice kept in the lab] seems to rule that notion out.

I guess I want someone to say that very clearly, that a big mouse infestation in the house will not provide XMRV to the people living there. From which you can correctly guess that one of the yucky events in my life not long before I got severe viral bronchitis (which got cured) and M.E./CFIDS (which already marked 20 years in me), was a horrid and huge infestation of mice that took a long time to be cleared up. I had altogether too much contact with the evidence of mice, and did the clean up job once they were gone.

Cort, thanks for so much good, clear writing so quickly, and such good investigation, too. You have not missed a fact or an angle into this exciting development. Andrea Whittemore, thank you for everything. It was great to see your photo in the NY Times. A friend in NY said it was on the front page of the Science section, the real paper version.

Sarah

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Elsie Owings October 16, 2009 at 10:38 pm

Sarah, thanks for the valuable information that you provided about xenotropic viruses. I realize that the connection between my illness and Baby Mouse’s death may have been strictly coincidental. Nevertheless, it will be interesting to hear where the research leads in the coming months and years.
By the way, Mr. Mouse and Baby Mouse were both kept as pets from shortly after birth, but they were not domestically-bred pet-shop mice. They were the ordinary white-footed mice that can become pests in people’s homes.
My experiences also lead me to wonder about a connection with cats. (Long story, but I also owned and placed cats at that time.) Of course, cats are exposed to both mice and humans…
Many questions are yet to be answered, but the latest research is incredibly valuable, because at least it helps our researchers focus the direction of their questions. I just watched Dr. Klimas’s video, and, of course, it was great science and solid advice, but I’m sure the good doctor understands how difficult it is for us to accept the “be patient and wait” advice. We have already waited for what seems like an eternity (21 years, in my case.) But it’s not really my case that worries me the most. It’s two other cases in the support group where I serve as a co-leader that have me worried. For their sake, I’ll be hoping for speedy progress on the research front.

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Will October 18, 2009 at 2:44 am

I do wonder about cats being a vector between mice and humans? They eat mice and often have close contact with their owners?

As to the general advice that women with M.E./CFS (the latter as being defined by the Canadian Consensus Definition) can have children with no ill-effect on either them or the child — I believe that in some subsets of M.E./CFS the disease *can* be passed on from mother to baby. Now, with the latest research at the WPI my premise does appear to have validity.

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Elsie Owings October 18, 2009 at 5:55 am

Will, I, too, have seen cases where both mother and children had CFS. We still don’t know whether the actual virus or retrovirus was passed along in utero, or some other genetic tendency was inherited, or viruses were passed from person to person after birth, or perhaps some other factor was involved. I guess we can hope that the new research will shed some light on those questions.

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Miguel October 19, 2009 at 10:54 am

This is a very exciting development that will hopefully lead to effective therapies. Thanks Cort, Dr. Klimas, and others who have worked so hard to keep us all in the loop.

Does anyone know whether it is possible for XMRV to be transmitted from mice to humans via ticks or other biting arthropods? This is something ILADS might be interested in pursuing since XMRV could be a very important co-infection capable of suppressing immunity and increasing susceptibility to other infections and overall morbidity. Lyme disease patients may want to ask their Lyme doctors to test them for XMRV. It would be great if ILADS and the CFS/FM research community could work together on this issue.

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Tom Kindlon October 21, 2009 at 1:05 pm

RE: Anne Örtegren 10.12.09 at 4:35 am

Reeves says the empirical definition is the Fukuda definition.
In a way he’s right. But only if you are willing to stretch the truth.
In the empirical definition, you have to satisfy the fatigue criteria (as it’s supposed to be the Fukuda criteria). So you can do this, by scoring 13 or more on the MFI-20 general fatigue questionnaire. But if you don’t satisfy that (which isn’t that hard to satisfy), you can satisfy the criteria by scoring 10 or mroe on the MFI-20 reduced activity questionnaire. These questionnaires are scored 5-25 so it’s not hard to score 10. And you don’t have to actually have fatigue to not do much.
Leonard Jason found that 92% of people with Major Depressive Disorder satisfied one of these criteria.

And it goes on like this. Technically they try to claim that they are still using the Fukuda definition. It’s a joke really.

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cort October 21, 2009 at 4:32 pm

Thanks Tom. Tom has dug deep into the Empirical definition – thanks for sharing your insights. Thank goodness the research community appears to have rejected the ED.

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kim October 22, 2009 at 4:01 am

I’m frustrated reading Matt’s multiple, cynical comments. Matt, you need to get your head around the science here, not just speculation. A retrovirus is a much more serious matter than a vaguely ‘weakened’ immune system or natural killer cell function. A retrovirus can wreck immense havoc – resulting in weakened immunity or malfunctioning natural killer cells and many other consequences, including cancer. A retrovirus is *not* like a flu virus or EBV or other hum-drum pathogen. A retrovirus is scary, actually.
I realise that you’re afraid to get your hopes up that this new research does finally reveal the underlying cause of our illness (after so many false starts in the past), and so you are trashing it loudly to cover your fear. But you’re wrong. Please direct your energies to learning more of the science of human retroviruses (there are only 3 others). If you’re not scared enough by that material, check out the many animal retroviruses, and the ugly, aggressive forms of cancer and other havoc each of them causes in their animal hosts. Nothing to scoff at there.

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Tom Kindlon October 22, 2009 at 12:50 pm

Thanks Cort.

The research community may have rejected it but as you know the CDC continue to use it.

And they’re a very influential body.

Without knowledge of the problems with the definition, there studies can look like very well designed studies. For example, on childhood trauma random-number studies would sound better than just looking at who attend clinics. They’ve done two now on that issue that look convincing. Except for the fact that most people don’t really have proper “CFS”.

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