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Some Perspective on the XMRV Virus

There has been much buzz lately over the XMRV virus and the research on its role in CFS. Unfortunately this may actually be causing some to miss the larger picture of what is happening in CFS, with XMRV simply being one of many infections and problems in this illness.

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A very interesting article,

A very interesting article, thanks. Further to this, a London-based Professor is researching the physical elements of M.E., using MRI neurospectroscopy. His results have been published widely, and it's also more evidence of the underlying physical basis of this illness.

For further info see:

Puri, B.K., Counsell, S.J., Zaman, R., Main, J., Collins, A.J., Hajnal, J.V., and Davey, N.J. (2002). Relative increase in choline in the occipital cortex in chronic fatigue syndrome. Acta Psychiatrica Scandinavica 106: 224-226.

Puri, B.K., Holmes, J and Hamilton, G. (2004). Eicosapentaenoic acid-rich essential fatty acid supplementation in chronic fatigue syndrome associated with symptom remission and structural brain changes. International Journal of Clinical Practice 58: 297-299

The more people that can collaborate with research, the more quicker that medical knowledge can advance, bringing about effective treatments for patients.

A very interesting article,

A very interesting article, thanks. Further to this, a London-based Professor is researching the physical elements of M.E., using MRI neurospectroscopy. His results have been published widely, and it's also more evidence of the underlying physical basis of this illness.

For further info see:

Puri, B.K., Counsell, S.J., Zaman, R., Main, J., Collins, A.J., Hajnal, J.V., and Davey, N.J. (2002). Relative increase in choline in the occipital cortex in chronic fatigue syndrome. Acta Psychiatrica Scandinavica 106: 224-226.

Puri, B.K., Holmes, J and Hamilton, G. (2004). Eicosapentaenoic acid-rich essential fatty acid supplementation in chronic fatigue syndrome associated with symptom remission and structural brain changes. International Journal of Clinical Practice 58: 297-299

The more people that can collaborate with research, the more quicker that medical knowledge can advance, bringing about effective treatments for patients.

Dr. Tietelbaum, if you

Dr. Tietelbaum, if you actually want to help ME/CFS patients, learn the facts about this illness and stop selling products to patients that don't work. While your approach may work for patients who have idiopathic fatigue and not ME/CFS, patients have been disgusted by your inability to distinguish between the two for years. Also, if you truly believe XMRV is "just another virus," you obviously know nothing about retroviruses and how they work. HIV -- one of the other retroviruses -- is not "just another virus" and is well-known to allow the resurgence of herpesviruses and other pathogens in AIDS patients that are also common in ME/CFS patients. Human retroviruses are uncommon, and a finding of retrovirus antibodies in 95 percent of an illness population is extremely significant. I'm sure you're in a panic right now about losing your empire of overpriced nutritional products since you've made a killing off of this illness population, but I'm sure you'll find a way to reinvent yourself -- just claim you cured yourself of some other maligned illness. Or come clean and realize you never fully understand the patients who are at the worst stages of ME/CFS, even dying from it, and embrace the real science that is validating their experience now.

Annonymous, you could not be

Annonymous, you could not be more correct about Dr. Teitelbaum and his products and the fact that they are cost prohibitive which is why so many of his clinics have closed. I don't know where he comes up with this 91% "cure rate" that he has because all I ever saw were failure after failures.

Dr Teitelbaum, I'd like for

Dr Teitelbaum, I'd like for you to express a quantitative opinion about the likelihood that XMRV is causal, if you really want to match wits with those trained in scientific epistemology. What I mean is that you should state the degree of confidence which expresses the odds you would accept for a bet. I'll state right now my 80% confidence that XMRV is causal. That is, I would bet on it at 4:1, thus standing to lose $400, for example, if I stood to gain only $100 by being right. And anyone is welcome to hold me to that and quote it to my face once a week as long as I live, whereas there is not much to hold you to in this article. I suspect it would be embarrassing for you to state less than 50% confidence, since you are well aware that no "innocent bystander" infectious agent has ever been found in 98% of patients of a particular disease, and in under 10% of normals - not even close! Since you are medically educated, you are well aware of the vast, vast difference between this situation on the one hand, and on the other hand the commonplace occurrence in which the prevalence of a virus is rather elevated in some disease -- but without approaching 100%, or eclipsing by over tenfold the rate in healthy normals. (*)

Indeed, if you stated XMRV causality to be under 50% likely, I don't think either of us would be surprised if some National Academy members were to feel amused.

Just face it plainly, sir: you haven't done anything that actually proves CFS is etiologically heterogenous, and neither has anyone come particularly close to doing that. The cold facts really should not be unfavorable to you. XMRV either is the single cause, or it isn't. If it is, and it can be treated, of course your protocol will go by the wayside and be completely forgotten. If not, your work may remain useful into the future. Already you have very probably done quite significant good in the past with your intelligent protocol, when there was not too much else for patients to turn to (though I am less inclined to take seriously the trials you published over the years, after seeing this article). You have also puzzled over possible causes of the disease, both piecemeal one and monolithic ones. You tried. Though only one person or a very few can finally close the book, it takes thousands of scholars to find one monolithic cause if there is one, and much luck is involved. With more luck you could have found it instead of Mikovits. Therefore honor belongs to everyone who took a good shot at finding the cause, all of whom were needed to create decent odds of finding it. To preserve that honor, what you ought to do is retract this unscientific article.

I repeat, either it isn't causal or it is. Science means wanting to find out.

* The prevalence of XMRV in normals is not known yet; Mikovits et al. found 3.7% of controls PCR positive, but only 67% of CFS patients were PCR positive. Almost all other patients were positive by at least one of three other assays that have not yet been tried on normals.

XMRV

Dear Dr. Teitelbaum,

I have to say that I was pretty dismayed to read the following in your article: "...with XMRV simply being one of many infections and problems in this illness."

What??? You call a rare RETROVIRUS similar to HIV as been "simply" one of many infections...? I could hardly believe I read this or that you wrote it. I myself think there is a good chance "core CFS" will be discovered to be at least XMRV associated.

Many have been dismayed in the past by your failure to differentiate between "chronic fatigue" and ME/CFS. This article will probably only reinforce this dismay.

I have always appreciated your involvement in ME/CFS, and have benefitted from reading your book and becoming aware of your SHINE protocol. But I do soooo wish you would take to heart how you often fail to emphasize how ME/CFS is NOT just another chronic fatigue state.

And I wish you would consider emphasizing that XMRV is NOT just another infection.

Sincerely, Wayne

I agree Wayne

No matter what the new research, Teitelbaum will push his SHINE program regardless. How much money has this cat made off of these desperate people. If they find that anti-retroviral medication works, you know Teitelbaum will still be pushing some herbs claiming that medications have side effects. I wonder how many HIV patients take herbs and do not develop full blown aids and die. I would guess none. No they take medication and get on with their lives.

XMRV

Dear Dr. T

I want to thank you for the efforts you have put into treating people with CFS and related disorders. I read your book and found it to be excellent.
I must disagree with the logic of your comments in psychology today. As other posters have noted a retrovirus is considerably different from common virus's like EBV and CMV which most of the population have in there bodies. A retrovirus acts differently and this one appears to be way more common in people with verified cfs. As there are only 3 known types of human retrovirus ,this being the third I would think you would give it much more weight than you have. I believe an objective person would have to at least consider the possibility that XMRV is causal in CFS patients.
HIV patients have many reactivated viruses and infections but the HIV retrovirus is THE reason. Could it not be that XMRV is THE reason so many CFS patients have so many active or reactive infestion? You have all of a sudden closed your mind to the possiblities at hand. I know it's hard to let go of preconcieved notions but it may be time to let go of some of yours.

Sincerely
Keith

Twice you refer to your "30

Twice you refer to your "30 years experience", as if appeals to authority can replace evidence. Stop philosophizing and get to the bench. Collect world class data, pass peer review and air your supposedly superior insights in Science. It is unconscionable that your focus is not on exhorting dramatically expanded NIH funding of XMRV research.

Xmrv

Dr. T, you rather shamelessly used the current excitement over xmrv in scientific and lay circles as a news hook to promote your own protocol. Sheesh. Meanwhile how did you get the 91% figure? More shameless promotion; you probably rounded up from 90% so it would sound authentic and who knows what your criteria are.

It's interesting watching the

It's interesting watching the reactions to the XMRV news--everyone dismissing the findings seems to have something to sell. Portraying XMRV as just another virus is either ignorant or shameless. I've long been concerned that Dr. Teitelbaum cares more about profits than patients--no true CFS doctor would ever plaster the internet with "tired of being tired" ads because of the great harm done by the perception that CFS is mere tiredness. But to dismiss this contagious, cancer-causing retrovirus as incidental in order to promote one's own products is a violation of medical ethics.

Sir, You wrote "But we choose

Sir,

You wrote
"But we choose to not be distracted to reduce our focus to only a single infection type..."

This statement, it seems, will be shown to be tantamount to telling an AIDS patient not to be distracted by HIV.

You write as though you are blithely unaware of the difference between a common human herpes virus and the implications of infection with a rare retrovirus.

Trivializing these findings protects no-one's interests but your own.

Shame on you.

Catching some flack?

Hi Dr. T,
I read your book early in my CFS case and the book played an important role in validating my CFS, helping me realize that I was not alone. Thank-you for that. But having tried many of the suggested interventions in the book I get the sense, along with others here, that there is much more to the story than a simple HPA melt-down. I am glad you have so many people improving on SHINE, I also improved a little on some of your recommendations, but am still totally disabled. And that is the point. I think you are catching so much flack here because you missed the obvious with XMRV, as have many others commenting here. The issue is not that it is 'just another virus,' and not that it is a retrovirus, as that proves nothing. The issue is that XMRV's role in CFS still remains to be proven. We only have one study, even if it appears in Science it is only one scientific study, not yet replicated even one time, and so it is a weak finding at this time. There are many harmless retroviruses, and the people here who are reacting to the fact that XMRV is a retrovirus should do more homework before getting so wound up. But also I think you need to be more realistic about the seriousness of CFS and the fact that no protocol out there is returning large numbers of people with long-term or seriously disabling CFS to full health right now.
--Kurt

Kurt, while there are many

Kurt, while there are many retroviruses, there are only 3 known HUMAN retroviruses in existence. And none of them are harmless. 2 of them are known killers. And the first known recorded death of ME/CFS occurred in Great Britain in April of this year. So, yeah, this may be only one study. But it's a BIG FLIPPING DEAL when 90% of the CFS subjects test positive for third retrovirus. I think people are wound up for good reason. And apparently the vast majority of the scientific community agrees.

Disappointment

You know, I kind of enjoyed your latest book, Dr T. It had some interesting information and was well-organized. And I had to give you the benefit of the doubt when you appeared on the unfortunate recent Dr OZ show.

But I must say, I am very disappointed in what you have written. Do you feel desperate? Are you afraid you will be discredited? I think you need not worry. There are all kinds of fatiguing illness out there, and you can continue to treat them to your heart's content.

But do not make the mistake of trivializing ME/CFS and those moderately and severely affected for whom no amount of "SHINE" will help.

You will always have a market, never fear. So I urge you to honor the science that is now taking place regarding XMRV, with or without you.

I remember the early days of another retrovirus

Dr. T.

I am not sure how old you are, or where you are from, but I wonder where you were in the early 80's when people started dying of AIDS. I was in San Francisco, so I remember it well.
Until antiretrovirals put a stop to that wretched epidemic, there were so many people offering cures, and treatments, and so many people suffering and dying.
Don't hang back and let your name be counted as someone who clung to the delusion that his treatments were more effective than they really are.

Warning: Harmful to people with ME/CFS

Psychology Today. What are you thinking? How can you publish an article that is full of errors, opinion presented as fact, and a sales-spiel? Shouldn’t this have a caption saying “advertisement”?
I
Dr Teitelbaum continually refers to XMRV as a virus, which is incorrect:

a)”In a recent newsletter I discussed the XMRV virus”

b)” We have been treating viral infections (and many other infections) as one of the cornerstones of resolving CFS for decades. The recently reported research on the XMRV virus, while a useful new finding that will help in our efforts to find effective CFS treatments, is in essence but one more documented infection.”

XMRV is only the 3rd human retrovirus known. It is similar to HIV, which is associated with AIDS and HTLV-1, which is associated with a rare form of blood dsycrasia known as Adult T-cell Leukemia/lymphoma. These are on a quite different level of significance from your run-of-the-mill viruses that Teitelbaum directs the supplements and protocol; he sells at.

Sweeping generalizations of opinion are presented as fact:

c)” the larger picture of what is happening in CFS, with XMRV simply being one of many infections and problems in this illness”

d) “Remember that the “I” in SHINE stands for Infections —with multiple treatments that help treat viral infections (such as XMRV) included”

There is NO scientific basis for these opinions. XMRV is a retrovirus that was only discovered this year. The treatments for it are as of yet unknown.

Dr Teitelbaum tries to sell his product throughout, including links
e) there are 5 references to his SHINE protocol and one to his treatment center, with links provided.

Dr Teitelbaum claims success in treating CFS without substantiating the claim::
f) Our research shows that 91% of patients treated with the SHINE protocol improve, and many get well.

g) “With effective treatment already available”

h) But we choose to not be distracted to reduce our focus to only a single infection type, when there are so many that we can effectively treat to help you get well now.

Only one study from 91 – 93 is presented as proof of Dr Teitelbaum’s success in treating CFS.
· It has not been presented in a respected scientific journal, nor peer-reviewed, nor the results replicated by other reputable scientists
· Only 64 patients were studied, none of whom had post-exertional malaise – one of the hallmarks of CFS
· 46 patients were suspected of having other problems such as hypothyroidism
· The wording in the study continually mixes CFS with chronic fatigue (ie daily tiredness or other illnesses)

If he indeed has had any success, one would expect published studies reputable scientific journals, peer-reviews and replication. 16 years have passed since that “study” – where are current scientifically valid studies? If there were effective treatment available, it would not be the exclusive domain of Dr Teitelbaum and 17 million or more world wide would not be suffering with this disease. He may have success with getting rid of tiredness, but has not demonstrated anything to do with CFS.

The one good paragraph in the whole article is

The XMRV research also offers other benefits, such as attracting media attention, and helps make it even clearer how real and devastating CFS is. This may offer a bit more to silence the nitwits who like to claim CFS is all in your mind (though I would not count on it, as they have ignored reams of earlier research showing CFS/FMS to be very real illnesses). My concern is that this not blind us to the rest of the research in the field, which would cause much harm to those with the illness.

Hopefully, this additional piece of research on the biological nature of ME/CFS will be the final nail in the coffin of any unfounded views of it being a psychiatric illness.

As to concerns about the discovery of XMRV leading to other research in the field being ignored, it seems unlikely and an unwarranted concern. The WPI team has exhibited the utmost professionalism, starting with working collaboratively with the National Cancer Institute and the Cleveland Clinic, along with support from the University of Nevada. The study was published in Science, the most prestigious scientific journal, with rigorous peer-review. They are eager to find a treatment for ME/CFS and are willing to work collaboratively with all respected scientists in the field.

It’s articles like this that cause much harm to people with ME/CFS, not the discovery of XMRV and future research in the field.

Harmless retroviruses

Kurt
I'm not aware of any harmless retroviruses in humans? There is HIV, HTVL 1 and 2 and now XMRV. Never heard of any others in humans.
Keith

Actually, the media has

Actually, the media has spread misinformation. Guess it just reinforces what we should already know too well after having CFS/ME; never believe anything you read in the papers!

Wikipedia;
"These endogenous retroviruses (ERVs), contrasted with exogenous ones, now make up 5-8% of the human genome.[3] Most insertions have no known function and are often referred to as "junk DNA". However, many endogenous retroviruses play important roles in host biology, such as control of gene transcription, cell fusion during placental development in the course of the germination of an embryo, and resistance to exogenous retroviral infection. Endogenous retroviruses have also received special attention in the research of immunology-related pathologies, such as autoimmune diseases like multiple sclerosis, although endogenous retroviruses have not yet been proven to play any causal role in this class of disease. The role of endogenous retroviruses in human gene evolution is explored in a 2005 peer-reviewed article.[4]"

I think you miss the point Doctor!

Until you have actually suffered the debilitating effects of the disease yourself, you cannot possibly understand the physical, mental and emotional stress that your body goes through just to make it to another day. I have heard the words "your stressed out", "your just tired" and "maybe you should change your diet". I have tried many doctors, many treatments and nothing has helped.
This is the first time I have honestly had hope that something will change in my life due to this finding and I do not appreciate the downplay.
Please understand our dismay and anger at your article. You are effectively dashing hope for people that have very little hope to begin with.

I think you miss the point Doctor!

Until you have actually suffered the debilitating effects of the disease yourself, you cannot possibly understand the physical, mental and emotional stress that your body goes through just to make it to another day. I have heard the words "your stressed out", "your just tired" and "maybe you should change your diet". I have tried many doctors, many treatments and nothing has helped.
This is the first time I have honestly had hope that something will change in my life due to this finding and I do not appreciate the downplay.
Please understand our dismay and anger at your article. You are effectively dashing hope for people that have very little hope to begin with.

Just another retrovirus---ho-hum

We all know that research moves slowly. Dr. T, I also worked for years in a private psychiatry practice. There is nothing to do for true CFIDS but to do hard scientific research (and not just privately )---this has hardly been done. NEVER have I thought that research would take so long (yes, yes, I should have known and it will take even longer.) I am one who wished I had major depression as I treated patients every day with clinical depression and saw how easy it is to treat. I wished. No such luck. Screwed up immune system. At least I have excellent medical doctors who clearly know immune system abnormalities (that alarm them) when they see them. Didn't know what to make of it all, but they've always said to me, "This is bad stuff whatever it is." And so it is. If you care about CFIDS patients then push hard for top-rate scientific research to really go into warp speed on this illness now.

Would you call HIV "infection of the month" club?

If so, what would be your rationale? If you did this and did not acknowledge the severe
immune dysfunction in true CFIDS, then you would be party to slowing down medical research on the illness. I have no problem with CBT or with any kind of psychiatric/psychological treatment for anyone but with a physical illness it is "supportive therapy" not first line of defense therapy. So, as long as a practitioner admits his/her limits and what is actually known about a medical condition, along with pushing for excellent bio-medical research, then, sure, it is fine to do CBT, etc., but say very UPFRONT that this is a supportive therapy ONLY (can be helpful) but for TRUE CFIDS, what is needed is more medical research (serious careful medical research on true CFIDS cases). In the UK, CBT and "graded exercise" are considered the "primary treatment" for CFIDS. The harm this has caused is huge.

No more money to be made by You and the Shrinks?

I have to agree with many of the statements written above about you and your comments. Yes, you have helped the CFIDS community. But you have also made a large amount of money pimping your books and products. Nothing wrong with that - BUT, get the facts straight and use correct data when addressing a subject you don't really know much about. Let's face it - you ain't Dan Peterson.

And for the shrinks out there you are crying that they lost a revenue stream with the findings of a virus for CFIDS, sorry, but the vast majority of the CFIDS sick KNEW they were physically ill and didn't play games with you people to start with. Go to a shrink for a very real physical illenss? WHY? That NEVER made sense to any of us CFIDS sick - that and the over 6,000 studies written by experts worldwide and now this virus.
CFIDS people just aren't very fond of shrinks. We also don't like William Reeves and the moronic Emory MIND-BODY PROGRAM. What a friggin waste of money putting a physical disease anywhere near the psychiatric arena.

Sorry Dr. T, but do what really is right for the sick even if it cuts into your income. Remember that oath you took? We won't bother to remind the shrinks about that oath since they are all nuts anyway.

does SHINE treat AIDS too?

Dr. Teitelbaum, there is no evidence whatsoever that your SHINE protocol is effective against diseases caused by infectious retroviruses. You are clearly treating "fatigue" and not "Chronic Fatigue Syndrome". Once causality between XMRV and CFS is confirmed then you will be forced to admit that your protocol is useless for CFS. Shame on you for trivializing the role of XMRV, for continuing to claim that your CFS treatment is valid despite the stellar XMRV research, and for profiting all of these years from desperate CFS patients. You are definitely not on the side of people with CFS.

Disappointed Again

Dr. T,

I bought your book, From Fatigued to Fantastic, when I first became ill with ME/CFS following mononucleosis. While following your protocol, I went from partially functional to fully bedbound. So I am not part of your 91% success rate.

As with others, I am very dismayed at your commentary that XMRV is just another virus. XMRV is a retrovirus. It becomes embeded in the host's DNA. There are only 2 other human retroviruses: HIV and HTLV. HIV leads to AIDS. HTLV often leads to cancer. These are not your "average" viruses.

Has causation been proved yet? No. However, the findings are quite shocking: up to 98% positive in CFS; only 4% of controls. That's pretty hard to ignore or dismiss.

If you want to treat fatigued patients, then all the power to you. But if you truly want ot treat ME/CFS patients (who are tired of being sick, not tired of being tired), then please stop making such light of our illness.

Thanks.

Fatigued to Fantastic Fraud

Dr. T,

I bought your book and faithfully went monthly to Fibromyalgia and Fatigue Center for 10 months. Probably 20 supplements, 20 IV's, and 10 doctors appointments later I am worse now than I was before I started..I can now barely work. I think you treat fatigued patients and not Fibro/CFS. I'm done with your protocol.

Shrinks, Lies & CFS

Ill for 13 years. Housebound. On higher rate disability (DLA) and Incapacity. Never had any treatment. For two reasons, 1)The NHS doesn't offer any, because...there aren't any...because, no one (up until now has been close to understanding the disease and at best you can only try and treat the symptoms, which is why there are so many frauds out there) and 2)Because despite everything, the pain, the loss of ...almost everything in my life, I have always had the good sense to understand that if 1)is correct - our health service does not offer any treatment, then logically, surely it must be true that THERE IS NO TREATMENT.
Those of us with high viral loads of XMRV, can at best hope for say a 10 -50% improvement with anti-virals. I made the percentage range up. I based it upon twenty years experience backing horses. It's intuititive.
My intuition also tells me Teitelbaum may have give up some of his Real Estate, as you Americans call it.
Good luck to Mikovits et al. Hope they get every award going. Hope someone buys them a big yacht, a crate of champagne and few Havana cigars to go with it. And they could sail over to the UK and we'll ask the PM to ask the Queen to knight them all and ask the Pope the make them saints and then hopefully I can get back to enjoying what little life I have left

Did the Shien Protocal

Dr T.
I've had CFS for 22 years following a documented EBV infection. I followed the Shine protocal for 6 months. I was not helped at all. I would love to see you send your treatment data to science and try to get it published. Of course you won't because it won't stand up to the peer review process and then you can't make your outlandish 91% success rat claims anymore.

Imperial College - Myra McClure Lies by Implication

I read an article and a comment on this debate this morning that pretty well confirm to me that the Imperial College cannot be trusted to give accurate testimony about their results and have already knowingly lied in their presentations to the press.

Doubt cast on new fatigue theory
http://www.google.com/hostednews/ukpress/article/ALeqM5inrHHwpLhcsS5o12h...

Professor Myra McClure, from Imperial College London, ".... If it had been there, we would have found it. The lab in which we carried out the analysis had never housed any of the murine (mouse/rat) leukaemia viruses related to XMRV, and we took great care to ensure there was no contamination. We are confident that our results show there is no link between XMRV and Chronic Fatigue Syndrome, at least in the UK."
"
McClure implies in her statement that the positive test results in the US were due to contamination. There are several facts she must have been aware of when making her statement that stongly suggest this to be untrue.
The first is that there were 2 groups in the WPI study. The first group of 100 CFS patients had a XMRV +ve by PCR rate of 67% . The second group of 208 healthy controls had a XMRV positive rate of 3.7 %.
Had the WPI results been positive because of Laboratory contamination there would have been even numbers in both groups but indeed the differences in the 2 groups were marked.
Any scientist or technician would know this. That means Myra McClure is telling a deliberate lie by implication and that puts the intent and results of the Imperial College study itself into question. She is using false implication to bolster acceptance of her results by people who dont have a scientific backgound.

The results are the strongest ever reported linking a virus to a specific illness.

The WPI samples were also tested in 3 laboratories, including that of Dr Silverman who co -discovered this virus 3 years ago in research unrelated to CFS. So the imperial College are saying they are sure the discoverers of the virus cannot test for the the virus they discovered.
Myra must have heard by this stage that WPI is testing 500 UK samples with the % ages are coming out the same as the WPI study so that blows the idea that its not in the UK.

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Jacob Teitelbaum, M.D., internist and author of From Fatigued to Fantastic!, researches treatments for Chronic Fatigue Syndrome and fibromyalgia.

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