Relatively uninteresting CDC rundown on XMRV

Esther12

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I just had this page pop up http://www.facebook.com/CFIDSAssn/posts/321539687107 with the following content:


DHQP AtoZ Listing including XMRV: http://www.cdc.gov/ncidod/dhqp/a_z.html

XMRV Overview/Main Content Page: http://www.cdc.gov/ncidod/dhqp/bp_xmrv.html

XMRV Q&As: http://www.cdc.gov/ncidod/dhqp/bp_xmrv_qa.html

My heart jumped, thinking it was news of replication studies, but I didn't find anything significant after a quick look (hence my understated thread title). What they're saying might be of interest though, and I've not seen them linked to from here before.

edit: Just read more. It's all still vague 'ongoing studies...' etc, but reading between the lines, it doesn't sound like they're too worried at this point. They could be trying to avoid public panic, or it could be that their work isn't supporting the WPI's.
 
K

_Kim_

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Esther, you get my vote for the best thread title of the week!!! And you have some stiff competition - potatoes, miracles,George/Gerwyn tag team, and Jason rocks!!

You win!!! Hands down.
 

julius

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Good title. But It is actually one of the most interesting things to happen yet!!

"XMRV is a newly identified human retrovirus..." This is official acknowledgement by the CDC that it is a human retrovirus!! No going back now!!

WOW!!

And then they go on to mention the work supporting this finding, and none of the hack jobs denying it!!

OMFG!!

(yes, 12 exclamation points....I'm that excited!!)
(ok...14 now)
 

Esther12

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Good title. But It is actually one of the most interesting things to happen yet!!
Probably a sign of how desperate for news we are!

I wanted to make sure people didn't open the thread thinking it would have info on the CDC replication attempts, which is what I really want to know about. Hopefully they're working with the WPI to do as thorough a job as is possible, so maybe we'll have more of a wait.
 

gracenote

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I was going to post this last night, but lost steam. I was snooping around the CDC site. Notice that there is NO MENTION of any of the more recent studies. Notice, too, the date the site was last modified.

Great thread title, Esther.

Here is the text. You don't need to go to Face Book first.

DEPARTMENT OF HEALTH AND HUMAN SERVICES
CENTERS FOR DISEASE CONTROL AND PREVENTION

http://www.cdc.gov/ncidod/dhqp/bp_xmrv.html

Xenotropic Murine Leukemia Virus-related Virus (XMRV)
XMRV is a newly identified human retrovirus that is similar to a mouse retrovirus that scientists have known about for years. XMRV refers to xenotropic murine leukemia virus-related virus. It was first identified in samples of human prostate cancer tissue.

In a study published in October 2009, scientists reported a potential association of XMRV with chronic fatigue syndrome (CFS). In this study, XMRV was detected in approximately two-thirds of patients diagnosed with CFS and 3.7 percent of controls.

The frequency of XMRV infection in healthy persons and the potential role of this virus in causing diseases such as prostate cancer and CFS are unknown at this time. If it is determined that XMRV may have a role in causing disease and illness, prevention recommendations can be made.

The report of the October 2009 published study also identified DNA of XMRV in the blood cells of some healthy persons, and suggests a potential for XMRV transmission by transfusion or transplantation. At present, although it is theoretically plausible that XMRV can be transmitted through blood transfusion, no such transmission event has been identified, and there is no known evidence of XMRV infection or XMRV-related illness in transfusion recipients.

These recent findings and a potential link with prostate cancer and CFS must be scientifically and independently evaluated. Several studies are underway to evaluate the risk of XMRV transmission through blood transfusion. Agencies within the Department of Health and Human Services (HHS) are conducting studies to determine the prevalence of XMRV in the blood donor population. HHS scientists are also working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion. If a link between XMRV and transfusion is established, action will be taken to reduce the risk.

Additionally, a Public Health Service (PHS) working group plans to coordinate testing of specimens to assess transfusion-transmissibility of XMRV. If an agent is found to be transmissible by blood, studies must begin quickly to evaluate if the agent causes disease in transfusion recipients.

HHS agencies, including CDC, will continue to keep the public updated and informed as more information becomes accessible from each of the studies being conducted.

Date last modified: February 18, 2010
Content source: Division of Healthcare Quality Promotion (DHQP)
National Center for Preparedness, Detection, and Control of Infectious Diseases (NCPDCID)
 

gracenote

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Here is the Q and A section.

http://www.cdc.gov/ncidod/dhqp/bp_xmrv_qa.html

What is XMRV?
XMRV is a newly identified human retrovirus that is similar to a mouse retrovirus that scientists have known about for years. XMRV refers to xenotropic murine leukemia virus-related virus. It was first identified in samples of human prostate cancer tissue. Some additional studies have suggested that a high percentage of persons with chronic fatigue syndrome (CFS) may be infected with XMRV, but this result needs to be confirmed by other groups of scientists.

The frequency of XMRV infection in healthy persons and the potential role of this virus in causing diseases such as prostate cancer and CFS are unknown at this time. If it is determined that XMRV may have a role in causing disease and illness, prevention recommendations can be made.

How is XMRV transmitted? Are certain individuals more likely to be infected with the XMRV virus?
The manner in which XMRV is transmitted is unknown. It is unclear whether certain individuals are more likely to be infected with XMRV. Studies of XMRV have been under way for only a short time, and therefore these and similar questions have not been answered.

If researchers find that XMRV is found in a majority of patients who have chronic fatigue syndrome, does this mean that CFS may be contagious?
One study that has been conducted on CFS and close contacts suggests that there is no evidence that CFS is contagious or spread person to person. Occurrence of CFS is not more common in family members of patients with CFS, and none of the features typical of contagious disease have been associated with CFS. These features include seasonal or regional occurrence, travel history, occupation, exposure to animals, injection drug use, and sexual behavior.

Since the recent study reported finding XMRV in healthy persons, can XMRV be transmitted through blood transfusion or organ/tissue transplantation?
This possibility will be studied carefully. At present, we do not know whether XMRV can be transmitted through blood transfusion. Since XMRV is thought to infect many types of human cells, including some blood cell types, the safety of blood could be a concern if XMRV infection is confirmed to cause human disease.

What is being done to evaluate the risk of transmission of XMRV through blood transfusion or organ transplantation?
Several studies are under way to evaluate the risk of XMRV transmission through blood transfusion. The Department of Health and Human Services (HHS) is conducting studies to determine the prevalence of XMRV in the blood donor population. In addition, HHS scientists are working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion. If a link between XMRV and transfusion is established, action will be taken to reduce the risk.

Additionally, a Public Health Service (PHS) working group plans to coordinate testing of specimens to assess transfusion-transmissibility of XMRV. If an agent is found to be transmissible by blood, studies must begin quickly to evaluate if the agent causes disease in transfusion recipients.

Who has collections of blood samples for this research?
The National Institutes of Health (NIH) currently funds the Retrovirus Epidemiology Donor Study-II (REDS-II) which focuses on addressing critical questions in blood safety. The REDS-II laboratory sample collection, called RADAR, has specimens from blood donors and matched recipients from various regions of the country. These matched specimens can be useful in testing for the transmissibility of "new" or "emerging" infectious agents, such as XMRV.

If researchers have a test for XMRV, why cant it be used for diagnosis and screening of blood donors?
At present, although it is theoretically plausible that XMRV can be transmitted through blood transfusion, no such transmission has been identified, and there is no known evidence of XMRV infection or XMRV-related illness in transfusion recipients. Therefore, there is currently no requirement for testing of the blood supply for the presence of XMRV.

HHS scientists are working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion. If a link between XMRV and transfusion is established, action will be taken to reduce the risk. Such a risk, if it exists, could be decreased by developing and using blood donor screening assays or other measures. The use of a donor screening assay by blood establishments would require U.S. Food and Drug Administration (FDA) approval of the test.

There are many steps between what is currently known about XMRV and the release of an FDA-approved test, if such a test were warranted. The test components and procedures must be standardized, and the test performance assessed in research studies before licensure (approval) by the FDA. However, if the risk is demonstrated, these steps could be taken more quickly, as occurred for screening approval of West Nile virus.

Is it possible to determine whether XMRV can be transmitted via blood transfusion, without waiting for it to occur in a patient?
Yes. There are several steps necessary to evaluate if a new infectious agent presents a threat to transfusion recipients. HHS scientists are taking these steps by working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion.

The first step is to determine whether the agent is present in the blood supply by looking at the fraction of blood donors who have the infectious agent in their blood. Next, it is also important to determine the risks of the blood components themselves to spread infection, since preparation and storage may impact these risks (e.g., filtering out white blood cells or refrigerating a blood unit may decrease the risk of an infectious agent).

If the agent is found to be in the blood supply, the second step is to evaluate whether it is transmitted by transfusion. To do this, investigators can use animal studies, case report investigations, and the evaluation of biological specimens that have been collected and stored in repositories for this purpose.

Should an individual with diagnosed chronic fatigue syndrome donate blood?
At the present time, there are no specific recommendations to defer donors who have chronic fatigue syndrome. However, FDA regulations require that a donor should be in good health. Medical Directors at blood collection centers should exercise judgment in determining whether individuals with a history of CFS are in good health at the time of donation.

Should an individual who has been diagnosed, treated and currently in remission from prostate cancer donate blood?
There is no known association of prostate cancer with history of transfusion. In general, FDA has not recommended deferral of donors who have a history of cancer due to lack of such as association.

Should an individual with diagnosed chronic fatigue syndrome or in remission from prostate cancer be an organ or tissue donor?
At the present time, there are no recommendations to defer organ and tissue donations from individuals diagnosed with chronic fatigue syndrome or who are in remission from prostate cancer.
Top of page

Date last modified: February 18, 2010
Content source: 
Division of Healthcare Quality Promotion (DHQP)
National Center for Preparedness, Detection, and Control of Infectious Diseases (NCPDCID)
 

julius

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Probably a sign of how desperate for news we are!

I wanted to make sure people didn't open the thread thinking it would have info on the CDC replication attempts, which is what I really want to know about. Hopefully they're working with the WPI to do as thorough a job as is possible, so maybe we'll have more of a wait.
I am definitely reading between the lines here, but the whole thing suggests to me that the work going on in the US (much of which I assume they are privy to) is looking positive. Some quasi-speculative points like this one "If it is determined that XMRV may have a role in causing disease and illness, prevention recommendations can be made..." seem to point in a positive direction.
They are not saying "It is unlikely that (X,Y,Z)..."
 

Esther12

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I am definitely reading between the lines here, but the whole thing suggests to me that the work going on in the US (much of which I assume they are privy to) is looking positive. Some quasi-speculative points like this one "If it is determined that XMRV may have a role in causing disease and illness, prevention recommendations can be made..." seem to point in a positive direction.
They are not saying "It is unlikely that (X,Y,Z)..."
Could be. But considering the risks (and the danger of being sued) I'd be surprised if they would be so unconcerned about blood and organ donation from those with CFS if their preliminary results were showing a correlation between CFS and XMRV anything like as strong as the one the WPI had reported. Wait and see I guess. With the prostate cancer link being difficult to tie down too, it could be a long while before we really get a good idea.
 

omerbasket

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CDC announcment on their site

Found this in another forum:
http://www.cdc.gov/ncidod/dhqp/bp_xmrv.html

If I'm not mistaken - that's the first official thing coming out of the CDC regardin XMRV and prostate cancer or ME/CFS.

That's what's written there:
Xenotropic Murine Leukemia Virus-related Virus (XMRV)
XMRV is a newly identified human retrovirus that is similar to a mouse retrovirus that scientists have known about for years. XMRV refers to xenotropic murine leukemia virus-related virus. It was first identified in samples of human prostate cancer tissue.

In a study published in October 2009, scientists reported a potential association of XMRV with chronic fatigue syndrome (CFS). In this study, XMRV was detected in approximately two-thirds of patients diagnosed with CFS and 3.7 percent of controls.

The frequency of XMRV infection in healthy persons and the potential role of this virus in causing diseases such as prostate cancer and CFS are unknown at this time. If it is determined that XMRV may have a role in causing disease and illness, prevention recommendations can be made.

The report of the October 2009 published study also identified DNA of XMRV in the blood cells of some healthy persons, and suggests a potential for XMRV transmission by transfusion or transplantation. At present, although it is theoretically plausible that XMRV can be transmitted through blood transfusion, no such transmission event has been identified, and there is no known evidence of XMRV infection or XMRV-related illness in transfusion recipients.

These recent findings and a potential link with prostate cancer and CFS must be scientifically and independently evaluated. Several studies are underway to evaluate the risk of XMRV transmission through blood transfusion. Agencies within the Department of Health and Human Services (HHS) are conducting studies to determine the prevalence of XMRV in the blood donor population. HHS scientists are also working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion. If a link between XMRV and transfusion is established, action will be taken to reduce the risk.

Additionally, a Public Health Service (PHS) working group plans to coordinate testing of specimens to assess transfusion-transmissibility of XMRV. If an agent is found to be transmissible by blood, studies must begin quickly to evaluate if the agent causes disease in transfusion recipients.

HHS agencies, including CDC, will continue to keep the public updated and informed as more information becomes accessible from each of the studies being conducted.

Questions & Answers about XMRV
What is XMRV?
How is XMRV transmitted? Are certain individuals more likely to be infected with the XMRV virus?
If researchers find that XMRV is found in a majority of patients who have chronic fatigue syndrome, does this mean that CFS may be contagious?
Since the recent study reported finding XMRV in healthy persons, can it be transmitted through blood transfusion or organ/tissue transplantation?
What is being done to evaluate the risk of transmission of XMRV through blood transfusion or organ transplantation?
Who has collections of blood samples for this research?
If researchers have a test for XMRV, why cant it be used for diagnosis and screening of blood donors?
Is it possible to determine whether XMRV can be transmitted via blood transfusion, without waiting for it to occur in a patient?
Should an individual with diagnosed chronic fatigue syndrome donate blood?
Should an individual who has been diagnosed, treated and currently in remission from prostate cancer donate blood?
Should an individual with diagnosed chronic fatigue syndrome or in remission from prostate cancer be an organ or tissue donor?

What is XMRV?

XMRV is a newly identified human retrovirus that is similar to a mouse retrovirus that scientists have known about for years. XMRV refers to xenotropic murine leukemia virus-related virus. It was first identified in samples of human prostate cancer tissue. Some additional studies have suggested that a high percentage of persons with chronic fatigue syndrome (CFS) may be infected with XMRV, but this result needs to be confirmed by other groups of scientists.

The frequency of XMRV infection in healthy persons and the potential role of this virus in causing diseases such as prostate cancer and CFS are unknown at this time. If it is determined that XMRV may have a role in causing disease and illness, prevention recommendations can be made.

Top of page

How is XMRV transmitted? Are certain individuals more likely to be infected with the XMRV virus?

The manner in which XMRV is transmitted is unknown. It is unclear whether certain individuals are more likely to be infected with XMRV. Studies of XMRV have been under way for only a short time, and therefore these and similar questions have not been answered.

Top of page

If researchers find that XMRV is found in a majority of patients who have chronic fatigue syndrome, does this mean that CFS may be contagious?

One study that has been conducted on CFS and close contacts suggests that there is no evidence that CFS is contagious or spread person to person. Occurrence of CFS is not more common in family members of patients with CFS, and none of the features typical of contagious disease have been associated with CFS. These features include seasonal or regional occurrence, travel history, occupation, exposure to animals, injection drug use, and sexual behavior.

Top of page

Since the recent study reported finding XMRV in healthy persons, can XMRV be transmitted through blood transfusion or organ/tissue transplantation?

This possibility will be studied carefully. At present, we do not know whether XMRV can be transmitted through blood transfusion. Since XMRV is thought to infect many types of human cells, including some blood cell types, the safety of blood could be a concern if XMRV infection is confirmed to cause human disease.

Top of page

What is being done to evaluate the risk of transmission of XMRV through blood transfusion or organ transplantation?

Several studies are under way to evaluate the risk of XMRV transmission through blood transfusion. The Department of Health and Human Services (HHS) is conducting studies to determine the prevalence of XMRV in the blood donor population. In addition, HHS scientists are working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion. If a link between XMRV and transfusion is established, action will be taken to reduce the risk.

Additionally, a Public Health Service (PHS) working group plans to coordinate testing of specimens to assess transfusion-transmissibility of XMRV. If an agent is found to be transmissible by blood, studies must begin quickly to evaluate if the agent causes disease in transfusion recipients.

Top of page

Who has collections of blood samples for this research?

The National Institutes of Health (NIH) currently funds the Retrovirus Epidemiology Donor Study-II (REDS-II) which focuses on addressing critical questions in blood safety. The REDS-II laboratory sample collection, called RADAR, has specimens from blood donors and matched recipients from various regions of the country. These matched specimens can be useful in testing for the transmissibility of "new" or "emerging" infectious agents, such as XMRV.

Top of page

If researchers have a test for XMRV, why cant it be used for diagnosis and screening of blood donors?

At present, although it is theoretically plausible that XMRV can be transmitted through blood transfusion, no such transmission has been identified, and there is no known evidence of XMRV infection or XMRV-related illness in transfusion recipients. Therefore, there is currently no requirement for testing of the blood supply for the presence of XMRV.

HHS scientists are working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion. If a link between XMRV and transfusion is established, action will be taken to reduce the risk. Such a risk, if it exists, could be decreased by developing and using blood donor screening assays or other measures. The use of a donor screening assay by blood establishments would require U.S. Food and Drug Administration (FDA) approval of the test.

There are many steps between what is currently known about XMRV and the release of an FDA-approved test, if such a test were warranted. The test components and procedures must be standardized, and the test performance assessed in research studies before licensure (approval) by the FDA. However, if the risk is demonstrated, these steps could be taken more quickly, as occurred for screening approval of West Nile virus.

Top of page

Is it possible to determine whether XMRV can be transmitted via blood transfusion, without waiting for it to occur in a patient?

Yes. There are several steps necessary to evaluate if a new infectious agent presents a threat to transfusion recipients. HHS scientists are taking these steps by working with scientists in industry and academia to determine if XMRV can be transmitted by blood transfusion.

The first step is to determine whether the agent is present in the blood supply by looking at the fraction of blood donors who have the infectious agent in their blood. Next, it is also important to determine the risks of the blood components themselves to spread infection, since preparation and storage may impact these risks (e.g., filtering out white blood cells or refrigerating a blood unit may decrease the risk of an infectious agent).

If the agent is found to be in the blood supply, the second step is to evaluate whether it is transmitted by transfusion. To do this, investigators can use animal studies, case report investigations, and the evaluation of biological specimens that have been collected and stored in repositories for this purpose.

Top of page

Should an individual with diagnosed chronic fatigue syndrome donate blood?

At the present time, there are no specific recommendations to defer donors who have chronic fatigue syndrome. However, FDA regulations require that a donor should be in good health. Medical Directors at blood collection centers should exercise judgment in determining whether individuals with a history of CFS are in good health at the time of donation.

Top of page

Should an individual who has been diagnosed, treated and currently in remission from prostate cancer donate blood?

There is no known association of prostate cancer with history of transfusion. In general, FDA has not recommended deferral of donors who have a history of cancer due to lack of such as association.

Top of page

Should an individual with diagnosed chronic fatigue syndrome or in remission from prostate cancer be an organ or tissue donor?

At the present time, there are no recommendations to defer organ and tissue donations from individuals diagnosed with chronic fatigue syndrome or who are in remission from prostate cancer.
 

CBS

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This is a significant shift and I can't help but think that the CDC is finding XMRV in numbers that are hard to ignore. I had been keeping an eye on the CDC site for acknowledgment of XMRV and for months - NOTHING. Now this. Wouldn't find it the least bit surprising if this was the last straw for Bill Reeves.

Gracenote, That date really does stand out - February 18th! After both UK studies. May be marking it in my calendar as a yearly reminder. This is sort of shaping up as a US v. UK/EU thing (nothing against all of you in the UK - I'm sure that above all you want good science, but we all could use a good explanation or two).
 

CBS

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XMRV on CDC CFS site

And FINALLY, a link on the CDC's CFS site to this XMRV info (http://www.cdc.gov/cfs/ - see top of "News and Highlights" right hand column). Looking at all the other CDC CFS info, it does not appear that anything has changed ('Possible Causes,' etc.).
 

Kati

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Gracenote, That date really does stand out - November 18th! After both UK studies. May be marking it in my calendar as a yearly reminder. This is sort of shaping up as a US v. UK/EU thing (nothing against all of you in the UK - I'm sure that above all you want good science, but we all could use a good explanation or two).
Shane you meant February 18th right?????
 

gracenote

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The date also stands out as it is the first week with Reeves no longer associated with CFS.
I just happened to stumble on it when checking out the CDC website and assumed it had been there for awhile. Does anyone know when it was originally posted? I know the date it said it was updated, but I kind of wondered if no changes had been made to something that had been there for awhile. I'm curious. If it's new, I'm surprised that there is NO mention of the more recent UK studies, even if to make light of them.
 

CBS

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Oops!

Shane you meant February 18th right?????
Yep! February 18th! Just about the time that Reeves was trying not to let the door hit him on the way out but more importantly, after the two UK studies had been published.

My Bad. Brian who?

I'll fix the original post.

:victory::victory::victory:YAAAAYYY BRAINFOG!!!!:victory::victory::victory:
Brian who?
 
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I just happened to stumble on it when checking out the CDC website and assumed it had been there for awhile. Does anyone know when it was originally posted? I know the date it said it was updated, but I kind of wondered if no changes had been made to something that had been there for awhile. I'm curious. If it's new, I'm surprised that there is NO mention of the more recent UK studies, even if to make light of them.
It's not in the Google cache so it probably was put up on Feb 18 or perhaps sometime during the week of the 14th.
 

julius

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Yep! February 18th! Just about the time that Reeves was trying not to let the door hit him on the way out but more importantly, after the two UK studies had been published.

My Bad. Brian who?

I'll fix the original post.

Brian who?
Brain fog, not Brian. Just making a joke because I'm always forgetting what month it is and I hate it. I actually can't remember what year it is most of the time.
Hope you weren't insulted.