maar ik zal het el lezen als er iets belangrijks ontdekt is!
groetjes
Belangrijke dag: presentatie resultaten blood working group
Moderator: Moderators
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Gast
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magnetronnie
- Gevorderd lid
- Berichten: 536
- Lid geworden op: 27 nov 2010, 10:15
http://twitter.com/shhh530
Deze persoon is aanwezig en zal tweeten.
En hier nog een kort berichtje:
http://cfsuntied.com/blog2/2010/12/14/x ... able-risk/
Als ik het goed begrijp komt er dus geen screening van donorbloed op XMRV, omdat er nog niet voldoende bewijs is dat het virus een ziekte veroorzaakt?
Deze persoon is aanwezig en zal tweeten.
En hier nog een kort berichtje:
http://cfsuntied.com/blog2/2010/12/14/x ... able-risk/
Als ik het goed begrijp komt er dus geen screening van donorbloed op XMRV, omdat er nog niet voldoende bewijs is dat het virus een ziekte veroorzaakt?
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verlorengezondheidman
- Gevorderd lid
- Berichten: 6231
- Lid geworden op: 02 aug 2008, 17:24
@magnetronnie,
Laat me raden: "het is wetenschappelijk niet bewezen"
](./images/smilies/eusa_wall.gif "Brick wall")
Laat me raden: "het is wetenschappelijk niet bewezen"
Een zoönose is een infectieziekte die kan worden overgedragen van dieren op mensen.
http://www.youtube.com/watch?v=wVQy9-cyL98
LyME en co's INFO-topic!
http://www.me-gids.net/index.php?name=P ... ht=#218551
http://www.youtube.com/watch?v=wVQy9-cyL98
LyME en co's INFO-topic!
http://www.me-gids.net/index.php?name=P ... ht=#218551
Ik ga ook Cort volgen en mijn Feestboekie (FB) controleren. Al die prachtige FB sites van XMRV global die geven ook veel informatie door. Ik kan het je echt aanraden! Iedereen dus Facebooken 
Liefs,
Esther
http://www.onwilliglichaam.blogspot.com
Liefs,
Esther
http://www.onwilliglichaam.blogspot.com
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magnetronnie
- Gevorderd lid
- Berichten: 536
- Lid geworden op: 27 nov 2010, 10:15
Kleine toevoeging, die persoon op Twitter doet dáár geen verslag, maar op een Engelstalig forum:
http://www.mecfsforums.com/index.php/topic,3875.60.html
Ik begrijp weinig van de vele afkortingen, maar deze lijkt me voor zich spreken:
"Our results support earlier finding of MLV-related virus gene squences in blood of many pts with CFS."
http://www.mecfsforums.com/index.php/topic,3875.60.html
Ik begrijp weinig van de vele afkortingen, maar deze lijkt me voor zich spreken:
"Our results support earlier finding of MLV-related virus gene squences in blood of many pts with CFS."
Heidi Bauer heeft getwitterd:
“The Blood Products Advisory Committee has been asked to consider the issue of donor testing for MLV-related retroviruses even in the absence of confirmed disease causation. Absent evidence that these viruses have a causal role in any human disease it seems reasonable that the following criteria be met prior to the implementation of donor screening:
“1. evidence of transfusion transmission of these viruses
“2. consistent evidence of association of these viruses with disease, and
“3. development of validated assays for these agents that detect infected individuals but do not implicate non-infected individuals.
“The presence of a virus, and even transfusion transmission of an agent, is not, in and of itself a reason to implement donor deferral or screening. Since no causal association of XMRV with human disease has been demonstrated, a decision to introduce a blood donor screening assay, were one to become available, would appear premature. Many commensal viruses, for example Anellovirus species, are known to be transmitted by transfusion but despite extensive study have not been associated with disease. In the absence of direct evidence of causation, a decision to implement testing should be based on an assessment of recipient risk that includes the prevalence of the infection in the donor population, the transmission rate to recipients and the current best assessment of the risk of recipient harm, compared to currently accepted risks of transfusion.
“Members of the blood transfusion community are concerned about the potential threat to the blood supply posed by XMRV/MLV and are actively involved in efforts to validate quality control panels and develop tests for the detection of MLV-related retroviruses. However we believe that current evidence does not support introducing any test methodology at this time.”
Ik geloof dat ik even niet goed word. Nog meer vertraging. Ze willen dus eerst causaal verband zien voordat ze het serieus gaan nemen. STRUISVOGELS
Liefs,
Esther
http://www.onwilliglichaam.blogspot.com
“The Blood Products Advisory Committee has been asked to consider the issue of donor testing for MLV-related retroviruses even in the absence of confirmed disease causation. Absent evidence that these viruses have a causal role in any human disease it seems reasonable that the following criteria be met prior to the implementation of donor screening:
“1. evidence of transfusion transmission of these viruses
“2. consistent evidence of association of these viruses with disease, and
“3. development of validated assays for these agents that detect infected individuals but do not implicate non-infected individuals.
“The presence of a virus, and even transfusion transmission of an agent, is not, in and of itself a reason to implement donor deferral or screening. Since no causal association of XMRV with human disease has been demonstrated, a decision to introduce a blood donor screening assay, were one to become available, would appear premature. Many commensal viruses, for example Anellovirus species, are known to be transmitted by transfusion but despite extensive study have not been associated with disease. In the absence of direct evidence of causation, a decision to implement testing should be based on an assessment of recipient risk that includes the prevalence of the infection in the donor population, the transmission rate to recipients and the current best assessment of the risk of recipient harm, compared to currently accepted risks of transfusion.
“Members of the blood transfusion community are concerned about the potential threat to the blood supply posed by XMRV/MLV and are actively involved in efforts to validate quality control panels and develop tests for the detection of MLV-related retroviruses. However we believe that current evidence does not support introducing any test methodology at this time.”
Ik geloof dat ik even niet goed word. Nog meer vertraging. Ze willen dus eerst causaal verband zien voordat ze het serieus gaan nemen. STRUISVOGELS
Liefs,
Esther
http://www.onwilliglichaam.blogspot.com
http://twitter.com/xmrvbug
geeft ook een aantal tweets van Heidi Bauer die interessant zijn om te lezen.
geeft ook een aantal tweets van Heidi Bauer die interessant zijn om te lezen.
Prematuur berichtje van Heidi wordt weggeblazen door het volgende. Met 9 tegen 4 stemmen worden ME/CVS patiënten geweerd van het geven van bloed. Joepie!!!
People with chronic fatigue syndrome should be barred from donating blood until health officials complete a review into whether the disorder is tied to an infectious agent that may spread, U.S. advisers said.
The Washington-based American Red Cross, the nation’s largest supplier of blood products, announced Dec. 3 that it won’t accept blood from potential donors diagnosed with the syndrome. Some studies have found that a virus called XMRV may be linked to the condition.
More than 1 million Americans have chronic fatigue syndrome, which leaves people exhausted and can cause joint and muscle pain, according to the U.S. Centers for Disease Control and Prevention in Atlanta. No widely accepted cure exists for the syndrome and no medicines are approved to treat the condition, according to the CDC.
A panel of experts convened by the Food and Drug Administration voted 9-4 yesterday in Gaithersburg, Maryland, that the scientific evidence supports rejecting donations from people with the illness, Shelly Burgess, a spokeswoman for the agency, said in an e-mail.
Liefs,
Esther
http://www.onwilliglichaam.blogspot.com
People with chronic fatigue syndrome should be barred from donating blood until health officials complete a review into whether the disorder is tied to an infectious agent that may spread, U.S. advisers said.
The Washington-based American Red Cross, the nation’s largest supplier of blood products, announced Dec. 3 that it won’t accept blood from potential donors diagnosed with the syndrome. Some studies have found that a virus called XMRV may be linked to the condition.
More than 1 million Americans have chronic fatigue syndrome, which leaves people exhausted and can cause joint and muscle pain, according to the U.S. Centers for Disease Control and Prevention in Atlanta. No widely accepted cure exists for the syndrome and no medicines are approved to treat the condition, according to the CDC.
A panel of experts convened by the Food and Drug Administration voted 9-4 yesterday in Gaithersburg, Maryland, that the scientific evidence supports rejecting donations from people with the illness, Shelly Burgess, a spokeswoman for the agency, said in an e-mail.
Liefs,
Esther
http://www.onwilliglichaam.blogspot.com
By AMY DOCKSER MARCUS
An advisory committee to the federal Food and Drug Administration is recommending that people with chronic fatigue syndrome be barred from donating blood, amid concerns a retrovirus may be linked to the disease.
The panel voted Tuesday 9 to 4 that the FDA should require a screening question to ask potential donors if they have a medical history of chronic fatigue syndrome and, if so, exclude them from donating.
The recommendation by the panel must now be reviewed by the FDA, which typically follows the advice of such panels but is not required to do so. An FDA spokeswoman said there was no timetable yet on a final decision.
The panel's recommendation is a significant milestone for patients, who have often felt maligned by the medical community. The syndrome, which affects over one million people in the U.S., is diagnosed based on symptoms that include severe pain, debilitating fatigue and cognitive difficulties. There isn't a known cause, however, and many patients say doctors often don't believe they are sick.
There has been intense interest about whether sufferers of the syndrome should be barred from donating blood since last year, when the journal Science published a paper linking a retrovirus called XMRV to the disease. The science on whether XMRV is associated with chronic fatigue syndrome or other diseases, causes disease, or can be transmitted through the blood is still hotly debated.
The AABB, an umbrella group comprising centers and groups that collect most of the nation's blood supply, recommended in August that until the scientific questions are worked out, people with chronic fatigue syndrome should be discouraged from donating blood. The American Red Cross, which collects about 50% of the nation's blood supply, has been asking potential blood donors since October to say whether they have the condition and bars such patients from giving.
The panel's recommendation, if adopted by the FDA, goes a step further because it would include a question about diagnosis as part of the screening questionnaire that donors must answer before giving blood. The FDA regulates the nation's blood supply and so its decision would cover all blood centers.
The decision isn't expected to have a big impact on the volume of the blood supply. Susan Stramer, executive scientific officer of the American Red Cross, presented data to the panel based on the experience of the Red Cross in the two-month period since they told their centers to stop taking donations from patients with the syndrome.
Dr. Stramer said that of one million blood donors in this period only 34 came forward and identified themselves as being diagnosed with it. She said this represented only .003% of the donors.
Judy Mikovits, who led the team of researchers that published the study in Science linking XMRV to chronic fatigue syndrome, said Tuesday's decision is a victory for patients because "for the first time ever, they are being seen as sick with an infectious disease.''
John Coffin, a retrovirologist who was a member of the advisory panel and voted to support a screening question, said that he still didn't know for certain whether or not XMRV is associated with chronic fatigue syndrome. But he said there was enough scientific evidence to support the notion that at least some cases of the condition are caused by an infectious agent.
"Even if it turns out that XMRV is not the cause, there might be something else and prudence dictates a deferral of blood donations,'' Dr. Coffin said.
Write to Amy Dockser Marcus at amy.marcus@wsj.com
An advisory committee to the federal Food and Drug Administration is recommending that people with chronic fatigue syndrome be barred from donating blood, amid concerns a retrovirus may be linked to the disease.
The panel voted Tuesday 9 to 4 that the FDA should require a screening question to ask potential donors if they have a medical history of chronic fatigue syndrome and, if so, exclude them from donating.
The recommendation by the panel must now be reviewed by the FDA, which typically follows the advice of such panels but is not required to do so. An FDA spokeswoman said there was no timetable yet on a final decision.
The panel's recommendation is a significant milestone for patients, who have often felt maligned by the medical community. The syndrome, which affects over one million people in the U.S., is diagnosed based on symptoms that include severe pain, debilitating fatigue and cognitive difficulties. There isn't a known cause, however, and many patients say doctors often don't believe they are sick.
There has been intense interest about whether sufferers of the syndrome should be barred from donating blood since last year, when the journal Science published a paper linking a retrovirus called XMRV to the disease. The science on whether XMRV is associated with chronic fatigue syndrome or other diseases, causes disease, or can be transmitted through the blood is still hotly debated.
The AABB, an umbrella group comprising centers and groups that collect most of the nation's blood supply, recommended in August that until the scientific questions are worked out, people with chronic fatigue syndrome should be discouraged from donating blood. The American Red Cross, which collects about 50% of the nation's blood supply, has been asking potential blood donors since October to say whether they have the condition and bars such patients from giving.
The panel's recommendation, if adopted by the FDA, goes a step further because it would include a question about diagnosis as part of the screening questionnaire that donors must answer before giving blood. The FDA regulates the nation's blood supply and so its decision would cover all blood centers.
The decision isn't expected to have a big impact on the volume of the blood supply. Susan Stramer, executive scientific officer of the American Red Cross, presented data to the panel based on the experience of the Red Cross in the two-month period since they told their centers to stop taking donations from patients with the syndrome.
Dr. Stramer said that of one million blood donors in this period only 34 came forward and identified themselves as being diagnosed with it. She said this represented only .003% of the donors.
Judy Mikovits, who led the team of researchers that published the study in Science linking XMRV to chronic fatigue syndrome, said Tuesday's decision is a victory for patients because "for the first time ever, they are being seen as sick with an infectious disease.''
John Coffin, a retrovirologist who was a member of the advisory panel and voted to support a screening question, said that he still didn't know for certain whether or not XMRV is associated with chronic fatigue syndrome. But he said there was enough scientific evidence to support the notion that at least some cases of the condition are caused by an infectious agent.
"Even if it turns out that XMRV is not the cause, there might be something else and prudence dictates a deferral of blood donations,'' Dr. Coffin said.
Write to Amy Dockser Marcus at amy.marcus@wsj.com
A Dr Montoya anonymous patients receives a letter from Stanford!
door XMRV Global Action op woensdag 15 december 2010 om 1:30
xmrv is real....i just got a letter from dr. montoya and stanford. they are expanding their infectious disease dept to study any and all viral/bacterial and retro-viral factors causing ME/CFS, Chronic Lyme and MS and other infectious associated chronic diseases....including,borrelia, hhv6, toxo, fungi and XMRV!!!!
"our aim is to see patients being validated by their healthcare providers and fully integrated into mainstream medicine. we plan to identify biomarkers and other tests that will be diagnostic for these diseases so that appropraite and personalized treatments can finally take place and end individual suffering"...
THIS IS FROM STANFORD!!!!!! amazing.
Shared with permission from author.
door XMRV Global Action op woensdag 15 december 2010 om 1:30
xmrv is real....i just got a letter from dr. montoya and stanford. they are expanding their infectious disease dept to study any and all viral/bacterial and retro-viral factors causing ME/CFS, Chronic Lyme and MS and other infectious associated chronic diseases....including,borrelia, hhv6, toxo, fungi and XMRV!!!!
"our aim is to see patients being validated by their healthcare providers and fully integrated into mainstream medicine. we plan to identify biomarkers and other tests that will be diagnostic for these diseases so that appropraite and personalized treatments can finally take place and end individual suffering"...
THIS IS FROM STANFORD!!!!!! amazing.
Shared with permission from author.
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magnetronnie
- Gevorderd lid
- Berichten: 536
- Lid geworden op: 27 nov 2010, 10:15
Wat ik ervan begrepen heb is dat ze wel degelijk XMRV hebben aangetoond, maar alleen wanneer de juiste meetmethodes en apparatuur wordt gebruikt. De negatieve studies gebruikte dit allemaal niet. Maar toch is niet iedereen overtuigd of het wel XMRV is wat ze hebben gevonden, omdat het virus niet is geisoleerd en slechts (delen van?) DNA is gevonden, en dan ook nog eens polytrophic in de ene studie en xenotropic in de andere. Er werd wel bepleit om, als het dan toch geen XMRV is, door te blijven zoeken welk virus het dan wel is, want dat het een virus is lijkt toch wel zeker.
Dit gaat nog een lang verhaal worden helaas.
Twee aanwezige sprekers bleven hameren op mogelijke contaminatie (besmetting), maar werkelijk alles is op alles gezet om dat te voorkomen, en overal waren controles in de studies negatief.
Dit gaat nog een lang verhaal worden helaas.
Twee aanwezige sprekers bleven hameren op mogelijke contaminatie (besmetting), maar werkelijk alles is op alles gezet om dat te voorkomen, en overal waren controles in de studies negatief.
Dr. Alter:
when a group finds a new agent, become biased it's real. When it's not found by another group, they become even more biased it's unreal.
Our goal should be to find the truth. The truth wlil out over the next year. I concur we have no evidence for causality, esp when we're at the LoD and assay perf is so critical.
But I still want to counter by saying that the current evidence for disease association is very strong that XMRV or MLV is strongly associated with CFS.
In those labs who do find the agent, it's very reproducible. Year after year, same paitents.
Confirmed by sequencing, reproducible over time.
Dr. Hanson has demonstrated how criticalthe assays are. When tweaked assays, findings identical to Lo lab.
Diversity of XMRV/MLV being confirmed in WPI lab, so not only agent being confirmed there.
In 100s of neg controls in same lab, extremely neg, has done what Coffin recommended was also neg. Always neg for contam. It isn't logical to suggest otherwise.
Stoye used single-case anecdotal info to try to make a case. Simply because it has happened in the past isn't valid to negate reproducible data from 4 diff laboratories.
I'm not a CFS Dr, but have learned alot in last 6 months. Absolutly convinced when you define this by proper criteria, it's a very serious, medical disease. Chars of a viral disease. If it's NOT XMRV, we must continue the research to find out what is.
