Jemal
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UPDATE 31-08-2010:
Youtube version with English subtitles, also many improvements in the translation:
http://www.youtube.com/watch?v=ep0uZwlL_Rw
UPDATE:
The show can be watched online at:
http://www.uitzendinggemist.nl/inde...11343575&md5=a92b96b7167ff599abb5f70f354b5ea9
http://www.youtube.com/watch?v=CK8DE4GWDdw
(both are in Dutch only, the first links contains the entire show and other items not related to XMRV. The second link skips directly to the XMRV item)
Ok, a transcript. I am not a professional translator, so chip in if I make any mistakes.
Presenter: there seems to be a breakthrough in the research on the fatigue illness ME. Independent American researchers have found a virus in the blood of ME patients that is comparable to HIV. There's been a search going on for the cause of the disease since the eighties. The discovery of the virus is important for patients also because they get a lot of misunderstanding.
Patient: it's a bit of recognition. It's great news I think.
Jos van der Meer: earth shaking, you can say.
Patient: we can work towards a cure I think. Hopefully we can think about a remedy.
Interviewer: big news in the world of medicine. This week American government agencies published that they found a virus in patients with the chronic illness ME.
Interviewer: what's so earth shaking?
Jos van der Meer: earth shaking is that there's now a controversy over the role of the virus in CFS.
Interviewer: but this has been suspected for a long time and for some has been proven?
Jos van der Meer: it's certainly not proven. It's true that there has been a suspicion for a long time. As long as we have known viruses they have been suspected as the cause for CFS, but until now there has never been found a causative agent for CFS.
Interviewer: and that's exactly the difficulty for both doctors and patients. This is Mariska. She hasn't recovered from having the flu 21 years ago. She has been feeling very ill for years. Nobody was able to cure here completely. What does her daily life look like?
Patient: Yes, well... that's a very emotional question. You wake and you feel completely exhausted. You don't feel tired, but exhausted. So you wake and my mornings are very bad. I am very tired. You eat something, but I can't endure much. That's something I also have. Around 1 o'clock I start to feel a bit better, after lunch. I can then paint maybe an hour. Maybe two hours if I am lucky. After that I need to rest a lot and I have to go to bed. I go out for a walk sometimes for the fresh air, as that's healthy, but... and then in the evening... yeah, well, it's really nothing. I am... well it's like your life has been discarded.
Interviewer: the virus that has been found in the American research is comparable to the HIV virus.
Jos van der Meer: there are of course important differences. It's said by people with CFS: it doesn't kill you, but maybe that's the annoying part. An untreated HIV infection, this kills you. That's clearly a deadly viral infection. This is clearly not a deadly viral infection. But it's very disabling. It's a grave syndrome. And it's relatively common.
Interviewer: 17 million people worldwide have CFS. 30.000 people have the disease in the Netherlands. Kenny de Meirleir is a professor of the university of Brussels. He has been treating patients for years with antivirals.
De Meirleir: there's less and less resistance to treat patients like I have have been doing for years. There's still a certain dissapproval from the ones who are nonbelievers, but there's more and more people that react neutral. They say: yes he should be right [not the right translation, it's something like "He should get his right"] and the arguments play a bigger role. I think it's going to take a few years before it's generally accepted, but this is an important step.
Jos van der Meer: it's too early to disembark on antiviral treatments, if you don't know the virus and if you don't know what exactly to treat it with. They are potentially toxic agents.
Interviewer: is what you are doing risky?
De Meirleir: No. Patients are not dying. In contrary, I think we are getting many people back to work, people who weren't working anymore.
Interviewer: they don't give this treatment in the Netherlands. That's why Mariska has moved to Brussels. She's being treated multiple times each week with antivirals by doctor de Meirleir. Because a bloodtest has proven that Mariska definitely has the virus. The fluorescent spot indicates that she's a carrier, that's also an important part of this scientific breakthrough. Until recently experts couldn't prove the virus was in the blood. Now that's possible. Brussels has the only lab in Europe that can test blood [for this virus].
Interviewer: so this test is reliable?
De Meirleir: it's very reliable, yes. If you can infect a virgin cell with the blood of a patient and a virus grows in it, then it's proven that there's an infectious agent. And that's a test that is being done here.
Interviewer: scientists still disagree on a lot of aspects. A lot is still unknown. How do you get the virus? Can it be transmitted? And how? If it's in the blood does that mean the worldwide blood supply has been infected?
De Meirleir: giving blood is forbidden for ME patients in four countries, but in general I have always discouraged people. I think that's pretty evident. Not only because of XMRV, but also because they carry other infections, mycoplasmas and they reactivate a few herpes viruses. I think it's evident they shouldn't give blood.
Interviewer: En Vandaag [the show] has asked Sanquin, the bloodbank of the Netherlands, how they cope with the American news. They didn't want to react on camera, because they want to study the research papers extensively. In an e-mail to us they said: Sanquin will take appropriate measures if it's proven that the presence of the virus in donor blood is harmful for patients.
Interviewer: Mariska is staying in Brussels for a while. She has recently started antiviral treatment with doctor De Meirleir. She is going to have to take injections and pills for at least three months before she knows if it catches on. It's a treatment that has unknown effects for the longterm.
Mariska: I am totally desparate. You want to feel better. You want to enjoy life. Then there's nothing else to do, but take this treatment.
------------------
And that's it, all 7 minutes of the item.
------------------
My post before the above update:
Hi all,
Not sure if this has been posted already, but tonight (about 18:15 local time) the Dutch television show "En Vandaag" is going to do an item about XMRV. You can read about it here:
http://www.eenvandaag.nl/gezondheid/36297/doorbraak_in_onderzoek_naar_me
Roughly translated:
--------------------------------------
Breakthrough in ME research
Prestigious American government agencies have again found a virus in ME patients. En Vandaag has reported before about the discovery of the XMRV virus, but other scientists still had many doubts. Does this new proof mean a breakthrough for the treatment of the fatigue illness? And does it mean that ME patients can no longer be blood donors?
En Vandaag talks with the Belgian professor Kenny de Meirleir, who has been convinced for years that the underlying cause for the disease ME is a virus, and professor Jos van der Meer, internist of the Radboud hospital in Nijmegen, who has always denied the virus theory. Furthermore, we take a look at a laboratory in Brussels, the only place in Europe where since recently you can be tested for the virus. We speak with a Dutch female patient who was tested there and was found positive for the virus.
--------------------------------------
Some comments:
- In the first sentence it's stated that the virus was found "again" by government agencies. I guess they mean the WPI, though they are not part of the government. Or maybe they mean the CDC as they have been able to detect XMRV in some spiked samples
- Professor De Meirleir announced last week that he found XMRV in the blood of European patients, hopefully in this show we will learn some more.
The professor is being criticized by some, because he tends to find the press first, before officially publishing findings (where's the paper behind last week's announcement for example?). His treatments are also considered quite expensive. He has helped a lot of patients though and at the moment I consider him a good advocate for us.
- The Dutch professor Van der Meer is known from a study earlier this year that failed to detect XMRV (some say his study was done too quickly and not in the correct way). I think he's one of the people that recommends graded excercise therapy.
So all in all I am very interested in this show. De Meirleir might be the good guy and Van der Meer the bad guy. Or at least to us We'll see...
Youtube version with English subtitles, also many improvements in the translation:
http://www.youtube.com/watch?v=ep0uZwlL_Rw
UPDATE:
The show can be watched online at:
http://www.uitzendinggemist.nl/inde...11343575&md5=a92b96b7167ff599abb5f70f354b5ea9
http://www.youtube.com/watch?v=CK8DE4GWDdw
(both are in Dutch only, the first links contains the entire show and other items not related to XMRV. The second link skips directly to the XMRV item)
Ok, a transcript. I am not a professional translator, so chip in if I make any mistakes.
Presenter: there seems to be a breakthrough in the research on the fatigue illness ME. Independent American researchers have found a virus in the blood of ME patients that is comparable to HIV. There's been a search going on for the cause of the disease since the eighties. The discovery of the virus is important for patients also because they get a lot of misunderstanding.
Patient: it's a bit of recognition. It's great news I think.
Jos van der Meer: earth shaking, you can say.
Patient: we can work towards a cure I think. Hopefully we can think about a remedy.
Interviewer: big news in the world of medicine. This week American government agencies published that they found a virus in patients with the chronic illness ME.
Interviewer: what's so earth shaking?
Jos van der Meer: earth shaking is that there's now a controversy over the role of the virus in CFS.
Interviewer: but this has been suspected for a long time and for some has been proven?
Jos van der Meer: it's certainly not proven. It's true that there has been a suspicion for a long time. As long as we have known viruses they have been suspected as the cause for CFS, but until now there has never been found a causative agent for CFS.
Interviewer: and that's exactly the difficulty for both doctors and patients. This is Mariska. She hasn't recovered from having the flu 21 years ago. She has been feeling very ill for years. Nobody was able to cure here completely. What does her daily life look like?
Patient: Yes, well... that's a very emotional question. You wake and you feel completely exhausted. You don't feel tired, but exhausted. So you wake and my mornings are very bad. I am very tired. You eat something, but I can't endure much. That's something I also have. Around 1 o'clock I start to feel a bit better, after lunch. I can then paint maybe an hour. Maybe two hours if I am lucky. After that I need to rest a lot and I have to go to bed. I go out for a walk sometimes for the fresh air, as that's healthy, but... and then in the evening... yeah, well, it's really nothing. I am... well it's like your life has been discarded.
Interviewer: the virus that has been found in the American research is comparable to the HIV virus.
Jos van der Meer: there are of course important differences. It's said by people with CFS: it doesn't kill you, but maybe that's the annoying part. An untreated HIV infection, this kills you. That's clearly a deadly viral infection. This is clearly not a deadly viral infection. But it's very disabling. It's a grave syndrome. And it's relatively common.
Interviewer: 17 million people worldwide have CFS. 30.000 people have the disease in the Netherlands. Kenny de Meirleir is a professor of the university of Brussels. He has been treating patients for years with antivirals.
De Meirleir: there's less and less resistance to treat patients like I have have been doing for years. There's still a certain dissapproval from the ones who are nonbelievers, but there's more and more people that react neutral. They say: yes he should be right [not the right translation, it's something like "He should get his right"] and the arguments play a bigger role. I think it's going to take a few years before it's generally accepted, but this is an important step.
Jos van der Meer: it's too early to disembark on antiviral treatments, if you don't know the virus and if you don't know what exactly to treat it with. They are potentially toxic agents.
Interviewer: is what you are doing risky?
De Meirleir: No. Patients are not dying. In contrary, I think we are getting many people back to work, people who weren't working anymore.
Interviewer: they don't give this treatment in the Netherlands. That's why Mariska has moved to Brussels. She's being treated multiple times each week with antivirals by doctor de Meirleir. Because a bloodtest has proven that Mariska definitely has the virus. The fluorescent spot indicates that she's a carrier, that's also an important part of this scientific breakthrough. Until recently experts couldn't prove the virus was in the blood. Now that's possible. Brussels has the only lab in Europe that can test blood [for this virus].
Interviewer: so this test is reliable?
De Meirleir: it's very reliable, yes. If you can infect a virgin cell with the blood of a patient and a virus grows in it, then it's proven that there's an infectious agent. And that's a test that is being done here.
Interviewer: scientists still disagree on a lot of aspects. A lot is still unknown. How do you get the virus? Can it be transmitted? And how? If it's in the blood does that mean the worldwide blood supply has been infected?
De Meirleir: giving blood is forbidden for ME patients in four countries, but in general I have always discouraged people. I think that's pretty evident. Not only because of XMRV, but also because they carry other infections, mycoplasmas and they reactivate a few herpes viruses. I think it's evident they shouldn't give blood.
Interviewer: En Vandaag [the show] has asked Sanquin, the bloodbank of the Netherlands, how they cope with the American news. They didn't want to react on camera, because they want to study the research papers extensively. In an e-mail to us they said: Sanquin will take appropriate measures if it's proven that the presence of the virus in donor blood is harmful for patients.
Interviewer: Mariska is staying in Brussels for a while. She has recently started antiviral treatment with doctor De Meirleir. She is going to have to take injections and pills for at least three months before she knows if it catches on. It's a treatment that has unknown effects for the longterm.
Mariska: I am totally desparate. You want to feel better. You want to enjoy life. Then there's nothing else to do, but take this treatment.
------------------
And that's it, all 7 minutes of the item.
------------------
My post before the above update:
Hi all,
Not sure if this has been posted already, but tonight (about 18:15 local time) the Dutch television show "En Vandaag" is going to do an item about XMRV. You can read about it here:
http://www.eenvandaag.nl/gezondheid/36297/doorbraak_in_onderzoek_naar_me
Roughly translated:
--------------------------------------
Breakthrough in ME research
Prestigious American government agencies have again found a virus in ME patients. En Vandaag has reported before about the discovery of the XMRV virus, but other scientists still had many doubts. Does this new proof mean a breakthrough for the treatment of the fatigue illness? And does it mean that ME patients can no longer be blood donors?
En Vandaag talks with the Belgian professor Kenny de Meirleir, who has been convinced for years that the underlying cause for the disease ME is a virus, and professor Jos van der Meer, internist of the Radboud hospital in Nijmegen, who has always denied the virus theory. Furthermore, we take a look at a laboratory in Brussels, the only place in Europe where since recently you can be tested for the virus. We speak with a Dutch female patient who was tested there and was found positive for the virus.
--------------------------------------
Some comments:
- In the first sentence it's stated that the virus was found "again" by government agencies. I guess they mean the WPI, though they are not part of the government. Or maybe they mean the CDC as they have been able to detect XMRV in some spiked samples
- Professor De Meirleir announced last week that he found XMRV in the blood of European patients, hopefully in this show we will learn some more.
The professor is being criticized by some, because he tends to find the press first, before officially publishing findings (where's the paper behind last week's announcement for example?). His treatments are also considered quite expensive. He has helped a lot of patients though and at the moment I consider him a good advocate for us.
- The Dutch professor Van der Meer is known from a study earlier this year that failed to detect XMRV (some say his study was done too quickly and not in the correct way). I think he's one of the people that recommends graded excercise therapy.
So all in all I am very interested in this show. De Meirleir might be the good guy and Van der Meer the bad guy. Or at least to us
We'll see...
