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XMRV, De Meirleir and Van der Meer on Dutch television tonight 8/30

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Aug 30, 2010.

  1. Jemal

    Jemal Senior Member

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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 :p
    - 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...
  2. Jemal

    Jemal Senior Member

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    Oops, topic title should be:
    XMRV, De Meirleir and Van der Meer on Dutch television tonight
    Hopefully a moderator can fix this, thanks :)
  3. jace

    jace Off the fence

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    Jemal, please report back on this. I know that the Dutch have similar psych lobby problems as we do in the UK, I'd love to know the gist of the conversation.

    BTW, Redlabs, connected with DeMerlier, set up VIPdx in the States, after the 9/11 airtransport blackout.. We have them to thank for the recent advances in understanding our retroviral disease, those of us with CCC ME, anyways.
  4. leaves

    leaves Senior Member

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    I thought van der meer did not want to be in the same show as De Meirleir??!!
    A shame ... This decline in standards ...
  5. FancyMyBlood

    FancyMyBlood Senior Member

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    Thanks for the heads up Jemal!

    Eenvandaag did a nice objective item a couple of months ago. Today should give some fireworks because this would be the first Dutch media to cover the Alter paper.
    I also think it's remarkable that Van der Meer is going to respond, the last time he didn't want in the same show as prof. De Meirleir. I expect he's gong to downplay the new findings like they have done in the past. But the evidence for a biological cause for ME/CFS is growing and growing!
  6. Frank

    Frank Senior Member

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    we will al see the downplay by Van der Meer
  7. Wasbeer

    Wasbeer

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    The role of van der Meer and his buddy Bleijenberg in the Netherlands can be compared to that of Simon Wessely in the UK. Van der Meer and Bleijenberg 'proved' the effectiveness of CBT/GA in their notorious Lancet article. Scientificly, this was a joke. They made a mess of cohort selection and their inclusion and exclusion criteria were clearly chosen to upgrade their succes numbers in stead of doing real science. This Lancet article has caused a lot of patients in The Netherlands a lot of harm and it's one of the worst examples of CFS denial/mistreatment in history. The Nijmegen-gang, who are behind all this, will have a lot to answer for in the coming years.

    To make a long story short: I am not particularly fond of Jos (van der Meer)
  8. cansado

    cansado

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    I am that Dutch patient who was interviewed and I did my best to express how difficult it is to live in theNetherlands as a ME patient. I told them we are treated in scandalous way. Hopefully they won't edit too much..... It was quite a long interview and I am afraid that the core of the stoy will be lost. Actually there should be a table discussion.. Well, I am not going to watch it as I am not here, but I hope you won't be dissapointed.
  9. Snow Leopard

    Snow Leopard Senior Member

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    They have a lot to answer for with the conclusion in their recent CBT meta review article, which included the study in The Lancet.
    Wouldn't the most logical conclusion then be simply that the CBT only changed perceptions (eg the boxes ticked on the questionaire) and did not reduce fatigue in reality?
    If I suddenly had far less fatigue due to treatment, my activity level would surely change dramatically!

    Dolphin provides some good perspective on that article here:
    http://www.forums.aboutmecfs.org/sh...onic fatigue syndrome? role physical activity
    And here:
    http://www.forums.aboutmecfs.org/sh...onic fatigue syndrome? role physical activity
  10. Jemal

    Jemal Senior Member

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    Nice of you to check in with us cansado. So how did En Vandaag find you, through De Meirleir?
  11. cansado

    cansado

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    Yes DeMeirleir called me. It was really difficult doing the interview with so much brainfog!
  12. Sunshine

    Sunshine Senior Member

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    Lone voices in the wilderness

    Kenny De Meirleir must be the only ME/CFS researcher outside of the United States, how about that.
    (Only a handful of doctors around the entire globe exist who take this illness seriously).

    Will we all look back on this situation we find ourselves in, and ask ourselves how was this allowed to happen?

    Europeans are very grateful for Kenny De Meirleir's support and research into ME/CFS. ME/CFS sufferers in Holland and Belgium get a very very rough deal because of Van De Meer & his friends who twist government policies towards making ME/CFS a psychological problem. Just as in the UK, it is countries with 'free' (tax payer funded) socialised medical health care systems where the psychiatrists become kings and write the rule book. The European treatment of ME/CFS patients (psychiatric care or nothing) is a lesson for Americans wishing to enter into 'Obama Care'.

    Mixing a hidden neuro immune illness (and hiding it on purpose from the public) is very dangerous when it comes to having no choice but what the government tell you what is availabe. Holland and UK seem to have the most extreme anti ME/CFS views in the world maybe. It is of no coincidence both of these countries have psychiatrists running psychological rehabilitation programmes because it is the governments (the authorities) who designed and built the master plan that made sure no one would ever find the cause of ME/CFS. It never was going to be found with a name of 'CFS' and psychological therapies being 'proven' to work. 41 years since ME (Myalgic Encephalomyeltis) was accepted by the WHO (World Health Organisation) as a neurological disease, by a stroke of immense luck the WPI in the USA was created by a patient's family. This family got together with scientists and made some incredible breakthroughs in just a few years. Without the WPI we'd have maybed waited another 41 years. 41 years is enough to wait. I've done half that time, and many people have done far more time. Prisoners talk of 'doing time' also, because it's wasted time, wasted opportunity.

    ME/CFS patients are ironically safer having no treatment in Europe (or anywhere else) that blames the ME/CFS patients and makes them worse, than GE/CBT and getting force fed Prozac & Seroxat. REDLABS has been the only service outside the USA that ME/CFS patients have to show they are biologically ill with immune dysfunction. RNaseL test was available in Belgium over a decade before it was in the USA, thanks to Kenny De Meirleir and his links with other immunologists who are trying to help ME/CFS patients, not accuse them of their own disablity.

    Thought of the day:

    New hate crime laws will have to be created to stop these horrible people accusing the disabled (us) of creating our own misery. We have laws against homophobia, transgenderphobia, racism, anti-semitism in developed Western society. Now another minority group (us) must be protected also. Fingers crossed Kenny De Meirleir is going to help this become a reality and in the not to distant future we can report people who make incredibly offensive comments about us to our face, in our medical file and in public.

    The most shocking thing is, is unlike homophobia, transgenderphobia, racism, anti-semitism, our discrimination comes from the medical profession & doctors! Educated people who are meant to care and are meant to know how to behave. This way of life is part of their employment contract as a doctor.

    Quite astonishing if you think about it, especially when ME/CFS was never classified a psychological illness. That is a critical thing to remember when considering the political history of ME/CFS and the treatment of political prisoners.

    Bottom line:
    If as an ME/CFS suffer you are refused medical care because of a 'theory' you are 'something'. If you are given 'care' (CBT/Exercise) that harms you and disables you for life (permanent relapse). If you are refused basic medical tests and screening tests to check you are not progressing into other serious disease states (cancer, heart failure)...................... then you have no human rights and are more akin to a robot on a production line being hypnotised by a dictators lazer beam. (We all know to our cost, who the dictators are). Once we are hypnotized we are compliant. Then we become nothing but an experimental tool, a play thing. All unrespected & marginalised members of society risk becoming targets for singular acts of sadism or indeed group sadism. Man in inherently evil. It's stopping the evil people before they get total power that is important. Tragically for ME/CFS patients around the world, this never happened.

    There are always extraordinary people willing to stand up and speak out against this horrific situation, and Kenny De Meirleir is one.
  13. Frank

    Frank Senior Member

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    It seems like Jos Van de Meer is cracking. He told the reporters the American findings where earthshatering. Of course at the end he said, we don't need to start giving antivirals at random. Kenny de Meirleir had a huge smile of vindication on his face. He told the reporters his treatments where not dangerous, not one person died..
  14. FancyMyBlood

    FancyMyBlood Senior Member

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    Wow, quit unexpected appearance of Van der Meer (at least IMO)

    (First I have no idea if Een Vandaag cut out the downplaying from his side, but it seems he now FINALLY takes it serious)

    Summary Van der Meer:
    ''World-shocking" "World-shocking because there is a controverse about the role of virus(ses) in CFS"
    Reporter: "But the role of virusses is suspected for a long time already, by some even considered as proven?"
    ''Proven it is not, suspected for a long time yes. As long as we have known virusses were suspected as cause for CFS but untill NOW there hasn't been found a cause of CFS"
    (A little confused with this statement. Does he really imply XMRV/MLV is indeed the cause for CFS:eek:? Or does he mean it hasn't been proven yet that XMRV/MLV playes a role in CFS)

    Reporter: "The virus that has been found in an American study (e.g. Alter) is a comparable virus as the HIV virus"
    "Offcourse there are some important differences. There has been told by people with CFS, you don't die from it, but maybe it should be better if you did, while with an untreated HIV infection you die. That's clear. HIV is a deadly virus infection. This is not a deadly virus infection BUT IT IS SERIOUSLY DISABLING and it'ss a nasty syndrome"
    (HE LITERALLY IMPLIES this virus causes this syndrome!!!!)

    "It's to early to treat with ARV while we don't know the virus very well yet and don't know how to how to treat it yet (ie. which medications) . It are potentially toxic drugs"
    Morally I have to agree. While I understand we all want to get better, we first should know which ARV therapies are best. Let the clinical trials begin!

    Pretty shocked (BUT O SO HAPPY) about this appearance of Van der Meer. Do they finally begin to understand there is nothing to downplay anymore. The evidence is getting to big!

    You saw de Meirlier was really happy about this news and finally it seems the shitstorms against him turn into deserved applaus.

    Further, thanks cansado (Mariska) for your appearance. I hope EEN VANDAAG showed exactly the core of your story you want them to show.:Retro smile:
  15. Alexia

    Alexia Senior Member

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    I've just watched, I was surprised (in a positive way).. or "Een Vandaag" cut a lot of the interview with van der Meer or he's really changing his attitude! there was not a word about psychological issues!!
  16. Esther12

    Esther12 Senior Member

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    Hmmm....

    Interesting stuff.

    Thanks for letting us know.
  17. Sasha

    Sasha Fine, thank you

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    Wow, that's amazing to have someone with his opinions do such a volte-face, and to do it on TV! Is Een Vandaag a popular show in The Netherlands? Influential? What sort of show is it?

    Very much looking forward to hearing about Dr de Meirleir's study at the XMRV conference next week - it sounds as though he has exciting results.

    Congratulations on getting such a positive piece of media coverage in your country! I hope it might soon cross to the UK (it's not far on the ferry!)
  18. filfla4

    filfla4 Senior Member

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    This is great news! I have my first appointment with De Meirleir in mid-November...travelling from Malta. I can't wait!

    Jace, what did you mean when you said:

    More info please! Thanks!
  19. Jemal

    Jemal Senior Member

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    Van der Meer was still very cautious. According to him the relation between XMRV and CFS/ME is still not proven. And it's too early to start treating people with antivirals.

    He wasn't talking about psychological issues, but I am not sure what to make of this. He could be doing a CYA or they didn't ask him the right questions (or edited his answers). Well, at least it looks like he's convinced XMRV actually exists :)

    It's a pretty big show and influential. It's a daily news program on a mayor, national TV network:
    http://en.wikipedia.org/wiki/Een_Vandaag

    Anyway cansado, I thought you did a great job. Not sure how much they cut out, but you made a great impression on me.
    I have heard a few friends comment that you looked so healthy... this is one of my frustrations: I look healthy as well, but feel like a trainwreck. I think now they understand better that you don't have to look like hell to be ill.

    It was a pretty informative item and I hope lots of people watched. It will at least give some more awareness to people. Having Prof. De Meirleir talking about treating patients with antivirals on national TV should hopefully give more acceptance to treatments like that.
  20. Wasbeer

    Wasbeer

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    I would say the importance of n vandaag is average. It's an early night news show with some background stories. Not a great timeslot, but quite a solid reputation. My mom phoned me right after the show, and she thought it was a good item. Her opinion is more important than mine, because I'm an insider, and she's an outsider, and if she thinks the message is positive, than the average joe or jane will probably think that too.

    About van der Meer, he didn't downplay it a lot, just the regular causation-not-proven-caution, besides that he didn't say a lot either. Not one word about CBT or prsychobabble. Maybe it's wishful thinking, but judging on the look in his eyes, he didn't seem too comfortable. The fact that he appeared in this news show was a big strategic chance, because he and his colleaugues from Nijmegen had a pollicy of never appearing in any news show, or newspaper article, that also gave room to views contradicting theirs. They always claimed the monopoly on knowledge about CFS, and all others were quacks. A month ago he issued a statement that he didn't want to cooperate with the first n vandaag show on XMRV because "Kenny de Meirleir had a repuation of being too flexible with the truth". A fancy way of calling him a liar. And now; one month later; a show with de Meirleir smiling TOGETHER WITH van der Meer looking rather nervous. Since I joined this forum I learned some new expressions, one of them is CYA mode. Van der Meer was clearly in CYA mode. Well he should be. In my opinion this man deserves jailtime for all that he has done.

    And Cansado: you did a great job representing us, thanks a lot for that. By the way: nice appartment!!! I hope the treatment will help you soon.

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