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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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    For the Netherlands it's a pretty big show though, with hundreds of thousands of viewers. And it's a national show, so it's influential I think. At least the people around me don't have that crazy look in their eyes anymore when I am talking about that virus. Not now it has been on national TV. Then I might not be that crazy :)

    The show is now online at:
    http://www.uitzendinggemist.nl/inde...11343575&md5=a92b96b7167ff599abb5f70f354b5ea9

    It's all in Dutch and there some others items first before the start to talk about XMRV, so be warned :p

    Edit: link stolen from a Dutch forum (sorry and thanks):
    http://www.youtube.com/watch?v=CK8DE4GWDdw
    This video immediately starts with the XMRV item.
  2. FancyMyBlood

    FancyMyBlood Senior Member

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    It's a 'current affairs' program on a public broadcast station (like BBC in the UK), right after the six o'clock news. Mostly they pick some current themes and let it analyze by experts. Rated by quality of journalism I believe it's in the in the top of Dutch programmes.

    I did expect objective journalism , but I'm still suprised there was no downplaying/spinning at all from Van der Meer.
    Really hope UK media will do an objective analyze in short notic too. How would you feel if Wessely finally drops his arrogance and starts telling the truth? :D
  3. Jemal

    Jemal Senior Member

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    Still wondering why Van der Meer said it might be better if you died from this disease... because we are living disabled and that's a hell for some/most of us? Or maybe we would get more attention and get help quicker??
  4. FancyMyBlood

    FancyMyBlood Senior Member

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    I think you misunderstood.
    He said that some ME/CFS sufferers sometimes say "you don't die from it but maybe it (would be better if you did die) (freely translated)'' Not sure what he's implying with that but I think he means to say that some CFS patients think if it was a lethal disease it would be taken more seriously.
  5. Jemal

    Jemal Senior Member

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    Ah, ok. That makes more sense. I hate brainfog :)
    I was almost worried he wanted us to die so his problems went away ;)
  6. FancyMyBlood

    FancyMyBlood Senior Member

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    Haha, I had the same thought when I first heard him saying that. Think it was a combination of brainfog and , I have to admit, expectations bias against that man.
  7. cansado

    cansado

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    Well there are patients who died from this disease. And we have a better chance to get cancer..
  8. Sunshine

    Sunshine Senior Member

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    Great job on the TV programme.

    I hope in a few days there is a kind person who can translate from Dutch language to English again, as they did with the first XMRV news item from this n vandaag programme. That translation was posted here and then on the European Society for ME (ESME) website, which was pretty cool.

    Usually it's America that has a monopoly on health news for ME/CFS, it was great to see something coming out of Europe again. The woman with ME/CFS featured on todays programme had beautiful blue eyes I thought. The guy on the programme before was about 6ft 5 tall and could lift cars up with one hand, well maybe. The dutch must be some kind of super race. :Retro tongue:
  9. bananaman

    bananaman

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    Thank you so much guys for your fantastic transcripts and interpretation of what was said tonight.

    Wishing you all good health from England :)
  10. Jemal

    Jemal Senior Member

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    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.
  11. Jemal

    Jemal Senior Member

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    [reserved for second half, but did't need it, post can be deleted]
  12. Sunshine

    Sunshine Senior Member

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    These psychiatrists who use double speak need a slap.

    ME (neuro immune disease) is not 'common' at all. Do you bump into people on your travels with the classic symptoms of ME? No, they are mostly all very disabled and at home!!!

    Chronic Fatigue is common, but Chronic Fatigue is not ME.

    Van der Meer says neuro ME does not exist!



    Thanks for the translations and transcripts.
    :victory:
  13. Jemal

    Jemal Senior Member

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    I edited my former post so there's now an entire transcript. Enjoy ;)

    Also I think the reaction by the Dutch bloodbank is a bit shocking. A virus in the blood is very likely bad news, but basically they want to wait and see if patients who get donor blood get ill. Yeah, let's see if people get AIDS (or at least HIV) and then do something about it!
    Yes, I am overreacting, but it's frustrating.
  14. urbantravels

    urbantravels disjecta membra

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    The blood bank studies that Alter's team is currently undertaking will provide guidance to other countries as well. They're not waiting to see if blood recipients get CFS; they're waiting for results of the specific studies that are looking at blood donors and blood recipients to see if there have been blood transfusion transmissions.
  15. Jemal

    Jemal Senior Member

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    Yeah, I understand. However, I think the blood supply should be kept as safe as possible, and I would have expected some measures after the WPI paper was published. A lot of bloodbanks seem to have adopted a wait-and-see approach, while I think they should act aggressively. But maybe they are passive, because there are not many ME patients giving blood and they already have measures in place to take care of some viruses.
  16. Rivotril

    Rivotril Senior Member

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    Jemal, thnx for the great job you did, it was quite a lot of text!

    microplasm ->he means mycoplasmas

    een verwekker i translated to causative agent , or pathogen, i think that is what he refers to.

    thnx for the great work, its very much appreciated!!!
  17. Sean

    Sean Senior Member

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    Are you seriously suggesting that patients in the USA are having a wonderful time? You been paying any attention to the horror stories coming out of the USA, including how difficult the insurance companies are making it for ME/CFS patients?

    Is being left in the hands of 'free market' corporate medicine, ie the USA system, any improvement? I think not. They don't exactly have our best interests at heart.

    Here in Australia we have one of those dreaded (mostly) socialist medical systems, but we do not get mistreated in anything like the way patients do in the UK, Belgium, etc. (Not saying we have a perfect system and we ME/CFS patients all get treated wonderfully, we certainly don't, but we do okay by world standards.)

    Might want to check a few facts about the overall outcomes of the wonderful USA free market style health system before you condemn every other system. Stuff like infant mortality, average life span, access to decent health care, etc, etc, etc. The USA are waaaaaaaay down near the bottom of the OECD countries, and yet they spend nearly twice the amount per capita than the nearest OECD country. A shameful failure, by any standards.

    Know who has the best health stats in the world (especially average life span)? Japan, and they have a very heavily socialised medical system.
  18. Jemal

    Jemal Senior Member

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    Thanks for the feedback, I edited the transcript and put in mycoplasmas and causative agent.
  19. Sunshine

    Sunshine Senior Member

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    No. There is no effective treatment. A wonderful time is impossible. A small proportion of ME/CFS patients in America get good health care, and most get zero, none. I understand that. Yet.........USA is the Mercedes Benz of health care for ME/CFS. ME/CFS patients fantasise of coming to America over the last two decades, to see: Dr's.........Cheney/Lapp/Peterson/Lerner/Klimas/Montoya/Bell/ etc. Failing that, there are some excellent hospitals, which for $$$$ accept patients with ME/CFS for testing and diagnostic services. These places do not exist at all in Europe, despite Europe having a much bigger population than the USA.

    People in the USA are not locked in psychiatric wards with CFS unless they are proven mentally ill, in the UK they are, even if a ME/CFS patient is proven FIRST to have a heart condition or nervous system damage and no sign of mental illness, if you are bed ridden and you get inside the system, in you go...... People in the UK can be pulled out of the beds by the police and locked away, even when they have no evidence of depression if a psychiatrist says so, again due to the belief in the UK CFS/ME is a 'faulty illness belief'. There is child abuse in the UK. So yes I am seriously suggesting America gets the best deal in the WORLD for ME/CFS health care, it does. FACT. Rules do not exist for ME/CFS Someone wants to refuse to come to your aid in hospital, then they will. Who will believe you?

    This may shock if you get crap health care (if any), but I think you don't understand that outside the USA, ME/CFS is a political disease where patients as well as their families can be threatened to keep their mouths shut if you tell people you will go the newspapers and expose the hospital or medical staff for abuse. In the USA you have rights, its part of your constitution. In UK and Europe and the 'state' healthcare, you have no rights. Americans can sue people, can sue doctors and take them to court. You cannot take anyone to court in a socialised medical system, no doctor is officially employed by the hospital. They have legal immunity and are 'guests'. FACT. If you persist and tell them you're gonna report them anyway, they 'lose' your medical file as to remove proof you were ever there, or they make you the patient, a guest!!!! Yes a guest of the hospital, not a patient. How about that?

    If the state kill you (ME/CFS) or not, the best your family get is an apology. It is exceptionally rare anyone can win damages and prove their case due to corruption. In Eastern European countries, bribary is common place for basic medical provison such as an anesthetic at the dentist, and pain medications in hospital. There you put money in the nurses pocket and you might get a lignocaine injection if you're lucky. In these countries, ME/CFS does not 'exist' - literally. So you won't even get a label to go with the neglect.

    Compare this to 'Ampligen' in America and the ease of obtaining anti viral medications. Sure 200 people may have got it in total (I have no idea how many), but 200 is better than none. Americans have private health care (if they can afford it). ME/CFS patients have a choice to try medications in the USA, and get access to pain drugs. (These are illegal in the UK and in parts of Europe). 2009 UK NICE guidelines on CFS/ME forbid the use of antiviral drugs even!!!. LOL. Doctors are paid NOT to refer anyone (ME/CFS or not) into hospitals and are given financial incentives by the UK NHS not to, this is a FACT. Imagine going to a hospital in America with a virus and the doctor says, I can't treat your infection it's illegal. LOL!! Welcome to the UK.

    Private health care does not cover ANY chronic disease in the UK. These people go home and rot. (MS, Parkinson's etc). Yet for ME/CFS people it is psychiatric ward and possible death, or nothing. The most safe way to stay alive in the UK with bed ridden ME/CFS is to never get into a hospital, that is a sure fire way to get locked up. It's best to stay out and get your (double annual visit) to the out patients department. So you may have breast pain, or a bleeding bottom, or convulsions, or acute episodic shortness of breath attacks but you will NOT get sent to a specialist and you will not get transfered from ER to a hospital bed, but sent home (unless the admitting problem is very dangerous). Once you are out of danger, you are STILL sent home! No doctor, no referal for the next plan of management. Rules state ME/CFS patients MUST be treated in the community by a desk doctor (who cannot treat you) and not a hospital doctor. LOL!!! Seriously. They have to ask for a referal to allow you permission (for example) to get an ECG in a cardio department. Doctors in Canada can do the ECG there and then in the doctors office, as they can in America.

    You may have a dreadful life with your illness, and this is unfortunate and I am sorry if you suffer. If for one second you think that the average American with severe CFS thinks they could cope in the UK for one week with severe ME/CFS, try again. Severe ME/CFS patients in America are on 15, 20+ tablets a day to try and stay alive, they may have to sell their home, dog and ex-husband to get there, but they can and often do (not always), but often. They have a doctor they can call if paying a monthly fee for this service , and a doctor who can administer morphine and other powerful drugs. Here there is 911 and an on-call doctor service at night that phones you back if it's an emergency. The problem is, we have a chronic neuro disease.

    In the UK, you are not allowed to see a doctor, if your GP (desk doctor) says so. You are aware of this? I'll say it again. Once a person (who is told ME/CFS is a psychological disease) can stop you from going to a hospital, this is it. No tests, no cancer screening, no heart check ups, no asthma tests. NOTHING. As previously stated, there is no private medical health care for chronic disease (any disease!), so even the rich suffer too. Many Americans who are educated/fortunate/hard working and blessed with health, work their butts off to pay ridiculously high insurance premium.

    What if these insurance premiums were prevented for any disease in America?! They are in the UK. So you have to go do your CBT brainwashing and 'prove' you aren't psychotic or do nothing. That's if you are very very lucky and get into a 'CFS/ME' specialist centre, a re-branded psych 'rehabilitation' programme. The treatment: CBT, Occupational Therapy, keeping an activity diary, graduated activity and anti depressants.

    There are 8 state funded beds for ME/CFS in the UK for 250,000 patients. There are no private beds. America is a palace of opportunity for the rich and the priviledged for sure, but for those with money, there is choice. Every single world ME specialist (except Kenny De Meirleir in Belgium) is American. And they are American for a reason because of the legal ability of these doctors to be allowed to treat patients.

    In Europe it is illegal to 'treat' ME/CFS patients in the state health care system for biological problems known to be found in the illness, unless the state allow it, As Naturally, as CFS/ME is called a biopsychosocial disorder by the state, no treatment for biological problems are allowed. Dr Sarah Myhill (supporter of ME/CFS patients in the UK) has had her right to practice as a doctor (MD) taken away, for the crime of..................(drum roll) giving ME/CFS patients vitamin B12 injections. God knows what they'd have done to her if she'd thought of Valcyte.

    It is better to have no money to pay for health care, than to go to a 'free' health care system sit in a doctor's office for 'free' and be told you cannot have basic medical health care, because you are insane. Or to have angina and have a medic laugh at you and walk off, knowing they will NEVER get caught. That my friend, is worse. On top of that, no humans rights and therefore when things go wrong, no one is sued and no one is stopped. If someone wants to threaten to kill you in a hospital they do it, you are not believed as you have 'CFS/ME' a mental illness according to the UK state. Back over in America, someone does that and as you paying $1,000 per night, per room you have some respect and you have some power for you bucks spent.

    America remains the cream of the crop, the absolute best option for ME/CFS treatment in the world. Everyone envy's Americans and their Nancy Klimas and WPI. Yes 0.00000001% of people may get to see her, but she exists, she is real, she is allowed to see people, and she isn't stopped by attempting to help people with ME/CFS. Outside America, thinks aren't quite the same even if they are already very bad in the USA which I fully understand. I also understand from reading this forum, a significant number of Americans are getting medications to help cope, which are banned outside the USA due to state corruption and total control of the politicised illness label ME and CFS.

    You get a bad deal, we get a worse deal. I am totally in agreement Americans do not get wonderful treatment for ME/CFS, they get none as the state do not provide a bean. Only by paying very high insurance, or having the cash are some Americans able to access private specialists.

    This thread is about Dr De Meirleir in Europe. He is a maverick who follows the American model of health care. He is also threatened and trashed by people like Van De Meer and his fellow medics who hate him for sticking up for people. REDLABS, (thanks to the Americans at the WP/VIPDX) now has the XMRV culture test. No one knows though, as MULV FDA paper wasn't allowed to be published in the British press.

    It would be funny if it wasn't so tragic.
  20. Megan

    Megan Senior Member

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    Sunshine,

    I dont think you can say that what happens in the UK is representative of what happens ouside of America, remember there are a lot of other countries out there apart from the UK.

    I also live in Australia and am familair with a number of CFS patients who are English and they constantly say 'I'm so glad I dont live in the UK'. Yet we have a centralised medicine system too, so I'm don't think thats the source of the problem. I'm not saying CFS patients get treated well here but I don't believe they get treated well anywhere. It is really hard to find a CFS doctor here, as I think it is hard to find anywhere, but when we do much of the cost (ceertainly not enough!) is covered by the medical system.

    I agree some of the extreme stories that have come out of the UK have been horrendus. But if you listen to Dr. Bell from last Octobers CFSAC hearings you will hear stories of children removed from their families due to CFS - I can only conclude that these were American cases as he is an American doctor. I understand there have been at least one or more cases of that happening in Australia too. So shit is happening everywhere, regardless of what medical system is in place or not.

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