Interview with Mikovits at symposium in Leuven

[Jemal]

At the symposium last week In Leuven, a small interview was done with Mikovits by Mediplanet (a website for Belgian health professionals). It was taped and posted on their website. The first part is in Dutch, from 0:37 it continues in English as questions are answered by Mikovits.

http://www.mediplanet.be/nl/node/91...m=email&utm_source=Emailvision+video+16062011

No new information or anything, but I am thinking many will enjoy hearing from her.

 

[Enid]

Lovely to hear Jemal - many thanks. Good to see how all her researches progress too.

 

[justy]

Thanks for the link Jemal, it was nice to hear her interviewed and easy for me to understand for a change!

 

[Jemal]

They also interviewed DeMeirleir at this symposium.
http://www.mediplanet.be/nl/node/91...m=email&utm_source=Emailvision+video+16062011

It's in Dutch, but magnetronnie from the Dutch forum has posted a translation (with permission to repost):

Introduction:
Hello viewer,
A few days after the Leuven symposium there was a similar symposium at the VUB (university of Brussels), organised by THE authority on CVS in Belgium and the Netherlands: professor Kenny de Meirleir. We asked him if any political games are being played in this case.

Interviewer: Professor de Meirleir, last week on Monday there was a press conference at the KU Leuven, claiming that the XRMV research was taken down. In the evening, professor Van Weyenbergh nuanced this conclusion, and now you are having a symposium here at the VUB. What can we conclude out of this? Is there a political game being played?

DML: This symposium was already planned for a long time, not last week. There are no games being played. A good discussion took place in Leuven, at international level with many scientists. And at this moment it's a .. (French word I think, I can't hear what he's saying.. I think he means a deadlock or something). There are as many people who found positive result, but who didn't publish as much as a number of eight negative studies that didn't find anything.

Interviewer: In the patient community, tensions are high. Isn't it time that this is relativized?

DML: Yes this can be relativized, in that people should have some more patience, at least three more years, before we'll have a full picture of the role of this virus in the disease. This can eventually happen to be a "bystander" or have a role at the basis, that's something we don't know at this moment. But that doesn't mean we can't do full scale research, screening and so on.

Interviewer: Is that what you are doing, here at the VUB?

DML: Yes we're working on that.

Interviewer: Can you already conclude something?

DML: We have waited to publish to eventually confirm and re-confirm as many things, for example taking multiple samples in the same people, and to try and re-confirm things. I think in the second half of this year we'll have a number of publications about this, but I rather not say much about that today.

Interviewer: Science is also a little bit of politics and that game isn't always played fair. We have found that a authors of the second paper was an ex-employee of the Whittemore Institute. Is this true?

DML: That is correct, but I don't know anymore about that. I don't know those internal politics and we don't talk about that.

Interviewer: Thank you professor.

 

[omerbasket]

I think that the most interesting things she said there are:
1) They expect the BWG study to be finished by the end of the summer.
2) They hope ("maybe") to finish with the Lipkin study by the end of the year.

To me, the summer-sort-of-date for the BWG study to be ended is new.
I really hope that those studies will be designated and done as good as possible, and hopefully they would give us a clear direction.

There is a talk with Kenny De-Meirleir on that page. Now, I haven't been able to access it - but I saw that someone on the other forum said it wasn't in English. Another user there translated (though he said he is not an expert in English, so perhaps it should be taken with cautious) the interview:
Introduction:

Hello viewer,
A few days after the Leuven symposium there was a similar symposium at the VUB (university of Brussels), organised by THE authority on CVS in Belgium and the Netherlands: professor Kenny de Meirleir. We asked him if any political games are being played in this case.

Interviewer: Professor de Meirleir, last week on Monday there was a press conference at the KU Leuven, claiming that the XRMV research was taken down. In the evening, professor Van Weyenbergh nuanced this conclusion, and now you are having a symposium here at the VUB. What can we conclude out of this? Is there a political game being played?

DML: This symposium was already planned for a long time, not last week. There are no games being played. A good discussion took place in Leuven, at international level with many scientists. And at this moment it's a .. (French word I think, I can't hear what he's saying.. I think he means a deadlock or something). There are as many people who found positive result, but who didn't publish as much as a number of eight negative studies that didn't find anything.

Interviewer: In the patient community, tensions are high. Isn't it time that this is relativized?

DML: Yes this can be relativized, in that people should have some more patience, at least three more years, before we'll have a full picture of the role of this virus in the disease. This can eventually happen to be a "bystander" or have a role at the basis, that's something we don't know at this moment. But that doesn't mean we can't do full scale research, screening and so on.

Interviewer: Is that what you are doing, here at the VUB?

DML: Yes we're working on that.

Interviewer: Can you already conclude something?

DML: We have waited to publish to eventually confirm and re-confirm as many things, for example taking multiple samples in the same people, and to try and re-confirm things. I think in the second half of this year we'll have a number of publications about this, but I rather not say much about that today.

Interviewer: Science is also a little bit of politics and that game isn't always played fair. We have found that a authors of the second paper was an ex-employee of the Whittemore Institute. Is this true?

DML: That is correct, but I don't know anymore about that. I don't know those internal politics and we don't talk about that.

Interviewer: Thank you professor.

 

[Jemal]

I am Dutch and I checked the translation first, it's pretty good. No caution needed.

 

[Nielk]

At the symposium last week In Leuven, a small interview was done with Mikovits by Mediplanet (a website for Belgian health professionals). It was taped and posted on their website. The first part is in Dutch, from 0:37 it continues in English as questions are answered by Mikovits.

http://www.mediplanet.be/nl/node/91...m=email&utm_source=Emailvision+video+16062011

No new information or anything, but I am thinking many will enjoy hearing from her.

Is it just me or does Judy seem very subdued?
I'm used to always seeing her full of life and here she seems like she is sleepwalking - or rather sleeptalking?

 

[Jemal]

Is it just me or does Judy seem very subdued?
I'm used to always seeing her full of life and here she seems like she is sleepwalking - or rather sleeptalking?

I have not seen enough of her to say if she is subdued or not in this interview.
She has been travelling a lot though, so the activity and jet lag might have made her run out of energy for a moment?

 

[RRM]

I am Dutch and I checked the translation first, it's pretty good. No caution needed.

I may be not Dutch but "tensions" should really be replaced with "expectations". The expectations are really high within the patient community, is what the interviewer meant to say. The Dutch have a way of saying "high tensed expectations" to explain that expectations are really high, which has probably confused the translator.

Other than that, I agree it's an accurate translation.

 

[Jemal]

I may be not Dutch but "tensions" should really be replaced with "expectations". The expectations are really high within the patient community, is what the interviewer meant to say. The Dutch have a way of saying "high tensed expectations" to explain that expectations are really high, which has probably confused the translator.

Other than that, I agree it's an accurate translation.

You are right RRM, the interviewer said "verwachtingen", which should be translated as "expectations". It's very difficult to correctly translate something when you are not a professional translator. I always make mistakes like this as well when I try to translate stuff.

It's not 100% accurate I guess (as I said "pretty good"), but the message was pretty well translated. I don't think I could have done better.

 

[Sing]

What a pleasure to see and hear her again! I noted she was speaking more quietly than other talks, but perhaps that is because the sound recording was right near her mouth and she knew she didn't have to speak up. On the other hand, when standing in front of a room full of people, she's perhaps seen that as a situation which calls for speaking out.

 

[eric_s]

Judy Mikovits said that some people are finding positive results in one of the two large studies. I don't know if she meant the BWG or the Lipkin study, but that's interesting. It's the first time i've heard something about the actual testing in one of these. Of course, as long as the codes are not broken yet, you can't really know what the results mean.

 

[eric_s]

Now i've also watched the interview with KDM. It's interesting, but "at least 3 more years"? Forget it, we just don't have any more time to give away. This is not meant against him or the other people working for us, but you just can't tell me that if you allocate the necessary resources you can't answer the XMRV question faster than in 3 years. In the end it's a matter of the will of our politicians to give these resources or not (and to some part what our community is capable and willing to give, but this can never match what public budgets could do) and if they would finally seriously help us, i'm sure we could see other timeframes.

 

[Jemal]

Now i've also watched the interview with KDM. It's interesting, but "at least 3 more years"? Forget it, we just don't have any more time to give away. This is not meant against him or the other people working for us, but you just can't tell me that if you allocate the necessary resources you can't answer the XMRV question faster than in 3 years. In the end it's a matter of the will of our politicians to give these resources or not (and to some part what our community is capable and willing to give, but this can never match what public budgets could do) and if they would finally seriously help us, i'm sure we could see other timeframes.

Humans are capable of great deeds. I am sure we could crack ME/CFS in a different timeframe, when enough people worked together and there were lots of resources.

But as things are right now, the 3 years might even be an optimistic guess? At least if you expect successful treatments by then for a virus like XMRV. At the moment they are still arguing if this virus is really in patients! There's at least three more hurdles to take after that: it must be proven that the virus plays a significant role in our disease, a successful treatment must be found and then approved. Do we see this all happening within 3 years? I am not so sure, unfortunately...
I really hope I am wrong though.

 

[eric_s]

The thing is that in the tranlation here he is quoted as mentioning 3 years until we have a full picture of the role of the virus in the disease. I didn't understand him as talking about treatments.

We will see, but i just don't think anyone has the right to tell 1 million people they just have to wait and wait, lose time and health, while a small group of researchers with very limited budgets are trying to figure things out step by step (at times even with obstacles being put in their way).
Budgets are tight, i can understand this, but there is money, others are getting it, and this discrimination must stop.

 

[Jemal]

The thing is that in the tranlation here he is quoted as mentioning 3 years until we have a full picture of the role of the virus in the disease. I didn't understand him as talking about treatments.

Yes, he is talking about the picture of the role of the virus. I got carried away yesterday a bit. I just want to see effective treatments... and if DeMeirleir thinks it will take 3 years, before we understand if and what role this virus plays in our disease, treatments are still a long way off.

It's hard to stay positive with this disease.

Maybe we will see show shortcuts though. If an organisation can start a treatment trial and prove a large number of patients improve on certain drugs...

 

[Sushi]

... and if DeMeirleir thinks it will take 3 years, before we understand if and what role this virus plays in our disease, treatments are still a long way off.

De Meirleir said that in a public interview, yet, in his own practice, he is now treating patients with protocols he is finding over 50% effective. I am one of them and I am being helped--not miraculously fast--but slowly. I'll take this till something better comes along. I am just choosing to be hopeful as any gain is better than a loss.

Sushi

 

[Jemal]

De Meirleir said that in a public interview, yet, in his own practice, he is now treating patients with protocols he is finding over 50% effective. I am one of them and I am being helped--not miraculously fast--but slowly. I'll take this till something better comes along. I am just choosing to be hopeful as any gain is better than a loss.

Sushi

Any help is welcome Sushi, I agree. Many can't afford to go to a doctor like De Meirleir though (because of travelling or money restrictions) and are stuck with "regular" doctors who have no idea what they are facing. I hope DeMeirleir will publish results of his protocols when he feels confident about them, so that other doctors might start using them as well.