Does De Meirleir have concerns about the xmrv serology test?

[Kate_UK]

He is speaking at a conference at the end of the month so maybe that will give a clearer picture.

 

[lili85]

I haven't fully read the thread, but I just wanted to let you know what KDM told me about the serology testing last week when I had an appointment with him in Norway.

I don't remember word by word what he said, but it was something along the lines that he doesn't think the serology testing is the best way to detect this virus, since it is a better method when finding viruses in an epidemic, and that's why he prefers the culture testing.

Apart from that I don't know enough about his views on any matter to make any statements about it here, but I just want to mention that I think he is a fantastic person who truly is dedicating his life to helping CFS sufferers literary all over the world!

 

[aruschima]

Hi everyone

Berthie ,
I am not willing to go into any speculation about statements he may or may not have made to a patient you might know or not and if it was a misunderstanding.
I think it is absolutely irresponsible to second hand quote such a statement, especially in such a context, without confirming it!

I am a patient of Dr. Meirleier and i talked to him personally in August. He made a lot of statements, all to the contrary of you quoted statement ! I can say for certain that this was (is) not his opinion when i talked to him in August.

Other than that i suggest this friend "person" shall come here and make such a statement her/himself and than i would write to Dr. Meirleier confirming this statement .

Aruschima

 

[Mark]

Dear everybody,

You are right. The information was not first hand and that's why I made this clear in my first post. I can only quote someone if I hear them say it directly to me. And of course then it has to stand the test of time and my Alzheimer light is not always helping. In the case of the conference I made notes, like at university, so I' pretty sure they are correct.
I don't want to speculate on something and I will be more carefully phrasing my words the next time. I think dr. De Meirleir is a fantastic physician, researcher and person. He is highly intelligent and a well-spoken guy. In Belgium everybody knows him and he is highly controversial. If you go to a medical doctor, your cardiologist, pharmasist or talk to a friend-scientist everybody is warning you. I think you don't get these reactios as much in other parts of the world.

In my search for an honest and objective picture of DML, I sometimes seem to get inflicting and inconsistent information. It's not a personall matter but these inconsistencies 1) with telling us that anti-retrovirals are not usefull and 2) the serologytest not being usefull, are absolutely raising questions in my highly critical mind. Therefor I asked you people what to make of it? I'm only getting more confused.
Mark is right. I will not speculate on anything in the future. I'm sorry!

Love,
Berthe

Berthe, I'm sorry if you read my post as saying you should not speculate. Actually, I was saying quite the opposite. I would, and will, defend your right to post questions like the one that formed this thread. You were confused about something you heard second hand, and you asked the question here. There's nothing wrong with that: that's one of the things this site is for. People have responded, they have helped to clarify what this rumour might be about, we've heard that Dr de Meirleir prefers the culture test to the serology test, so it seems clear that was part of the "chinese whispers".

I'm sure you've learned from this thread that sometimes it's better to try to pursue questions like this behind the scenes first, and that second-hand information and rumours can cause tension sometimes, so a bit of caution is a good idea. Others have been through that learning process too, myself included.

There's no harm done here, I think. We've had a chance to talk this through, lots of people have given very positive testimony about Dr de Meirleir, we understand that he is not anti-WPI as was suggested, so the record has been set straight. It happens all the time, so please don't feel bad about it all.

And you said you won't speculate on anything in the future: please don't follow that plan! It would be a great shame if you felt you couldn't speak your mind here. You've brought a really valuable perspective to the forum, and we're pleased to have you here. Just carry on with the good work you're doing.

 

[aquariusgirl]

He's not the only doc advising patients to hold off on testing for XMRV/MuLV or what have you, is he?
From what I've read here and other blogs, Susan Levine in NY and Prof Nancy Klimas in Miami are telling patients to hold off .. there will be better tests later.

 

[Berthe]

Berthe, I'm sorry if you read my post as saying you should not speculate. Actually, I was saying quite the opposite. I would, and will, defend your right to post questions like the one that formed this thread. You were confused about something you heard second hand, and you asked the question here. There's nothing wrong with that: that's one of the things this site is for. People have responded, they have helped to clarify what this rumour might be about, we've heard that Dr de Meirleir prefers the culture test to the serology test, so it seems clear that was part of the "chinese whispers".

I'm sure you've learned from this thread that sometimes it's better to try to pursue questions like this behind the scenes first, and that second-hand information and rumours can cause tension sometimes, so a bit of caution is a good idea. Others have been through that learning process too, myself included.

There's no harm done here, I think. We've had a chance to talk this through, lots of people have given very positive testimony about Dr de Meirleir, we understand that he is not anti-WPI as was suggested, so the record has been set straight. It happens all the time, so please don't feel bad about it all.

And you said you won't speculate on anything in the future: please don't follow that plan! It would be a great shame if you felt you couldn't speak your mind here. You've brought a really valuable perspective to the forum, and we're pleased to have you here. Just carry on with the good work you're doing.

Dear Mark, thank you very much for the advice. In real life I'm also the type of person that sometimes speaks before she thinks. In a strange sort of enthusiasm. Often it's hillarious, but sometimes it is not wise. I really love this forum and I honestly wish I could express myself better in English. It feels great to have you as tutor

When I found out that there was so much information in English, made available through this site and the blogcommunity, I started writing my blog in Dutch. In a column one can express him or herself in a more opiniated way. If you can read Dutch, you are welcom at:
http://www.onwilliglichaam.blogspot.com

Love,
Berthe