Hot News! Patints Congres by De Meirler and Roelants on XMRV (22 sept.2010)

Berthe

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Because I'm tired it's difficult to give you an impression. But I will give it a try. I want to apologize in advance for al the vocabulary mistakes I make in writing and translating.

DML gave a short presentation with the latest news on XMRV, data from the Workshop in Washington. Data we all know by now, because this forum is faster than the light. More interesting is ofcourse his personal feeling about what happened over there and therefor I will quote him on several subjects.

He mentioned the Lombardi study and the fact that in less then one month there were some negative:rolleyes: studies published.
"It's impossible to do good research in less then a month". :rolleyes:

About the Blomberg study from Sweden, where they couldn't find any XMRV, he said the following;
"We delivered 132 bloodsamples and Blomberg did find two XMRV+, but he forgot to mention them in his study. Speaking about politics". :rolleyes:

The patints chosen for the Ampligenstudy were badly chosen. (33%XMRV+)

Blood from relatives tested 50% XMRV+
Lots of patints have children with autism

"There is a lot more to come", he stated seriously

He told us that in a personal communication with Cheney, Cheney said that he had good results in treating the patints with Artusenate, a NFKappaB inhibitor.

He couldn't tell us anything about the other studies concerning the relation between XMRV and other disseases, but he confirmed ten diseases already found evidence (XMRV+ patients)

He talked about Singh and the 4 medications that has proven their effectivity. Ragrevir, AZT, Tenofovir and Zidovodine. " This combination is not tried in patints yet, but will possibly dangereous in regard to resistancy".

"The virus is stable. Because of the problems with the viral load that seems to be shifting anti-retrovirals are not usefull". (Here I actually nodded my head and nearly fell of my chair):eek:

The Alter/Lo study is being replicated in Belgium and for the now he could tell us that 50% tested MLV+)

He stressed the importance of the journalist/patintgroup at the workshop putting pressure on the virologists for clinical trials. (personally I find that paradoxical with his earlier statement that anti-retrovirals are not usefull, nevertheless I'm philosopher and a critical mind)

DML thinks that the symptoms play a bigger role in the disease than the virus at a given moment.
When I ask him if al these treatments to get rid of the symptoms (leaky gut etc..) aren't a waste because the virus self remains in place and active, he answers that it is a cirkle. (Personally I don't believe that)

Hot news.
Somebody in the audience asks him if the disease is sexually transferable?
"They have asked me not to show the data yet, but yes it is. The study will be published soon!"

For Otis,
Urinetest was a take away H2S test. Mine coloured like Coca-Cola:D

Love,
Berthe

For the dutchspeaking, I will be blogging about this evening this weekend I guess after a well deserved rest. Follow me at: http://www/onwilliglichaam.blogspot.com
 

Jenny

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DML thinks that the symptoms play a bigger role in the disease than the virus at a given moment.
When I ask him if al these treatments to get rid of the symptoms (leaky gut etc..) aren't a waste because the virus self remains in place and active, he answers that it is a cirkle. (Personally I don't believe that)


Thanks very much Berthe - that's very interesting. But I can't quite make out what you mean by a 'cirkle' :confused: :D

Jenny
 

Enid

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Thanks Berthe - very interesting indeed. Dr Meirler and colleagues certainly know so much about this illness. I'm a Coca-Cola too.!
 

eric_s

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He stressed the importance of the journalist/patintgroup at the workshop putting pressure on the virologists for clinical trials. (personally I find that paradoxical with his earlier statement that anti-retrovirals are not usefull, nevertheless I'm philosopher and a critical mind)
Maybe he was not thinking about clinical trials for antiretrovirals or not only antiretrovirals. Then i don't know why he was talking about virologists, but that might be because they're the ones studying HGRV related diseases.
I don't know Dr. De Meirleir but as far as i know he also has critics (like anyone exposing himself, of course). I think at some time he had the theory (don't know if he still has it) that CFS comes from some sort of disbalance in the gut (feel free to correct me). Me, personally, i don't necessarily believe anything he says, but it was interesting to read, thanks, especially it's good to hear about the replication study in Belgium and also it's interesting to hear what he says about transmission, even though it's not good news. On the other hand it's no surprise.
 

eric_s

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[...]and also it's interesting to hear what he says about transmission, even though it's not good news. On the other hand it's no surprise.
Plus, if such a study comes out, i guess it will be a big kick start for research and funding, because this will scare people. "It's in 5-10% of healthy people and can be sexually transmitted", this is a message that will not be ignored, i think.
 

eric_s

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Who's saying this (i mean outside of the UK ;))? Not that Switzerland is any better, i have not heard about any research into HGRV being done here, even though we have some really good universities. I don't know if they are sleeping, or what. I even wrote to the biggest newspaper after the Alter study was released, but they didn't even bother to reply. Don't know if they published anything later, but i guess not. So i'm happy to be Canadian as well :rolleyes:
I think mostly we hear "causality is not proven yet", which is ok with me, as long as they're doing all they can to find out wheter it is causal or not.
 

August59

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"Sexually Transmitted", but can't talk about it!!! What the hell. Typical government screw up, so just hurry up and wait. There might be a whole lot more people pissed off at CDC or whomever by the time they get around to saying something to the public.
 

Berthe

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"Sexually Transmitted", but can't talk about it!!! What the hell. Typical government screw up, so just hurry up and wait. There might be a whole lot more people pissed off at CDC or whomever by the time they get around to saying something to the public.
Dr. De Meirleir also told us that they were busy investigating a large group of women who became ill after a bloodtransfusion after the delivery of a child. He even talked about the claims that would be made by these women. I think we're on the edge of something major.

I also want to point out that dr. De Meirleir is highly controversial and I don't agree with everything he says. But we better not forget that he always was on our side. Even when he was the big laugh of a lot of scientists. In an era where psychiatry claimed the 'disease'. He doesn't want to call the disease CFS anymore. "CFS doesn't exist", he said yesterday. There will be another name for the disease in the near future, I guess.

Love,
Berthe
 

Sasha

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Dr. De Meirleir also told us that they were busy investigating a large group of women who became ill after a bloodtransfusion after the delivery of a child. He even talked about the claims that would be made by these women. I think we're on the edge of something major.
Wow! That will be major. Thanks for telling us about this, Berthe.

I hope that something serious like that happening in Europe might help kick things off in the UK.
 

August59

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Thanks!!

Hot news.
Somebody in the audience asks him if the disease is sexually transferable?
"They have asked me not to show the data yet, but yes it is. The study will be published soon!"

For Otis,
Urinetest was a take away H2S test. Mine coloured like Coca-Cola:D

Love,
Berthe

For the dutchspeaking, I will be blogging about this evening this weekend I guess after a well deserved rest. Follow me at: http://www/onwilliglichaam.blogspot.com
[/QUOTE]

Dr. De Meirleir also told us that they were busy investigating a large group of women who became ill after a bloodtransfusion after the delivery of a child. He even talked about the claims that would be made by these women. I think we're on the edge of something major.

I also want to point out that dr. De Meirleir is highly controversial and I don't agree with everything he says. But we better not forget that he always was on our side. Even when he was the big laugh of a lot of scientists. In an era where psychiatry claimed the 'disease'. He doesn't want to call the disease CFS anymore. "CFS doesn't exist", he said yesterday. There will be another name for the disease in the near future, I guess.

Love,
Berthe
I like the idea of not calling it CFS anymore too! I meant to say earlier, but I'll say it now, "Thank You" for posting and I really appreciate Dr. Mierlier sharing the information as well. Someone else had posted on another thread about it being so quite lately and how they were getting inpatient because they hoped things would be happening a little quicker than they are.
 

urbantravels

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Thanks for the report, Berthe. "Claims" sounds very interesting - major legal cases like that have the potential to push action on CFS in many different ways. "Publishing soon" sounds very interesting too!!

I know we are all dying for more big publications/news breaks, but I always try to remember what Dr. Bateman said in a recent CFIDS Assoc. webinar - if you don't hear from us (researchers) for a while, that is good news, because it means we are hunkered down working hard at our research and things are happening!