MONTREAL STUDY - important - please read - CANADA

[ladybugmandy]

As you all know, dr. jolicoeur in montreal has done an XMRV study which has yet to be presented. i communicated with him and asked if the rumors are true that they could not find XMRV in the CFS samples. He declined to reveal that information.

I asked if he used methods other than PCR and he said that many methods were used. I asked specifically if he tried to culture the virus and he said many good methods were used....I took that to imply that culturing was tried. He would not give me any details, saying it was confidential until presented to researchers.

I told him that many people on the message boards with CFS have tested positive for the virus. He is interested in communicating with any Canadians who have tested positive. He wants to take blood samples from these people so he can use them as controls.

IF YOU HAVE A POSITIVE XMRV test and are in CANADA...PLEASE SEND ME A PERSONAL MESSAGE and i will forward your email address to Dr. Jolicoeur. If you prefer to contact him yourself, please mention that you are being sent by SUE.

Thank you!
Sue
xoxo

 

[gu3vara]

I'm from Canada but wasn't tested unfortunatly...

I can't wait to hear a response like : yes we did an exact replication of WPI's protocol, until that, I don't worry much...

 

[Kati]

Sue, thank you for sharing this. I wonder why Dr Jolicoeur would not contact WPI and get a control from them? My status is currently negative.

 

[omerbasket]

Very improtanat people.

Although, really, why wouldn't scientists just follow the WPI's methods from begining to end? I mean, assuming that they want to find the truth.

 

[omerbasket]

Let's hope these pride and politics won't leave us to suffer for the rest of our lives.

 

[Kati]

What Omerbasket said.

 

[awol]

could also be partly because of the privatized funding climate. Labs don't want to use other labs' tests and methods because once tests hit the market they want to have their own that they can use to generate funding for their lab.

True scientific sharing is not well served by certain tendencies in market economies.

 

[gu3vara]

I don't worry at all about the CFS politics anymore, XMRV research will continue no matter what is role in CFS is and what others think about it.

If we are XMRV positive, until there is a general concensus on CFS (which will happen sooner or late), we will still be XMRV positive and will need treatment, NOTHING can change that.

Btw, our health system is awful in Quebec and when researchers find something promising to work on, they often have to leave to the US to continue it.

I don't doubt their intentions though in this case, but the money wasn't there to make a proper replication, I'm sure of it.

 

[MEKoan]

Based on public remarks I've heard, I don't think they have found XMRV. However, if WPI scientific process was not sound, the XMRV issue would be dead and buried and it isn't so I'm not worried about any negative studies which have not followed the necessary rigorous protocol... yet.

I have not been tested. Had I been tested, I don't know if I would let Jolicoeur test me again under these circumstances. I would want to know the context in which the results of said test were being used.

Just me.

 

[Gerwyn]

could also be partly because of the privatized funding climate. Labs don't want to use other labs' tests and methods because once tests hit the market they want to have their own that they can use to generate funding for their lab.

True scientific sharing is not well served by certain tendencies in market economies.

no point in having a test that does not work of course

 

[Gerwyn]

Based on public remarks I've heard, I don't think they have found XMRV. However, if WPI scientific process was not sound, the XMRV issue would be dead and buried and it isn't so I'm not worried ahttp://www.forums.aboutmecfs.org/newreply.php?do=newreply&p=80071bout any negative studies which have not followed the necessary rigorous protocol... yet.

I have not been tested. Had I been tested, I don't know if I would let Jolicoeur test me again under these circumstances. I would want to know the context in which the results of said test were being used.

Just me.

he obviously did not validate his methods using a known positive why is he asking for one now at the end of his experiment.All he needed to do was send an e mail.Is scientific illiteracy becoming contageous? How is ME diagnosed in QUEBEC and who supplied the patients

 

[Hope123]

Sue, you should try contacting the following group as they are based in Canada and maintain a patient registry of FM and CFS patients. I don't know what their mechanism is but they could probably send out your message to the 2000+ members in their registry. Thanks for talking to Joliceur.

http://fm-cfs.ca/home.html

 

[MEKoan]

Yes, Gerwyn, it's more than a bit odd that Jolicoeur is going this route to get a known positive.

The whole thing makes me itchy.

Just sayin'

 

[gu3vara]

How is ME diagnosed in QUEBEC and who supplied the patients

I'm from there and it's diagnosed according to the CCC. No Oxford criteria here.

 

[MEKoan]

That makes a lot of sense, Sue.

Very interesting!

Peace to you,

k

 

[Hope123]

hope..thanks for the link. i went there but i cannot find any email address or phone number on the website!

sue
xoxo

Sue, I'm going to PM you the e-mail address that their former exec director used in the past. It's a general address though. The board is also here:

http://fm-cfs.ca/directors.html

They've said on their site the following:

Virus Avoidance Email Policy:
Due to the large amount of junk mail and concern about viruses, we have adopted the following policy. All email must have the codeword "May 12" at the beginning of the Subject Line followed by your chosen subject title. This codeword cannot be copied by ANY Trojan Horse virus, as it is not in the email address. Any email we receive WITHOUT the codeword MAY12 at the beginning of the SUBJECT line, will be deleted immediately. In this way we can ensure that both you and we will avoid viruses.

Snail mail:

Mail:
FM-CFS Canada
99 Fifth Avenue
Suite 412
Ottawa ON
Canada K1S 5P5

 

[Hope123]

Here's the other Canadian group - National ME/FM Action Network -- Marj Van de Sande was one of the people who co-wrote Canadian Consensus Criteria. Perhaps one of you Canucks can notify a rep of these groups to read/ post on this forum like Jspotila does informally for the CAA.

http://www.mefmaction.net/Home/ContactUs/tabid/105/Default.aspx