Coming to America for XMRV

[Aftermath]

Explanation/Validation

I just reread my post back and I was worried it came off as a bit defensive which I didn't intend.

Like Alice, I don't feel comfortable explaining why this is so important, especially on a board I'm new to. I hope you understand, or if not understand, can empathise with the need for assurance, explanation, validation and knowledge about something which has effected us all so greatly.

Getting a test would make a positive impact on my life, that's the best way I can put it.

If it suits you, by all means do it.

Believe me, once the WPI work is replicated--and a positive test actually does provide an explanation/validation, I will be at the front of the line.

Still, I just want to make it clear to everyone, that right now, a positive test for XMRV provides neither. A lot of us were down this road with Dr. Jose Montoya's work on HHV 6 in 2006-7. I had two separate tests done for HHV-6 (both negative).

His larger study for replication purposes was essentially a bust.

Please don't take this as pessimism. No one wants to see a causal relationship between XMRV and this illness proven more than I do. I just urge caution as someone who has been down the "this is it" road before.

 

[MEG]

Telephone WPI

I have telephoned WPI asking several questions last week. They were personable, didn't rush me and were very accomodating. I am sure they will answer any questions you all have. Their telephone number is on the WPI Website.

 

[condra]

Email I received this evening following an enquiry about Dr Enlander coming to Ireland.

_

DR ENLANDER WILL RETURN TO IRELAND EARLY IN 2010
JOY
medical assistant
_

 

[Nielk]

coming to America

I am confused.

I had my blodd drawn in NYC at Dr. Enlander's office for the replication study for xmrv in cfs/me patients that is taking place in the UK by Dr. Kerr.

If my blood can be shipped from NY to the UK to be studied, why can't
samples from the UK be shipped to the US for testing?

Nielk

 

[Alice Band]

Neil,

Do we know that the blood is actually coming here to London? Maybe he is going to the USA to work at facilities there.

I have emailed Kerr to ask questions but no reply.

 

[Nielk]

Neil,

Do we know that the blood is actually coming here to London? Maybe he is going to the USA to work at facilities there.

I have emailed Kerr to ask questions but no reply.

Alice,

Dr. Enlander said it's being sent to the UK.

 

[Alice Band]

Thanks Niel,

Hopefully Dr Kerr will ansa my email.... I'll let you know if he does

 

[hvs]

It'll have to be in the spring next year as both of our health levels dip during the winter and I'm currently in a relapse and not doing too well with big activities. Also by next spring we'll know more about whether this XMRV theory really is a goer or not.

Katie, I'm sorry you're not doing well right now.

Legitimate XMRV testing will soon not be the sole province of VIPdx. Large, powerful institutions will either buy what's necessary from the WPI or simply reinvent the wheel. There's huge money in this. It's not some weird test for some wacky ailment. It's going to be a relatively common test.

By spring, things should look differently.