Imperial College now offering PCR XMRV testing

[Katie]

I would throw myself in front of a bus that carried Joyscobby or Dys. to IC! They must not get involved in this.

ETA IMH and fervent O

Anyone VIP dx people thinking of going to IC to prove a point please do not.


You could risk the DWP finding out about a negative test, your doctors believing the IC test and the IC is not to be trusted, look at how they've handled the media so far.


Please, I'm with Koan and I'm chained to the wheel of the bus, please don't do this.

 

[valia]

I emailed Myra McClure to ask her whether they were using the same test, she replied:



And another reply:



Basically this is a test that going to give you a negative by the looks of it.

How can they say their test is reliable when they've never been able to find it?

Perhaps you could ask Ms McClure has she ever detected XMRV in any kind of patient?

 

[Knackered]

Perhaps you could ask Ms McClure has she ever detected XMRV in any kind of patient?

Yeah just have, I said I fail to understand how the test can be considered reliable when they haven't been able to find it in anyone.

 

[valia]

Anyone VIP dx people thinking of going to IC to prove a point please do not.


You could risk the DWP finding out about a negative test, your doctors believing the IC test and the IC is not to be trusted, look at how they've handled the media so far.


Please, I'm with Koan and I'm chained to the wheel of the bus, please don't do this.

Second thoughts, I'm with Koan too, noone could risk putting themselves into their and Wessely's hands

 

[thefreeprisoner]

"The more you play these type of games the more severe the damage to the reputations of all involved will be quite soon."

I must admit, I know you're angry Muffin (and you have every right to be) but if I were on the receiving end of this email, I would think "Uhoh, fruitloop alert" and be a bit scared.
It sounds like a threat.

Please, everybody, be careful what you write to researchers. It will just turn this thing into a war and make them even more determined to prove that PWME are all nutters.

Rachel xx

 

[froufox]

Hi Rachel, thanks I do agree with you although I wasnt being completely serious it was more of gut reaction to Mark's post. Although I guess I suggested sending it as a 'joke' rather than an 'attack' as such.. given that them offering a test is a bit of a joke in itself ! Yes would have to leave those names out anyway. Anyway I think we are definitely best served by spreading the word around the net and to media outlets for people not to have this test done.

I don't think we ought to send this to them directly.
White, Chalder and Sharpe are not publicly associated with it (yet).
Much as it is really fun, we already have a reputation for abusing ME researchers; let's not frighten off any more talented scientists.

Rachel xx

 

[Katyak]

HAVE YOU got something you absolutely have to look for, but really, really, really don't want to find?

ARE YOU a healthcare professional with client populations in desperate need of the kind of reassurance only a negative test result can provide?

DO YOU stand to lose a whole lot of money and credibility if half a million people you said were malingerers turn out to have an infectious retrovirus?

If you answered "Yes, oh god please, help me, help me" to any of these questions, then you obviously need a world class Retrovirus Insurance Policy. Luckily for you, the solution to all your problems is at hand: the world's very first Express XMRV Negative Test from Weasely, Whitewash, Chaldatan and Sharke.

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Do away with expensive False Positives!

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Why spend extra on expensive foreign tests full of false positives when everybody knows there's no XMRV in the UK anyway?!

Order the WMI's 'XMRV' Negative Test Express Today and claim your 67% discount!

Hurry - this quite literally unbelievable offer simply cannot last!


​

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Weasely, Whitewash, Chaldatan and Sharke.
Because sometimes, a negative finding can be a positive result...

LOLOL. Absolutely masterful.

 

[sproggle]

We would, however, be interested to hear from anyone in the UK who does decide to have an XMRV test.

Have any of the UK positves been in contact with the UK ME charities?

It seems like the MEA is interested to hear from people and might help to get the word out that XMRV is in the UK!

Jan xx

 

[JAS]

Just picked this up and nearly choked to death on my Peppermint Tea!!! (not doing caffeine!) WHAT!!! I think the people that we can potentially trust who are serious about finding out the truth of XMRV in the UK are for example: Jonathon Kerr, St George's University, London and Ellie Barns, MRC, Oxford, who have been prepared to research it thoroughly and work with the WPI (on one of Judy's slides). I do think that we need to sideline the IC and actually we have the power to do that by no-one testing with them. Either the IC are panicking or desperately trying to control this, suspect the latter...either way I don't trust them! jx

 

[Martlet]

Thank you doogle BUT NO WAY are Imperial College London getting my blood. Even if you were all to club together and pay me a billion pounds to do so..

Aw, not even for a billion? I know, I'll have mine tested there for a mere million, then I could afford a proper test afterwards.

 

[Gerwyn]

Shame there's no contact form, I was going to write,




"Are you kidding?"

Fully validated in house Ha Ha Ha Ha! Someone has obviously missed their vocation as a stand up!

 

[Kati]

I emailed Myra McClure to ask her whether they were using the same test, she replied:

Originally Posted by Myra McClure
Our test was always reliable

And another reply:

Originally Posted by Myra McClure
The paper and the website clearly state that we cannot detect XMRV in UK CFS patients. The sensitivity of our assay is 1 copy. It cannot be made more sensitive.


Basically this is a test that going to give you a negative by the looks of it.

How can they say their test is reliable when they've never been able to find it?

This is a very important piece of information. McClure is showing us her real colors, she is standing by her test, and not willing to keep an open mind that she may not have the right technique, the right primers, the right amount of DNA, etc...

Mrs McClure, if you are reading this, Dr Judy Mikovits is open to help people finding the virus. She can take your samples -providing they are from certified ME patients (in the right amount) and show you the way to the virus... judym@wpinstitute.org By doing so, it will instantly help your career and credibility.

 

[xanadu]

Imperial/King's bus campaign to go with new test

 

[Knackered]

This is a very important piece of information. McClure is showing us her real colors, she is standing by her test, and not willing to keep an open mind that she may not have the right technique, the right primers, the right amount of DNA, etc...

Mrs McClure, if you are reading this, Dr Judy Mikovits is open to help people finding the virus. She can take your samples -providing they are from certified ME patients (in the right amount) and show you the way to the virus... judym@wpinstitute.org By doing so, it will instantly help your career and credibility.

Email her Kati, I would but it seems she didn't respond to my last email, maybe I'm in her spam filter.

m.mcclure (at) imperial.ac.uk

Maybe Judy could email her? Or she could email Judy?

 

[George]

Imperial/King's bus campaign to go with new test

OMG that's some awesome photo shop work! LMTO Thanks for that!
Mark I just about choked on your advertisement for the XMRV test.
You guys are on a roll!

 

[Hysterical Woman]

Two BIG scores for Xanadu and Mark!!!!!!!!!!!!

 

[Mithriel]

I wouldn't send any emails to Imperial college except very polite ones. The only bit of information that has reached the virologists at my husband's lab is that IP received hate mail after they published their research. They did not know anything about what that research was or why we were angry.

We are fighting a war, people, and mustn't give the other side any ammunition against us. It is getting dirty - I strongly suspect their motives - so we have to be smarter no matter how angry we are.

The whole sordid plot is becoming clearer. The rushed research paper is being given centre stage despite it's shortcomings and now their is going to be a test available just in case CFS in the US is confirmed as XAND.

Mithriel

 

[xanadu]

OMG that's some awesome photo shop work!

Thanks George, but I can't take credit for the software. You can make your own doggy campaign slogans here: http://ruletheweb.co.uk/b3ta/bus/?s...UK&s2=NOW+STOP+WORRYING&s3=AND+ENJOY+YOUR+CBT

 

[thefreeprisoner]

I wouldn't send any emails to Imperial college except very polite ones. The only bit of information that has reached the virologists at my husband's lab is that IP received hate mail after they published their research. They did not know anything about what that research was or why we were angry.

[snip, my emphasis added]... we have to be smarter no matter how angry we are.

I #2 this.
The more PWME who send threatening, sarcastic, abusive or even slightly derogatory emails to researchers working on studies whose findings we don't like, the longer we will spend in limbo. The more psychiatrists feel justified in putting us in the box marked unstable.

Come here and vent, but please don't vent at Imperial College. That will achieve precisely 0. Remember Judy M and Nancy K's warnings to us not to get all riled up when things like this happen. Everybody breathe....

Rachel xx

 

[thefreeprisoner]

Xanadu that is awesome!

Rachel xx