• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Imperial College now offering PCR XMRV testing

julius

Watchoo lookin' at?
Messages
785
Location
Canada
It occurs to me that once it is clear that XMRV IS found in UK, the government and its psychiatrists may need to send those claiming to have ME to be tested for XMRV. What better lab than the one that has "failed" to find it?

I don't see it. That would be just asking for trouble. XMRV is not yet verified as the cause of CFS, but it is verified as a new human pathogen. And it can be detected. If you knowingly offered a faulty test, you would be in a lot of trouble. Like prison trouble.

This whole thing is so bizarre. It's like the Chewbacca defense. It just doesn't make any sense!
 

Doogle

Senior Member
Messages
200
What if this group were to pass the hat for joyscobby or DysautonomiaXMRV to be tested by Imperial College PCR XMRV? If one of these people were able and willing, and could give the group an idea of the cost of dr's fees and testing, and if Cort was willing he could set up a fund and when the amount is reached send the money to the appropriate person. It would put to rest the Wessely cohort question, maybe more.
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
What if this group were to pass the hat for joyscobby or DysautonomiaXMRV to be tested by Imperial College PCR XMRV? If one of these people were able and willing, and could give the group an idea of the cost of dr's fees and testing, and if Cort was willing he could set up a fund and when the amount is reached send the money to the appropriate person. It would put to rest the Wessely cohort question, maybe more.

If you guys do this, count me in!
 

valia

Senior Member
Messages
207
Location
UK
It occurs to me that once it is clear that XMRV IS found in UK, the government and its psychiatrists may need to send those claiming to have ME to be tested for XMRV. What better lab than the one that has "failed" to find it?


This is exactly what they do with Lyme disease, most only receive positive tests from abroad, as NHS tests are nearly always negative
 

valia

Senior Member
Messages
207
Location
UK
What if this group were to pass the hat for joyscobby or DysautonomiaXMRV to be tested by Imperial College PCR XMRV? If one of these people were able and willing, and could give the group an idea of the cost of dr's fees and testing, and if Cort was willing he could set up a fund and when the amount is reached send the money to the appropriate person. It would put to rest the Wessely cohort question, maybe more.

Great idea if joyscobby and DysautonomiaXMRV are willing of course, big ask!
 

flex

Senior Member
Messages
304
Location
London area
Dr Steve Kaye
Senior Virology Research Officer

Professor Myra O McClure
Professor of Retrovirology

I'm just putting it together that Steve was one of the authors of the UK study. This all has me scratching my head. More than usual, I mean.

I am just wondering, by a very long shot, whether the two guys above are trying to distance themselves from the original study. They did state that CFS is an organic disease after that study, but just said that they didn't find XMRV.

"If it was there, we would have found it". It wasn't there because of the cohorts.

They were given the original samples by Wessely and they are not Psychiatrists. They may be trying to distance themselves as it seems the game may already be up, what with the Reeves issue and the WPI findings.

Also does the IC want such bad publicity when the whole issue is exposed.

Don't scientists want to be at the cutting edge of science. They should however be made to do blind and spiked studies.
 

MEKoan

Senior Member
Messages
2,630
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
 

gracenote

All shall be well . . .
Messages
1,537
Location
Santa Rosa, CA
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

Koan,

You might try asking them first. Might spare yourself a bus crush. We kind of like you. Kind of a lot.

:hug:
 

MEKoan

Senior Member
Messages
2,630
:ashamed: Ok, I'll ask but no matter what the answer, they better not try going on the bus! :D

:hug:
 
K

Knackered

Guest
Can someone who is more informed than myself hazard a guess as to why they're doing this? I don't know whether it's a good thing or not, what worried me is there is no suggested criteria regarding who should be tested, nor have they been able to demonstrate their ability to detect the virus.
 

Kati

Patient in training
Messages
5,497
Can someone who is more informed than myself hazard a guess as to why they're doing this? I don't know whether it's a good thing or not, what worried me is there is no suggested criteria regarding who should be tested, nor have they been able to demonstrate their ability to detect the virus.

!. Ego
2. Financial gains
3. They think they may offer a "valuable" service to the UK population
4. They may think that the next sample will be the positive one (???)
5. Perhaps they were told by the someone to offer the test (speculation: Wessley, governments, insurance companies, other doctors)
6. They may think they need to refine their techniques and the best way to do it is to charge patients for it
7. They want to prove to the Americans that they too can offer a XMRV test to their populations
8. All of the above?

Anyone else?
 
Messages
53
Location
Utrecht (Netherlands)
In my most cynical mood: Anyone in the UK who is not familiar with IC's test results of zero XMRV, might in their innocence have themselves tested at IC.

The result will of course be negative. So for Wessely c.s. there is one more patient who is XMRV negative. So there is no need for healthcare or disability benefits other than CBT for people with ME or XMRV or whatever you want to call it. Is serves their purpose exactly!!!!

In this way Wessely c.s. just go on denying the existence of XMRV.

That is the only way I can see it. It is not so very nice.

bettine
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
Kati;42930]!. Ego
2. Financial gains
3. They think they may offer a "valuable" service to the UK population
4. They may think that the next sample will be the positive one (???)
5. Perhaps they were told by the someone to offer the test (speculation: Wessley, governments, insurance companies, other doctors)
6. They may think they need to refine their techniques and the best way to do it is to charge patients for it
7. They want to prove to the Americans that they too can offer a XMRV test to their populations
8. All of the above?

Anyone else?

They now realise that they have been used by Wessley for his own political agenda, and they want to save face by being the first UK lab to prove XMRV is here. :innocent1: :tear:

Well, it's nice to dream. Just the small matter though of their complete inability to find the thing. :eek:

If you have already stated that the whatsit you are going to test for isn't here, and then charge 200 from a patient to test for said whatsit, isn't that ...um....fraud? :ashamed: Or perhaps not. Ignorance is no excuse in the eyes of the law.Caveat emptor

Do you think perhaps they/Wessely are trying to corner the world market in testing?. :D :eek:

I look forward to hearing our fiery Dr Judy's comments on this little pearl that gracenote found. Personally, I think they need to go to their friendly neighbourhood psychiatrist for a reality check. :cool:
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
A Little Riled

No causal link between infection and any human disease has been proven and the association between XMRV and prostate cancer or CFS remains controversial [4-6].
Good Lord, what a ridiculous statement! Seems everybody knows that no causal link has been proven. Also, I don't believe anybody knows what the exact association is between XMRV and CFS, so I don't see any controversy there.

What appears to me to be controversial is the authors' inference that there is no association between XMRV and CFS. Seems when 99 out of 101 PWC test positive for XMRV using WPI's testing techniques and validated elsewhere, and this finding is published in Science, then it sure seems to me there is an association.

What it seems the authors are saying, and what they believe is controversial because they've made it so, is that they don't believe the WPI XMRV testing was accurate. If that's what they meant, then have the ba**s to say it. Jeez!

Time: 11:33 pm Pacific Time
Date: Feb. 4, 2010

Time and date posted for posterity: Wayne got a little riled! :D (Good one Martlet!)

OK, I'm done. :D
 
Messages
5,238
Location
Sofa, UK
Historic XMRV Negative Test Unveiled!

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.

The only XMRV Test in the world to offer 100% guaranteed results!

Do away with expensive False Positives!

The Weasely-McCure-Inferial (WMI) test guarantees you absolutely no false positives - or your money back!

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!


Peace of mind, and long-term financial security, for just 200 per subject? Trust the professionals - Weasely, Whitewash, Chaldatan and Sharke are the sole licensed customers and suppliers of the WMI's Express XMRV Negative Test, bringing with them the reassurance that comes from a long and spot-less record of failing to find sufficient evidence for X.

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

thefreeprisoner

Guest
Oh, my aching sides!!!
Mark I think this deserves an update to my sig :) - genius.

Rachel xx