• 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.

WPI UK XMRV testing/study

flybro

Senior Member
Messages
706
Location
pluto
So does anyone believe this is a follow up study to prove prevalence in Europe and the UK? It seems a huge coincidence that on the day the UK ME charity, Invest In ME chose to fund the WPI, and then they ask for test subjects from the UK.

I wondered about this too.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
"Invest in ME to fund WPI study of XMRV in UK/European patients"

Mar 5, 2010 - In December 2009 Invest in ME (www.investinme.org) announced its plans to attempt to fund research by Dr. Jonathan Kerr. This was in conjunction with the charity ME Solutions, and we wished to maximise the opportunities to fund research into ME/CFS. The research project was:

"The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors

Recently Dr Kerr informed us that he was withdrawing the grant application, as a study in which he was involved has shown no XMRV in ME/CFS patients.

This now means that the fund-raising for this particular project will be halted.

Invest in ME have contacted those supporters who have donated funds specifically to aid this particular project and we have offered to refund the donations. We are happy to announce that all our supporters have requested that we retain the funds donated and use them for biomedical research."

http://www.prohealth.com/library/showarticle.cfm?libid=15201&utm_source=SiteTracking&utm_medium=SiteTracking&utm_campaign=home_LatestNews
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Here's a link to the same news posted on the Invest in ME website:
http://www.investinme.org/IIME Biomedical Research 2009 12 01-X.htm

From Invest in ME website:
"...we are planning on helping the Whittemore-Peterson Institute directly by offering to fund some important work on XMRV in UK/European patients. We know this may not be a massive contribution in the grand scheme of things but we feel it is important to give as much financial support, and all the moral support that we can at this time to the WPI and their research colleagues. We hope to have more news soon."
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
It wil be interesting to see the results of this study.

The selection criteria seem to be:

UK residence
Phoenix Rising membership
Phoenix rising forum frequent visitor
Fast e-mail responder

Am I missing anything?

The analysis could get complicated.

I don't think the criteria have anything to do with membership of this board, fingers, as I had an email about it from another source.

I've had an email from Judy saying I'm on the list. They'll come to my home to get blood if I want, and I'll get the results.

Jenny
 

coxy

Senior Member
Messages
174
does anyone know if they are using an improved test to the other uk studies that have shown up nothing?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
The WPI have put a request out for UK people to contact them for XMRV research. Maybe IiME are funding that? Good news anyway
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
=fingers;53831]It wil be interesting to see the results of this study.

The selection criteria seem to be:

UK residence
Phoenix Rising membership
Phoenix rising forum frequent visitor
Fast e-mail responder

Am I missing anything?

The analysis could get complicated.

Fingers is absolutely right! :D I have fulfilled his criteria exactly, and it worked! We inhabitants of Endland (for those of you sharp eyed enough to notice) are a bright and canny bunch.

Just to let you know that 50% of the population of Endland :D is now being tested for XMRV. That's a very impressive percentage, ...................... until you realise that makes a grand total of one! Me! :D
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Maybe its just a trial to see if the independent lab picks up the same %age of XMRV as does the WPI, if half is going to each, they may just do a swop to check results?
 

Orla

Senior Member
Messages
708
Location
Ireland
Hi Joy, we might have to re-establish the Act of Union so I can get tesed in Ireland (south of the border) !! :D

Though you guys can keep the rubbish NHS fatigue clinics. ;)

This study could be very important I think in establishing XMRV in ME patients outside of the US

Orla
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
=joyscobby;54088]Just a little bug bear (in my case a big one :D) this is not an English study but a Uk one incliding Scotland Wales and Nothern Ireland if people are up to travel.

XMRV in Endland.

I'm so sorry if the mention of the newly created kingdom of Endland has caused offence to our fellow Celts up north. :tear:

We (fingers and I) are of the Domnonii tribe, the original Brits, occupying what used to be known as West Wales, having been driven here by the savage invading hords from across the water. A number of our brethren, particularly those the other side of the Tamar, actually consider England to be a foreign country and the flag of St George is referred to as the 'Butcher's Apron'. Every time we march on London and lay siege to Exeter (with very good reason, in our opinion) the English over-react and decimate our population, confiscate our lands and cripple us into near-oblivion with exortionate taxation.

While our fellow Celts keep threatening to break away from the foreign English, we have gone one step further and the newly created kingdom of Endland declared independence last night. ( I don't think the BBC have caught up with this piece of news as yet.)

The Domnonii have has much right to XMRV as our fellow Celts north of the border. Certainly no offence was intended.


:D:D:D
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
=joyscobby;54103]@ Countrygirl No offence taken but did not want to confuse our non UK cousins with this. Good luck with your new Kingdom :Sign Peace

:hug: from one Celt to another.

Thanks Joy.
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
WPI UK XMRV split-sample exercise

Cort wrote on his March 5th XMRV Buzz bulletin:

"WPI to do UK XMRV Study - A participant in the WPI's Facebook site reported Dr. Mikovits sent her an email stating: "We are having an independent phlebotomy company draw samples in the UK in the next two weeks if you or others would like to participate send me your addresses and contact info ASAP. samples will be split and shipped half to an independent trustworthy lab and half to the WPI to determine XMRV status exactly as in the WPI Science study.

Those who would wish to join this UK study please send your contact details to judym@wpinstitute.org. asap :) "

This seems a bit of an odd way to recruit to a study! But I'm not on Facebook and I'm reading it out of context. I can't see anything about it on the WPI website. Is it really a study?

Is the control lab a UK lab? I don't really understand the purpose of this. If it's to test interlab reliability within the States, why use UK blood? If it's a UK lab, why not make sure first that it can detect XMRV in WPI's existing XMRV+ blood samples?

Sorry, I'm just baffled but it's interesting! Can anyone shed any light?
 
K

Knackered

Guest
This was already posted yesterday, I think they're full up now and they're not taking anyone else on.

From what I've heard, it's to show there's XMRV in the UK and to show a UK lab how to find XMRV. I'm not sure though, someone else will know much more than me.
 

Kati

Patient in training
Messages
5,497
This was already posted yesterday, I think they're full up now and they're not taking anyone else on.

From what I've heard, it's to show there's XMRV in the UK and to show a UK lab how to find XMRV. I'm not sure though, someone else will know much more than me.


Who could be the independant lab? J Kerr? De Meirleir? S Goff?
 

ukxmrv

Senior Member
Messages
4,413
Location
London
Maybe Redlabs? They went to Reno for training. Working on developing the culture test using WPI protocols and hoping to get Serology test license as well.
 

Dolphin

Senior Member
Messages
17,567
It wil be interesting to see the results of this study.

The selection criteria seem to be:

UK residence
Phoenix Rising membership
Phoenix rising forum frequent visitor
Fast e-mail responder

Am I missing anything?

The analysis could get complicated.
McClure study involved people attending Wessely's CBT clinic. Dutch study involved people attending the Nijmegen centre as far as I know who take a similar approach. So not necessarily random populations.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
The entire population is to be tested for XMRV

joyscobby;54103 Good luck with your new Kingdom :Sign Peace:

Just to let you know that it was confirmed this morning that the entire population of Endland is to be tested by Dr Judy. The first nation on earth to be so.

:Sign Peace: to you Joyscobby and your fellow countrymen up north.

We won't invade you if you stay your side of the border. The sight of fingers and me being forced to scale Hadrian's wall in our Endland kilts to chase you back would not be a pretty picture and could cause serious psychiatrict disturbance in any straying highlander.

And to be honest, I haven't the energy for it anymore.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
On a more serious note, I have had a few e-mails from Dr Judy and she says that she is testing several hundred people in the UK to prove to British researchers that XMRV is infecting high numbers of us. I wonder if this also includes Dr Kerr? Dr Judy sounds convinced that if the study faithfully replicates WPI's techniques that it will be case proven. I so hope so.

She did say last night that they now have all the folk they need for the research.