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WPI UK XMRV testing/study

K

Knackered

Guest
I was diagnosed as Moderate to Severe ME in 2004.
Am I correct in thinking that some of those included in the XMRV UK tests do not have ME/CFS ?
They are perhaps partners parents etc.!
If so, how would we know what percentage were actually ME/CFS sufferers. This could also affect the final analysis.
To those who have already tested at Ashford - Do we have to confirm we have the illness?
Maybe I have got this all wrong - happens these days.
Tricia - confused in N Oxfordshire.

This study's just to prove XMRV is in the UK.
 

Countrygirl

Senior Member
Messages
5,429
Location
UK
I was diagnosed as Moderate to Severe ME in 2004.
Am I correct in thinking that some of those included in the XMRV UK tests do not have ME/CFS ?
They are perhaps partners parents etc.!

Hi Tricia,

Yes, you are right. Some family and household members are being tested as well.
If so, how would we know what percentage were actually ME/CFS sufferers. This could also affect the final analysis.

One of the two aims of the study is to prove that the rate of XMRV infection is not 'Zero' in the U.K. The second aim is to prove that an independent lab can find XMRV, if they follow the WPI instructions.
To those who have already tested at Ashford - Do we have to confirm we have the illness?

No. See above. The study is not to find XMRV in ME, but in the U.K.

C.G.
 

Adam

Senior Member
Messages
495
Location
Sheffield UK
I didn't get an email either! I could easily get a lift to Manchester. I wonder whether they've got me down for a homedraw too?

Has anyone else not recieved an email? I'm wondering whether I should get in contact with them.

I haven't got email Knack, but I put down for home draw.

Don't know what to say for best.
 

maryb

iherb code TAK122
Messages
3,602
Location
UK
Adam people who have requested a home draw haven't been contacted yet according to how the e-mail reads.
 

Adam

Senior Member
Messages
495
Location
Sheffield UK
Adam people who have requested a home draw haven't been contacted yet according to how the e-mail reads.

Thanks MaryB. It's tough waiting for this. It feels like the last chance saloon to me. I'm 47 and had this damn thing for 14 years. The last year I've had a downturn overall. I'd just like to give it name other than CFS!

Thanks for the reassurance.

Adam
 

mermaid

Senior Member
Messages
714
Location
UK
Hi everyone. Just caught up with this. I haven't had an email either but have had all the previous ones and at the outset said that I almost certainly would need a home draw as I would likely be too far to travel to a centre.

Just out of interest which is the nearest place to Penzance being provided this time (that's the far west of Cornwall)? I always thought it could be Bristol but I haven't heard that place mentioned so maybe even further?
 
S

sunlady

Guest
XMRV testing

I have not received an e-mail from Judy yet, but she has already asked to test as many of our family members as possible.

I have had ME (ccc) for more than 35 years.
Both my sons have autism, one also has ME.
My mother died of Chronic Myeloid Leukaemia and her sister also has it.
My sister also has ME.

Judy seems very interested in our family disease history.

I pray for some answers so that I can have my life back and so that my children can be kept as safe as possible.
 
Messages
74
UK Study?

I thought the draws for the WPI UK study were completed in March and April? At least I remember a lot of talk about people from the UK being signed up to give blood? This was in the weeks following the second and third negative studies. Are these two separate issues or was the study delayed?

It was my impression that the UK study, or at least the blood-draw stage, had concluded? Any UK people out there--is this all the same thing? Or two different things, maybe the talk from months earlier referred to some study they were doing that was more informal?

TC!
 

sproggle

Jan
Messages
235
Location
Teesside, England UK
I thought the draws for the WPI UK study were completed in March and April? At least I remember a lot of talk about people from the UK being signed up to give blood? This was in the weeks following the second and third negative studies. Are these two separate issues or was the study delayed?

It was my impression that the UK study, or at least the blood-draw stage, had concluded? Any UK people out there--is this all the same thing? Or two different things, maybe the talk from months earlier referred to some study they were doing that was more informal?

TC!

Only the first 50 samples (out of 200) were taken, then when they were trying to schedule the next lot of draws the Icelandic Volcanoe eruption happened and everything got put on hold...
 

sproggle

Jan
Messages
235
Location
Teesside, England UK
mermaid the locations currently listed are Ashford, Cheshire, Chester, Manchester, Sunderland, Gloucestershire, Northern Ireland, Liverpool, Surrey, South Shields, &Essex

@sunlady sorry to hear your family is unfortunate enough to have so many diseases, I can see why Judy wants to test you all &I really hope it leads to treatment & a better future for you all xxxxxxxx
 

mermaid

Senior Member
Messages
714
Location
UK
Thank you for the info Sproggle. That confirms my thoughts that the collection point would be too far for me anyway! I will await further instructions hopefully re a home collection.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
Anyone down for a home draw been contacted yet? Just wondering as im really not well at the minute so I havent been on here much or facebook. I am really struggling with the comp at the minute. thanks
 

bullybeef

Senior Member
Messages
488
Location
North West, England, UK
There's isn't much to tell yet polly. I believe Ed is in the country with is wife to oversee the testing process. They still haven't finalized the locations. I had notice you hadn't been around much, and I was going to PM you when some important news develops.
 

pollycbr125

Senior Member
Messages
353
Location
yorkshire
There's isn't much to tell yet polly. I believe Ed is in the country with is wife to oversee the testing process. They still haven't finalized the locations. I had notice you hadn't been around much, and I was going to PM you when some important news develops.

thanks Bully I'll PM you on here
 

Adam

Senior Member
Messages
495
Location
Sheffield UK
Anyone down for a home draw been contacted yet? Just wondering as im really not well at the minute so I havent been on here much or facebook. I am really struggling with the comp at the minute. thanks

Polly

I haven't had an email yet. I go away in couple of weeks (for 1 week) and am hoping to hear before then. Sorry to hear you are in a bad way.

take care

Adam
 

cfsme23

Senior Member
Messages
129
Location
England
Any news on when the 'Ashford 50' might be hearing...I thought originally the idea was July and that is fast approaching?!