• 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, 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

paddygirl

Senior Member
Messages
163
Irish testing

I had emailed Judy M ages ago when I heard of the UK testing. I offered to get to the UK to be tested, she replied, amazingly. I wish the Health Minister here was as accessible.

She said they hoped to test at some point soon in Ireland and that she would forward my email to the study co-ordinater.

Any advice on what to do? I don't want to keep bugging her and the WPI.

Thanks for any advice.

Paddy

Ps Isn't this amazing, world class scientists giving a shit about us and our own medical people laughing at us, literally.
 
Messages
19
I had emailed Judy M ages ago when I heard of the UK testing. I offered to get to the UK to be tested, she replied, amazingly. I wish the Health Minister here was as accessible.

She said they hoped to test at some point soon in Ireland and that she would forward my email to the study co-ordinater.

Any advice on what to do? I don't want to keep bugging her and the WPI.

Thanks for any advice.

Paddy

Ps Isn't this amazing, world class scientists giving a shit about us and our own medical people laughing at us, literally.

Hi Paddygirl,

I have sent you a pm on this matter.
 

Countrygirl

Senior Member
Messages
5,463
Location
UK
Will anyone on the UK study who has not had their blood drawn in England, please see the urgent new posts on the xmrvweb forum tonight. (Tuesday)

Thanks.

Countrygirl
 

Diva55

Member
Messages
164
Location
UK
Hi
I cannot access the forum - even though I've registered. I've not had my blood drawn though I'm supposed to be included in the study.
So you could update this list or even PM me.

I'd really appreciate it

Thanks
Will anyone on the UK study who has not had their blood drawn in England, please see the urgent new posts on the xmrvweb forum tonight. (Tuesday)

Thanks.

Countrygirl
 

Countrygirl

Senior Member
Messages
5,463
Location
UK
Hi
I cannot access the forum - even though I've registered. I've not had my blood drawn though I'm supposed to be included in the study.
So you could update this list or even PM me.

I'd really appreciate it

I'm send a PM now and I hope we can ensure that you gain access to the forum as there is some interesting information there for you to read. Do remember, of course, that it cannot be discussed outside of our secure forum for fear of compromising the study.

C.G.
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Hi Diva

I booked in for the London/SE draw last week, was told I'd get an email about the venue, but heard nothing. I wasn't included in the draw a couple of months ago either even though I've been accepted onto the study. I've just about given up with this - I've emailed Ed Cutler several times and get no response.

Jenny
 

Countrygirl

Senior Member
Messages
5,463
Location
UK
Hi Diva

I booked in for the London/SE draw last week, was told I'd get an email about the venue, but heard nothing. I wasn't included in the draw a couple of months ago either even though I've been accepted onto the study. I've just about given up with this - I've emailed Ed Cutler several times and get no response.

Jenny

Hi Jenny,

If you have not yet had your blood drawn, please go to our forum for information.

xmrvweb.me.uk

Warmest regards,

Jenny
 

Jenny

Senior Member
Messages
1,388
Location
Dorset
Thanks Jenny - I was on your site, but couldn't get on to the forum until last week for some reason. Am on now.

Jenny
 

Countrygirl

Senior Member
Messages
5,463
Location
UK
Urgent message Sunday 15th August.


Please will everyone on the UK study please visit the forum xmrvweb.me.uk for a message asap.

Unfortunately, if you haven't already joined the forum, we can't enable you to have access for a couple of weeks as our administrator is away.

Thanks,

Warmest regards,

Jenny
 

Tia

Senior Member
Messages
247
I had emailed Judy M ages ago when I heard of the UK testing. I offered to get to the UK to be tested, she replied, amazingly. I wish the Health Minister here was as accessible.

She said they hoped to test at some point soon in Ireland and that she would forward my email to the study co-ordinater.

Any advice on what to do? I don't want to keep bugging her and the WPI.

Thanks for any advice.

Paddy

Ps Isn't this amazing, world class scientists giving a shit about us and our own medical people laughing at us, literally.

Yeah, I've talked to her to. Really a FABOLOUS person that Judy.. Just the kind of person you immediately like. Scientists have all my respect now, doctors? Not so much.. if any at all. I think they're so kind and empathic towards us because the one scientist there have a daughter with ME who works part time but wants to be able to work fulltime and do all the things she'd like, so there's a mother in pain there who grasps what we all go through and really want to help us.
 
Messages
59
Location
Bognor UK
As Dr Mikovits is presenting an abstract of the UK study on Wednesday at the workshop, would any body care to speculate on the total % of XMRV MLVs positives from the UK study?

Perhaps Dr Mikovits could post Professor Wessely a nice postcard from Maryland, USA to Kings College, London kindly filling him in! :D