WPI UK XMRV testing/study

R

Robin

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First I want to say I'm glad for all of you who got in!

However, I'm a little concerned:

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 just hope she blinds her samples, defines her patients well, and uses controls. Without that, I'm doubtful the British researchers will be convinced of anything, and it will be another back-and-forth sniping match. :(
 

Kati

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First I want to say I'm glad for all of you who got in!

However, I'm a little concerned:



I just hope she blinds her samples, defines her patients well, and uses controls. Without that, I'm doubtful the British researchers will be convinced of anything, and it will be another back-and-forth sniping match. :(
Robin, Dr Mikovits is astute and knowledgeable about scientific process and methodology.
 

Esther12

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I just hope she blinds her samples, defines her patients well, and uses controls. Without that, I'm doubtful the British researchers will be convinced of anything, and it will be another back-and-forth sniping match. :(
I'd really love to have proper published results of a blinded study from them. The WPI seem so sure of themselves, and this would be a good way of spreading the confidence if it's really justified.
 

Countrygirl

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valia;54419]I emailed twice before getting a reply, good luck flybro
I e-mailed three times! It pays to be persistent. It may have been coincidence, but I didn't receive a reply until I gave Dr Judy quite a bit of information about my illness.

I do hope you're accepted.

Good luck!

BW,

C.G.
 

bullybeef

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I actually mentioned in my email to Judy some specific family issues why I would like to be selected for the test. She replied by agreeing to test both myself and my wife, who doesn’t have ME as far as we know. It maybe worth saying something specific.
 

coxy

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stangely i didn't mention anything much, just that i'd like to take part and the name of the doctor who diagnosed me, plus that i have 2 children with it that i don't want testing at this time, she replied almost immediately, luck i suppose
 

Countrygirl

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=coxy;54438]stangely i didn't mention anything much, just that i'd like to take part and the name of the doctor who diagnosed me, plus that i have 2 children with it that i don't want testing at this time, she replied almost immediately, luck i suppose
Not luck, coxy. You gave her very important information! Two children with it! No wonder Dr Judy wanted you on board!
 

coxy

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i've actually just been a bit cheeky and emailed her back with a lot more detail of our situation to see what she thinks. I was just so shocked to get an immediate reply to my original email from her after never having any doctors respond personally, that i just couldn't resist getting her opinion. I apologized to her as i know she is so so busy, fingers crossed i'll hear back with her thought.
 

Sasha

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Oh, yes - you're right, there was a thread on it called "All in the UK". Still not too many details but their list is full. Looks like we'll have to wait and see...
 

bullybeef

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The following was posted on the UKs Invest In ME charity page on Friday:

See: http://forums.aboutmecfs.org/newreply.php?do=postreply&t=3605

Invest in ME Press Release

Funding of Biomedical Research into ME

In December 2009 Invest in ME 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.

The supporters of IiME, those who fund and those who provide moral and other support, are the finest in the ME community. These supporters remain, for the most part, anonymous yet they continue to be the source of our determination to continue to campaign for biomedical research and raise awareness and improve education about myalgic encephalomyelitis.

Therefore, 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.

Invest in ME will continue to campaign for biomedical research into ME and we hope to be able to fund more such work in the future.
Many of us on facebook have suggested this funding is for this new study. The timing seems too perfect.
 

Countrygirl

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fingers;54508]Not at all, Flybro, we Endlanders are a pretty phlegmatic bunch, actually.
And our population is growing!:DAfter a long and sometimes heated debate that lasted well into the night, the board of immigration of Endland has decided to confer honourary membership on mermaid. She freely confesses to not being a blood-born member of the Domnonii, but we are in need of comrades in arms and all applications will be seriously considered. (Trouble is, we are all a bit wobbly on our pins, and this laying seige malarky is rather knackering!)

Welcome, mermaid. Just remember rule number one: At the sight of any stray English crossing into our territory, or, worse, a proven grockle, you must inform them that Meea navidria cowzasawzneck'

I do hope that you can communicate reasonably fluently in our language. If you are still struggling with it, the above simply means you cannot speak Saxonage. I'm sure you'll be up to speed before long. Not sure of the direct translation of Zenotropic Maurine Retrovirus-related virus is, though. :confused: I'll confer with fingers.


Oh, did I forget to tell you about the initiation ceremony........I'll PM you.
 
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WOW!
I emailed Judy about an hour ago . She's just replied & said I'm to be included in the study. I explained I have FM / CFS & she said it's important to look at overlapping diseases as well. A Phlebotomy Service will contact me to arrange a blood draw.

If I have to travel for the blood draw it could present a problem but let's see what happens.

Anyone heard where / how they will take the blood?
 
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Judy told me Diva that they would come to my home if I wished.

Jenny
Hi Jenny
Thanks for letting me know - that service seems too good to be true. The cost of doing that must add up a lot.

Seems still to be a general test to establish if XRMV exists in the UK rather than pinpointing ilnesses but I wonder if we would get a follow up questionnaire to establish at least some form of groupings.

Have you asked if we will get individual results?
 

Jenny

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Yes, Diva, she said we would get our individual results by letter.

I wondered if there would be a questionnaire - seems odd otherwise - they could be testing anyone.

Jenny
 

ukxmrv

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We will get individual results (I asked).

Something to consider is where you would like your results sent to and what the impications will be of this. (i.e. NHS results on your GPs records)
 

coxy

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hi, yes i was told they'd come to my house to aswell, so i'll definately take them up on that. I was interested on the comment you made ukxmrv about where our results will be sent i.e GP. Are you saying it's a good idea to get them sent to the GP or a bad one? Sorry i'm not capable of thinking for myself at the moment, if there is a subset for the brain dead type, i'd definately be in that one!!!!