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WPI UK XMRV testing/study

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pollycbr125

Senior Member
Messages
353
Location
yorkshire
bullybeef said:
According to the XMRV UK website/forum, one person already knows they are positive.
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i believe that person was tested previously bully and thus they are helping to set up the further testing of uk folks . as far as i am aware no results from this study have been issued either personally or officially .
 
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bullybeef

Senior Member
Messages
488
Location
North West, England, UK
pollycbr125 said:
i believe that person was tested previously bully and thus they are helping to set up the further testing of uk folks . as far as i am aware no results from this study have been issued either personally or officially .
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Yeah, that's what I thought, polly. It seems strange for someone to post previous results in answer to a poll that in for future test results. I confused.com!!!
 
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eric_s

Senior Member
Messages
1,925
Location
Switzerland/Spain (Valencia)
fred said:
It would not be great. It would be unprofessional. We have to wait until the findings are published in a peer reviewed journal and/or until the WPI makes a formal interim announcement.
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I don't know. I don't know how the customs in that area (natural sciences or however this is called in english) are. The leaking of information is something that happens often, in politics, in business etc. Currently she and the WPI are in a battle against the camp of Nijmegen and also they are partly relying on our funds and asking for them. The other side does not hesitate to publicly state their position and sometimes, in my opinion, even does this in an illegal manner (i'm referring to the latest dutch newspaper article posted on this forum).
Dr. Mikovits so far has not at all been reluctant to defend her work and she has very early very clearly taken position regarding the presence of XMRV in CFS patients and the XMRV/CFS association. If i remeber correctly she has also stated (probably one or two months ago, i think it's in the Q&A on the WPI site) that in all the samples tested so far (around 300 or 400), including samples from all over the world, the same percentages as in the Science study are holding up. So she has done that before, i mean to communicate that sort of information outside of a paper published in a scientific medium. If the methods applied in those tests are the same as they have been using before and have thus been reviewed already, i don't see any problem in releasing such an information. But of course i respect their right to choose to do so or not. I, for myself, think i would do that, if i'm confindent about what i'm doing. Not an exact number, that would be unprofessional, because the number is likely to change if only few samples have been analized so far, but a general statement, wheter they are getting about the same ratio as in their Science study. Something like "we are getting zero percent", "we are getting around 50%" or "we are getting a ratio higher than 80%". Of course coupled with a "disclaimer" that this is not the final result and that one should not draw any conclusions from it at this point. But it would take the wind out of the sails of their opponents in a way and it would comfort us a lot. There is mostly "negative" information being released at this moment, opinions by the Nijmegen people and negative studies, so i feel it would be good to be out there with some positive info too, if it is there.

Either way, what matters is the outcome in the end. We will see and i hope they are right.
 
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Emma_Lee

Messages
2
Has anyone heard anything from the phlebotomy company about when/where the next draw is going to be? I emailed at the end of last week because I am moving house soon and haven't heard anything yet... I'm so impatient!
 
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pollycbr125

Senior Member
Messages
353
Location
yorkshire
Emma_Lee said:
Has anyone heard anything from the phlebotomy company about when/where the next draw is going to be? I emailed at the end of last week because I am moving house soon and haven't heard anything yet... I'm so impatient!
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we should be hearing something next week Emma hang in there i know its tough . :Retro smile:
 
fingers2022

fingers2022

Senior Member
Messages
427
pollycbr125 said:
i believe that person was tested previously bully and thus they are helping to set up the further testing of uk folks . as far as i am aware no results from this study have been issued either personally or officially .
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Hi folks.

I personally set up this poll.

It is my understanding that some people in the study have been tested previously, and this is why I included the option to declare known positive or negative before study results are notified. Without this option, it wouldn't make sense.

I hope that clarifies.

Steve
 
V

VillageLife

Senior Member
Messages
674
Location
United Kingdom
The ash cloud looks set to return for the start of next week.... http://news.bbc.co.uk/1/hi/uk/8684540.stm


volcanocopy.jpg
 
Adam

Adam

Senior Member
Messages
495
Location
Sheffield UK
Yorkshire Lass in desperate bid to get to Reno found in steerage

pollycbr125 said:
NOOOOOOO at this rate im going to have to stow away on a boat to Reno :;)

i wonder how long it would take me to get there :D:
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It depends on the size of boat, prevailing winds, size of paddles.

Do they do paddles in your size Polly? :tear:
 
jace

jace

Off the fence
Messages
856
Location
England
It's the jet stream that counts here, at present it's blowing to the UK from the North West. This is not going to last long, according to predictions, by Tuesday we are into a SW stream. Where's the 'fingers crossed' smilie?
 
Cookie Monster

Cookie Monster

Messages
76
Important message from dr.mikovits

(Info copied from xmrvweb.me.uk)

This is a research study to answer the hypothesis that XMRV incidence in ME/CFS in the UK is NOT zero. It is being done blinded in two independent labs and the results will not be uncoded until the study is complete. That is, until we complete the draws from all participants, test and analyse all of the data individuals will not learn of their results. It is simply NOT possible. We have already received numerous emails from people drawn in the first ~50 who are asking for results. It must be made clear that this is NOT the intent of the study. The time it takes me/PSI to answer these emails prevents us from getting our work done, creating more delays in arranging the additional draw groups.
We are doing everything possible to complete the draws expeditiously but we cannot control the volcanic ash and must insure that the sample is received in a timely manner or the results will not be valid. We certainly appreciate how much and long this community of patients has been neglected but we cannot make up for decades of neglect and abuse in a single month. If we don't carry out this study adhering to every protocol for privacy for the participants and security of the data, the study will be invalid.
 
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Knackered

Guest
Cookie Monster said:
(Info copied from xmrvweb.me.uk)

This is a research study to answer the hypothesis that XMRV incidence in ME/CFS in the UK is NOT zero. It is being done blinded in two independent labs and the results will not be uncoded until the study is complete. That is, until we complete the draws from all participants, test and analyse all of the data individuals will not learn of their results. It is simply NOT possible. We have already received numerous emails from people drawn in the first ~50 who are asking for results. It must be made clear that this is NOT the intent of the study. The time it takes me/PSI to answer these emails prevents us from getting our work done, creating more delays in arranging the additional draw groups.
We are doing everything possible to complete the draws expeditiously but we cannot control the volcanic ash and must insure that the sample is received in a timely manner or the results will not be valid. We certainly appreciate how much and long this community of patients has been neglected but we cannot make up for decades of neglect and abuse in a single month. If we don't carry out this study adhering to every protocol for privacy for the participants and security of the data, the study will be invalid.
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I thought everyone knew they wouldn't get their results until the end of the study? It's been talked about over and over on this forum, I bet Judy's sick of hearing it.
 
bertiedog

bertiedog

Senior Member
Messages
1,738
Location
South East England, UK
InvestInMe Conference

Do people hear think its likely that Judy will mention the percentage of positives in the Ashford 50 when she talks at the Invest In Me Conference next week? Or do you think she just won't mention it?

Pam
 
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