WPI UK XMRV testing/study

[Dolphin]

I take a hint that there's some frustration lying behind this dolphin but it seems very unfair - if I'm missing something let me know. There's a wider issue emerges from this for me that we're going to have to face sooner or later. What happens to those who are XMRV- ? Just to be clear: that's the people who remain chronically ill with something they thought was ME and don't have the right retrovirus, maybe have some other cause, maybe another HGRV, maybe something else, who knows? Still Medically Unexplained - I think we all know what that entails. It's worrying if everyone who tests negative is going to acquire a new army of born-again healthy people to add to their tormentors. I would hope for a little more solidarity.

Mark, the argument was nothing to do with this. I was not making any point about whether people who might not have a very clearcut case of ME/CFS should be taking part in this research. Nor was I saying people with an ME/CFS-type illness are less worthy if they are XMRV-negative. I could write more but perhaps it is better to leave it but I thought I could reply to that, which seems to misrepresent what I was saying and where I am coming from, without really bringing up the issue properly. You go on to say that you're not saying that's what the argument was about. But my (user)name is mixed in twice there so thought I'd reply.

 

[pictureofhealth]

As far as I know this UK study was simply set up to 'prove the existence of XMRV in the UK' rather than particular percentages in ME patients - so it was fully expected (as far as I know) that some people related to ME patients being tested might very likely 1. not have ME or 2. XMRV.

The study was NOT set up (as far as I know) to be a study specifically of 'UK ME patients' on the face of it anyway - I think this is because, being from outside the UK, the WPI would not legally have been able to gain ethics consent to get full medical and other details of UK patients from UK doctors, hospitals or other medical centres (without a UK research team being involved, which would have been tricky given the current climate here) - so they could only do what they would be covered to do legally - but I could be entirely wrong.

Also, as Dr Mikovits will be presenting these findings today, I'm pretty sure that 1. there will be many positive results 2. once she knew these results from the lab, she will most likely and sensibly have gone back and asked these UK 50 participants for any further details (which may or may not include their ME status).

We will hopefully have all these answers by the end of the week, or if she has to publish first - on publication.

 

[Bob]

As far as I know this UK study was simply set up to 'prove the existence of XMRV in the UK' rather than particular percentages in ME patients - so it was fully expected (as far as I know) that some people related to ME patients being tested might very likely 1. not have ME or 2. XMRV.

The study was NOT set up (as far as I know) to be a study specifically of 'UK ME patients' on the face of it anyway - I think this is because, being from outside the UK, the WPI would not legally have been able to gain ethics consent to get full medical and other details of UK patients from UK doctors, hospitals or other medical centres (without a UK research team being involved, which would have been tricky given the current climate here) - so they could only do what they would be covered to do legally - but I could be entirely wrong.

Also, as Dr Mikovits will be presenting these findings today, I'm pretty sure that 1. there will be many positive results 2. once she knew these results from the lab, she will most likely and sensibly have gone back and asked these UK 50 participants for any further details (which may or may not include their ME status).

We will hopefully have all these answers by the end of the week, or if she has to publish first - on publication.

Yes, I believe that you are absolutely right here, pictureofhealth... That is my understanding also...
Also, I believe that Judy Mikovits has a particular interest in testing family members too... This is part of her research interest, and so I think that she was quite keen to have family members on board as well.
I understand dolphin's frustrations because having family members on board suggests having a watered-down final percentage of XMRV positives in the results.
But I expect that Judy will be able to sort this out and clarify the situation when she presents the results.
This study was only set up to prove that XMRV exists in the UK, because none of the UK researchers have found any XMRV whatsoever in ME patients... Once the results have been presented (today at the conference), then hopefully this will give UK researchers the confidence to get involved.
This was never meant to be the most complex research project... It was just meant to show that XMRV exists in the UK... Personally I think we should be ultra-grateful for this... Well, I am anyway.

Dolphin, by the end of today's conference, let's hope that the WPI study will be just one amongst many, so any frustrations with the pace of research will be eased a little.
I think we are expecting quite a few XMRV research study results to be presented... Maybe 4 or 5?

 

[jace]

Also, as Dr Mikovits will be presenting these findings today, I'm pretty sure that 1. there will be many positive results 2. once she knew these results from the lab, she will most likely and sensibly have gone back and asked these UK 50 participants for any further details (which may or may not include their ME status).

She has indeed asked us for clinical details, by email, perhaps 4 - 6 weeks ago. It is rumoured that she is also doing/has done quantative testing (to find out the level of infection) on the Ashford 50 samples as well as just looking for evidence of MuLV's.

Originally, the WPI/Invest in ME study was to refute the McClure Imperial College study. Since the inception, the brief for the study has developed and expanded.

Since the blood draws took place in NHS facilities, well Ashford anyway, and those very fine people at IiME were onboard, in the UK, I doubt anything was done without the necessary protocols in place.

I'm soo excited! I just wish the Q&A at the XMRV workshop didn't start so late (10.15 pm - 00.45am, British summer time). Here's a link to the webcast http://videocast.nih.gov/summary.asp?live=9582

Happy Wednesday all.

ETA

 

[Starlight]

Sent from my iPad

..

I'm soo excited! *I just wish the Q&A at the XMRV workshop didn't start so late (10.15 pm - 00.45am, British summer time). *Here's a link to the webcast http://videocast.nih.gov/summary.asp?live=9582
ETA

I am the same. I think I'll have to stay clear of the webcast tonight because getting excited at that hour of the night would do my sleep no favours! Hopefully it'll be on YouTube tomorrow.

Pictureofhealth : that's the best nickname for a CFS patient EVER!!

I agree incidentally that it was odd and maybe unfortunate that Judy chose to include non cfs patients in the study at a time when there are limited funds available & a strongly positive UK study would be very beneficial to all. Hopefully the housebound sufferers will be included soon as data from them will surely be crucially important. Perhaps she had some reasoning behind widening the net or initially just wanted basic proof of xmrv existence ,maybe she thought a self selected cohort of Facebook users wasn't going to be the best basis for a serious study where percentages were relevant. Whatever it was Im sure that there's no better woman to put the data collected to good and creative use. It might have illuminated something unexpected for her.I can't help put have faith in her to use every bit of knowledge she can find to our advantage.

Happy Wednesday all.

 

[VillageLife]

Here is a clip I found, of the discussion of the UK studies at the XMRV Conference...

http://www.youtube.com/watch?v=G4yl_UgbrrI&forumid=331851

 

[jace]

Judy says "we have at least 50 positives right from the London area..."

 

[Dolphin]

Judy says "we have at least 50 positives right from the London area..."

I imagine that includes some private (paid for) testing that was also previously arranged.

 

[VillageLife]

Oh I thought she was talking about the UK 50 study which she presented at the conference

 

[Bob]

Oh I thought she was talking about the UK 50 study which she presented at the conference

Yes, I took it to be a reference to the results of WPI's UK study that she was presenting at the conference.
I believe that she was going to announce some results for some of the participants in the study...
she said she has only just unblinded them, and is in the process of writing up her paper.
So we don't yet know exactly what results she announced.

 

[Dolphin]

Oh I thought she was talking about the UK 50 study which she presented at the conference

I wouldn't imagine they were all positive so that's why I feel there is a good chance it includes the private people as well.

Judy says "we have at least 50 positives right from the London area..."

 

[Dolphin]

This excerpt is by Mindy Kitei for CFS Central http://www.cfscentral.com/2010/09/xmrv-conference.html :

Dr. Judy Mikovits of the Whittemore Peterson Institute and principal investigator of the first study linking XMRV to CFS talked about a London CFS cohort (and then, I believe, it was British researcher Dr. Jonathan Stoye who corrected her and said that the cohort was nearer to Kent) who met the Canadian consensus and suffered from severe cognitive dysfunction, joint pain, vertigo and tender lymph nodes; more than 50 percent were homebound. The predominant MLV was XMRV, and the rate of infection among CFS patients was 70 percent. Fifty blood donors served as controls. Dr. Jonathan Kerr (who, like Jonathan Stoye, was an author on the second negative British XMRV CFS study) drew their blood. Four percent of the controls were positive for XMRV.

 

[ukxmrv]

I wonder if that was a reference to the Ashford people and if JS was getting his Ashford's mixed up?

(also the reference to JK, not sure if any Ashford people could confirm that he was involved in their blood draw?)

 

[Dolphin]

I wonder if that was a reference to the Ashford people?

I think it was. 50 vs 50 presumably (although whether they will know the ME/CFS status of all the 50 from Ashford (i.e. any relatives/partners who were also tested), I'm not sure, when they don't have ethical permission to ask questions).

and if JS was getting his Ashford's mixed up?

Yes, makes the most sense. Here's a comment made on cfscentral.com:

The patients had their blood collected from a Hospital in Ashford. Dr Stoye is getting confused with Ashford in Kent.

This Ashford is on the border of South London and Surrey. The postcode is Middlesex.

(also the reference to JK, not sure if any Ashford people could confirm that he was involved in their blood draw?)

I'm guessing that only applied to the 50 blood donor "controls".

 

[Bob]

So the WPI London area study is much the same as the other positive studies...
70% positive in ME patients and
4% positive in healthy controls.

Does anyone know if they tested for antibodies in this study? Or did they only use PCR?
And were they testing for all the Polytropic types of MLV-rv's as well as XMRV?

What worries me is that 70% seems quite low considering that the WPI are the best at detecting the viruses.
This leaves a third of us without any potential answers yet.
If they only used PCR then that would explain it, as some people are saying that PCR is only capable of detecting about 69% of positive samples (or something similar to that).
Only about 60% of PR forum members are testing positive as well, so there still seems to be a lot of unanswered questions.

I guess it's still very early days. There's still so many questions, and not enough answers yet.

 

[pictureofhealth]

Worth mentioning that these WPI UK results have been independently verified by TWO other labs in the US, if I understood correctly.
I hope we will have much more info when the paper is published.

 

[free at last]

Hard to tell whats going on with these statements, any news would be so welcome but i understand it has to be done right, Dont know where these statements are coming from that JK was drawing blood, he certainly didnt at ashford, it was a NHS nurse, all i saw was NHS nurses doing it, Would be interested to know where all this extra information is coming from, doesnt sound right to me. Especially the JK bit ? Anyone ?

 

[Dolphin]

Hard to tell whats going on with these statements, any news would be so welcome but i understand it has to be done right, Dont know where these statements are coming from that JK was drawing blood, he certainly didnt at ashford, it was a NHS nurse, all i saw was NHS nurses doing it, Would be interested to know where all this extra information is coming from, doesnt sound right to me. Especially the JK bit ? Anyone ?

I'm not necessarily adding anything new but the quote is from: http://www.cfscentral.com/2010/09/xmrv-conference.html . Mindy Kitei attended the conference and saw all the "behind-closed-doors" presentations not just the Q&A. From what I recall from somewhere, JM was scheduled to talk about the 50 from Ashford. So I presume it is from this presentation. It seems plausible to me that they would get 50 controls and that if they were getting controls, it would not need to be done in Ashford (unless they wanted to match them but there was no talk of anything like that - in some studies they encourage people to have a matched control).

 

[maryb]

The study is being done only to confirm the presence of XMRV in the UK.
This was planned following the farce that was Wessley and Mclure's study in which she stated it didn't exist in the UK..
No controls were needed.

 

[free at last]

Ok that sounds reasonable, the controls were drawn by JK, this new information is very important as its the first real indication of the likely figures that have been got from this Uk study. Thats about 36+ out of 50 suppose your all wondering now ( like i am ) If your one of the two thirds showing positive. The worrying thing for me is, as im not as ill as i was in my first 5 years of illness, if the viral load becomes harder to detect as health improves. indeed can the viral load alter ( no pun ) as the symptoms alter. i would have been happier to have been tested during a crash period. who knows how significant or not that could turn out to be for testing purposes. Worrying, who wants a false negative due to increased better health after living with this for 16 years, and have had so many bad periods in all that time, that in some ways im mentally destroyed by it. I almost fear a false negative, more than a true positive at this stage in my life. Need the truth so bad it hurts. Im sure you can all understand that, and feel as i do