One down...

[Jimk]

I was debating whether to spring for the full XMRV testing a while back, even bought the kit for getting the blood tests, when I got a reply from Dr. Silverman at the Cleveland Clinic, the co-discoverer of XMRV in prostate cancer. He kindly referred me to Dr. Eric Klein at the Glickman Urology Institute at Cleveland Clinic, who was doing a pilot study on XMRV in prostatitis as well as in prostate cancer. He's the co-discoverer with Silverman and they've already found about 20% of prostate cancer to be XMRV+ using their PCR method, a rather extraordinary finding.

So, since I have been treated for chronic prostatitis at CCF already, I agreed to participate in this pilot which sampled urine and prostate fluid in urine if I could get results reported back. I figured that if it was positive I would have reason to get the Reno testing done to confirm, if negative I might or might not...

Just got an email back that showed no XMRV in these fluids through this method. Of course, so little is known about best-method detection, whether this tissues are active reservoirs for X or this is true only in cancer or prodromal cancer conditions, etc.. So it doesn't leave me feeling and clarity on whether I have X in other tissues, etc.. It does relieve some worry about sexual transmission to my partner. And, yes, I know this isn't 100% assurance either, but it is the best indicator we have at this point in time. Silverman's lab is no slouch at PCR testing for this.

I'm currently inclined to wait until the testing research shakes out a bit more, and possibly until there is an insurance reimbursable test available. I may change my mind depending on the emerging findings with antiretrovirals that Mikovits is going to report on. We'll see.

I'm reporting this just to suggest that there may be a variety of angles, not just CFS/ME for people to get involved in XMRV related studies that could give at least a first cut of information. But... you have to make sure that you can get results reported back. In another pilot study being run by the Rheumatology department at CCF on fibromyalgia and XMRV, the Ethics Review board at the Clinic specifically prohibited giving results to patients, indicating that this would not be actionable medical information as there is no accepted treatment and no scientifically clear causal connection. They have to protect us poor patients from having information we might want to act on via our own recognizance! I feel so much better being "protected" in this way by a patronizing review board... :Retro mad:

 

[Esther12]

At the moment, I'd only pay for an XMRV test if you had so much money that the cost is no problem for you.

It's all so uncertain right now.

I'd have thought that a CFS patient who has had prostate cancer would be pretty likely to get a postivie with Silverman... but we just can't comfortably assume much right now. Personally, I understand why ethics review boards would not want patients given test results right now - when there's still a continuing danger of false negatives and false postives their results could well be misleading.

Interesting to get news of your results though, thanks for passing it on. I was just reading a new interview with Kleing here: http://cfidsreport.com/News/11_Full_Interview_Eric_Klein_On_XMRV.html

 

[Jimk]

Just to be clear, I don't have any cancer, just a rather common case of prostatitis (inflammation). The pilot study is looking at whether this diagnosis and X+ has any correlation, since they've already found it in prostate cancer.

 

[Esther12]

Oops. Skimmed your post and got the wrong idea. Sorry.

 

[Jimk]

Gee whiz, sorry for tone...

Esther- reading my "correction" I realized how defensive my tone was. I've got a list of complaints and potential diagnoses long as my arm, but NOT THE BIG C! My list is "just" CFS/ME. It's just f---ed up my life, not dangerous, mind you.

By which I mean I must be just a little bit anxious about having to face that one too, after all the crap I've had to endure already with this little imaginary "psychosomatic illness" of CFS/ME.

It's been hitting me lately that it's all too clear that we all are at increased risk for cancer, leukemia, and a whole bunch of other lovely, very real stuff.

So let's be clear... I just have a common, everyday, guys-my-age type thing here. Let's be clear. Get me? Real clear... Isn't denial is a wonderful thing?

 

[Esther12]

lol. I didn't take it like you were being aggressive. It's just a bit rude to misread someones post when replying, so I apologised. No worries. Good luck with CFS!

 

[Francelle]

Interesting to get news of your results though, thanks for passing it on. I was just reading a new interview with Kleing here: http://cfidsreport.com/News/11_Full_Interview_Eric_Klein_On_XMRV.html

This is an excellent interview with Dr Klein. Has it been posted as a link in its own thread?

 

[August59]

First time I've seen it. It appeared to me to be very genuine scientific interview as in he stuck to the facts. Good read! Thanks!

 

[Jimk]

Thanks for that interview. Someone posted it also on the Media section. It's a most impressive, concise response, especially to the "contamination" studies. I found Dr. Klein to be the most deeply knowledgeable physician I had met to date on the whole range of XMRV issues, including CFS related. This interview shows even more. I particularly liked his demarking of the conclusions in the contamination studies as "overreaching."

 

[garcia]

They have to protect us poor patients from having information we might want to act on via our own recognizance! I feel so much better being "protected" in this way by a patronizing review board... :Retro mad:

Jim, we've been "protected" in the UK for decades now. I feel fully safe in the knowledge that I am given no knowledge or information, therefore I can not possibly worry about anything. I suspect if the govt had its way, it would "protect" us all the way to the grave.

Thanks for the info.

 

[cigana]

Thanks for posting this Jim. I too have prostatitis (well chronic pelvic pain syndrome) and given XRMV's predilection for the prostate, felt fairly sure a XMRV test of prostatic fluid would most likely be positive - so I'm really surprised to see you tested negative there. Looks like we've got much to learn yet...

Cig