Cheney Clinic positive XMRV/MLV/HGRV study??

[sensing progress]

The just received September CFIDSLink includes a link to a FAQ about the Lo/Alter study. One answer from Paul Cheney is as follows:

I have a poster presentation at the International XMRV Workshop on September 7‐8 regarding XMRV/MLV/HGRV detection in my practice done on 47 consecutive patients from October 2009 to December 2009. Those 47 patients are very well characterized including the percentage of overlap diagnoses (FM, MCS, Lyme, IBS, mold‐illness), KPS, age, sex and geographic distribution. The data, I think, are extraordinary, but I cannot talk about it until after the 8th. – Paul R. Cheney, MD, PhD, The Cheney Clinic

He does not explicitly say that they found XMRV/MLVs in CFS patients, but I cannot think of any reason to call the data "extraordinary" unless they were finding positives in high numbers. This must be one of the rumored positive studies to be presented at the conference.

 

[shannah]

The just received September CFIDSLink includes a link to a FAQ about the Lo/Alter study. One answer from Paul Cheney is as follows:



He does not explicitly say that they found XMRV/MLVs in CFS patients, but I cannot think of any reason to call the data "extraordinary" unless they were finding positives in high numbers. This must be one of the rumored positive studies to be presented at the conference.

Good eye sensing progress picking up on this. Don't know how I managed to gloss over it but I did. I agree it looks promising.

What is the short form KPS that he's referring to?

 

[sensing progress]

What is the short form KPS that he's referring to?

I was wondering that too. Looks like it stands for Karnofsky Performance Score? More here: http://www.hospicepatients.org/karnofsky.html

 

[shannah]

I was wondering that too. Looks like it stands for Karnofsky Performance Score? More here: http://www.hospicepatients.org/karnofsky.html

Ahh - I'm sure you're probably right. Thanks.

 

[Rrrr]

yes, that is what it stands for.

this is going to be one rocking (!!!!) conference!!!!!

 

[SickOfSickness]

Great, more to be revealed in just another week!

 

[urbantravels]

Can. Not. Wait.

 

[ukme]

Can't wait either!

 

[Wonko]

just to be different I'm going to wait!!

(not that I see any alternative lol)

 

[garcia]

Cheney mentioned that a large proportion of his patients had tested positive for XMRV at Invest in ME in May in London. I'm guessing the above mentioned poster presentation will be based on that.

 

[Sasha]

Cheney mentioned that a large proportion of his patients had tested positive for XMRV at Invest in ME in May in London. I'm guessing the above mentioned poster presentation will be based on that.

I find it surprising - and interesting - that studies rumoured to be showing a CFS/MLV link are just being posters rather than presented papers at the conference. Unless they were submitted and accepted before the results were out (unusual but not unheard of for a study to be accepted on the basis of its design alone), they will presumably have been chosen to be "postered" by the organisers and other studies chosen to be given the spotlight. This suggests to me that studies that would previously have been considered dynamite - showing a CFS/MLV link - are perhaps now being considered old news/established fact and that the science has moved on very quickly to the next phase (taking the problem to bits and trying to solve it).

I can't wait either...

 

[VillageLife]

this is going to be one rocking (!!!!) conference!!!!!

Bring it on!!

 

[gregf]

Thank you very much for posting :tongue: this.

I have great admiration for Dr. Paul Cheney and am very interested in his news.
I thought he was being quiet, as a I have not seen his newsletter for a while.

 

[Forebearance]

Ooooo! Go Dr. Cheney!

 

[Sunshine]

I believe the XMRV figures to be around 80% from what was last reported by Dr Cheney.

 

[Cort]

I count four studies that appear to be certain to be positive: UK, Hansen, Cheney, De Meirleir plus some opportunity for more with the Blomberg study.

 

[gregf]

A bit off topic, but my heart compels me to write.

In 2006 I had been ill with ME for two years. No one could tell me anything useful
about why I was sick and my friends were ringing to to tell me "You have an
illness belief. We read this on the net".

I came across a DVD called The Heart Of The Matter, which was Paul Cheney's 2006 lecture.
It was a breathtaking leap forward, detailing all of real scientific known evidence along
with his findings on oxygen and PFOs.

I think I am fairly clever myself, but when one hears PC speak, one knows they are
in the presence of a brilliant mind.

I am fairly at peace with things now, but if I could do one thing, it would be to thank
him in person, for all he has done for us. Being down under, it is not likely I will ever
get to do that, so if anyone ever gets a chance to meet him, please say thank you,

from Greg in Australia.

 

[pictureofhealth]

Greg, your short message here seemed heartfelt to me. Why not email it directly to Paul Cheney himself, exactly as is, I am sure he would really appreciate it.

 

[pictureofhealth]

Re. Paul Cheney's study - does anyone know which lab did the testing for Dr Cheney's patients please? Were they done as part of a clinical trial or did he have bloods taken and forward to VIPDx labs for eg? I guess these answers will be forthcoming next week, but if anyone knows at the moment, it would be good to know.

 

[gregf]

I think I will. Thank you for the idea pictureofhealth.

Sometimes one forgets how much the Internet has changed the world.
And the ability of patients to fight for their rights.
CFS : the first medical scandal defeated by the Internet.