Article: A Light in the Darkness: Good News Ahead for XMRV?

You can view the page at http://www.forums.aboutmecfs.org/content.php?90-A-Light-in-the-Darkness-Good-News-Ahead-for-XMRV

 

Thanks Julius!

Thanks Julius for the cool update on that other study - rumors loved, especially when positive, and qualified as nicely as you did!

BTW - I love the hot new XMRV research terminology

streamlined and stopwatchy

Cheers,
Parvo:Retro smile:

 

ARUP lab:
Maybe people are used to seeing references to the ARUP lab but I happened to read "Focus on Dr. John Chia, Researcher" and their sensitive test to enteroviruses was mentioned: http://tinyurl.com/yfp2b8t i.e.
http://cfspatientadvocate.blogspot.com/2010/02/dr-john-chia-researcher.html

 

Thanks once more to Cort, and all of you who provide such great information. I too can't believe all the good stuff coming out of NV and UT! Who would have thought. I had expected Dartmouth, Duke...but good ole' UT and NV? Glad I have a daughter in SLC if we are ever able to get treated at U of UT.

 

Thanks once more to Cort, and all of you who provide such great information. I too can't believe all the good stuff coming out of NV and UT! Who would have thought. I had expected Dartmouth, Duke...but good ole' UT and NV? Glad I have a daughter in SLC if we are ever able to get treated at U of UT.

Meg,

Please , a lot of smart people come here to ski and then figure out how to stick around and play in the mountains and the desert. Ski one day (30 minutes from my old office) and three to six hours later you're in one of at least nine National Parks and several (I've stopped counting) National Monuments. Half the people I know here came to ski and never left. I used to live in Palo Alto. It was faster to fly to Utah (stay with friends) and drive to a resort than it was to drive to the Sierras (much cheaper for multi-day trips and the powder days in the Rockies are to die for).



I've attached an image of the view from the trail just above my neighborhood. This was the view on my regular dog walks.

I better stop now or someone out there is going to figure out why I get so much out of sitting on the couch and complaining that I feel like hell.

 

Meg,

Please , a lot of smart people come here to ski and then figure out how to stick around and play in the mountains and the desert. Ski one day (30 minutes from my old office) and three to six hours later your in one of at least nine National Parks and several (I've stopped counting) National Monuments. Half the people I know here came to ski and never left. I used to live in Palo Alto. It was faster to fly to Utah (stay with friends) and drive to a resort than it was to drive to the Sierras (much cheaper for multi-day trips and the powder days in the Rockies are to die for).

View attachment 1829

I've attached an image of the view from the trail just above my neighborhood. This was the view on my regular dog walks.

I better stop now or someone out there is going to figure out why I get so much out of sitting on the couch and complaining that I feel like hell.

Hi Shane,

You mentioned skiing and that just really hit hard. I loved to ski and was trying to gain weight because I was being tossed by stupid bumps. I decided if I increased my step aerobics and weights on my legs, I'd be all set. That is what set this whole FM/CFS off for me. In other posts, I've mentioned how I was so active and athletic prior to FM/CFS. I met my high school sweetheart on ski team and we dated a LONG time prior to me deciding not to get married. We spent many years skiing including 6 years skiing every weekend in Vermont since he was a race coach and ski instructor in Vermont. I skied with instructors and race coaches only and our skis were left in lockers at the base after being tuned frequently.

My first trip west was to Tahoe and we skied several areas. You know the areas where it is marked "Experts only"...that's where we skied. I had a few choice words for my boyfriend at the time. Needless to say, I could pretty much get down anything since I was trained in "technical" skiing. Ice is not ice if you can get an edge in it! Powder rarely exists in New Enlgand! I so miss skiing. Have you tried it at all since becoming ill?

I just saw your post and it brought me back to better days! I do hope to return to the slopes, the mountains, the ocean, and the links very soon!

Thanks for your post! ~ JT

 

TomK! Nice catch. ARUP was the lab that turned his program around as I remember. They had the only good test for enteroviruses and once he started using it it turned everything around for him. Wow! They are good. Sweet stuff.. what a coincidence...

 

Thanks Cort. Thanks for this article and all the other great work you do. :Sign Good Job:

 

A few points

I wanted to make a few very minor points.

<snip>The patients from the first study have all gotten their results - it would be nice of some of them checked in.

Cort may have information that I don't (in fact I'm sure of that on many levels) but I do not know that ALL of the exercise subjects have received their results. I know that at least some have (personal communication with subject) and at least for me, it is presumed (I think rather safely) that all the testing from the exercise subjects was completed before this much larger group was brought in for testing. I would hate to have someone out there who participated and hasn't received results yet asking "what about me?"

<snip>
You really don't want to know that the people performing testing may have nothing more than a high school diploma and OJT (on the job training).

<snip>

The tech performing your lab work may have no college background and may not catch something extremely significant in your blood work due to pure ignorance. Due to cost cutting measures, some hospitals will take whoever they can get to perform lab work.

JT, I agree with the need for your cautious approach in general. However in the case of this study, I can assure you the prep and analysis is being done by a small number of people with as high a level of education and appreciation for potential pitfalls as you could possibly hope for. Also to clarify, it is not my understanding that ARUP is doing the analysis. ARUP appears to have been aiding in the original sample collection and handling (directly supervised by Dr. K. Light). As the testing is not of the commercial variety (test kits, etc.) advanced sample prep and analysis is taking place in specialized labs by well educated personnel under close supervision of the PIs.

 

Thanks for reporting back about this CBS.

According to the CAA research update page, the Lights included a multiple sclerosis group in their exercise study:

It'll be interesting to see if any of the multiple sclerosis or healthy patients tested positive to XMRV. It would be fascinating if it was only the ME/CFS patients with that clearly abnormal response to exercise who tested positive. That sort of correlation would be really significant I think.

If anyone tested positive that is! Trying not to count my chickens before we get the published results...

Catch, That's a good point. I don't know if the MS patients from the orginal exercise study were included in the XMRV testing. I hope so. As for healthy controls, I know there are 200 now. Again, I don't know if any of those came from the original exercise study.

 

The latency period for xmrv is going to make AIDS look like Speedracer.
And it doesn't matter whether xmrv is the ultimate, ultimate cause for CFS, it'll be the lynchpin.

 

Light Bands Not Considered +ve

Hey this new study is great news but I have one concern. I'm don't have a scientific background so its likely to be unfounded. Anyone who knows better prey tell.

Dr Singh has found XMRV in tissue samples i.e. prostate samples and these tests are of blood.

A study of 5 Monkeys infected with XMRV ( poor things ) through blood found that the infection targeted organs and it was almost completely absent from blood. This may be why Mikovits has to go to such great lenghts to find the infection at all and could be the reason she counts the light bands as being positive.

The studies of prostate samples are from a tissue that was shown in the monekys to be infected so might have stronger bands due to higher infection level.

In the Monkey study they found the Lymph system was a major target and I would suggest some tissue biopsies of the tonsils or other lymphatic tissue from the throat be tested especially in patients with bad sore throats.

The near zero levels of XMRV in monkey blood does worry me for getting acurate results from blood tests and I think this needs to be addressed before more money is spent on studies that look at blood which might not show a whole lot and cause us to miss the boat with this research.

This worry is more than likely ignorance as I know nothing about PCR testing but would like a scientific opinion or 6.

 

One good way to start gettting answers is to search the the Phoenix forums. Here's how
It takes a little getting used to, but it works OK once you're clued up with help of the above reference. It also helps others not to have to write out the same story twice.

Regards,

Maarten.

Thanks Marteen

Ive just done a search but didnt find an answer so I'll just have to keep looking I guess.
Ive been following XMRV pretty closely on the web and Corts Forum for a while now. Has anyone already posted on this? Im pretty sick so it was hard even writing that comment but for me its an issue I need an answer to.
I've had a miserable life with this for 34 years now since May 1976 at the age of 15 and it has seemed like year after year no research and endless waiting. I had really just given up looking at research untill now.

Gert

 

When Dr. Light took my blood sample I asked her who was paying for the testing. She said offerutah.org was helping out.
Also, someone who I know did the exercise test was getting his/her blood drawn the same day I did.

 

I was just told that If we don't hear anything by Thanksgiving to give them a call. They were interested in any family members who had/has prostate cancer.

 

I have been searching for any further news on this study, but haven't managed to find it. I found the fundraiser thread, but am looking for any news on progress or results.

I'd greatly appreciate a link to another thread or other follow-up info.

Thanks!