XMRV positive by serology from WPI

[usedtobeperkytina]

Sing, well, I don't than the mice. Retrovirologists say they gave us this tricky virus.

Tina

 

[gracenote]

Thanks George.

I notice that Candace Pert is one of the collaborators.

Collaborators on this research are Dr. Frank Ruscetti, Laboratory of Experimental Immunology, CCR, NCI; Dr. Larry Keefer, Laboratory of Comparative Carcinogenesis, CCR, NCI; Dr. Judy Mikovits, Whittemore Peterson Institute; Drs. Candace Pert and Michael Ruff, RAPID Pharmaceuticals.

There is a thread on Peptide T. Peptide T for XMRV

From Wikipedia: She holds a number of patents for modified peptides in the treatment of psoriasis, Alzheimer's disease, chronic fatigue syndrome, stroke and head trauma. One of these, Peptide T, had been considered for the treatment of AIDS and neuroAIDS. The results of a placebo-controlled, three site, 200+ patient NIH-funded clinical trial which focused on neurocognitive improvements, was conducted between 1990 and 1995. The results showed that Peptide T was not significantly different from placebo on the study primary end points, tests of brain function. However Peptide T was associated with improved performance (memory and learning) in the subgroup of patients with more severe cognitive impairment.

All this research is really happening! This is exciting!! I'm excited!!!

 

[gracenote]

Holy Smokes, George! Thank you for posting this, about the work going on using mice and studying their responses to their version of XMRV. Maybe this is off topic for some people, but I want to acknowledge and thank mice spiritually, for their help, in speeding the information we need to be diagnosed and treated for XAND illnesses.

Sing

Sing Nothing you say is off topic. Please say more about this if you'd like. As the starter of this thread, I invite your thoughts.

 

[_Kim_]

This reminds me of the thread that joyscobby started Zero tolerance to mouse hate.

I'll echo you Sing and give thanks for every animal that has been or will be sacrificed in the research efforts to diagnose and treat us.

 

[Sing]

Sing, well, I don't than the mice. Retrovirologists say they gave us this tricky virus.

Tina

Thanks for replying, Tina and Gracenote!

I know what you mean, Tina, for not wanting to appreciate mice's role in all this. I get it! But what it means to me is that we are all part of the same biosphere, sharing and affecting each other. I feel interconnected with animals and like the feeling. And now the mice are playing a helping role, as our forerunners also made ill by this retrovirus, so I am wanting to express my feeling of gratitude.

And, mice have learned to fend off the actual XMRV that we get sick from, so I expect the researchers will learn from that too!

Just my "animal take" on things,

Sing

 

[oerganix]

Congratulations Gracenote! And many, many hugs!! I hope you can get into WPIs trials soon and that you are in one that works for you!!

 

[leelaplay]

xmrv positive by serology

dearest gracenote

I've been speechless since getting your news. Again, have started to write numerous times and not been able to, or able to get it to 'send' readiness. I know you've been diligent and doing your best to prepare for the results, but you must feel a bit like Alice in Wonderland. It's a new world, with new rules, some whacky characters both friend and foe, all mostly unknown, and all to be explored. You're a pioneer now - one of the first serology xmrv-positives.

I thank you so much for sharing your news with us. A true opportunity for practicing 'don't know' mind. The ME/CFS world is changing so quickly. While there is still no proof that I know of to show that XMRV causes ME/CFS, there are hints everywhere that it's close, not only for prostate cancer, but for ME/CFS, Autism, maybe MS..............The CROI shows virologists madly racing for their firsts. George's post shows the NCI already starting to try to develop anti-XMRV drugs!

Across the airwaves, from here, you seem to be living with the news with great aplomb, and grace of course.

Please continue to take great care of yourself. And know we're here should you need us!

if:Retro smile::Retro smile:

 

[leelaplay]

Look at the info that's come out in this thread:

Funkster reports that Belgium is going to do a replication study. That's fantastic. It's the first replication study I've heard of. Is this already a thread in the XMRV testing thread? If not, FUnkster, would you mind starting a thread there so others will know? If you're not sure how - you can PM me.

And George - what amazing news from the NCI. This has got me so excited - I've been wiggling and wagging my tail and going 'chu' for hours! Same request - I don't think people know about this. Would you mind starting a thread?

thank you all

and the times, they are a changin'

ps - he's so young here!

 

[Dr. Yes]

dmarie4301 has started a thread about Ruscetti's research (as quoted by George) here:

http://forums.aboutmecfs.org/showth...out-NIH-and-XMRV-treatments&p=50075#post50075

Hmm... Ruscetti... 'scetti.... coincidence??

 

[leelaplay]

dmarie4301 has started a thread about Ruscetti's research (as quoted by George) here:

http://forums.aboutmecfs.org/showth...out-NIH-and-XMRV-treatments&p=50075#post50075

Hmm... Ruscetti... 'scetti.... coincidence??

hmmm - I agree Dr Yes that this is ponder-worthy. Does George feast on virologists for dinner?
if

 

[ukxmrv]

IslandFin,

About the Belgium "replication study". I've also spoken to Redlabs. They are not intending to do a study. They are going to offer the XMRV test as a private test to paying patients only. That's why they went to the USA to learn the right methods.

 

[leelaplay]

thanks ukxmrv. Even if it's not a replication study, I guess it's still a positive shift in the landscape; a European lab that wants to invest now in providing accurate xmrv-testing.Their business sense must say that this will be a renumerative venture in the long-run. I hope they'll charge reasonable prices.

 

[ukxmrv]

It's great news Islandfin. One more resource for patients in Europe. Redlabs already offer things like a RNASE-l test and some immune tests. Hard to get here otherwise.

 

[gracenote]

Here are some thoughts that Dr. Mikovitz communicated to a source which I have paraphrased. This is third hand information. (Obviously, this does not carry the weight of Dr. Mikovitz said, but I believe it to be an accurate reflection of her current thinking.) I have permission to post.

It is becoming more apparent that the virus in not being found in large numbers in the blood.

There have been over 300 verified positives so far.

The virus has been isolated from over 90% of the (antibody) serology positives.

When one person who was serology positive, but without detectable virus, was retested when symptoms were acute, the virus was then isolated.

It may be possible for some to develop antibodies after only being exposed to viral fragments, yet remain uninfected. (This is basically how a vaccine would work.) This could explain how some of the healthy population is positive.

Some who were expected to be positive have tested negative. Perhaps those who are the least sick and the most sick may not have free antibodies because it is bound in immune complexes.

It may be possible for some to have an immune defect that prevents them from expressing antibodies at all. They would then require culture testing, or possibly tissue biopsy to find the infection.


​

 

[Adam]

We are currently using knowledge and reagents obtained from working with mouse retroviruses to study the xenotropic MuLV-related human retrovirus XMRV, which was recently discovered through an association with prostate cancer. In collaboration with the laboratories of Judy Mikovits and Frank Ruscetti, we were able to use antibodies developed against the envelope protein of SFFV to detect infectious XMRV in the blood cells and plasma of patients suffering from the neuroimmune disease chronic fatigue syndrome (CFS).

Thanks for posting George. I love the fact the NCI refer to CFS as a neuroimmune disease.

 

[IntuneJune]

Here are some thoughts that Dr. Mikovitz communicated to a source which I have paraphrased. This is third hand information. (Obviously, this does not carry the weight of “Dr. Mikovitz said,” but I believe it to be an accurate reflection of her current thinking.) I have permission to post.

It may be possible for some to have an immune defect that prevents them from expressing antibodies at all. They would then require culture testing, or possibly tissue biopsy to find the infection.


​

This is the group I fall into, I have had vaccine challenges, and I do not produce antibodies..... This certain would change the picture...

June

 

[Cort]

Nice catch Adam - neuroimmune disease - has a nice ring to it.

Gracenote had you been tested before (and been found negative?)

 

[gracenote]

Gracenote had you been tested before (and been found negative?)

This is the only test that has come back. I'm still waiting for the 3 other test results from WPI and the results from Panorama.

 

[Countrygirl]

Here are some thoughts that Dr. Mikovitz communicated to a source which I have paraphrased. This is third hand information. (Obviously, this does not carry the weight of Dr. Mikovitz said, but I believe it to be an accurate reflection of her current thinking.) I have permission to post.


It is becoming more apparent that the virus in not being found in large numbers in the blood.

There have been over 300 verified positives so far.

The virus has been isolated from over 90% of the (antibody) serology positives.

When one person who was serology positive, but without detectable virus, was retested when symptoms were acute, the virus was then isolated.

It may be possible for some to develop antibodies after only being exposed to viral fragments, yet remain uninfected. (This is basically how a vaccine would work.) This could explain how some of the healthy population is positive.

Some who were expected to be positive have tested negative. Perhaps those who are the least sick and the most sick may not have free antibodies because it is bound in immune complexes.

It may be possible for some to have an immune defect that prevents them from expressing antibodies at all. They would then require culture testing, or possibly tissue biopsy to find the infection.

I have been trawling through the posts trying to find an answer to a query I have, particularly as the UK testing is now about to start. I would be grateful if some of our scientific boffins could clarify the following.

How likely is it that someone who has been severely ill for years, but much improved at the time of testing, will get a positive result, even if the illness was caused/associated with XMRV? As the virus is difficult to detect at the best of times, will a test subject in a period of remission still be likely to prove positive to the serology test? I would be grateful if this could be clarified.

Thanks.

 

[ukxmrv]

When I was tested I was the best that I had been for a long while. I had a little more energy than normal and less viral (sore throat, glands etc). I was XMRV+