WPI Finds High Levels of Retrovirus in ME/CFS Patients

[Jerry S]

I'm surprised the CDC didn't discover this data mining its questionnaires.

 

[Frickly]

It's interesting because my primary care doctor is also an HIV doctor. He doesn't believe in CFS but thought that my symptoms were due to some sort of retrovirus.

That is interesting as my doc specializes in HIV, CFS and GWI. She does beleive there is a connection.

Kati, I agree that this news brings validation that is long over due.

 

[jenbooks]

I have read a bit more. I don't mean to harp on this and could be completely wrong but what makes me nervous about this is that its a murine retrovirus. Again I have no idea how often such viruses jump but considering the timing of this "epidemic" and that murine retroviruses have been used as vectors for decades now, I just really wonder how we were all infected. It is really making me feel uneasy. They are still using murine leukemia virus (modified) in gene therapy to this very day. It's effective though it did promote cancer in some patients so has had to be further modified.

As I said I also wonder if it's transmitted by ticks, which feed on mice and humans.

Maybe wondering *where* it came from is useless but I can't help it.

 

[MEKoan]

Transmission

I have wondered over the years if I acquired this sexually. Several weeks before I got ill, I had a brief relationship with a wonderful man who died, years later, of cancer at 58. It was many years ago but I believe it was prostate cancer.

I have married twice since then. My ex's are fine (touch wood) but, when a test becomes available, I will have a talk with them so that they can decide what they want to do about testing and their possible risk of prostate cancer.

We all knew we have something. I agree with Tom that we must bear in mind that nothing has changed since yesterday except, perhaps, increased understanding.

Peace out,
Koan

 

[jenbooks]

PS Again I don't know if this info is relevant but the way that murine leukemia "caused" cancer in SCID (bubble baby) patients given gene therapy was it integrated next to an oncogene and its promoter sequences switched on that gene.

This would therefore give some credence to the idea that over time not only your phenotype (symptoms/expression of disease) but genotype could change. Cheney could be right there that stem cell therapy is an answer.

 

[jackie]

Koan.....due to extreme memory probs (oh, really.....) I can actually HEAR those sqiggly, tiny voices singing the ".....sincerely real" stuff, but I can't quite remember where it came from!?

Maybe the wizard of Oz? At any rate, it made me snort coffee out of my nose while reading it...so it's all good.

I'm so pumped up about this! Maybe these LONG, THREE years of slogging it out on 3200mg. daily of Acyclovir....putting up with the sensation that my guts were being slowly chewed to bits by squirrels - not to mention losing my hair in clumps (all side effects of the anti-viral) were actually helping me or at the very least somehow protecting me from further damage from the virus!

My Dr. started me on this protocol because (and this is a much simplified explanation) he'd learned from previous work with HIV patients that the virus' plagueing us "talked" to each other - and by using antivirals (even if they weren't exactly the "right" ones, as we don't HAVE the RIGHT ones, yet!) and suppressing ANY of them, you were bound to lessen the impact of the remaining ones.

Hit or miss maybe, but I think this shows he was on the right track.

Just gimme the "RIGHT" one now!

regards (and thanks Cort for the heads-up!) jackie

 

[_Kim_]

So wondering what it looks like?

New dimension: An electron micrograph of the virus XMRV detected in a patient with chronic fatigue syndrome. Whittemore Peterson Institute

 

[dannybex]

Thanks Cort and all...

I'd be very curious to find out if the CFS patients involved in the study were "sudden-onset" or "gradual onset", and if one group or the other fell into the 33% who did not have the retrovirus...?

Dan

 

[Dreambirdie]

"In the meantime, her team has been making quick strides toward a simple diagnostic test that doctors could use to check for the virus. Tests have been running smoothly in the lab, she notes, with some diagnostics companies already interested in the technology. She predicts a test will be available in less than six months."

WOW! A simple diagnostic test! A real test!
DAMN, that is a miracle.

 

[jenbooks]

Danny, "The human retrovirus, identified as XMRV, has now been found to be in over 95 percent of the patients’ blood samples in this study group.''

 

[jenbooks]

Methylation

Barring widespread use of affordable and tolerable antivirals in those who test positive, and barring the idea that this is reactivation of a latent virus (somehow I do NOT think so), and hoping that actually it's widespread in the severe lyme cases, so that we have a unified field theory....

I will say that for now methylation and glutathione are more important than ever. Methylation when adequate quiets viruses. And glutathione helps the immune system fight them and fend off oxidative stress induced by chronic infection.

 

[MEKoan]

Hi Jackie,

Yes, it was a Wizard of Oz reference. Happy you got it!

Although I have had remarkably high titres for both EBV and HHV6a at different times in my illness, I have allowed brave souls like you to do all the antiviral groundwork for me (coward that I am) and I owe you a debt of gratitude for all you have gone through.

I really hope it pays off for you!

And, thank you!

Koan

 

[MEKoan]

Hi Chronic,

I think there are a couple of things that are different about this finding.

The published study was rather small but they did an earlier study which, I believe, was larger and had even more impressive results - 95% as opposed to <4%.

And, unlike HHV's, this virus is not endemic in the general population.

As to chicken or egg: I agree with you, the jury is still out.

 

[dannybex]

Frickly, Mary...

However, I do have to agree with Mary above. Does this mean we will never get better? Will there never be a cure? Will we all die early from different diseases because of our weakened immune system? Have I given this virus to my kids? My husband?

Sorry to be a downer as I am very excited about this news but have mixed feelings about it's implications.

It is kind of shocking, but here's my two cents:

People with severe CFS/ME have recovered. Did they have the retrovirus...I don't know. And there are a minority of patients who long ago tested positive for the HIV virus and yet have remained well, without going on retrovirals.

(And some would say our immune systems aren't "weakened", they're "dyfunctional" or as noted in the Scientific American article, they have "abnormalities".)

It would be very interesting to test the spouses, fathers, mothers, siblings and children of those with CFS...to see if indeed they have higher levels of the retrovirus than the 4% in the control group, but are not sick.

d.

 

[Frickly]

Dannybex

It is kind of shocking, but here's my two cents:

People with severe CFS/ME have recovered. Did they have the retrovirus...I don't know. And there are a minority of patients who long ago tested positive for the HIV virus and yet have remained well, without going on retrovirals.

(And some would say our immune systems aren't "weakened", they're "dyfunctional" or as noted in the Scientific American article, they have "abnormalities".)

It would be very interesting to test the spouses, fathers, mothers, siblings and children of those with CFS...to see if indeed they have higher levels of the retrovirus than the 4% in the control group, but are not sick.

d.

I agree, this would be very interesting. And thanks for pointing out my incorrect wording. Weakened and dysfunctional have two totally different meanings.

Jenbrooks, I do love my glutithione/ATP injections. Without them I am worthless.

 

[jackie]

Koan...you have reduced me to tears.

When I started the drug protocol my dr. told me there were no guarantees and painted a pretty accurate (if somewhat grim) picture of what my life would be like if I agreed to do it.

I just hoped in the long run it might help someone as well as myself. One of my other drs. was so furious that I'd be dumb enough to take the risk, he refused to treat me any longer!

But in 3 years you are the ONLY person to be kind enough to say "thank you"! I am thrilled by that and you've actually made me feel "brave" - instead of stupid!

So I thank YOU.

keepin' on.....jackie

 

[dannybex]

Is this the patient cohort?

This might be one of many good reasons to do more follow-up testing:

"Mikovits worked with a team that began checking patients' blood for XMRV. "We simply did a screen of the sickest of the sick of our patients because we figured that would be where we would find the most virus," she says. "And, lo and behold, there it was."

If that was indeed the patient cohort, I just wonder if XMRV would be found in patients with less severe symptoms?

d.

 

[MEKoan]

Dear Jackie,

I am every mindful of the reality that I am letting others take risks that scare me silly.

Mindful and very, very grateful.

Again, my most sincere thanks.

Koan

 

[_Kim_]

 

[Andrew]

In 2005 I was hit with sudden onset CFS. In 2008 I was diagnosed with prostate cancer. I wonder where I can get tested for this retro virus. One message mentions a simple test being ready in 6 months. But there has to be another test already available some place, otherwise they would not have been able to test the blood they tested.

If anyone finds a lab that can do a test now, please let me know. I've found nothing.