Article: Testing Negative - Staying Positive: Dr. Mikovits Santa Rosa XMRV Presentation by Paula Car

Article: Testing Negative - Staying Positive: Dr. Mikovits Santa Rosa XMRV Presentati

You can view the page at http://forums.aboutmecfs.org/content.php?338-Dr-Mikovits-Santa-Rosa-XMRV-CFS-Presentation-Carnes

 

She hopes to have a test for PMRV by June 1, 2011.

Moving quickly! So this puts the Alter/Lo findings in conjunction with the WPI findings - they are looking at the same group of viruses.

In families where there is XMRV infection 30% will develop severe mononucleosis (EBV) at puberty and never recover.

That is an amazing finding! 30% of young people will develop severe mononucleosis and never recover - wow...I hope they can get this out into the scientific literature....that will be a head turner.

Stress elevates cortisol levels which would in turn activate XMRV.

- yes, but in people with CFS? We already have low cortisol levels in general (is that some sort of protective mechanism against XMRV? Cheney has proposed for years that the 'fatigue state' in CFS is 'protective'.) A recent Spanish exercise study suggested that exercise reduces cortisol levels in CFS and some people do do well on bio-identical hormones....this is a tricky area.

 

Some patients have a positive culture test but no antibodies. If they are treated and begin to get better antibodies for XMRV will show up.

Since there are few cases of really dramatic improvement (?) this would suggest that you just need some improvement for those antibodies to start showing up.

Paul Cheney, MD at the Cheney Clinic in North Carolina is seeing 81% of his chronic fatigue syndrome patients testing positive for XMRV. Males and females are equally sick with CFS. Family members of CFS patients are testing positive for XMRV at a rate of 50%. Family members are commonly found to have these issues: autism, fibromyalgia, mononucleosis and cancer.

I sometimes react with 'pain' to reports like this; as in sometimes it seems almost painful how promising XMRV is....This is really promising stuff and would knock the socks off the research world, I would think.....they just need to get more independent labs to find XMRV.....

And here are more diseases....peripheral neuropathy, GWI (makes sense)....I get the feeling that its all or nothing with XMRV - either it's the grand PuppetMaster or a passenger...a big key is NOT finding it in non CNS or nervous system disorders.

If you have any of these labels you may find you are XMRV positive: Lyme, MS, Parkinsons, ALS, peripheral neuropathy, autonomic neuropathy, dementia or Gulf War Illness.

I like the congruence here...

XMRV does seem to be related to certain cancers: chronic lymphocytic leukemia, mantle cell lymphoma an other non-hodgkins lymphomas.

 

Taking anti-inflammatory drugs will reduce the replication of XMRV. If you can reduce inflammation and lower cortisol you will reduce XMRV. [This could explain why some of the natural treatments have helped CFS patients including meditation and deep breathing.]

I love it when things go full circle! a pathogen that is effected by (and maybe effects?) the stress response. Pathogen - meet the mind/body interface....Love it!

 

Marcus Conant! That's a big name....

Dr. Jamie Deckoff-Jones, M.D. Director of Clinical Services - what does this mean? I think she is the Director of the Clinical Advisors - not the actual director of the clinic

Clinical Advisors will be

• Joseph Brewer, M.D. Infectious Disease
• Jack Burks, M.D. Neurology
• Marcus Conant, M.D. HIV
• Robert Fredericks, M.D. Endocrinology
• Michael Snyderman, M.D. Oncology

 

That is an amazing finding! 30% of young people will develop severe mononucleosis and never recover - wow...I hope they can get this out into the scientific literature....that will be a head turner.

Cort, do you believe these kids with chronic mono will get better, if in fact they too have xmrv, and a solution is found for for persons with ME/CFS (with xmrv)? Or will they suffer infinitely until a separate treatment is organized?

 

That's a lot to take in (I can't believe I actually read it all!!!).
I'm someone who will have to wait until I can take a lab slip to the lab and have Medicare/Medicaid pay for testing. It will be a long time off yet, I'm sure. So, I'll try to remember to breathe....something I seem to forget!

Thanks Cort, sobering, and a bit scary.

N

 

That is an amazing finding! 30% of young people will develop severe mononucleosis and never recover - wow...I hope they can get this out into the scientific literature....that will be a head turner.

Cort, do you believe these kids with chronic mono will get better, if in fact they too have xmrv, and a solution is found for for persons with ME/CFS (with xmrv)? Or will they suffer infinitely until a separate treatment is organized?

That is an interesting question and I really wouldn't know but if XMRV is what is somehow prolonging this IM state - probably an EBV infection, I guess - then taking that away would only help I would think. This is the XMRV weakens the immune system allowing other pathogens to flourish scenario - which, of course, is similar that other retrovirus (HIV) - except maybe in this case XMRV somehow ploughs the ground, so to speak, for CNS pathogens or herpesviruses.

IM is soooooo interesting.....in the context of CFS...Renee Taylor is finishing up a study on IM and CFS.....it'll be exciting to see what she finds out.

 

Among other things the WPI's look at these families and Dr. Cheney's look at his patients families really suggests how important it is for researchers to start looking at co morbidity in CFS families. They did it in FM- my god, why in CFS???? That in itself would be fascinating.

 

This is interesting

Given the high percentage of family members infected, transmission must be both casual and blood borne.

Casual transmission - does that mean airborne? Does that necessarily mean that? If it does that opens a whole new can of worms.

Gordon Medical found 50% of their CFS and fibromyalgia patients were positive.

50% of FM patients - is a bit of a surprise to me since I associate retroviruses with fluey symptoms and I don't think they are as common in FM as CFS. Then again I tested positive for XMRV and I have more pain symptoms and the hypersensitivity to pain appears, at least, in part, to be due to disturbed CNS functioning.....so if XMRV is up in the brain - maybe high rates of XMRV infection in FM make sense.....

If the WPI's Science paper can just start getting validated consistently - it's VERY enticing.

 

Given the high percentage of family members infected, transmission must be both casual and blood borne.

This one caught my eye too. I've never heard Dr. Mikovits say something like that before. I only remembered her saying one should stick to the same rules like people with HIV, as a precaution.

 

n families where there is XMRV infection 30% will develop severe mononucleosis (EBV) at puberty and never recover.

Very interesting.. Ive always said both here and in other places that I believe something was wrong with me in the first place to get the such severe mono I had when I was when a teen.

In my case I did recover at that point but it did take quite a while... I had mono so severe I was going unconscious with it and bedridden with it for 2 and a half months. The XMRV explains why I was so badly sick with mono.

Family members are commonly found to have these issues: autism, fibromyalgia, mononucleosis and cancer.

On dad sides of the family... we have CFS/ME, autism, fibromyaligia and dads brothers wife got leukemia (which she died from)

XMRV does seem to be related to certain cancers: chronic lymphocytic leukemia, mantle cell lymphoma an other non-hodgkins lymphomas.

I believe there also is a link to prostate cancer.. as the males in my family, so many of them get and die from that.
(We also have a very rare pancreatic cancer in my family.. with 3 members dying of it... its either genetic or another thing to do with XMRV... has anyone said anything about it possibly being able to be haboured in the pancreas yet or be able to cause rare pancreatic cancer? I dont think so yet.. so maybe if one of the experts reads this, they may want to consider that)

 

What an interesting family history Taniaust...fibro and autism..This illness cries out for a good family history study.

 

That is an amazing finding! 30% of young people will develop severe mononucleosis and never recover - wow...I hope they can get this out into the scientific literature....that will be a head turner.

I thought that the statement was actually: in families where there is XMRV infection 30% will develop severe mononucleosis (EBV) at puberty and never recover.