Dr. Judy Mikovits IACFS/ME Newsletter Apr 2010 Q & A

[Cookie Monster]

Apologies everyone - a bit of a tangent but still related to the IACFS newsletter.

I myself was very pleased to read that some XMRV+ people can and do get full remission periods. This is something i have experienced myself with my ME/CFS and i wondered if that would exclude me from being infected with XMRV.

I also often wonder if im lucky to get remissions purely because i had my tonsils removed post-infection. The ENT surgeon i saw for my tonsillectomy said at the time that infections like EBV for example can pool in the tonsils and mar a patient's full recovery as the tonsils act as a holding reserviour but they often periodically leak a little of the virus back into the blood stream.
Im also lucky i think that i dont experience much discomfort from sore throats with my ME/CFS. Infact the first warning of an impending flare that i get is when the glands under my jaw swell up, whilst many others seem to get severely sore throats first up. I expect that this is definitely because i no longer have tonsils.

One more point i wanted to make was that im sure it has been said before (possibly by Judy M?) that XMRV may well turn out to only be transmissible in saliva during the acute infection stage.

 

[natasa778]

Natasa started a new thread on interferon alfa.

thanks lansbergen, I thought it would be easier to access if separated

 

[lansbergen]

thanks lansbergen, I thought it would be easier to access if separated

I also think it is easier that way.

 

[Gerwyn]

Yes, I think it happens to a lot of people.

I have been ill so long, almost forty two years that I believe I have have lost the ability to reroute functions.

Younger people and those who have been less affected may regain a lot of function if we get a treatment for XMRV though they may be at a disadvantage as age creeps up and the other pressures on brain function become pronounced.

Mithriel

your symptomd are very much like mine add in alexia agraphia dyscalculia agnosia no cognitive map and absence of propioreception Chronic FATIGUE syndrome what a sick joke!

 

[Sasha]

Yes, I think it happens to a lot of people.

I have been ill so long, almost forty two years that I believe I have have lost the ability to reroute functions.

Younger people and those who have been less affected may regain a lot of function if we get a treatment for XMRV though they may be at a disadvantage as age creeps up and the other pressures on brain function become pronounced.

Mithriel

There's tons of really encouraging stuff about neuroplasticity (the ability of the brain to rewire itself) even in the elderly in recent science - I'd recommend "The Brain that Changes Itself" by Norman Doidge if you fancy being blown away by the amazing stuff they're finding. Or just read the reviews! We're never to old to rewire, apparently...

 

[usedtobeperkytina]

Mithrel, have you had MRI?

Tina

 

[tricia]

The thing that totally blows me away is that my "remission" followed the removal of my ovaries and I was never able to really be compliant with HRT because of a vague sense that it didn't agree with me. I would forget again and again then something would happen (like a fractured pelvis from osteoporosis at 38) and I would get all compliant and start to feel worse. Then I would start to forget - I think we can have a natural disinclination to be compliant with medication that is creating unfocused but real problems. Ok, most of you probably monitor your health better and actually pay attention to these things but I never did and still don't, really. Yes, I know, denial is my thing. Anyway, it is such a tight fit! I remember running down the street three weeks after an abdominal hysterectomy, that cut me from here to way down there, because I felt better than I had in years. It made no sense. It made total sense!

Was in good health till Hysterectomy and Ovaries removed then on Oestrogen........... that was 1996. then 2003 diagnosed mod to severe ME

 

[tricia]

[QUOTE Originally Posted by Mithriel
Yes, I think it happens to a lot of people.
I have been ill so long, almost forty two years that I believe I have have lost the ability to reroute functions.

Younger people and those who have been less affected may regain a lot of function if we get a treatment for XMRV though they may be at a disadvantage as age creeps up and the other pressures on brain function become pronounced.

Mithriel=Gerwyn;72637]your symptomd are very much like mine add in alexia agraphia dyscalculia agnosia no cognitive map and absence of propioreception Chronic FATIGUE syndrome what a sick joke![/QUOTE]

me too - sounds just the same for this old confused mind

 

[fingers2022]

Dr. Mikovits responds to these concerns here:

Q: What are your current % of positives in CFS? In controls?

A: In CFS disease satisfying the Canadian consensus criteria, we have isolated virus from more than 300 patients of ~400 tested but we have serological evidence in another ~10% of CFS patients fulfilling CCC criteria, from whom we have not isolated virus, clear evidence of infection but the significance of which is not known.

. . .

Q: Are your "hit rates" different in the samples sent to you since the Science paper?

A: Not as long as the physicians sending the samples are diagnosing as Dr. Peterson does on CCC criteria. In fact the hit rates from overlapping diseases more than we expected now ~35%.

The concerns were: this was the important Q & A for me:

Q: When you assess signs/symptoms of patients with positive XMRV, are there any that track or don't track well with XMRV positivity compared to CFS patients as a group?

A; I am not a clinician and right now we dont have sensitive quantitative assays to monitor viral load so we have not actually tracked symptom severity and XMRV positivity.

I read this as there's a lot more science and analysis to do, and so far there's onehelluvalotta conjecture. Even the correlation between XMRV and ME/CFS is vague due to the poor definition of the latter.

Gracenote, many thanks for highlighting the Q&A's which potentially address this. I can understand what you are saying.

However, I think the posts on this thread highlight the complexity and heterogeneity of ME/CFS as a condition, and this is why I don't anticipate an open and shut case that quickly correlates a large proportion of ME/CFS diagnoses with XMRV as causal agent. I might be wrong and it might end up as simple as ABC, but if it's not we'll need to look at it in a sophisticated way.

 

[gracenote]

Gracenote, many thanks for highlighting the Q&A's which potentially address this. I can understand what you are saying.

However, I think the posts on this thread highlight the complexity and heterogeneity of ME/CFS as a condition, and this is why I don't anticipate an open and shut case that quickly correlates a large proportion of ME/CFS diagnoses with XMRV as causal agent. I might be wrong and it might end up as simple as ABC, but if it's not we'll need to look at it in a sophisticated way.

I agree. I don't think it will end up as simple as ABC. Wouldn't that be nice? Nothing about ME/CFS has ever been simple.

 

[Rrrr]

She didn't say that it was transmitted so casually, simply that it was theoretically possible. We don't know how it's transmitted.

The triggers, I think, relate more to what triggers replication of the virus in someone already infected and has little to nothing to do with who "catches" it. Not everyone has the same levels of hormones, perhaps the 4% who don't become ill have very low androgens.

I have no brain right now but I don't see a problem with this.

i have VERY high androgens, and always have. -- rrr

 

[MEKoan]

rrr, not so good, me thinks. You're way too sexy for your own good.

 

[citybug]

This is my favorite line:
A: NO laboratory researchers are not smart enough to engineer new human retroviruses. XMRV has never been detected in ANY other animal in nature except humans.

I'm glad she didn't mention sweat in the body fluids.

Maybe this 35%! is going to get us the funding.
A: Not as long as the physicians sending the samples are diagnosing as Dr Peterson does on CCC criteria. In fact the hit rates from overlapping diseases more than we expected now ~35%.

 

[Kati]

I forgot what the hit rate was, anyone can explain please?

 

[JT1024]

I think a "hit" is interpreted as XMRV+.... So the number of XMRV positive tests in overlapping conditions would be 35%. Someone please correct me if I'm wrong.

 

[abc123]

This is infuriating. Like others, I want and need to know how to reduce and prevent possible transmission. I am willing to give these researchers the benefit of the doubt and be overly cautious. Better safe than sorry.

Previously Dr. M compared XMRV to HIV, and suggested common HIV "precautions" like not sharing toothbrushes or razors (to prevent transmission by blood). Seemed sensible enough.

Now she is suggesting XMRV is much more contagious, including by saliva, and is possibly involved in autism, and other diseases, including "frightening" levels of cancer in families of someone with CFS, but doesn't suggest any precautions. She must realize the fear and panic this speculation could cause.

It doesn't seem to make sense--if it's that easy to transmit, more than 4% of normals would have it. (But that 4% could be wrong, of course, due to inaccurate testing. Round and round we go.) Unfortunate that these Q&A sessions don't give the doctors opportunity to FOLLOW UP with additional questions. She always gets the last word; and either she's ahead of everybody, or she's wrong and creating unnecessary fear.

Simple question: If I have XMRV, and it causes disease, how do I avoid transmitting it to others?

The answer may be decades away.

 

[Esther12]

It doesn't seem to make sense--if it's that easy to transmit, more than 4% of normals would have it.

Maybe XMRV is a retro-virus that the human body can fight off? We've been assuming that's not possible, but I don't think we can be sure at this point. Apparently XMRV is more susceptible to our bodies natural defences than HIV.

 

[V99]

Maybe XMRV is a retro-virus that the human body can fight off? We've been assuming that's not possible, but I don't think we can be sure at this point. Apparently XMRV is more susceptible to our bodies natural defences than HIV.

Esther. The XMRV antibodies they have found, do demonstrate an immune response.

 

[JillBohr]

Simple question: If I have XMRV, and it causes disease, how do I avoid transmitting it to others?

Great Question abc123. My take (non-scientist here) from the Q&A session is that is can be transmitted easily via saliva, vomit, etc. because of it's structure but in the same breath, this retrovirus does not replicate very rapidly. Just from observing all of the controversy over finding this virus via PCR, it does not look like it is easy to find. Remember Cooperative Diagnostics pulled their XMRV test from the market because they were testing only 4 drops of blood and if you look at our informal poll here, only one person tested positive. It is amazing that someone here did test positive.

 

[firefly]

Agreed abc123. Incredibly frustrating. I'm doing my best to live with uncertainty these days, but it's emotionally draining. Over the past year or so I've felt well enough to ocasionally date. But ever since this XMRV business has come out, it's been a whole different story on that front. I have no idea what this means in terms of relationships. Condoms is a nobrainer, but kissing remains a huge unknown.