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

[fingers2022]

There seems to be this problem with 'validation' in the UK.

Just yanking your chain, my friend.

Otis

Well, somebody's got to chain you yanks. If you need a lift Otis, let us know.
(not sure how this will translaste, talking of which that Bavarian guitarist sounds interesting, but went way over my small head...????)

On a slightly more serious note...well, a much more serious note for me....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]

On a slightly more serious note...well, a much more serious note for me....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.

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%.

 

[Dreambirdie]

DB,

A rider imbed. Mired ire - bad! Bade ride rim. Abide mid err. (That would be a cute trick!) Bared mid ire!

ETA I must admit he lost me with: Chinesely Roomely speakingly.

Translation: ME=MM=Maarten Maartensz=Re: Tantra Mamas Zen=ME as Zen Tantra Arm=A Zen Mantra Master - can't help it: AI-generated - whence by a Deep Analyis MM didn't bring it down...Gerrit?
MM in :sofa:

I am going to pretend like you and Koan made total sense to my virally laden brain---is that a barely loaded banana, or a vacuum looming by?
A Chinese room with zamboni mantra masters speaks volumes.

Now I know why my saliva is dangerous.

Cool! Yeah! Alright! :Retro smile:

 

[Otis]

Help I've fallen and I need a Lift Up

Well, somebody's got to chain you yanks.

Quite. I'd do it myself but the psych lobby would really chew me up. Just keep Dr. Mikovits on the loose please. :Retro smile:

If you need a lift Otis, let us know.

Yes help, my own company won't install one to get me on me weary legs in the morning.

Otis (wannabe lift operator)

 

[acer2000]

That is very interesting in that decreased interferon alpha is the only immune marker that correlated with XMRV infection. Unfortunately, I do understand cytokines very well. Does not IFN-Alpha cause fatigue and CFS symptoms in other diseases when using IFN-Alpha therapy? Also, does anybody know if IFN-Alphas is increased or decreased in autism?

Heh you know thats interesting because its one of the only cytokines (well its not really a cytokine sort of) that is not tested by the REDlabs/VIPDx "CFS" cytokine panels. At least last time I had it, this was not included... Maybe its hard to test?

 

[consuegra]

"The ONLY immune marker which correlated with XMRV infection 100% was decreased Interferon alpha."

What does this mean? I always assumed that elevated Interferon alpha as measured in serum was an indication of high viral activity. The old Immunosciences CFS profile had a target level for Interferon Alpha as <12.5 and the current Focus Lab Chronic Fatigue panel III has normal being <9.

Chris

http://cfspatientadvocate.blogspot.com

 

[usedtobeperkytina]

I was curious of what the long-living cells are. If I know what type of cells are long-living, I can see if my symptoms reflect a dysfunction in those cells, showing XMRV is likely very progressed in me.

I am assuming that GI and immune system and hair are short-living cells. I thought I remember my mother being told that this is why chemo causes nausea and loss of hair. The GI cells have to be replaced all the time and chemotherapy for cancer stops cell growth.

I assume neurons are longest-living cells. Did that rhesis macaques study find XMRV in neurons? I make this assumption because I remember somewhere someone saying at one time scientists thought neurons didn't make new cells. (So these cells must have to live a long time.)

If that's the case, I'm cooked. I definitely have evidence of cognitive problems. And the cognitive problems came after the fatigue. And if I have a relapse, I notice the cognitive problems get worse later. I thought this might show a stage or the disease. But I also wondered if I have just as much cognitive problems when the fatigue is real bad, but I can't tell because I don't try to do anything then. I don't make as many mistakes because I don't do as much.

Well, thanks to Google, I learned something new. The longest living cells are neuron cells that are also the biggest. A certain kind of neuron cell is from head to toe in the body. Sounds weird, but it must be true, I read it on the Internet. LOL

Any other long-living cells?

tina

 

[usedtobeperkytina]

ok

Might the low interferon alphas explain problems with natural killer cells?

Wikipedia says...

Interferons (IFNs) are proteins made and released by lymphocytes in response to the presence of pathogenssuch as viruses, bacteria, or parasitesor tumor cells. They allow communication between cells to trigger the protective defenses of the immune system that eradicate pathogens or tumors.

IFNs belong to the large class of glycoproteins known as cytokines. Although they are named after their ability to "interfere" with viral replication within host cells, IFNs have other functions: they activate immune cells, such as natural killer cells and macrophages; they increase recognition of infection or tumor cells by up-regulating antigen presentation to T lymphocytes; and they increase the ability of uninfected host cells to resist new infection by virus. Certain host symptoms, such as aching muscles and fever, are related to the production of IFNs during infection.





So, where do I get interferon alphas? Can I buy some at my supplement store?

It looks like may be XMRV purposefully hinders interferon alphas so it can thrive. We have a war on our hands. But we have spies getting tactical information. Our "intelligence team" is successfully learning the XMRV battle strategies. Won't be long.


Tina

 

[usedtobeperkytina]

I wish I was an immunologist. On Wikipedia, under interferons, I am seeing lots of words that I have seen before but don't have full understanding of: RNase L, immunoproteasome (well, I have seen immunoprotease), T cells.

Oh wow, says some viruses hinder interferon signaling. Guess what.... EBV is one of them.

If only I understood all of this, I bet it would paint all the actors clearly filling their roll to tell one story.

I love mysteries. I love figuring out mysteries. How exciting all this is, especially to those that understand it all.

Tina

 

[natasa778]

Low Intereferon alpha

I wonder if one possible explanation for low levels in blood could be high levels in brain and cerebrospinal fluid - have those been measued in CFS??

This is odd but is the case for example with TNF-alpha in autism - very high levels in brain and CFS, but low levels in the blood. Again with interferon alpha, high levels in CFS and brain, no data (?) on blood levels.

Anyone know enough about IFN alpha to comment? Could this be the case of molecules that are produced locally in infected tissue, and therefore not circulating in the blood? Or something like that.

 

[citybug]

Attachment to IACFS/ME Newsletter

Q: It has been said in the new paper article that XMRV is transmitted by blood, sex and body fluid. The author
may have meant that this is what happens in mice but is not yet defined for human. Sexual transmission (men
who have sex with men) and transmission through blood (hemophiliacs) were long suspected based on
epidemiologic data before HIV was found to be cause of AIDS in 1984. ME/CFS does not have typical pattern
of sexual transmission although there are rare mentions of transmission between couples. Most of my patients
have developed ME/CFS after flu-like illness with respiratory and/or gastrointestinal symptoms, which would
speak against sexual and blood transmission. Furthermore, why are children developing this illness and why
clusters of cases occurred in Incline village and other areas, if the transmission is as stated. Please clarify this
issue.
Thank you,
John K. Chia M.D.

A: Newspapers are notorious for extrapolating data and drawing conclusions. We and Dr. Stuart Legrice
attempted several times in writing to correct the mis-statements in the Wall Street journal and the NY Times.
The Science paper showed that XMRV was blood borne, infectious and transmissable SUGGESTING blood
and body fluid transmission although NO studies have proven transmission of any kind. The authors meant
this is the mode of transmission for the other two human exogenous retroviruses HTLV-1 and HIV. XMRV is
NOT a Mouse virus and NO ONE knows how it got into the human population). This author has never worked
with mice.
It is important NOT to think only of HIV when considering modes of transmission. Body fluid means ANY body
fluid, blood was proven in the Science paper, but one can also consider saliva, vomit, urine and feces. XMRV
is a gammaretrovirus (simple) and these tend to be much more stable than HIV and HTLV1 which are complex
retroviruses. XMRV has been demonstrated by us in the science paper to be very stable and easily
transmissable CELL Free unlike its cousins HTLV (which is tightly cell associated) and HIV, which is very labile
and not stable in vomit feces or urine and while it can be shed and theoretically transmitted in saliva this is rare
as it is labile cell free as well.. the flu like illness and gastrointestinal issues are consistent with stability in other
body fluids and particularly in acidic environments such as the gut and urineWe have isolated infectious
XMRV from saliva and prostatic secretions to date and tested its stability. These are unpublished data and we
await the development of a quantitative viral load assay, but when we can quantify the stability, my hypothesis
is that XMRV is the most stable human retrovirus to date and while no human retrovirus (or animal retrovirus is
transmitted airborne) our hypothesis is that we will find the transmission is in other body fluids and outbreaks
occur because of the stability of XMRV in other body fluids

Q: How would teachers in the same school, for example (who were not misbehaving), contract the disease from each other?

A: See above but what if XMRV is more stable in body fluids such as saliva, urine, vomit such that exchange of body fluids less directly than sexual contact and blood borne direct infection were the mode of transmission. This hypotheses would satisfy the familial and close contact such as a school particularly if a co-pathogen enhanced transmission and progression as was the case of HIV and HSV in Africa.

I hope it turns out we don't have to freak out about saliva. From many patients experience it seems like saliva isn't going to be the strongest carrier. Vomit, urine and feces would explain school outbreaks and hospitals from bathrooms, or food preparation. If stomach lining cells are rapidly reproducing and then being thrown around., liking acidic environments.., being brought up by Dr. Chia. A co-pathogen might even be a common flu.
My trigger seemed to be amoeba histolica. Since I hadn't been traveling, doctors thought I must have gotten it from a food preparer. Once people learn about this, it's going to be like a lot of other virally induced illnesses out there. And people might be most worried about the percentage that don't know they are ill.

I hope the part about hormones is getting out to doctors and women. Just tried more hormones before my latest big crash.

Q: If XMRV is present but inactive, are there any suggestions as to what could be a trigger for (re)-activation?

A: Estrogens, Androgens, Cortisol (stress) and inflammation.

 

[caledonia]

So how about if the XMRV+ teachers work with XMRV+ kids? Problem solved, a new job niche created.

 

[lansbergen]

I assume neurons are longest-living cells. Did that rhesis macaques study find XMRV in neurons? I make this assumption because I remember somewhere someone saying at one time scientists thought neurons didn't make new cells. (So these cells must have to live a long time.)

If that's the case, I'm cooked. I definitely have evidence of cognitive problems.

Well, thanks to Google, I learned something new. The longest living cells are neuron cells that are also
the biggest. A certain kind of neuron cell is from head to toe in the body. Sounds weird, but it must be true, I read it on the Internet. LOL

I am not worried. We have plenty neurons. When some are damaged new networks can be made. It will take time and training. I read there are stemcells in the brain so even in the very unlikely situation we have not enough neurons left new ones could be made from the stemcells.

Based on my own experience I think it is a matter of substances hindering the neurons doing their jobs properly and storing infomation in places that cannot be accessed fast enough at the moment it is needed.

I learned that in my case information was not lost. When my improvement took place I noticed that more and more information was getting better available. My brain had to work very hard to perform overdue tasks. At the time I described it as cleaning and reorganise a lot of cupboards. It took a lot of time, that was frustrating but none the less I was very happy it slowly became better and better.

 

[Gerwyn]

I wonder if one possible explanation for low levels in blood could be high levels in brain and cerebrospinal fluid - have those been measued in CFS??

This is odd but is the case for example with TNF-alpha in autism - very high levels in brain and CFS, but low levels in the blood. Again with interferon alpha, high levels in CFS and brain, no data (?) on blood levels.

Anyone know enough about IFN alpha to comment? Could this be the case of molecules that are produced locally in infected tissue, and therefore not circulating in the blood? Or something like that.

This might be interesting Natasa

nhibition of neural and neuroendocrine activity by alpha-interferon: neuroendocrine, electrophysiological, and biochemical studies in the rat.

Saphier D, Roerig SC, Ito C, Vlasak WR, Farrar GE, Broyles JE, Welch JE.

Department of Pharmacology & Therapeutics, Louisiana State University Medical Center, Shreveport 71130-3932.

Erratum in:

* Brain Behav Immun 1994 Dec;8(4):374.

Abstract

In our earlier studies we have demonstrated that recombinant human interferon-alpha 2A (rHu-IFN-alpha 2A) inhibits hypothalamo-pituitary-adrenocortical (HPA) secretion f

After Judy M,s Qand A I am looking at the interferon alphas .Does anyone mind if I post my findings on this thread.?here area number of different interferon alphas just to make life fun!

 

[Overstressed]

I've had in my mind for quite sometime about what will happen once the XMRV thing gets out into the general population.

This population is also including doctors in every fashion, because as I became infected, I went to a stomatologist, in an hospital. Well, this person didn't touch me at all, he looked from a distance into my mouth, and said: you need to get an HIV-test, because these symptoms have been seen with HIV+. If we are infected with XMRV, you can be sure, there are doctors, dentists, that will refuse to treat you.

As this happened, besides the shock of maybe being HIV+ -despite having had a dozen HIV tests- I was very touched by this behaviour.

OS.

 

[Mithriel]

Lansbergen said

I am not worried. We have plenty neurons. When some are damaged new networks can be made. It will take time and training. I read there are stem cells in the brain so even in the very unlikely situation we have not enough neurons left new ones could be made from the stem cells.

ME is considered primarily neurological so XMRV fits well into that.

My symptoms have always been more neurological than anything else. It started with episodes when I couldn't speak, double vision, even blindness and transient paralysis.

I am now very neurologically challenged. I have a stair lift because I don't have enough precision of movement to get my foot onto a step. There are not many of us with such an extreme form of ME but it does happen, the same way some people have mainly food allergies. It may be that I have MS as well as ME (I have a lot of the other ME symptoms, especially PEM) but the XMRV may be responsible for both.

Mithriel

 

[lansbergen]

This might be interesting Natasa

nhibition of neural and neuroendocrine activity by alpha-interferon: neuroendocrine, electrophysiological, and biochemical studies in the rat.

Saphier D, Roerig SC, Ito C, Vlasak WR, Farrar GE, Broyles JE, Welch JE.

Department of Pharmacology & Therapeutics, Louisiana State University Medical Center, Shreveport 71130-3932.

Erratum in:

* Brain Behav Immun 1994 Dec;8(4):374.

Abstract

In our earlier studies we have demonstrated that recombinant human interferon-alpha 2A (rHu-IFN-alpha 2A) inhibits hypothalamo-pituitary-adrenocortical (HPA) secretion f

After Judy M,s Qand A I am looking at the interferon alphas .Does anyone mind if I post my findings on this thread.?here area number of different interferon alphas just to make life fun!

Natasa started a new thread on interferon alfa.

 

[RustyJ]

Hi all. From day one 20 years ago, I have been very careful when kissing or even touching anyone. I believed deep down that this was a virus. But I wonder if I had convinced myself my condition was not psychological or whether it was the result of some instinctive reaction. Did anyone else have the same experience?

 

[lansbergen]

Mostly during flare ups I had problems with speaking , swallow, coordination, breathing, heartbeating etc. When I was at my worst breathing was not something that happens automatic, I needed everything I had left to concentrate on breathing to continue. I was afraid it would stop if I fell asleep. Many times my body refused to make the movements I wanted it to do. Luckely the episodes parts of my body were paralysed, were short.

 

[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