Mikovits speaking at UCLA on XMRV on Oct. 8

Cort

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Latest from the XMRV Buzz on Dr. Mikovits talk

D
r. Mikovits UCLA Talk - Dr. Mikovits talked about viral/DNA interaction in ME/CFS stating that she's identified 6 DNA defects that could make people with ME/CFS more susceptible to viral invasion - a tack that Ian Lipkin appears to be taking with autism; it's not just the virus - it's the viral - genome connection that confers disease.

She reported XMRV is more easily detectable in the cell free blood plasma than in PBMC's. Viruses, of course, infect cells, replicate in them and then travel through the plasma looking for more cells to infect.

In the background info she noted the RNase L and NK cell abnormalities in many people with ME/CFS which could decrease their ability to fight off pathogens. (Interestingly, early Dr. Mikovits reported that XMRV infection was not associated with either of those measures; instead it was associated with interferon levels. Earlier she also reported that she had found an immune signature in XMRV positive patients; that paper will go a long way towards clearing up the what immune abnormalities are associated with the infection. However, that paper probably, one would guess, will not get published until the research community has come to a consensus on XMRV.

Dr. Mikovits explication of the MLV's effects on mice was almost painful in how it closely matches some ideas regarding CFS. She noted how MLV's tend to replicate in the epithelial cells lining the blood vessels in the brain, which activates neuro-glial cells causing them to produce pro-inflammatory cytokines resulting in 'leaky capillaries', inflammation and neural damage.

Dr. Baraniuk's fascinating spinal fluid proteome study findings suggested a very similar scenario; increased inflammation (associated with amyloid factors) that stick to and puncture blood vessels causing leakage (and more inflammation). There is also intense interest in the role neuroglial cells play in producing pain in FM and other mysterious pain disorders. Plus virtually everybody, it seems, is interested in the role cytokines produced in the brain play in CFS. Cytokines, for instance, trigger 'sickness behavior' which is nothing more than a weird way to refer to the fatigue, pain and other fluey symptoms associated with colds. Even the CDC is very interested in the role Interferon plays in CFS (ironically enough - it's a cytokine Dr. Mikovits associates with XMRV). So there's alot of potential overlap between the damage Dr. Mikovits reports MLV's cause and findings in ME/CFS. Thanks to Andrew for providing a friends summary of the event.

Dr. Baraniuk's followup brain proteome study is finished and my sense, in talking to him, was that results were good'. A validation of his first paper would be a huge win.
 

Jemal

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Don't know what to think of this. MLV's hanging out in the brain, DNA defects, neural damage... somehow it doesn't sound so encouraging for our treatment and potential recovery. But maybe I am just a bit depressed today :rolleyes:
 

August59

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Don't know what to think of this. MLV's hanging out in the brain, DNA defects, neural damage... somehow it doesn't sound so encouraging for our treatment and potential recovery. But maybe I am just a bit depressed today :rolleyes:
If they can figure out how stop the progression of the damage and get the immune system functional again the body can do a lot healing on its own. Getting rid of the inflammation in the brain just seems like a blessing in itself.
 

Otis

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Don't know what to think of this. MLV's hanging out in the brain, DNA defects, neural damage... somehow it doesn't sound so encouraging for our treatment and potential recovery. But maybe I am just a bit depressed today :rolleyes:
It's something I'd rather not think about but it can explain why we have different disease courses. If the virus hits one part of the brain we get pain, another part hormonal issues, etc. Brain fog may be quite literal. Any Tom Hanks fans out there. "I have a Brain Cloud."
 

George

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Don't know what to think of this. MLV's hanging out in the brain, DNA defects, neural damage... somehow it doesn't sound so encouraging for our treatment and potential recovery. But maybe I am just a bit depressed today :rolleyes:
I hate those days Jemal. On a bright note (my brain seems o.k. today) I don't know of anyone becomeing an idiot that wasn't one befoe they got sick! We all know that there are problems with cognative function and I think we all have kind of a roller coaster ride of up days and down days, days when we have no control over our emotional reactions to things and days when we are pretty normal. But nobody has ever had their brains leak out of their ears, at least that I know of. (grins)

People who report recovery of the time and spontanious kind seem to report that they still have some congative difficulties but not anywhere near the same level as during obvious illness, and so far (big qualifier here, grins) the reports that I've read on people who took Ampligen there has been a return to normal or near normal levels, using that drug, of cognative function. The problem with Ampligen seems to be that folks don't get all of their stamina back.

I think the question on congnative function is "if you could have your brain work the way it does on your best days with the illness, could you live with that???". If we can get enough relief to be able to function (cognatively) as well as we do on our best days would that be good enough?

I'd take it. (cheeky grins)
 

Jemal

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Thanks for the replies, they made me feel better. Especially the examples of patients that have recovered most of their health. So there's still hope for us :)
I guess I was just hoping that they would give us some kind of medicine that combats the virus and we would be cured (or at least would make us feel a lot better). But as always it looks like it's going to be much more complicated.

I have noticed that taking medicines that reduce inflammation have helped tremendously (been taking Ibrupofen daily for almost a year now). Unfortunately most of those medicines have serious side effects or will only be prescribed for short periods (had Doxycycline for a month, an antibiotic that's also anti-inflammatory).

Anyway, I am having a bit of a rough week. At the moment I am suffering from a form of Folliculitis that is found primarily in HIV patients (because of the compromised immune system). And I don't have HIV for sure, but I have some suspicions about another virus...
 

George

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It's something I'd rather not think about but it can explain why we have different disease courses. If the virus hits one part of the brain we get pain, another part hormonal issues, etc. Brain fog may be quite literal. Any Tom Hanks fans out there. "I have a Brain Cloud."
That's a really good point Otis, I hadn't thought about it from the way round. My cognative problems do seem related to my monthly cycle and I have never had the pain issue that other seem to have. Also (not to be me, me, me) It seems like certain parts of my cognative function suffer more as if particular cell types are being targeted. For instance I can remember "life stories" that I've told over the years but I have no visual memory of anything past a few weeks or months. As if the area responsible for storing visual memory is non accessable. Hmmm, darn good stuff there.

I still really really like your er, em ,. . . avatar. (grins)
 

alex3619

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Hi, Punctured blood vessel lining would also explain two things. First, there are a lot of blood vessels in the gut. XMRV may be directly responsible for "leaky" gut. Second, as an alternative explanation to brain fog - think ongoing micro-strokes. The brain does not like blood in it. If small leaks occur regularly, the net effect wijj be a like a hit and run microstroke event, almost like a guerrilla war. the brain can recover, with some minor damage, but then it happens again and again and again. Not a happy thought. Full recovery is still possible, but you can expect some permanent memory and skills loss if this is true. We can relearn though. This may not be just about cytokines.

Bye
Alex
 

Otis

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I'd take it too George, but with some sense of loss. I wonder is there is a new form of grieving if we get better but hit the ceiling well below our expectations and our personal talents take a hit. I'm a stubborn cuss (I'm sure you didn't notice ;)) and resolutely believe all the ground I've lost is temporary - most of the time, anyway, so that would be adjustment. Well, as I tell my Dr., "we adapt".

Now who drooled on my screen. Aww, George not the keyboard too? :D
 

alex3619

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For instance I can remember "life stories" that I've told over the years but I have no visual memory of anything past a few weeks or months. As if the area responsible for storing visual memory is non accessable. Hmmm, darn good stuff there.
HI George,

You have the same memory issues I do it seems. There are several different types of memory in the brain. Visual memory, memory of actual events, is sometimes called episodic memory (after episodes or sequences of events). Semantic memory is about ideas. My semantic memory is good (not as good as it should be, but enough to fool most that I have a functioning memory) but my episodic memory is fubar - dementia level fubar. You say you can recall weeks or months: most things I can't recall from earlier today. Ideas, yes, these I recall, the events leading to those ideas: what events, are you sure you are not kidding me? Ideas allow abstract thought, planning etc. I am not completely sure what effect a serious loss of episodic memory is thought to have, I have never researched it, but I feel it will fit well with "brain fog" type events.

Bye
Alex
 

George

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HI George,

You have the same memory issues I do it seems. There are several different types of memory in the brain. Visual memory, memory of actual events, is sometimes called episodic memory (after episodes or sequences of events). Semantic memory is about ideas. My semantic memory is good (not as good as it should be, but enough to fool most that I have a functioning memory) but my episodic memory is fubar - dementia level fubar. You say you can recall weeks or months: most things I can't recall from earlier today. Ideas, yes, these I recall, the events leading to those ideas: what events, are you sure you are not kidding me? Ideas allow abstract thought, planning etc. I am not completely sure what effect a serious loss of episodic memory is thought to have, I have never researched it, but I feel it will fit well with "brain fog" type events.

Bye
Alex
Dang Alex, do we have a thread on this somewhere??? If not ya wanta start one??? With all the talk of brain eating and such maybe we should look at exactly what parts of the brain are affected, and get some of our long termers to compare timelines in the cognative function arena.

What think you?
 

Otis

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I'm in. I'll dig up a link to a fibro researcher (Patrick Wood) who has been looking at spect scans, fMRIs (while the poor subject is in pain). Fascinating stuff. I haven't looked up the papers yet but they sound fascinating. This guy seems to operate without much funding, he begs borrows it steals access to the scanners.
 

August59

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Thanks for the replies, they made me feel better. Especially the examples of patients that have recovered most of their health. So there's still hope for us :)
I guess I was just hoping that they would give us some kind of medicine that combats the virus and we would be cured (or at least would make us feel a lot better). But as always it looks like it's going to be much more complicated.

I have noticed that taking medicines that reduce inflammation have helped tremendously (been taking Ibrupofen daily for almost a year now). Unfortunately most of those medicines have serious side effects or will only be prescribed for short periods (had Doxycycline for a month, an antibiotic that's also anti-inflammatory).

Anyway, I am having a bit of a rough week. At the moment I am suffering from a form of Folliculitis that is found primarily in HIV patients (because of the compromised immune system). And I don't have HIV for sure, but I have some suspicions about another virus...
Jemal - If you don't mind me asking, where is the Foliculitis located? I have something that I think is foliculitis on the back of my head. Lots of bumps sort of connected to each other. The bumps are small at the surface, but seem to be larger just under the skin. What ever it is, it stays festered up and it's hard not to pick at it. Thanks
 

alex3619

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Hi George, I think your idea to start a thread on this (long term cognitive deficits) has merit. I might do it myself later today, if I remember - but feel free to start it before then. ;-) Bye, Alex
 

George

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Hi George, I think your idea to start a thread on this (long term cognitive deficits) has merit. I might do it myself later today, if I remember - but feel free to start it before then. ;-) Bye, Alex
I started one in symptoms called Cognative Dysfunction; what parts of your brain are missing? (grins)
I started out with a breif discription of what we might be trying to track, a look at symptoms, research into cognative dysfuntion, a look at long term effects in current board members, etc.

I listed my own symptoms but I may go back and edit for things that I'm NOT having problems with. I think the areas of the brain that are protected may be as important as those that are problematic. I look forward to your's and other reply's.
 

Jemal

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Jemal - If you don't mind me asking, where is the Foliculitis located? I have something that I think is foliculitis on the back of my head. Lots of bumps sort of connected to each other. The bumps are small at the surface, but seem to be larger just under the skin. What ever it is, it stays festered up and it's hard not to pick at it. Thanks
I don't mind. It's located all over my scalp, lots of small bumps that are itching. Some festered up, some healing. Going to see the doctor again tomorrow.

Most of the time it's caused by a bacteria. People with a compromised immune system are an easy target. Also, in rare cases folliculitis can be caused by B12. So for the moment I have stopped taking B12 (I was taking crazy amounts of 400.000% of the recommended daily dose, but it helped a lot, it has annihilated brain fog for me).
 

Cort

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I'm in. I'll dig up a link to a fibro researcher (Patrick Wood) who has been looking at spect scans, fMRIs (while the poor subject is in pain). Fascinating stuff. I haven't looked up the papers yet but they sound fascinating. This guy seems to operate without much funding, he begs borrows it steals access to the scanners.
I met him at the OFFER Conference - a very interesting guy - he really seemed very creative. I'd love to hear about his work. He's finding alot of people with FM meet the criteria for ADHD and he thinks it probably true for ME/CFS as well. Looking at the criteria I tend to agree - particularly when I've overdone it.