Is XMRV a brain wasting disease?

[RustyJ]

Not sure where this thread should go. Apologies if in wrong place. Someone on another thread mentioned the fact that the public perception is that HIV kills, and ME/CFS... well, just makes you a bit tired. Therefore it's not a threat.

Maybe it's time to redefine the disease, not just the name. Make it scarier. Something that will make people sit up and notice.

Why don't we focus more on the neuropathic symptoms. In my case the neuropathic symptoms are considerable. Memory loss, cognitive problems, sensory disruption. Immune dysfunction is also a major issue with a potential link to oncological issues. And a host of others I can't remember. I have had SPECT scans that shows progressive and localised brain dysfunction.

So why not call it brain wasting? That would get people to sit up and listen.

 

[glenp]

I havent had spect but the neuro psych testing that showed slowed responses - that was a few years ago and I know it is worse now

glen

 

[bullybeef]

Two of the three most common causes of death in ME is heart failure, and cancer...I think those will do....oh, and that it maybe contagious!!!

That scares the cr*p out of me!!!

 

[RustyJ]

Two of the three most common causes of death in ME is heart failure, and cancer...I think those will do....oh, and that it maybe contagious!!!

That scares the cr*p out of me!!!

The number of deaths as a result of heart disease or cancer attributed to ME is not all that significant. People will just brush that off. Its a numbers game. But if everyone suffers brain wastage, which I believe all ME sufferers do, then that is a very serious threat to the person in the street. Look at the panic caused by Mad Cow Disease. Apart from the death thing, there are a lot of similarities to ME.

Public perception of how dangerous ME is will be the defining factor in whether is treated seriously by the authorities, even if all the research in the world shows the link between XMRV and ME. At the moment it just doesn't come across as being dangerous. And I simply don't think messing around with the name is going to make a significant difference either.

What about brain wastage and muscle wastage?

 

[muffin]

I have not yet been tested for XMRV but will when we hit 1 July and the backlog calms down. I did have my brain mapped (brain waves) and the midsection of the brain showed a "Viral Signature". The brain wave people didn't know if the viral sig was active or not. Guess they would not be able to tell until I was dead and they got into my brain. I also have another smaller black area in the left frontal lobe. The brain people will not comment or even guess what that is but they think it is not a virus. They just don't know.

I admit, even though I know that my brain is so terribly damaged and no memory or ability to think/write, still, seeing those black areas (the midline section area was a very large, black area), it did upset me. So, I do have some proof that something got to my brain and did damage in two different areas of it. And yes, I do think that CFIDS CAN POSSIBLY be progressive. But we are all so very different, I would not give up the ship on the brain and recovery.

 

[KnightofZERO]

In Doctor Hyde's book on ME/CFS (The Clinical and Scientific Basis of Myalgic Encephalomyelitis--Chronic Fatigue Syndrome) there are many scans of blood flow to patients' brains before and after exertion. Our brains look not all that great at baseline ( compared to controls ) but after exertion they look absolutely terrible in terms of blood flow!

There is evidence that this illness produces trauma to the brain --lots of evidence! There are also studies finding an abnormal amount of lactate (a metabolite) in our brains. In one of the recent webinars Dr. Anthony Komaroff was talking about a study showing that when you measure electrical patterns in patients' brains these are abnormal as well. I don't think this particular one has been published but I may be wrong about that.

Additionally in the most-well known case where a M.E./CFS patient's brain was autopsied after their death they found evidence of inflammation (Sophie Mirza).

 

[kurt]

If you consider the monkey study, that showed XMRV was mostly in organs. One test showed presence in the brainstem of a female, but for the most part XMRV was in vital organs besides the brain.

ME/CFS on the other hand certainly does involve some type of global brain dysfunctions.

 

[natasa778]

If you consider the monkey study, that showed XMRV was mostly in organs. One test showed presence in the brainstem of a female, but for the most part XMRV was in vital organs besides the brain.

yes but they forgot to look at brain vascular endothelium ... hopefully should be doing that soon, also looking closer at microglia

they also didn't look (yet, but could be doing so now) at what happens re brain/CNS infection if the virus is passed early on, ie if young animals are infected at any time before blood brain barrier is fully formed...

 

[natasa778]

oh and another factor that could be at play here is that over time xmrv in the gut would be causing all sorts of imbalances, including bacterial dysbiosis AND bacterial translocation to blood, which in turn would be contributing to blood brain barrier 'leakage' and allow for the passage of viruses or viral products to the brain. in theory that is, but this is also something they couldn't have checked or accounted for in those monkeys...

 

[Sing]

Those monkeys didn't get to live to old age either before their brains were autopsied. We live 25 or however many years after falling ill, while trying to handle responsibilities and deal with challenges of all sorts, so I can't see that this study is that applicable to human beings.

Sing