what is likely prognosis if xmrv treatment becomes possible?

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Hi,

I know there probably is no definite information on this but I was wondering what is the likely prognosis for people with long term severe M.E. if XMRV is accepted as the cause ? Would a complete cure be possible? Particularly as regards cognitive decline and brainfog is this likely to be reversible with suitable antiviral drugs?

Thanks for any info

Jodie
 

Recovery Soon

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A couple months ago Judy Mikovotz said she anticipated an 85% to total turnaround for the longest and worse cases if XMRV is the cause.

Not sure what she was basing it on, but that was her number.
 

Sunshine

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This is very true, however there are so many damaging things that massive oxidative stress and inflammation over decades does to people a few I can think of are:

Lax, floppy premature aged/wrinkled skin - No cure.
Possible neuronal cell loss in brain and microvascular damage - No cure.
Brain atrophy in white matter. ?
Osteoporosis. ?
DNA/Mitochondrial damage. - Possible to halt to normal level of ageing process, but reverse?
Endothelial damage to lining of blood vessels. - Cannot reverse.

So I am waiting on this 85% figure and taking it with a pinch of salt. Remember Judy Mikovits herself said in her XMRV videos she knows nothing about ME/CFS, albeit maybe now she does! Perhaps when she made those comments she didn't know what the illness can really do? To be sure, we'd need to autopsy dead folk who have been very ill for decades with proven XMRV (HGRV) and show no signs of brain/CNS damage and other lasting issues that we know ME/CFS causes. This would be unlikely as the tiny amount of autopsies in the UK that have been done in severe ME/CFS, have shown brain/spinal cause immune inflammatory damage.

Currently we are no where near that. We have scientist Dr Ila Singh looking at bodies, but they aren't XMRV+ (HGRV) and all with known ME/CFS. She's just trying to see if she can find XMRV in the bodies tissues in random people. Where will scientists get the ME/CFS XMRV+ (HGRV) bodies? Due to the apparent low death rate in neuro immune ME/CFS who are XMRV+ (HGRV) it would take a long time to get them, unlike in HIV/AIDS. Until that is done, how can we ever know the true risk of having ME/CFS XMRV+ (HGRV?). We simply cannot.

Having said that, even if we recovered 85% functioning but lived with the legacy of ME/CFS ravaging damage in our bodies, I'm sure we'd all live with that and take it! Logically it would seem the longer one has been sick in a severe state of pro oxidative injury, the more damage has been done to the body.
 

Stone

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I got sick at age 33. I'm now 48 but I feel about 90, or what I imagine 90 must feel like. Actually, I have met 90-year-olds who could run circles around me on my good days. But even if I could recover to the level of functioning of one of those healthy 90-year-olds, I would be able to live with that. Really, at this point I'd be deliriously happy if they come up with a treatment that I can tolerate that would restore me to half the level of functioning of average people my age (dare I dream it?).
 

Daffodil

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dont forget lymph node fibrosis...thats an important one. also, fatty liver, thyroid damage, God knows what else. but we can still have some good years, though