Ila Singh talks XMRV, replication, drugs, and animal studies (article + video)

[serenity]

thanks Julius, & i'm with ya' Wonko. as Robin said, even if XMRV doesn't turn out to be our smoking gun - the amount of research & attention it has generated is enough to make me happy

 

[cinderkeys]

Very exciting!

One thing puzzles me, though. It was my understanding that some ME researchers suspected a retrovirus all along. Why didn't somebody like Nancy Klimas -- who also works with AIDS patients -- try putting ME patients on antiretrovirals for HIV long ago, just to see if they helped?

I realize that AZT and the like are heavy-duty drugs. It's logical that doctors wouldn't prescribe them just as a throw-stuff-at-the-wall-and-see-what-sticks measure. But desperate times call for desperate measures, and if ME isn't desperate I don't know what is.

 

[usedtobeperkytina]

Well, I do know Klimas was interested in retrovirus for CFS because she invited and DeFreitas accepted a job to move to Florida and work with Klimas. The partnership didn't go far since DeFreitas became disabled.

Tina

 

[acer2000]

Very exciting!
Why didn't somebody like Nancy Klimas -- who also works with AIDS patients -- try putting ME patients on antiretrovirals for HIV long ago, just to see if they helped?

I have been asking this the whole time. Given the other drugs that have been tried on CFS patients: heavy duty antibiotics, toxic anti-herpes drugs (Valcyte, Gancyclovir, Foscarnet), Ampligen (a drug that isn't even on the market), IVIG, etc... you'd think that someone would have at some point said "what they heck - lets try some HIV drugs"?

It may, however not have made a difference. It looks like, given the result of some of these preliminary studies, that unless they actually tried AZT - none of the others would have worked. The only other drugs that have activity against XMRV seem to be integrase inhibitors. Those drugs are very recent.

 

[rebecca1995]

... you'd think that someone would have at some point said "what they heck - lets try some HIV drugs"?

I'm pretty sure that in the mid to late '90s, Dr. Darryl See did use AIDS drugs on CFS patients. I can't seem to find the reference now, though...the only thing that's popping up is the fact that he recently had to give up his medical license.

 

[Robin]

Maybe Nancy Klimas wasn't sure if they HIV drugs would work for an unknown retrovirus?

Singh mentioned Tropical Spastic Paraparesis. It's caused by HTLV, which seems more of a model for XMRV than HIV. HSP is a neurological/immune disorder in < 5% of seropositive carriers. Symptoms usually start 20-30 years after infection, are not fatal, but slowly progress. It's not commonly treated with antiretrovirals, though I don't know why, maybe they're ineffective?

 

[jackie]

very interesting robin....i was scanning your post and read "tropical spastic paraparesis" (haven't read Singh's interview yet...but surely will)...and a tiny bell went off in my foggy brain. Over six years ago during some neurological testing i was dxd with "asymmetrical myelopathy", "c-fiber polyneuropathy" - with hyperreflexia, pos. Babinski sign and a host of other abnormal neuro findings (no MS)...but no explanation as to why i had these. (in fact, the report was actually lost for over two years...meaning neither I nor my doctor saw these results for that long...and when we did, no one seemed interested in investigating the possible cause (well, other than ME!...i did, but my research only yielded a small amount of info..such as a few causes of myelopathy being TSP (I concluded at the time, that i was in the wrong geographic area for that to be a problem...was i wrong?), diabetes (I dont have), spinal cord compression (don't know), Transverse myelopathy, paraneoplastic syndrome (no), HTLV (dont know, never tested for the antibodies).....and Herpes Zoster (which I now have chronically!). (haven't yet been tested for XMRV...now wondering if i should)...and if i should be trying to connect the "dots"!? I want to know WHY i have Myelopathy. Have others with me/cfs been routinely dxd with this? Anybody here?

(just my OPINION...but i bet drs have been experimenting with antiretrovirals (off label) for quite some time....on the very ill with cfs.) One of my other drs discovered the advantages of using ANTIvirals for me/cfs, because he saw the help they afforded hiv patients with multiple opportunistic viruses....in the "early days" of treatments.
so frustrating...now that so much "new" info is rapidly becoming available for researching...i'm going downhill...and less able to take advantage this - and perhaps finding some answers to my puzzle. j

 

[starryeyes]

This is thrilling news. I sent an email of this video to my folks. I'm liking the April surprises so far too and I'm really grateful to all of you for being here and commenting even when some of you get a bit off track and ornery. :victory: :sofa: :victory: