DR. Bell's November news letter on XMRV

gracenote

All shall be well . . .
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"Let's do it right from the beginning."

One of many interesting quotes from Dr. Bell's November newsleter:

XMRV DNA was found from 68 of 101 patients (67%), and this was in the Science paper. That leaves 33 patients with CFS who were negative. But on further testing 19 of these 33 are XMRV antibody positive, 30 of these 33 had transmissible virus in the plasma, and 10 of these 33 had protein expression. Overall 99 of the 101 patients show evidence of XMRV infection.

These results have interesting implications. The most important is that there is not a simple test now that will tell you if you have XMRV or if the virus is active in your system. And we need a good control study using all three measures to accurately know control presence of the virus. This is not a fly-by-night operation. Right now, it is necessary to do several tests to know the XMRV status:

a) DNA by PCR

b) Viral infectivity

c) Detection of viral proteins

d) Antibody to the XMRV envelope

As time goes on and we learn more, this process will be simplified. What I do not want is poor science that will cast doubts on an illness that already has its fill of doubters. Lets do it right from the beginning. If by doing it right XMRV proves not to be the cause, so be it. Something is the cause.
 
K

_Kim_

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Dr. Bell is out of retirement

The LRG is back in business. A couple of phone calls, a pizza, and we are off again
Dr. Bell's synopsis of Dr. Petersen and Dr. Coffin's presentations at the CSFAC is right on! Easy to read, easy to understand.

He is down with XAND being the new name, he's already scheduled one lecture about it, and he is up to traveling to give talks about XMRV to support groups.

For anyone who is of the mind to support the grassroots efforts of Dr. Bell, he is (for the 1st time ever) accepting contributions to help him move his new plans along. Any any extra $$ that doesn't get spent on pizza gets shuttled over to the WPI. :eek:
 

kamina

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I think my old man is going to attend his lecture (since we are only about 30 mins away). :)
 

Christopher

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It's very reassuring to hear this from Dr. Bell. I had a feeling that XMRV would be found in many of those 33 patients, but did not know the reasons. Dr. Bell has provided them. I hate having to wait for more studies, but there are people that have been suffering for much longer than I. I'm lucky this is going down when I've only been sick for a few years.

Of course we still have to prove that the virus is causative of our symptoms. Not too sure about that yet.

Also I wonder in how many other diseases XMRV will be found.
 

jackie

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Thanks guys, for the heads-up!

I actualy happened to check his website yesterday - looking for an update - but it wasn't up until today!

I love Dr. Bell! I've followed his newsletters, read (several tmes, slowly!) his free e-book (faces of CFS) and gleaned so much pertinent info from the case histories. Although they are from some time ago - nothing has changed about "us".

About a month ago I figured it was finally time to send him a thank you.

I e-mailed him with my thanks and appreciation for his years of hard work, perseverance and dedication (AND complmented him on his beautiful photography - everyone going to his site should take the time to view that!)

He was nice enough to send me a reply - thanking ME for thanking HIM - and enjoying his photos, too!

His "take" on early xmrv testing, has made me pause. I've been on the fence about this...and have been ready to fight my various docs to get it done NOW.

Don't want to jump the gun - so my I.D. Doc will get the final say, I guess.

I also found it interesting that he mentioned patients with various viruses (I have chronic Enteroviruses) feel better on antivirals - for AWHILE.

After 3.5 years on them, I'm beginning to see the signs that they aren't working as well. Suppose this is to be expected.

:confused:jackie
 
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xmrv needs 4 tests (Nov 09)

One of many interesting quotes from Dr. Bell's November newsleter:

XMRV DNA was found from 68 of 101 patients (67%), and this was in the Science paper. That leaves 33 patients with CFS who were negative. But on further testing 19 of these 33 are XMRV antibody positive, 30 of these 33 had transmissible virus in the plasma, and 10 of these 33 had protein expression. Overall 99 of the 101 patients show evidence of XMRV infection.

These results have interesting implications. The most important is that there is not a simple test now that will tell you if you have XMRV or if the virus is active in your system. And we need a good control study using all three measures to accurately know control presence of the virus. This is not a fly-by-night operation. Right now, it is necessary to do several tests to know the XMRV status:

a) DNA by PCR

b) Viral infectivity

c) Detection of viral proteins

d) Antibody to the XMRV envelope

As time goes on and we learn more, this process will be simplified. What I do not want is poor science that will cast doubts on an illness that already has its fill of doubters. Lets do it right from the beginning. If by doing it right XMRV proves not to be the cause, so be it. Something is the cause.
Hi gracenote

great quote.

I think this should be somewhere prominent in the testing section

+ have a title that puts it in testing. Many people could miss this and I think it's key info.

I'm not sure of the protocol.
Can I copy your paste and start a new thread and/or add it to another thread, or is that rude? (if it is, think I've done it before - gulp - apologies)
Do I ask you to do it?
Should I have PMed you...........,

if:)
 
A

Aftermath

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New Threads

You can do it however you like--either spin off a new thread (feel free to copy a post or two). Or, if you want, I can add testing to the title of this thread. All of the info you are discussing is still very relevant.

Let me know.

What I don't like is when people go totally off on a tangent (e.g. starting a debate on socialized medicine on a thread about a particular doctor). That discussion is certainly welcome, but thread hijacking creates chaos for newcomers to the board who are trying to mine information from old threads.

It is situations like that where a new thread should be started and a hyperlink placed into the existing one.
 
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You can do it however you like--either spin off a new thread (feel free to copy a post or two). Or, if you want, I can add testing to the title of this thread. All of the info you are discussing is still very relevant.

Let me know.

What I don't like is when people go totally off on a tangent (e.g. starting a debate on socialized medicine on a thread about a particular doctor). That discussion is certainly welcome, but thread hijacking creates chaos for newcomers to the board who are trying to mine information from old threads.

It is situations like that where a new thread should be started and a hyperlink placed into the existing one.
(arggh, just wrote a reply but it's gone. Second post lost today - here goes again)

Thanks Aftermath for clearing this up so quickly!

Okay, so I'll copy it to add to the xmrv thread. If you and Cort decide it warrants a sticky, you'll glue away.

if:)
 

gracenote

All shall be well . . .
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not rude

Way to go Islandfinn!

I just got back from my doctor's office to find a new thread started called "XMRV needs 4 tests" with my quote of Dr. Bell's comments. Just want to say THANK YOU VERY MUCH. You read my intent. :) I only had time to highlight the quotes before leaving for my appointment.

A couple of phone calls, a pizza, and we are off again.
Anybody else wishing they could eat pizza?
 
K

_Kim_

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did someone say pizza?

This probably belongs on the dreambirdie thread, but one night this week, I dreamed that I took some medicine, got all better and was eating pizza. Lots and lots of pizza :D Of all of the foods I've stopped eating, it's pizza I still have a hankering for. And Amy's Rice Crust does not satisfy!
 
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however off topic this may be, I have fun recipes, if you are interested, for a potato based crust and a polenta based crust (if you can handle corn, I can't really anymore) The potato one is better anyway.
hi sarahg - yum - potato crust. I'd love to get the recipe. DO miss pizza.

There is a recipe thread- maybe you could post it there http://forums.aboutmecfs.org/showthread.php?t=766

(sorry aftermath - tried a few times and can't get the globe to cooperate:()

if:):)