Free Mikovits web talk from Cheney Clinic/Wednesday Feb. 10th! 1:00 EST

[CJB]

I still have a question that I don't think has ever been answered. Judy has said that XMRV is not contagious although it is infectious. How does anyone account for the outbreaks that lead to ME/CFS? Has that ever been discussed or am I just missing something?

I am listening to Dr. Bell's lecture. He enumerated all of the questions of this type and then said they will be answered with 5 years. When they solve the cluster question, I think that will explain a lot of the mysteries.

 

[_Kim_]

As one of the Uk xmrv +ves I know that Dr Judy can not say much about the UK results as they were doe through VIPdx. I am thinking about enquiring how to release my results to her so she can. I hope this is possible and I would hope that others tested in the UK may do so to but that is up to the individuals. It is on my long, ever expanding, never done, to do list.

joyscobby,

Your case may hold the evidence that WPI needs. How can we support/help you to make this enquiry?

 

[julius]

Gracenote,
When she says 'not contagious' she is saying it is not airborne. It is still transmissible by other means, but we don't know which.

Kim,
Yes, she mentioned transfusion in her last talk to I think. But definitely it would be the 'proof' we are looking for.

Sasha,
Yes, she said an advocacy group

 

[joyscobby]

Thanks julius. I also picked up that if XMRV transmission occurred via transfusion, it would prove causality.

Joyscobby, does the WPI know that's how you contracted XMRV?

I did do the questionaire for WPI but since test done by VIPdx the two will not be matched. I want to sort this out as soon as I can. (stuggleing just now) It is important I know that I had a blood transfusion. I also have 1 son pre transfusion (not breast fed) who is healthy and a 2nd son post tranfusion (who was breast fed for 6 months) who has developemental, learning and other problems.

Asp I will do this promise

 

[gracenote]

Thanks julius. I also picked up that if XMRV transmission occurred via transfusion, it would prove causality.

Joyscobby, does the WPI know that's how you contracted XMRV?

To prove causality, would you also need to trace the blood back to the blood donor? Not just make the connection that that is what triggered your CFS, but also know the status of the donor?

 

[joyscobby]

To prove causality, would you also need to trace the blood back to the blood donor? Not just make the connection that that is what triggered your CFS, but also know the status of the donor?

I do not think they kept the same kind of records in 1977 so traceing back to the donor may not be possible.

 

[Sasha]

Sasha,
Yes, she said an advocacy group

Thanks, Julius.

Given that a patient advocacy group sent in 20 samples from the UK in December, 8 of which were XMRV positive, why are they not, er, advocating? Wouldn't those results be an opportunity to go the UK media (probably via one of the ME research charities so as to do it anonymously at one remove)? Am I missing something? Froufox, joyscobby, I'm a bit confused about whether you were in that group and whether it is actually functioning as a group or just a bunch of people who clubbed together to send some blood off.

Anyway, sorry if I'm confused - it just looks like a big opportunity...

 

[Sasha]

Thanks, Julius.

Given that a patient advocacy group sent in 20 samples from the UK in December, 8 of which were XMRV positive, why are they not, er, advocating? Wouldn't those results be an opportunity to go the UK media (probably via one of the ME research charities so as to do it anonymously at one remove)? Am I missing something? Froufox, joyscobby, I'm a bit confused about whether you were in that group and whether it is actually functioning as a group or just a bunch of people who clubbed together to send some blood off.

Anyway, sorry if I'm confused - it just looks like a big opportunity...

Oh, I've just re-read this and it sounds awful - I didn't mean to sound as though I was dismissing people for "just" wanting to get an XMRV test and expecting them to leap into a big PR exercise having got what might be very upsetting results. I just read the word "advocacy" and jumped to the conclusion that part of the group's intention would have been to advocate having got results, as opposed to the group coming together originally for advocay reasons. I'm very sorry! I didn't mean to sound rude or critical.

 

[hope]

Did she say XMRV is more likely to be in sperm than HIV? and also that someone XMRV-ve may have an as yet undiscovered variant of XMRV?

 

[julius]

Hope,

I heard both those as well. Both were just speculation though.

I guess I'm having a low brainfog day, I seem to have gotten a lot of this....i was using headphones as well and have a good sound card...so maybe that helped.

 

[oerganix]

Am I correct in thinking there are at least 3 sources showing XMRV in UK?
1. Dr Mikovits said that when their original samples were unblinded in Dec., it turned out that there were samples from UK, Ireland, Germany, Australia and many US States. (Not sure if any from UK were positive.)
2. There was the group of 50 from UK whose tests were paid for by a benefactor in UK who has ME; approx. half were positive.
3. This newly mentioned group of 20, with 8 being positive?

 

[julius]

Am I correct in thinking there are at least 3 sources showing XMRV in UK?
1. Dr Mikovits said that when their original samples were unblinded in Dec., it turned out that there were samples from UK, Ireland, Germany, Australia and many US States. (Not sure if any from UK were positive.)
2. There was the group of 50 from UK whose tests were paid for by a benefactor in UK who has ME; approx. half were positive.
3. This newly mentioned group of 20, with 8 being positive?

I always wondered about that first one. Does she mean people who all lived in the same community, but originated from these other places. Or were they living in those other locations at the time of their blood draw?

 

[oerganix]

I always wondered about that first one. Does she mean people who all lived in the same community, but originated from these other places. Or were they living in those other locations at the time of their blood draw?

Good question. I guess we could ask her. Don't know if it is known, but it's still a good question.

 

[julius]

Yeah, but I hate to bother her. Not so much to be polite, but I want her nose in a beaker 24/7, not responding to emails. :Retro tongue:

 

[bertiedog]

I'm interested in this possible link with a blood transfusion cos I had one in 1979 and I live in the UK. Within 10 weeks I had 2 weeks of severe mumps even though I had this badly as a child and I know one isn't supposed to have mumps twice. This all happened within 10 weeks of the birth of my 3rd baby and I was so ill. I was never quite normal after that and started suffering with anxiety attacks for no reason and then 4 years later I had 2 weeks of flu from which I never recovered. AFter that the almost daily migraines and vertigo attacks started but my immune system was rubbish and I picked up every virus or infection there was. Also my HPA axis was severely impaired and I cannot live without daily steroids and thyroid medication but I have never been able to regulate this in a normal way.

I hope to get tested once the antibody test comes out. I am very tempted to get the test done through Biolab as soon as possible but think it would be sensible to wait a few more months for the new test.

Pam

 

[Kati]

Now I have JMWS Judy Mikovitz Withdrawal Syndrome.

LOL Gracenote- me too! Want more! This session was a bit more difficult to concentrate to as there was lots of distractions (the room, the chairs, not able to view the screen) so I didn't get much of it unfortunately.

This also happens with me awaiting for my XMRV results that are with my doctor at the moment. And the next available appointment available is on the 18th of February :worried:

 

[Hysterical Woman]

LOL Gracenote- me too! Want more! This session was a bit more difficult to concentrate to as there was lots of distractions (the room, the chairs, not able to view the screen) so I didn't get much of it unfortunately.

This also happens with me awaiting for my XMRV results that are with my doctor at the moment. And the next available appointment available is on the 18th of February :worried:

Oh my, Kati, can't you get the test results by phone? Would you not want to do that?

Take care of yourself,

HW

 

[Kati]

Oh my, Kati, can't you get the test results by phone? Would you not want to do that?

Take care of yourself,

HW

Hysterical, I have asked the MOA if she could ask my dr to phone me- it is usually not her policy. If she did I'd be ever so grateful. Not holding my breath though. In the meantime, the Olympics in town are keeping me busy!

 

[oerganix]

Yeah, but I hate to bother her. Not so much to be polite, but I want her nose in a beaker 24/7, not responding to emails. :Retro tongue:

I did it. Awaiting an answer which I will share. She has encouraged people to ask questions and I've never bothered her before so I don't feel too bad.

 

[sproggle]

Missed the whole thing except the very last second, not had my brain in gear at all today!!!

Looked empty and mainly backs of chairs, still as long as you can hear what's said with headphones that will do me

Expect it will take several days for it to be posted on the site? will have to be patient....

Jan xx

Plus just seen pic of Cheney for first time looks like that guy off The Fast Show "Suits you Sir!" (UK comedy show). I think I'd get the giggles if I met him!! :Retro smile: