XMRV CFS UK study #II

[cfs since 1998]

This just posted on the Prohealth board, an email from Dr. Mikovits. Credit to "Danielle" for posting
http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1384114

So...rejections from previous journals...very interesting, as well as the 200 genetic sequences of isolates. You can't isolate something and sequence its genes if it doesn't exist!

 

[julius]

(quote deleted by poster)

Whoa!...is it just me or does she sound confident?

 

[Gerwyn]

So we have two studies from the UK, neither of which tried to "validate" the WPI study, in other words they didn't even try to use the same methodology, assays or reagents. Why?

I'm guessing they were going for "replication" in regards to do CFS patients have XMRV?? I mean some of the science going on right now is about the virus itself. How it works, what makes it tick, where can you find it. That will be going on for a very long time.

It seems that question of wither PWC/ME have XMRV is the battle field. Yet a retroviral model for this illness fits perfectly. Every aspect of the problem just drops right into place with a retroviral causative agent. Yet there are groups, and individuals who seem to want to fight tooth and nail against the first real break we've had in years. Go figure.

Hi George.

I've been doing a little digging

The half life infectivity of a retro at 37 C is about four hours leave a blood collection tube for a day and how much viable virus do you have left

At the other end 50% of viral load lost after freezing and rethawing

This is due of the lability of subunits in the env gene caused by the virally encoded protease

Xmrv virus is expressed in mouse cells at the rate of one or two virus particles per cell --it does not get much lower than that.

XMRV is infectious in b and t derived cell lines prostate epithelial cell lines ACTIVATED FRESH peripheral mononuclear cells.These findings are consitent any study looking for the virus anywhere else haven,t found it

Dr coffin says that XMRV replicates in rapidly proliferating cells inactivated pbmcs dont fit that bill

The are different xpri receptors in different parts of the world and they mutate

 

[Katie]

Are we sure that this email is legitimate? Something doesn't quite feel right, the writing style and the general punctuation and grammar is sloppy. Reading more carefully I'm not sure this is genuine, it's not like the email Quilp posted. Anyone else get the same vibe?

[Copy of email removed]

 

[dmarie4301]

Another reason for hope...

One other thing about this latest study...
Am I correct to say the following?:
The researchers concluded that they had found no XMRV in the control group or the ME patient group.
(They saw anti-body activity in 4% of the 'normal' control group but they have decided that these weren't XMRV antibodies, for reasons I don't understand.)
So they found no XMRV whatsoever... nothing...


Well, this gives us even more reason to hope because...
WPI have already confirmed that they've tested UK patients and that the same results were holding up...

So, like with the previous Wessely study, with all of our combined knowledge and insight, we can deduce that the latest study was flawed, and the researchers simply were not competent enough.
I know that Jonathan Kerr's name was on this study (and we love him)... but let's not read too much into that... we don't know anything about his involvement in this study, and it clearly wasn't his own study under his complete control.

We need to wait until some real research studies come out, rather than these 'pretend' replication studies.
Whatever happens, we will get to the bottom of the XMRV virus now that it has been found... and then we can all get tested for it...
XMRV doesn't even have to be shown to be related to all cases of ME... it wouldn't stop us getting tested, and treated once that they have found a treatment.
We might all even decide that we haven't got ME, but we got XMRV-related disease.

There is much hope... But we have to be patient! (and i really know how hard it is to wait for this!)
I imagine that we're not going to get any firm answers until the end of the year at the earliest... it will take a year to carry out good quality, thorough research...
so we have to keep on carrying each other through this difficult year, and keep on supporting each other, like we do so well!

Bob

Thank you Bob for that. This has really affected me the past two days. Didnt realize how much til your post wanted to make me cry. I just wanna know WHY Im sick and why I cant get well for 20 years. To not know is SO hard. I feel like, geez what a waste of my life. Ive felt quite ready for the grave today. (Sometimes when I feel like I have no control at all over my destiny, I imagine my death bed scene with kids and all...sick, huh?) Well its so unreal to be this sick for so long with no answers. If people were dying, like with HIV, they wouldve been on this a long time ago. XMRV is giving me hope. I hope that hope doesnt get dashed.

Donna

 

[cfs since 1998]

Ok, why does it seem that the more appropriate thing to do would be for Judy M to make an official statement rather than put this information in an email? Somebody please tell me not to worry, and that this won't be seen as a gaffe/blunder. Tell me it doesn't smack of inexperience in dealing with such sensitive and important, not to mention political, matters.

This thread is not for discussing the level of professionalism of Dr. Mikovits personal emails. Stay on topic.

Are we sure that this email is legitimate? Something doesn't quite feel right, the writing style and the general punctuation and grammar is sloppy. Reading more carefully I'm not sure this is genuine, it's not like the email Quilp posted. Anyone else get the same vibe?

No, we aren't sure. But why would someone do such a thing? Maybe she was just in a hurry and didn't proofread.

 

[dmarie4301]

To cfs since 1998 (try 1988, geez), anyway, thanks for this. I so want to hear from Judy. Now Im crying even more. I dont want anything to go sour with this. Dr. Judy sounds so certain. And with Annette having a daughter sick with this for 20 years, I cant imagine any assualt on WPI will happen. Cant wait for her official response.

Thanks everyone on this board who have helped me get the info I need to process this news.

Donna

P.S. Just saw objections about the email from Judy. She DID say in her January talk at ProHealth that she likes to personally answer emails to patients. She may know this Danielle personally, who knows? She likes working with the patients.

Well, we shall see what she says in her official statement, which Im sure will be soon.

 

[Katie]

This thread is not for discussing the level of professionalism of Dr. Mikovits personal emails. Stay on topic.

It's a tense and fraught time, we're all having our say on things and we're not all going to like what others have to say but we're all hoping for the same thing here, an answer to this dreaful illness.

 

[VillageLife]

Sadly each and everyone of us, is part of one of the biggest cover-ups of all time.

This is a very serious situation, we are all dreadfully sick people floating around trying to survive.

It's up to the people in power to think long and hard, can they seriously sleep at night if they let 1000s of people suffer.

Imagen if you new 'something' about the world and nobody believed you, you would shout off the roof tops, just like the WPI are.

I'm young, I have so much to be happy about yet I'm laying here feeling like death,

If someone knows the truth about what's happening, then please shout louder, give me a chance at life!

 

[julius]

One other thing about the Dr. Judy email (don't shoot me cfs since). The original poster never mentioned that she got permission to publish it, so possibly Judy didn't expect it to show up on these sites. Would it maybe be a good idea to delete the quotes until we know that she is down with it? And, as Katie mentioned..that it's even legit.

 

[MEKoan]

Ok, why does it seem that the more appropriate thing to do would be for Judy M to make an official statement rather than put this information in an email? Somebody please tell me not to worry, and that this won't be seen as a gaffe/blunder. Tell me it doesn't smack of inexperience in dealing with such sensitive and important, not to mention political, matters.

I don't know, Lily, in an email you can say things that you would not, perhaps could not, say in a public statement. This is a personal email between Judy and Danielle in which Judy is free to speak like a person with an opinion. Any formal statement has to be much more politically cautious. This could be a way to say what she believes "off the record" in an encouraging email to a friend/patient.

ETA If it is, indeed, legit.

 

[cfs since 1998]

One other thing about the Dr. Judy email (don't shoot me cfs since). The original poster never mentioned that she got permission to publish it, so possibly Judy didn't expect it to show up on these sites. Would it maybe be a good idea to delete the quotes until we know that she is down with it? And, as Katie mentioned..that it's even legit.

I agree, it shouldn't have been posted without permission. I was kind of shocked that it was posted in the first place, but it wasn't my decision, and now that it has been posted, what's done is done. I will delete the quote from my post but leave the link up.

 

[natasa778]

One other thing about the Dr. Judy email (don't shoot me cfs since). The original poster never mentioned that she got permission to publish it, so possibly Judy didn't expect it to show up on these sites. Would it maybe be a good idea to delete the quotes until we know that she is down with it? And, as Katie mentioned..that it's even legit.

excellent point

 

[anne]

Until methods are standardized and the scientific community is provided information about the specific characteristics of the CFS subjects (and controls) who tested positive in the Science paper, be prepared to read more negative studies.

This issue of sample seems to be a huge bone of contention. Vernon here basically seems to be saying, "It's your fault, you aren't telling us more about the sample." WPI thinks they've released everything anyone needs to know. I have no idea what the right answer is, but why can't they get together on this? I'd rather Dr. V wasn't taking potshots in press releases.

 

[Katie]

No, we aren't sure. But why would someone do such a thing? Maybe she was just in a hurry and didn't proofread.

I can think of many reasons, all of them well meaning but misguided. It speaks more to me of someone who's desperate to believe and have the proof than a scientist on the inside. It reads like what a person with long term ME/CFS wants to read, the motivations of money and politics, the assurances of having irrefrutable data and the capital letter jibes at being turned down at other publications. I also feel someone younger wrote this too, especially the way it is formatted with the ...'s and the capitals. This is my take and it's what I'm leaning towards atm. I'm sure Judy has some positive things to say about this, but I don't think that email was it. The drama and emotion of the last six months is a lot to stand.

 

[cfs since 1998]

I can think of many reasons, all of them well meaning but misguided. It speaks more to me of someone who's desperate to believe and have the proof than a scientist on the inside. It reads like what a person with long term ME/CFS wants to read, the motivations of money and politics, the assurances of having irrefrutable data and the capital letter jibes at being turned down at other publications. I also feel someone younger wrote this too, especially the way it is formatted with the ...'s and the capitals. This is my take and it's what I'm leaning towards atm. I'm sure Judy has some positive things to say about this, but I don't think that email was it. The drama and emotion of the last six months is a lot to stand.

Whether it was fake or not, the prohealth posts have been deleted. You may want to remove the quote from your post, #211.

 

[Adam]

I used to gamble. I'm good at odds. My money is with Katie on this.

Fake email.

 

[Kati]

This just posted on the Prohealth board, an email from Dr. Mikovits. Credit to "Danielle" for posting
http://www.prohealth.com/me-cfs/blog/boardDetail.cfm?id=1384114

So...rejections from previous journals...very interesting, as well as the 200 genetic sequences of isolates. You can't isolate something and sequence its genes if it doesn't exist!

CFS I am not familiar with prohealth and your link just lead me to a search page, and I have a hard time finding Dr Mikovits- Could you please quote Dr Mikovits in here ? Thanks, Kati

ETA I see the post has been removed - I guess it would be wise to wait for the official position from WPI.

 

[jspotila]

This issue of sample seems to be a huge bone of contention. Vernon here basically seems to be saying, "It's your fault, you aren't telling us more about the sample." WPI thinks they've released everything anyone needs to know. I have no idea what the right answer is, but why can't they get together on this? I'd rather Dr. V wasn't taking potshots in press releases.

I respectfully disagree that Dr. Vernon's article takes potshots at WPI or anyone else. She is a professional, and no one at the Association thinks "pot shots" are the way to get this work done. As Dr. Vernon said in the article:

Achieving scientific consensus on the role of XMRV in CFS certainly warrants more research and greater collaboration, as do so many other important discoveries being made.

The Association is engaged in communication with many parties about how to achieve this scientific consensus.

 

[Katie]

CFS I am not familiar with prohealth and your link just lead me to a search page, and I have a hard time finding Dr Mikovits- Could you please quote Dr Mikovits in here ? Thanks, Kati

CFS since 1998 and myself have pulled the quotes as there was no express permission to repost. If permission turns up it can be free to be reposted. I'm not a member at prohealth so I can't see it now either.

Katie