XMRV CFS UK study #II

[fresh_eyes]

Science Now commentary on this research:

http://news.sciencemag.org/sciencenow/2010/02/new-challenge-to-chronic-fatigue-virus.html

 

[Kati]

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:



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

Jennifer I thought Dr Vernon's position was fair and well thought. Thank you to CAA for prompt response.

 

[anne]

Jennie, I understand. Let me rephrase: To me, it looks like calling out the WPI publicly, whether intentional or no. I know Dr. Vernon is a professional, and I very much appreciate her great work on this, but I do wish she and the WPI could work this out in private. It's obviously a professional disagreement, but I'm not sure it should be played out in press releases. I'm just bemused by the whole thing. And I have no idea who is right and who is wrong--my concern is simply with the politics.

 

[Cort]

I think Dr. Vernon is showing some frustration here. That was a VERY strong statement. It doesn't get much stronger than this.

Hopefully the Science investigators will make this information available before interest in XMRV being associated with CFS fades and becomes yet another foiled attempt at solving CFS.

She's saying if you don't get your act together it could ruin it for everyone. She doesn't believe the WPI has ever completely described the patients in the study and she has some reason to as that patient cohort has changed dramatically over time; first it was an immune dysfunctional, extremely exercise intolerant, highly disabled group and now aka Dr. Mikovits latest talk its morphed into your average CFS patient who merely met the Fukuda/Canadian Consensus Criteria. It may be that what she's really searching for is duration of illness and some assessment of illness severity. My sense is that she believes the Science study participants may have been very, very ill. One person has pointed out to me evidence from the paper and the presentations of, I can't remember the exact number, but it was more than a couple of lymphoma patients in the study.

I'll trust Dr. Vernon on this one. This is a touchy subject and the CAA hardly wants to rile up its supporters after the negative response it got early - she wouldn't have written something like this unless she felt it was a very important issue.

On the other hand my interpretation of her statement is that it's bad news for most of us; she's not taking the Retrovirology study to task for bad techniques; instead she's suggesting indirectly that XMRV is found in only a small subset of patients - and unless researchers start explicitly identifying those patients and testing THEM the whole thing is going belly up.

 

[George]

huh, I went back and reread Dr. Vernons statement and didn't get any "pot shot" vibe. It was well thought out, a great translation for lay readers and a good summary of the facts. It supported the scientist and even outlined their positions on the issues. Great all around. Tell, Dr. Vernon she rocks for me Jspotila!

 

[Lily]

Well I'm glad you got my drift, CFS 1998, whether it was off topic or not. The wisdom of others posting it on ProHealth and then again on here, another public forum, needed to be questioned.

 

[Cort]

Dr. Vernon and Dr. Mikovits are on the same Committee at the DHHS. She voiced her concerns about the cohort early and she's presumably talked with Dr. Mikovits regarding them. It may be that she feels that this is the only way to get that information (??).

 

[julius]

What sort of criteria would make the difference here? Based on the results of the commercial testing, severity doesn't seem to be a factor. And Dr. Mikovits (why aka, I'm not sure) mentioned several times that RNasel wasn't a factor.

Just wondering if anyone has any ideas.

 

[vdt33]

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

That's how i've been feeling too, Donna. But maybe it's time to get mad. I'm getting out my wheel chair and my pitch fork. Maybe this will mobilize the CFS community like nothing else has!!

 

[Cort]

After reading this again it appears to me that she's concerned about duration, severity and immune treatments - those are the three things she really wants to know about the Science cohort. If XMRV hides out elsewhere in the body for some period of time (as I believe HIV typically does) then testing 'newish' CFS patients will miss the virus. Very ill patients with very depleted immune systems are known as 'pathogen collectors' - so severity is an issue. And there there are the treatments they've been getting. If the lymphoma patients were getting chemotherapy that would obviously be an issue; on the other hand - the vast majority of patients couldn't have had lymphoma - so maybe there are other parameters.

This is the one to hope for I would think:

If XMRV hides out elsewhere in the body for some period of time (as I believe HIV typically does) then testing 'newish' CFS patients will miss the virus.

 

[anne]

Cort, I expressed myself badly. Thank you for saying what I was trying to in a much better wayl. It's a VERY strong statement. Obviously she's frustrated. And I don't know anything more than that. But I hope they can work it out, and it's too bad this disagreement has gone on so long and that it continues to play out in public.

 

[George]

When we know what the tissue reservoir is then we can define the patient base better. Lots of just basic science that needs to be done first. I don't get why the UK did back to back studies looking for the virus in patients first. First comes establishing the virus as a unique entity, (that looks pretty well established at this point) then understanding how the virus works so that you can test for the virus, This seems to be where we are right now with the research community.

Seeing how it works and where it hides and how it replicates will tell researchers how to test for the virus. Right now the only set of methods that work are the ones created by Dr. Silverman, and expanded upon by the WPI and Dr. Singh. Then and only then would you test the population for this bug.

And the patient population just has to earn it name. (grins) and be very patient.

 

[Cort]

I think your statement was understandable Anne. That was a strong statement by Dr. Vernon - and it makes you wonder why she had to make it publicly. I assume it was because she felt it was the only thing to do at this point. She clearly feels it could be an important aspect and it needs to be addressed before the money dribbles out of this thing.

 

[Cort]

I loved this statement - I don't know if it makes me want to laugh or cry; basically it states that everyone is doing the right thing - and they're getting different results.

That's a good idea, because discrepancies between labs are common, says David Griffiths, a virologist at Moredun Research Institute in Midlothian, United Kingdom, who has studied previous claims for retroviruses as the cause of chronic diseases. He also notes that he cannot find serious flaws with any of the published studies: "All the people involved are doing things exactly as they should be." For the time being, then, the XMRV results will remain frustratingly ambiguous. As Griffiths says, "There must be an explanation for why disparate results are showing up, but it may not be an easy thing to turn up."

Don't you just love research?

 

[PoetInSF]

I don't get why the UK did back to back studies looking for the virus in patients first.

The problem is that WPI made a sensational claim (without the basic research that you think we need first) and it had to be confirmed or refuted. The matter became only more urgent when WPI made the test available and patients started sending in their doughs.

 

[Kati]

After reading this again it appears to me that she's concerned about duration, severity and immune treatments - those are the three things she really wants to know about the Science cohort. If XMRV hides out elsewhere in the body for some period of time (as I believe HIV typically does) then testing 'newish' CFS patients will miss the virus. Very ill patients with very depleted immune systems are known as 'pathogen collectors' - so severity is an issue. And there there are the treatments they've been getting. If the lymphoma patients were getting chemotherapy that would obviously be an issue; on the other hand - the vast majority of patients couldn't have had lymphoma - so maybe there are other parameters.

This is the one to hope for I would think:

Cort, you mention duration of the illness, or she does. The concern I have is when y get sick with a retrovirus, you either get it, or don't. It's not something you pick up 15 years down the road. At least if XMRV is causal, there should be signs of the disease, and I really hope that a standardized test will prove that. Dr Mikovits will talk on a &A with Dr Cheney on the 20th- it would be a great opportunity to ask questions. Dr Mikovits has been open to talk with anybody- her recent talk in California was very positive and convincing, I am sure she is collaborating with whoever want/ need help.

 

[cfs since 1998]

When you are picking up zero XMRV in CFS patients and zero in controls, somehow I don't think it's WPI's fault for not saying how long the patients have been sick of how many immune abnormalities they have. Vernon needs to take a chill pill.

 

[dmarie4301]

Thanks vdt33 for posting to me. I feel invisible on this board, like Im not part of the regulars. My questions get overlooked and my feelings ignored. Shall I whine a little more? I really am not into the science or politics as much as everyone else, but I am part of this da.. club. Im trying to stay on top of the news and the science and the politics too, including the UK. I think Im doing pretty good at understanding what's happening and what XMRV is, but I do get lost in the rhetoric here sometimes, so maybe my posts are boring. Anyway, it has been a hard couple days. I come to the board when I need to know what those more educated than me know about what's going on. And maybe a little support too, as people I know in my support group here in town arent even paying attention to XMRV, so I have no one to talk to about it.

This thing we have HAS to be a virus. It's SO simple to see it, when you live it. I feel like Ive had the flu for 20 years (without the barfing and fever). That's how Ive always explained it to people. God, can we please have some answers??

I hope Dr. Judy speaks out tomorrow. Im rambling now. I know we on the board who have been here for two days are feeling upset about it. I'll assume everyone would give me a hug if we were altogether and maybe pass some Kleenex around too.

So, carry on!

P.S. I missed Mikovits talk in Santa Barbara and Cheney's site hasnt posted it yet, that I can tell. Anyone found it yet anywhere?? Thanks

 

[Cort]

I haven't seen that LadyBug; its very interesting - where did it come from?

Sorry DMarie. It is a rather intense time. You can find the transcriptions of Dr. Mikovits talk on the Front page section of the Forums.

Those symptoms could also be caused by high levels of cytokine production. Usually high levels of cytokine production reflect an infection - so I think your intuitions are correct - but it could also be that the infection passed and for some reason your immune system still stayed at a level of high alert. Why that would happen I don't think anyone knows.

 

[usedtobeperkytina]

well, I noticed Vernon mentioned what I had said earlier, the antibody test depends on the body's ability to form those antibodies, which depends on that part of the immune system acting normally.

Mark, I agree with you.

And remember, we aren't the only ones with challenges, take a look at what these characters have to deal with: http://www.youtube.com/watch?v=c8SD...FBC28C50&playnext=1&playnext_from=PL&index=34

Tina