VIP Dx Culture Test Poll For A LATENT Infection

[dannybex]

That's a terrible, completely irresponsible thing for anyone, let alone a scientist, to say, potentially giving people false hope.

Stuff like that really makes me angry. Seeing her talk about finding XMRV in Autism patients (and publicly speculating about a vaccine to autism trigger) despite not having published any data whatsoever or evidence to show for it, especially in the light of the recent negative XMRV/Autism studies piss me off. She (the WPI) had better really, truly have a lot that they are holding out on us for the moment, or they will have lost all of my respect. All this hype and raising up a ton of peoples' hopes better not be all for nothing.

I agree with you...just incredibly irresponsible -- especially coming from someone who only months earlier (February 24th, 2010) said during a question and answer session, "I know almost nothing about CFS."

http://tinyurl.com/3x27bzg

 

[akrasia]

I agree with you...just incredibly irresponsible -- especially coming from someone who only months earlier (February 24th, 2010) said during a question and answer session, "I know almost nothing about CFS."

http://tinyurl.com/3x27bzg

Hi Danny,

Judy Mikovits joined the WPI as Research Director in 2006. I would take what she said with a gigantic grain of salt. In order for her to know "almost nothing" about cfs, in February 2010, would have required her to be in a state of almost invincible ignorance, fingers firmly in her ears and la la la-ing for years on end. Instead of a confession of lack you could read it as statement of humility. Compared to Dan Peterson, she "knows almost nothing about CFS."

 

[dannybex]

Hi Danny,

Judy Mikovits joined the WPI as Research Director in 2006. I would take what she said with a gigantic grain of salt. In order for her to know "almost nothing" about cfs, in February 2010, would have required her to be in a state of almost invincible ignorance, fingers firmly in her ears and la la la-ing for years on end. Instead of a confession of lack you could read it as statement of humility. Compared to Dan Peterson, she "knows almost nothing about CFS."

Good point Akrasia...makes more sense in that context. Thanks.

 

[omerbasket]

That's a terrible, completely irresponsible thing for anyone, let alone a scientist, to say, potentially giving people false hope.

Stuff like that really makes me angry. Seeing her talk about finding XMRV in Autism patients (and publicly speculating about a vaccine to autism trigger) despite not having published any data whatsoever or evidence to show for it, especially in the light of the recent negative XMRV/Autism studies piss me off. She (the WPI) had better really, truly have a lot that they are holding out on us for the moment, or they will have lost all of my respect. All this hype and raising up a ton of peoples' hopes better not be all for nothing.

They might just be the people who would save your life quality.

When a patient is desperate and asks a scientist for her opinion - a good person would give his opinion, and a person who doesn't care enough would not. Dr. Mikovits understands that for the patients, especially for the sicker ones, every day can be a living hell, and they are willing to try things that are not proven. Sue understands that what Dr. Mikovits said was Dr. Mikovits's opinion and that it is not yet sure.

The stuff about vaccines make me angry too. But from the opposite side: Vaccines are not sacred. Dr mikovits speculated, and infromed everyone that this is a speculation (on the opposite side, there are so-called scientists which say things the are not proven as if they were. Take for example "Prof." Wessely). Her theory about vaccination makes a lot of sense, but it is a speculation and she said that it is. It seems like speaking badly about vaccinations is a tabue. It shouldn't be. They might have very good effects, but they might also have negative ones - just as antiretrovirals. What I think is that because they keep most of the population un-infected, scientists promote them without stressing out the real science (for the good sides of vaccinations and for the bad sides of it) because they think that it is okay if a person or two dies, and ten gets chronic illnesses, as long as two hundred are protected and not infectious. But tell it to the person that is about to get a shot...

 

[akrasia]

Good point Akrasia...makes more sense in that context. Thanks.

Hi Danny,


And Ben,

I don't know if giving reassurance to Daffodil that she feels that XMRV will be found in reservoirs besides the blood, where it can prove elusive, is being a purveyor of "false hope" at this point. Even if Mikovits hasn't published yet on this, the Macaque study from Emory University found XMRV in many places in the body.

Landson is referring to the study done by researchers at Emory University’s primate lab who injected XMRV into macaques and reported that even when the retrovirus was undetectable in the blood, it thrived in the reproductive organs as well as the spleen, gut, bladder, lung, liver and lymph nodes.


I have pursued treatment based on tenuous evidence and have been disappointed. But that's the territory we are in at the moment. Ben, haven't you tried stem cells with very little to back Cheney's theories. I'm not criticizing you for doing it; I have often tried Cheney's suggestions, from Growth Hormone injections to artesunate. But I don't think that Mikovits deserves the intensity of criticism you're leveling at her.

The study about autism is not without controversy. It is another study that finds zero XMRV, which is a pointer to problematic methodology. This is not the thread to debate the findings and I don't know of one on PR. There was a robust discussion of this on ME/CFS forums a short time ago: http://www.mecfsforums.com/index.php/topic,2745.0.html

Both Coop Diagnostics, the company that was selling an XMRV test based on sending them one drop of blood, and the other folks associated with the study who have a very strong investment in a genetic etiology for autism, are not the most reliable of players. This study deserves more scrutiny than mere citation.

I too wish that there were more publications supporting Mikovits's claims but I am willing to give her the benefit of the doubt for a bit longer. I think that the next few months will begin to reveal the full contours of what's going on with us epidemiologically.

 

[dipic]

Hi akrasia and omerbasket,

Perhaps you are right; I was a bit harsh/not completely fair. But do not get me wrong for a second. I am so appreciative of what the WPI has done so far (I only just wish their PR skills were a little better.) I am also certainly willing to give them the benefit of the doubt, even though I'm still fairly skeptical about a [FONT=&quot](at least significant, let alone casual) connection between XMRV and ME/CFS (and that may well be, admittedly, due to some ignorance on my part of some of the facts and finer details that have emerged as of late.) [/FONT]

What got me though was the fact the post I quoted was made back in May (way before the Emory study.) But even if it Mikovits made this claim now, I still think it would be very inappropriate. Frankly, it just doesn't make sense to me. Surely she doesn't think that everyone with ME/CFS will turn out to have an XMRV infection. So how can she tell a patient (who turned up negative on multiple tests so far) that they are "convinced" they will still find the virus in them? That would certainly be trying to instill someone with potentially false hope, whether intentional or not. (And I really don't want to see anyone's hopes crushed, especially when that may be the only thing that is keeping some of most distressed and despondent of us going.)

That being said, after going back and rereading the post I quoted, I realized that, of course, there was no direct quote from Mikovits. For all we know she may have worded it differently than the poster. (Or not, and I would not be all that surprised... which is probably, partially why this possibility didn't originally occur to me.) Still, we don't know, so that makes my entire argument/rant completely moot. v__v

Anyway, apologies for derailing the thread. (I really need to stop posting in my current "brain feels like scrambled eggs" condition, especially late at night. ) I just really hope, for everyone's sake, that you're right, akrasia, and we get to the bottom of this asap, regardless of what is found to be the truth.

Ben

 

[omerbasket]

Frankly, it just doesn't make sense to me. Surely she doesn't think that everyone with ME/CFS will turn out to have an XMRV infection

I think that she doesn't think that anyone with a diagnosis of ME/CFS has XMRV, but I think that she does think that all the people that are as sick as Sue, without signs for another disease, have XMRV.
It doesn't mean that she is true, and I'm sure that she didn't say that it's proven witout a doubt or something like that. She just said that this is what she believes (and she didn't say anything about "them" finding her positive for XMRV. She talked about her own opinion, not anyone elses). She does have a lot of knowledge about this, some of the knowledge wasn't even said publicly (and therefore we have no way of knowing it), so her word is worth listening to, but we all know that it is not yet scientifically proven - and she didn't say so. Anyway, I object to the term "irresponsible". Firstly, because I think it is irresponsible to tell a very sick person - "go away, come back in 5 years and than we'll sure have a proven answer", and second of all, becuase after telling Sue the truth (about what Dr. Mikovits believes, but not lying to her about it being already proven, and anyway Sue knows about the studies here) the only one responsible for anything is Sue.

I appreciate scientists who doesn't play it politically correct, and tries everything they can in order to help a patient, as long as they do not lie to him. Dr. Mikovits told Sue the truth, and she didn't tell her that it's proven, and obviously Sue knows that it's not proven. It's Sue's choice whether to take antiretrovirals or not. It's her life and her right to choose what to do with it.

 

[dipic]

I think it is irresponsible to tell a very sick person - "go away, come back in 5 years and than we'll sure have a proven answer"

Why would telling a patient, "Sorry, we don't have all the answers right now but we are working very hard to find them and we will not stop until we do" (or something along those lines; something I believe the WPI has said before) much more (or even at all) irresponsible? That's the truth. Not what they believe (or perhaps want to?) Also, if (big if, as I'm doubtful this is the case) Dr. Mikovits truly believes, as you say, that "all the people that are as sick as Sue, without signs for another disease, have XMRV", that is, first of all, a largely ridiculous belief, especially for a scientist to hold. I mean, do you even believe that?

I feel this is all irrelevant, however... or that maybe I'm missing a separate discussion here where a conversation between the poster I quoted and Dr. Mikovits was shared or overheard. If that's the case, that's fine, but I was simply going off the one post she made in this thread to which I concluded in my previous post that we (or at least, I) don't actually know exactly what and how she worded what Dr. Mikovits said to her. If you know something I don't, okay, but I think anything else is simply speculation, and I'm not willing to pass any judgement on a conversation I didn't hear (something I mistakenly did in my first post, and admitted and apologized for in my second.)

Anyway, I never intended to start any sort of argument here and don't wish to continue one so this will be my final post on matter.

Ben

 

[omerbasket]

Why would telling a patient, "Sorry, we don't have all the answers right now but we are working very hard to find them and we will not stop until we do" (or something along those lines; something I believe the WPI has said before) much more (or even at all) irresponsible? That's the truth. Not what they believe

That's irresponsible because you know things, you have thoughts on things, but because you don't think the patient has the right to choose to treat himself for something that is not 100% scientifically proven, you deny him the option to hear your thoughts and decide for himself. I think that it is very responsible to share your thoughts with a patient, if he wants that, and as long as you don't pressure him, in any way, to do something that is not scientifically proven.

Also, if (big if, as I'm doubtful this is the case) Dr. Mikovits truly believes, as you say, that "all the people that are as sick as Sue, without signs for another disease, have XMRV", that is, first of all, a largely ridiculous belief, especially for a scientist to hold. I mean, do you even believe that?

I meant that all the people who are sick as Sue and EXHIBIT CLASSIC ME/CFS SIGNS, that do not have signs for another disease - are what people who from what I understand Dr. Mikovits thinks that they are XMRV positive. I don't know any better than you what were Dr. Mikovits's exact words, but that is the impression that I get. I could be wrong, but I think that even if I am, I'm just a little bit wrong, not more than that. Do I believe what I think Dr. Mikovits believes? I really don't know. I am not as close to XMRV as her, and not 1/1000000 as qualified in retrovirology as her. So I don't know. But if I were given the choice to take her suggestion or to take another scientists suggestion (that would not fit Dr. Mikovits's suggestion), I'd probably do the former.

Anyway, I never intended to start any sort of argument here and don't wish to continue one so this will be my final post on matter.

If that's your last post, and if nobody else would post on that, than this is my last post about that as well.

 

[eric_s]

That's a terrible, completely irresponsible thing for anyone, let alone a scientist, to say, potentially giving people false hope.

Stuff like that really makes me angry. Seeing her talk about finding XMRV in Autism patients (and publicly speculating about a vaccine to autism trigger) despite not having published any data whatsoever or evidence to show for it, especially in the light of the recent negative XMRV/Autism studies piss me off. She (the WPI) had better really, truly have a lot that they are holding out on us for the moment, or they will have lost all of my respect. All this hype and raising up a ton of peoples' hopes better not be all for nothing.

That she has not published more at this point might also be because at the moment it's very hard for her to get any paper to publish her work. She said something like this at one of her recent presentations.

 

[calzy]

Tested negative through WPI culture

I got my test results a few days ago, and feel soooo disappointed
I guess I needed the validation, even tho Im classic CFS including all the tests that CFS docs had at their disposal prior to xmrv testing.
Did I read somehere that its likley if you tested negative it could be a false negative, but if you tested positive you are positive?

Doesnt it sound crazy to be disappointed not to have a retrovirus?:Sign Help:

 

[helen41]

Doesnt it sound crazy to be disappointed not to have a retrovirus?:Sign Help:

Not crazy at all. I'm waiting, and I know I will be devastated if it's negative, even though I know false negatives are common. It doesn't mean you are less sick, they just didn't find the evidence. Hugs

 

[calzy]

thanks Helen, i was looking forward to rubbing the test results in a few peoples faces

 

[3CFIDS@ourhouse]

Calzy, did you do the serology as well? It seems like lots of people with negative cultures are testing positive by serology.

 

[dominique]

While I would like to participate in this poll; unfortunately, I can't afford the XMRV tests. I'm on disability and medicare with no disposable income.

I contacted VIP DX and was told that they are a fee-for-service provider, i.e. they don't accept the Medicare assignment. They will invoice Medicare as a courtesy, but Medicare may or may not pay anything toward the bill. Even if Medicare does pay something, I am still responsible for the balance of the invoice.

In addition, as I understand, some of the leading ME/CFS doctors also do not accept Medicare assignment. I have two doctors in mind.

I think I'm in the same boat as many seriously disabled ME/CFS people. It seems sadly ironic that most of these tests, some of the ME/CFS specialists, and maybe potential treatments, will not be affordable and/or accessible to many of the seriously disabled ME/CFS people.

I can only hope that these XMRV tests and future treatments will be made available to other testing labs and doctors who will accept Medicare.

My Reply: I totally agree. I am an AF Vet and am unable to get these tests. Frustrating but I guess that is just how it is for the time being.

 

[Sushi]

Dominique and Geo,

Medicare paid for my serology and culture tests at VIP, but others have only had partial payment. Wish we could know ahead of time whether they will pay!

Sushi

 

[*GG*]

thanks Helen, i was looking forward to rubbing the test results in a few peoples faces

Perhaps you can do the 2-day in a row Exercise Test developed at Pacific Fatigue Lab in CA? I believe Helen did it, and it has helped her, correct Helen?

GG

 

[helen41]

Perhaps you can do the 2-day in a row Exercise Test developed at Pacific Fatigue Lab in CA? I believe Helen did it, and it has helped her, correct Helen?

GG

It did. It was good for the "rubbing the test results in a few peoples faces" part, but I'm still nervous about the VIP Dx test too. They say I should know in 5 more days! The wait is so hard.

 

[Francelle]

I don't mean to be wildly sceptical but I'm wondering why the balance of negatives to positives is slowly advancing!

Thoughts running through my head like; is VIPDx trying to extricate themselves out of a previous untenable situation? Horrible and unpalatable thought I know but.....

 

[JAXintheCity]

I tested negative to both tests, too. In truth, by the time I found it, I wasn't that upset. I figured that if I didn't have XMRV (I am a classic text-book case), than XMRV is not the cause of ME/CFS. Either that, or WPI/ VIP have not developed a sensitive enough test to find evidence of XMRV infection, or they are testing the wrong area.

Which begs the question, did they make testing of XMRV available to the public too soon?

In truth, there were several problems with my testing overall for XMRV. Things were lost, blood was not immediately stored, payment was taken before results received... but, most surprising, they weren't able to find antibodies to any of the diseases that other (approved labs) found, including EBV, HHV6A, M.Pneumonia. So, again, when the test came in negative, I wasn't shocked. I also know that the lab is extremely small - only one doctor, Vincent Lombardi - who was testing all the samples.

To be clear, I have the utmost respect for Whittemore Peterson Institute, and I believe that they are doing their absolute best. I know, that in the end, all they were trying to do is help patients. But, I have to be honest and say I learned a valuable lesson from this experience. In my rush to get out and get "validation" from an external force - all I got was a bank account $2000 emptier. :/

In the end, validation came from within. I know I am sick. I know I have ME/CFS. And, that's that...

In the meantime, I will not be rushing out to get any spinal taps...