Mikovits interview states the FDA will confirm WPI findings in a Sept publication

[VillageLife]

Me too. Lol
When I get well and have kids, I'll know what names to give them

 

[Daffodil]

can we really compare this to the HIV timeline? they had to hurry up with HIV - people were dying on the streets. with our disease, there is a lot of room to manipulate things.

"One day we will climb out of our exhausted bodies back into the one's we used to have that worked and think, did that really just happen?" - LOL couldnt have said it better

 

[xrayspex]

hey sunshine I got really worried where you wrote on previous page that CDC altered there site and had flashing xmrv and then saying its not associated with cfs---do you meant their xmrv "study" they have listed on there? I havent looked at their site forever, do not like to get bummed out but when to see right now and didnt see flashing xmrv but did see their lame study posted. I was glad though to see things looking more ambiguous than I expected, when I looked at their "causes" it didnt list childhood abuse thankgod, I don't think its as ominous there as I worried it might be for someone new to all this I think it leaves it very open to an infectious agent could be involved, not that I think they have done a goor or honest job but its not as psych slanted as I thought it might be. At least they mention cytokines and the orthostatic hypotension and don't say that it couldnt be implicated. I did see some study flash about childhood stress or abuse but I chose not to click on that.


Someone also wrote earlier in this thread that if we don't come up xmrv positive that we should try to get cfs diagnosis off of our chart, that concerns me, the thinking is that it will be even more polarized with xmrv people and then psych primary people. I do have cfs as one of my dx and now I am more concerned about that, will talk to my doc next time about changing to something else, I had immune abnormalities per redlabs nk cells a couple years ago, is there a dx that could go with that like "postviral syndrome" that would be more beneign? also have fibro dx and then some spinal issues, the spinal issues per MRI are the things that gave me credibiility with some in the system over the years to validate the pain.

 

[Stone]

Hi Stone, Tanias comments that you had a problem with were clearly satirical - one of the humour threads was based on this topic. Bye, Alex

Thanks Alex. I appreciate that it may have been satirical, but I still find it to be in extremely poor taste. If it was purely satirical, then that would negate the need for the quote. People have killed themselves and others have died as a result of being labeled with fake illnesses ala Reeves. I don't see anything funny about that at all, no matter how hard I try. It's disgusting, insensitive and poorly thought out. Forgivable, but NOT EXCUSABLE. I'm floored that no one else has taken offense at these thoughtless and callous remarks. Personally, I've had my fill of being labeled with a fake disease name, and publicly having doubts cast upon my mental health. It's bad enough coming from so-called scientists, but having this kind of slander thrown about by a fellow sufferer (?) is over the top. Everyone's entitled to make mistakes, I make them all the time. However, when someone is offended by my carelessness and it is brought to my attention, I apologize, particularly if I did NOT intend to offend them. It's in the past now. Perhaps it should stay there and we should focus on something positive. I appreciate your kindness and your assistance with the issue. Take care.

 

[LJS]

can we really compare this to the HIV timeline? they had to hurry up with HIV - people were dying on the streets. with our disease, there is a lot of room to manipulate things.

If XMRV is proven to cause disease, which we really have little to no data on (correlation is not causation) then I think the time line will be much quicker then HIV. HIV & retroviruses were a whole new beast at the time. Since HIV is a retrovirus like XMRV we already have drugs on the shelves that work on XMRV, we have over 15+ years of HIV research that can be a great tool when looking at XMRV. We also have HIV drugs that have passed stage 2 of clinical trials and safety trials but where never released due the fact they were not as effective against HIV as current drugs on the market; some of these drugs may be more effective against XMRV and getting them to market will be much quicker now that a ton of work has already been done.

The cat is out of the bag, sure some arrogant scientists will say what they want but they will just end up looking foolish in the end. Enough well respected scientist are working on this that I think the pace will continue to speed up as more confirmation studies and data comes online and drug companies open the flood gates on funding.

 

[urbantravels]

The drug companies would be *very happy* to open up a new market for antiretroviral drugs - including the ones they spent $$$ developing that didn't work so well against HIV.

I say, bring 'em on. Come on Big Pharma, bring it!

 

[taniaaust1]

There is a new illness out now. Its called "XMRV addiction" and thou not usually found within the general communities (very rare), it is found in large numbers in the CFS/ME communities in which it is HIGHLY TRANSMISSIONABLE.

This new illness is capable of altering a patients actions eg frequent internet checking, and also adds to the sleep issues already prevalant in CFS.

There is currently no cure for this newly discovered illness.

What's your problem? You sound like Reeves from the CDC. I find your remarks personally offensive as well as slanderous and I demand an apology.

And we are doing a study on this new illness, but we already know what we will find.

 

[taniaaust1]

Thanks Alex. I appreciate that it may have been satirical, but I still find it to be in extremely poor taste. If it was purely satirical, then that would negate the need for the quote. People have killed themselves and others have died as a result of being labeled with fake illnesses ala Reeves. I don't see anything funny about that at all, no matter how hard I try. It's disgusting, insensitive and poorly thought out. Forgivable, but NOT EXCUSABLE. I'm floored that no one else has taken offense at these thoughtless and callous remarks. Personally, I've had my fill of being labeled with a fake disease name, and publicly having doubts cast upon my mental health. It's bad enough coming from so-called scientists, but having this kind of slander thrown about by a fellow sufferer (?) is over the top. Everyone's entitled to make mistakes, I make them all the time. However, when someone is offended by my carelessness and it is brought to my attention, I apologize, particularly if I did NOT intend to offend them. It's in the past now. Perhaps it should stay there and we should focus on something positive. I appreciate your kindness and your assistance with the issue. Take care.

Wow Stone.. im quote shocked and stunned.. i only just saw this other post while reading throu the thread.. almost missed it. I even took your reply back before to be a joke back to my joke!! I thought you were trying to do a wessely imitation or something back to my joke. No idea that was a serious reply back till right now.

Sorry you couldnt understand my joke nor see the funny side of things.... Ive had quite a few have have messaged me who did see the funny side of it. I guess you and i just have very different humour (i'll try to remember that).

ok.. moving on now.

 

[Stone]

Sorry you couldnt understand my joke nor see the funny side of things.... .

Wow Tania, I'm sorry you can't understand what consists of an apology. It's all the same in the end. And just so you know, I too have had a number of PM's, some with apologies for your lack of sensitivity and and others expressing similar feelings of offense, but not a single one from someone who thought it was at all funny. Just goes to show you that humor is 'in the eye of the beholder'. As I said, it's forgivable. On to the bright future ahead.

Correction: I have now received two more PMs from folks who thought it was funny.

 

[urbantravels]

I thought it was funny. I got a bad case of the XMRV addiction myself, and my level of internet checking could be classified as persistent and severe. I don't know if I developed it as a result of my exposure to this community or whether mine is a sporadic case.

I think, however, as we come to understand this disorder better, we will re-classify it as a side effect of information deficiency. Not our fault: until recently, we've all been trying to survive on an information-deficient diet, so severe cravings are understandable.

 

[V99]

I have to say, I thought it was obvious that it was a joke.

Then again we have a lot of cultures here, and many people will have no comprehension of how humour works elsewhere, so you cannot cateer for that.

 

[anciendaze]

Pax and Poetic Justice

It's hard to get off a joke in this area, where the truth has been surreal.

I've read through the topic, trying to skip a possible flame war. My own take on Judy Mikovits' statement is that it was very deliberate. I cannot believe she would do this without approval from the authors of the paper to which she alludes. In fact, I would propose she had tacit approval from FDA, NIH and PNAS. Turn things around and imagine what they are experiencing. Every day some number of telephone calls and emails hit them asking what has happened to this paper on what they considered an obscure topic. Having the alleged target of a plot announce that the publication is on its way should defuse a great deal of hostility. Making her co-chair of a session at the coming workshop is another indication.

As for having more than one paper, let me ask you "Can you imagine any researcher getting positive results, and suddenly quitting?" If you have one paper in the pipeline, and you are getting results because you finally have the hard-won technique down pat, you are going to ride that horse for all it's worth. Expect ever positive paper to produce a follow up.

Peace, people.

Meanwhile, back on the actual science front, I've been thinking about possible scientific booby traps which got several groups into their present unenviable situation. I went back and reread the Science paper to see where they mentioned activation of immune cells. They certainly mentioned this in talking about culturing virus, (which nobody looking for negative results appears to have attempted, even knowing the right cell line (LnCaP) to use.) The WPI group appear to have obtained results from PCR without explicitly activating cells, though they later advised this.

It was at this point where it suddenly hit me that the deniers had been "hoist on their own petard". Remember the finding of hypermutation in sequences inserted in PBMC caused by APOBEC3 enzymes? If you leave provirus sitting in those cells long, it will be mutated, foiling PCR. If you stimulate (activate) the cells, and they insert new viral sequences, these will not be mutated immediately, giving you a chance to amplify them before they change. Plasmids outside cells will not be mutated, so spiked positive samples will show up.

The natural way these immune cells are stimulated is in response to active viral infections. Now, this takes us back to a logical short circuit in the deniers reasoning. They excluded patients with signs of recent active viral infections, (sometimes burying this fact through two levels of indirection in citations,) then went ahead with tests for virus. Most patients in the WPI study were very sick, most had signs of active viral infection. The WPI researchers did not need to specifically stimulate immune cells because they were activated by actual virus. Those with the logical fallacy in reasoning could not detect XMRV without activating cells. If it was there, it was not inserted recently, and the sequences were mutated.

There is considerable poetic justice in this view.

 

[V99]

It was also an angry joke, as in yea right, lets see you face in a couple of years time type of thing.

 

[Forebearance]

Wow, I can't wait to find out what kinds of immune system abnormalities Judy found in people with XMRV. And I'm dying to know what Andrea Whittemore has been taking. I wish we could all try whatever it is.

Remember how the Japanese doctors named CFS "low natural killer cell disease"? I'd like to propose another equally valid name for the illness: "easy to poison disease".

I can't wait to find out why we are so darn easy to poison. I'm so tired of being poisoned I could scream.

Forebearance

 

[alex3619]

Hi anciendaze

I completely agree with your analysis, although I would not characterize the altered XMRV as mutated - it is only modified, the genetic code is intact just not reactive to PCR.

I am coming round to the view, after much thought and reading of various threads, that a large number of patients with no overt signs of neurological disease, who do not qualify for a diagnosis of ME, but who the psychobabblers want to diagnose with CFS, will actually be XRMV positive. It is ironic that these people may actually develop real CFS because of GET - in other words, if you are XMRV positive and go through GET, you may really develop ME or CFS(biological).

bye
Alex

PS I don't think Judy did anything in poor judgement - she has been very very careful in both what she said and didn't say. Personally I suspect that any publishers would be pleased for these kinds of comments - its free advertising for upcoming important papers, without giving away any details of significance.

It was at this point where it suddenly hit me that the deniers had been "hoist on their own petard". Remember the finding of hypermutation in sequences inserted in PBMC caused by APOBEC3 enzymes? If you leave provirus sitting in those cells long, it will be mutated, foiling PCR. If you stimulate (activate) the cells, and they insert new viral sequences, these will not be mutated immediately, giving you a chance to amplify them before they change. Plasmids outside cells will not be mutated, so spiked positive samples will show up.

 

[anciendaze]

Hi anciendaze

I completely agree with your analysis, although I would not characterize the altered XMRV as mutated - it is only modified, the genetic code is intact just not reactive to PCR.
...

The problem can be traced to a time when all researchers could be assumed to read Latin, mutatis mutandis. A mutation is merely a change. In common use, we emphasize mutations in germ-line cells involved in sexual reproduction, but ordinary somatic cells can have mutations in their DNA which are only inherited by cells resulting from those cells by mitosis. Some of these, for example, can cause cancer. I got the term from a current article on the specific subject of changes caused by that enzyme.

The confusion about where the genetic information resides goes back to the 'central dogma' of molecular biology, which retroviruses violate. Too many people have never gotten past the 'textbook cardboard' version of DNA->mRNA->proteins. (Yes, this is generally what happens, but there are a few hugely-important exceptions.) The specific nature of the interaction between these enzymes and the virus makes me suspect similar infections have been around for a very long time. Creating a genetic code which produces the same virions after this class of changes is non-trivial, particularly since the virus carries a very limited amount of information to begin with. (If it were a computer virus with only 2 KB of information, it would already have been disassembled, hacked and used for other purposes which would be showing up in your inbox. Biochemical constraints reduce the exploitable information content even more.) Since the RNA which carries genetic information for the virus does not necessarily get changed, and the proteins which constitute the virion are unchanged, infective virus can still result from those modified or mutated provirus which will not show up in PCR.

This is very important for work on detection. It helps explain why antibody tests are more sensitive than DNA PCR. It could present a huge problem for treatment, a fear which the recent announcement of preliminary success in treatment helps to dispel.

 

[urbantravels]

It may be significant that in the interview Judy *only* alluded to something that is being published in September, when it has been fairly well established that something is being published in August. The "two papers" theory would explain the seeming discrepancy in dates; and she may have had clearance to mention only the results of the September publication. Which may very well be (1) work outside the original scope of the FDA/NIH study (2) completed at a later date (3) appearing somewhere other than PNAS.

 

[Sunshine]

Wow, I can't wait to find out what kinds of immune system abnormalities Judy found in people with XMRV. And I'm dying to know what Andrea Whittemore has been taking. I wish we could all try whatever it is. Remember how the Japanese doctors named CFS "low natural killer cell disease"? I'd like to propose another equally valid name for the illness: "easy to poison disease".

I can't wait to find out why we are so darn easy to poison. I'm so tired of being poisoned I could scream.

Forebearance

Hi. Poison feeling is elevated Cytokines, causes the 'flu feeling' and inflammation/burning like your dying, if very bad may trigger a dangerous state called 'Hypercytokinemia'. http://en.wikipedia.org/wiki/Cytokine_storm

I had this myself for over 12 months off/on, nearly killed me. Over the year these attacks have come on maybe 100's of times. Almost became clinically anorexic despite eating massively to compensate. (I'm guessing this was TNF-a going out of control causing wasting). No blood tests allowed here in the UK. Just got to stay alive in these attacks and eat glucose as creb cycle stops working basically and respiration is impaired with serious circulatory consequences, worsened by hypovolemia/polyuria and low aldosterone.

Wow, I can't wait to find out what kinds of immune system abnormalities Judy found in people with XMRV. Forebearance

A unique Chemokine profile could be possible. A year ago or so, Judy Mikovits mentioned something about Cytokines and Chemokines, perhaps it is this alongside with evidence of T/B/NKC infection. NKC function has to be impaired for a reason.

 

[urbantravels]

or even (4) something on which she is herself a co-author.

 

[urbantravels]

Anciendaze, I'm very interested in what you're saying about why the deniers couldn't find XMRV, but can't quite follow it all. Could you possibly rephrase/take it down a notch to the level of "reasonably well-educated layperson who took biology 20 years ago in college"?

p.s. *I* took Latin in high school, I don't know what they're teaching the kids these days. Gallia est omnis divisa in partes tres.