Retrovirology Publishes Five Papers on XMRV and Contamination

[Cloud]

Cloud, don't do it again with your psycobabble! JUST KIDDING!!! HAHA!

i'm not truly convinced that mental stress is a trigger for this horrendous disease. for sure, a flu, infections, pregnancy, or other physical stressors seem to trigger or initiate this disease. but then again, mine was a gradual 2-3months with no stressors. so what was my trigger? maybe you don't even need a trigger.

Why not? The childhood sexual abuse theory makes a lot of sense to me (haha).

I know....there is so much postulating and pontificating (I like that word) on all this stuff...even the "triggers" have not been "proven"

 

[urbantravels]

Recall bias plays a big role in all of this, I think. If you were to fall sick at a *completely random* time, and then start thinking back trying to discern whether there had been a "triggering" event, I bet you could find something to fit the bill unless you were a monk or something with an absolutely unvarying life and daily routine. (But I'm sure even monks have stresses in their lives.)

As Susan Sontag said more eloquently than I'm about to, "stress" has no explanatory power for major disease, because the state of having no stress is called "not being alive."

 

[lancelot]

Why not? The childhood sexual abuse theory makes a lot of sense to me (haha).

I know....there is so much postulating and pontificating (I like that word) on all this stuff...even the "triggers" have not been "proven"

Ouch! that one hurt! please no more. lol

Does one need a trigger for AIDS to occur or does having HIV and time enough? i think triggers or physical stressors can initiate a disease faster, but not necessary IMPO.

 

[free at last]

This has been my view all along. Looking at risk factors, transmission possibilities, the different modes of disease onset, and my own experience, I believe contaminated vaccine is the most likely source.

My thoughts: Overachiever (chronic stress) is our dominant personality trait and supposedly xmrv loves cortisol. We have both clusters and isolated cases. Onset almost always follows Immune stress and trauma, but not always as an infection. And, we have government health agencies strongly resisting discovery of the cause of this illness. I did not have an infectious onset....it was triggered by stress and the Hep B vaccine. Since I had 25 years of excellent health prior to onset, whatever was triggered had most likely been there (latent) for many years. I believe I contracted xmrv one of 2 ways....vertically, or via contaminated vaccine in childhood. I lean heavily to the latter.



Dr Judy has suggested vaccine as a trigger:

"On that note, if I might speculate a little bit," she said, "This might even explain why vaccines would lead to autism in some children, because these viruses live and divide and grow in lymphocytes -- the immune response cells, the B and the T cells. So when you give a vaccine, you send your B and T cells in your immune system into overdrive. That's its job. Well, if you are harboring one virus, and you replicate it a whole bunch, you've now broken the balance between the immune response and the virus. So you have had the underlying virus, and then amplified it with that vaccine, and then set off the disease, such that your immune system could no longer control other infections, and created an immune deficiency."

Its Interesting Cloud how Lynn Gilderdale also a very severe ME paitent had exactly the same onset scenario, vaccination Flu then downhill ever since, seems to suggest that vaccination triggers often ( or may ? need more info ) turn into the worst, most sever form of ME ? I Never really belived in the vaccine theory but i think this evidence needs looking at no question, it may be likely cloud some vaccines could be contaminated but others clean, would seem to make the most sense to me, but im unsure sure, would we be talking whole batches consignments what. Judy really should have Sophias samples Cloud i wonder if its worth approching both Sophias Mum and Judy on this ? would feel awful asking Sophias mum

as Lily Tomlin would say...And that's the truth[/QUOTE]

 

[Crappy]

Interesting that our symptoms are identical; disheartening that medicine remains so embattled and puzzled with even a diagnosis; as this drama has shown, yet again.

My initial symptom was lymph node pain and swelling, on and off for two decades with few other problems. My allergies had gotten so severe I elected to take serum injections. Near the end of the course of injections (which others say contain the same hazardous preservative as vaccines), the wheels came off. Night sweats, heart palpitations, insomnia, fever, chills, food intolerances, etc like an Atomic Explosion of the immune system. Debilitating chest pain set in, modern medicine jumped on that one! Heart workup to the wazoo, but the pain was Thymic. I swear to this day, not my Ticker, and no problems found with my heart using conventional knowledge. Been sick ever since, if I push too hard, my physical malady becomes a mental malady, if I keep pushing, I suffer an increasing loss of awareness.

Anyone else experience any of these patterns?

 

[WillowJ]

Recall bias plays a big role in all of this, I think. If you were to fall sick at a *completely random* time, and then start thinking back trying to discern whether there had been a "triggering" event, I bet you could find something to fit the bill unless you were a monk or something with an absolutely unvarying life and daily routine. (But I'm sure even monks have stresses in their lives.)

As Susan Sontag said more eloquently than I'm about to, "stress" has no explanatory power for major disease, because the state of having no stress is called "not being alive."

Very good, well put! I concur.

When I first got sick, I was high-acheiving but absolutely not stressed. I was very young, not a time that overwork catches up to people. When I look at my life, there are various stressful times, and a few of them were at the same time as a flare-up, but I cannot overall correlate stress to flare-up's, because there were lots of times I was stressed but had no flare-up (and some of the worst stressed times are included here), or had a flare-up but wasn't stressed.

 

[Snow Leopard]

My thoughts: Overachiever (chronic stress) is our dominant personality trait

I really wish people wouldn't keep repeating this myth!

What I was trying to convey was that since stress is known to be one of the triggers of this disease, maybe it's activating latent xmrv.

Stress is not "known" to be one of the triggers, it is merely speculated or hypothesized.

 

[alex3619]

My simple and sweet holiday gift

Hi Everyone,

If contamination is such a big issue and causing so many false results, how come so many studies can't find XMRV at all????!!!!!

Sweet Dreams,
Alex

 

[lancelot]

Hi Everyone,

If contamination is such a big issue and causing so many false results, how come so many studies can't find XMRV at all????!!!!!

Sweet Dreams,
Alex

And how can this "contamination" be found in 65%-86% in the PWC, but only 4-7% in controls? LOL!!!!! This contamination sure is "picky" LOL!!!!

 

[WillowJ]

I really wish people wouldn't keep repeating this myth! [overachivers]



Stress is not "known" to be one of the triggers, it is merely speculated or hypothesized.

quite right, Snow Leopard! Type A personality or overachiever is a complete myth, and stress as a trigger is purely anecdotal. I really like the "recall bias" model for this.

 

[WillowJ]

Hi Everyone,

If contamination is such a big issue and causing so many false results, how come so many studies can't find XMRV at all????!!!!!

Sweet Dreams,
Alex

very nice

And how can this "contamination" be found in 65%-86% in the PWC, but only 4-7% in controls? LOL!!!!! This contamination sure is "picky" LOL!!!!

It's theoretically possible this could explain one result in one lab (setting aside all the actual knowledge and science of checking for contaminants, antibodies, etc.), because there may have been, say, contaminated heparin from different lots and just by chance the contaminated lot of heparin was used for most of the PWC and a few controls... but it's highly unlikely, perhaps statistically impossible, that such a model could explain all the tests in all the labs involved.

Willow

 

[Bob]

The BBC have now added a few lines to their original article, which now gives the tiniest bit more balance, but still no real balance.

This is the added text:

But the authors of the original research say they stand by their conclusions.

"Nothing that has been published to date refutes our data," Dr Judy Mikovits, of the Whittemore Peterson Institute for Neuro-Immune Disease, said in a statement.

Dr Charles Shepherd, medical advisor for the ME Association, said patients should keep an open mind on the issue.

"The jury is still out," he said.

http://www.bbc.co.uk/news/health-12041687

 

[lancelot]

very nice



It's theoretically possible this could explain one result in one lab (setting aside all the actual knowledge and science of checking for contaminants, antibodies, etc.), because there may have been, say, contaminated heparin from different lots and just by chance the contaminated lot of heparin was used for most of the PWC and a few controls... but it's highly unlikely, perhaps statistically impossible, that such a model could explain all the tests in all the labs involved.

Willow

In your scenario, it is just as likely 50-50 that the contaminated heparin could be used by chance in the controls. Why would this contamination 100% of the time choose PWC in every positive study and BLINDED too?? do you see how this can't be "chance"? Even a vegas casino would arrest you! that's why i LOL!!!!

 

[Snow Leopard]

Unless the studies draw blood from healthy controls and patients at the same time, and test them in a double blind manner (to prevent over-handling etc), it is quite possible to have such divergent results. This has already been discussed by many, including Racaniello, Singh and others that I can't remember.

My problem with the Retrovirology studies is they present contradictory evidence on pinpointing the source of contamination and there is also the possibility of the IAP assay producing false positives (suggesting murine contamination where there is none). There are not enough sequenced XMRV strains for the Hue analysis to be useful either.
I want this to be settled, but the problem is that these studies make the water muddier, not clearer. If they agreed on a specific source of contamination, the outcome would be quite different.

 

[lancelot]

Unless the studies draw blood from healthy controls and patients at the same time, and test them in a double blind manner (to prevent over-handling etc), it is quite possible to have such divergent results. This has already been discussed by many, including Racaniello, Singh and others that I can't remember.

.

Yes, i agree that contamination can have such divergent results but how can it favor the patients in every blinded study?

 

[Cloud]

I really wish people wouldn't keep repeating this myth!

I was sharing what I have heard from 100's if not 1000's of pwc's over the years. That's not a rumor....it's just my experience which is what I was trying to convey. I would have felt more respected if you had addressed me directly.



Stress is not "known" to be one of the triggers, it is merely speculated or hypothesized.

Lol, the semantics. I was using the term "known" as in we all "know" that stress can be one of the triggers. But if your defining it as "proof", well then the same applies to all suspected triggers of ME/CFS. Hows this: "Infection, stress, vaccines, head trauma's, are all associated with being possible triggers for ME/CFS". Don't take my word for it...ask one of our top ME/CFS docs.

Sure stress is necessary for life. If we didn't stress over the approaching T-Rex, we wouldn't be here today. Generally speaking, mild to moderate stress is necessary to function and have good health. And the same can even be said about high levels of stress for brief periods of time. But if it becomes chronic....it is considered high risk for triggering disease. I thought that was common knowledge. It is in the medical community.

I can only assume the reason this unnecessary topic is still being beat on is because of the sensitivities around the propaganda forced on us for years that this disease has a psychogenic cause. Well, I was very polite in sharing that I know better than that and like the rest here, I have fought against that oppression for many years. I've never said stress can be a cause....I said trigger. If anyone needs to debate more on stress as one of the reported triggers for ME/CFS, please ask someone like Dr Peterson....but I know what he will tell you. If this exchange of idea's and opinions involved communication in a way that included a sense of care and respect for me as a fellow suffer, I'd be all for it. But since that's not what's happening, I'm done here.

 

[lancelot]

Lol, the semantics. I was using the term "known" as in we all "know" that it is one of the triggers. But if your defining it as "proof", well then the same applies to all suspected triggers of ME/CFS. Hows this: "Infection, stress, vaccines, head trauma's, are all associated with being possible triggers for ME/CFS". Don't take my word for it...ask one of our top ME/CFS docs.



I've never said stress can be a cause....I said trigger. If anyone needs to debate more on stress as one of the reported triggers for ME/CFS, please ask someone like Dr Peterson.....

And i say although a trigger(flu) can initiate the disease faster, it is not necessary as seen in non-flu/no stressor gradual onset.

 

[WillowJ]

In your scenario, it is just as likely 50-50 that the contaminated heparin could be used by chance in the controls. Why would this contamination 100% of the time choose PWC in every positive study and BLINDED too?? do you see how this can't be "chance"? Even a vegas casino would arrest you! that's why i LOL!!!!

It's theoretically possible this could explain one result in one lab (setting aside all the actual knowledge and science of checking for contaminants, antibodies, etc.), because there may have been, say, contaminated heparin from different lots and just by chance the contaminated lot of heparin was used for most of the PWC and a few controls... but it's highly unlikely, perhaps statistically impossible, that such a model could explain all the tests in all the labs involved.

Cheers

Willow

 

[roma]

Yeah, I think the retrovirus is a large part of the problem. I also have the feeling it takes many years before it results in symptoms. I have had weird health issues for at least a decade and I am now 32. The telltale fatigue I got in december 2009. Before that I "only" had fibromyalgia and some other CFS symptoms. The fibromyalgia was manageable, as it was "just" minor to average pain. The fatigue, the feeling of unwellness, the non-refreshing sleep... that's crushing for me. I used to need only about 6 hours of sleep. Now I can easily sleep 12 hours a day and still feel like a wreck.

My first health issues manifested itself when I was seeing a woman who suffered from atypical MS. I am wondering if she might have this virus as well...

hey Jemal you and me both buddy, the girl i was with has had atypical MS for the last five years and guess what? her last boyfriend about four years ago also got really sick after being with her and she told me that he's been sick since then, but she never warned me about anything because the wonderful doctoros she's had over the years always told her that atypical MS was not infectious to make things even more complicated, when she got sick first it was when she got pregnant about 6 years ago and she kept telling the doctors that her pregnancy was not normal because she was really sick and had crazy feelings in her head.

after she had her daugther she kept fainting and was always really tired and the doctors said her body was too weak to handle pregnancy and she never recovered after that, some time after she had her daughter she was diagnosed with atypical MS and now hear daughter who is five years old hasn't learned to talk yet and this is not normal most kids talk by the time they're two years old.

she also told me that before she got pregnant she never had any health problems whatsoever and that guy that got her pregnant was always sick but he never knew what it was, too bad he didn't stick around to be with her because at least i would like to ask him what his symptoms are.

Now the very first possible diagnosed for me was MS because of the brain demyelination, but i haven't had an official diagnostic but accordnig to my doctor my symptoms sound more like ME, to me there will never be any doubt that i got a virus from this girl, initially i thought she had given me HIV that's why i kept testing for it for months.

I have 8 siblings, 6 aunts 8 uncles and i have like 40 cousins, 8 nephwes and 6 nieces my cousins have many kids all combined and nobody but nobody in my family has a history of ME/CFS,MS,Lupus,RA,heart disease,cancers, no autoimmune diseases at all, not even one i don't think is coincidence that after i was with this girl who has atypical MS now i have many of her symptoms and her last boyfriend as well and her daughter is five years old and hasn't learned to talk...so much for not being infectious...

 

[Cort]

Interesting that our symptoms are identical; disheartening that medicine remains so embattled and puzzled with even a diagnosis; as this drama has shown, yet again.

My initial symptom was lymph node pain and swelling, on and off for two decades with few other problems. My allergies had gotten so severe I elected to take serum injections. Near the end of the course of injections (which others say contain the same hazardous preservative as vaccines), the wheels came off. Night sweats, heart palpitations, insomnia, fever, chills, food intolerances, etc… like an Atomic Explosion of the immune system. Debilitating chest pain set in, modern medicine jumped on that one! Heart workup to the wazoo, but the pain was Thymic. I swear to this day, not my Ticker, and no problems found with my heart using conventional knowledge. Been sick ever since, if I push too hard, my physical malady becomes a mental malady, if I keep pushing, I suffer an increasing loss of awareness.

Anyone else experience any of these patterns?

Amazing story Crappy! another type of trigger. What kind of injections? They are stimulating the immune system - so in a way its not that surprising. If your system was funky before maybe they pushed it into a poorer realm of functioning.

I just bumped into someone who's CFS appears to have been triggered by giving blood which suggests to me she was really low blood volume before and it tipped her over?