Retrovirology Publishes Five Papers on XMRV and Contamination

[WillowJ]

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.

Sorry about that, Cloud, if I contributed to your sense of not being heard.

You're probably right why this is a sensitive topic.

Also I just don't see a biological model that I like for how this would work. Stress is very theory-based to me, and I'm deeply suspicous of theory-based explanations. I don't see much science in stress. I love Dr. Jason but I just don't like the HPA stuff as a trigger. Maybe that's my problem in not understanding something, however, or being biased against anything connected to a (bio)psychosocial model and bad inclusion criteria.

You are entitled to your own opinion, of course, but you understand (since you stated it already) why this hits a nerve.

In my more reasonable state, I usually allow that there could be a subset for which stress was importartant.

 

[WillowJ]

speaking of MS, there does seem to be a virus associated with it. There are lots of new papers on EBV being related to the disease process of MS. And there's also a postulated novel virus, MSRV (MS associated retrovirus), an endogenous virus:

Saresella M, Rolland A, Marventano I, Cavarretta R, Caputo D, Marche P, Perron H, Clerici M. "Multiple sclerosis-associated retroviral agent (MSRV)-stimulated cytokine production in patients with relapsing-remitting multiple sclerosis." Mult Scler. 2009 Apr;15(4):443-7. Epub 2009 Feb 27. PMID: 19251836

More on endogenous retroviruses (those already present in the DNA, in sequences previously thought to be 'junk DNA,' Something triggers them to become active, perhaps another infection)

Christensen T. "HERVs in neuropathogenesis." J Neuroimmune Pharmacol. 2010 Sep;5(3):326-35. Epub 2010 Apr 27. Review.PMID: 20422298

and, wow, mouse hepatitis virus:

Lane TE, Hosking MP. "The pathogenesis of murine coronavirus infection of the central nervous system." Crit Rev Immunol. 2010;30(2):119-30. PMID: 20370625

but at least one group can't find XMRV:

Maric R, Pedersen FS, Kjeldbjerg A, Moeller-Larsen A, Bahrami S, Brudek T, Petersen T, Christensen T. "Absence of xenotropic murine leukaemia virus-related virus in Danish patients with multiple sclerosis." J Clin Virol. 2010 Nov;49(3):227-8. Epub 2010 Sep 9. No abstract available. PMID: 20829105

How do we know XMRV is not endogenous?

 

[lancelot]

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.

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.

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.

..

that's a crazy scary story. did she tell you she got those 2 guys sick before you had sex?

 

[oceanblue]

Not sure where a phylogenetic tree comes in? PCR is an artificial system. We run PCR, do some lab tests, and then when we're through put the materials in an autoclave (complete sterilization via heat and pressure), freeze for later testing, or otherwise safely and carefully dispose of them. We don't return amplified material to a live system.

I was referring to the Phylogentic XMRV tree in the Hue paper; I think all or most of the variants on that tree had been sequenced following PCR amplification, hence my point that if PCR added variation, it could apply to everything on that tree.

 

[oceanblue]

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

If you have an unusually long/severe infection from which you never make a good recovery, then identifying that as a trigger isn't recall bias or post-rationalisation, it's just observation. What would be helpful is a large study looking at hundreds or better still thousands of newly diagnosed patients to identify any events in the preceding12 months, using structured questionnaires to give systematic results. Small scale studies like this have been intriguing but inconclusive, and usually covered patients who fell ill an average of 5 years ago or more - so there is a real danger of recall bias in this case.

 

[Jemal]

Sounds sorta like me. I'm 40 now, but was finally disabled by CFS at 37. In the previous year, one day i woke up completely unable to move due to exhaustion with horrendous unrefreshing sleep. this would last for a few days before i came back to normal. then, it repeated again 1x/month then 1X/few weeks and it was lasting longer and longer up to 1 week at a time. i quite work to rest up. i started sleeping +14hours/day(hypersomnia) but the unrefreshing sleep would never go away. After going to the doctor and being put on the poisin pill called cymbalta, i got much much cognitively worse and got insomnia as a result. one thing that didn't change was the horrible unrefreshing sleep whether i had hypersomnia or insomnia. after seeing 5 docs, multiple meds, treatments-accupuncture, TCM herbs, i went downhill fast and never recovered to any point before seeing a doctor. i quite all meds and doctors after 6 months, and i've been slowly getting better after +2years from 10% bedbound functional to 20-30% housebound functional now. I had no previous health problems and was a health nut and gym rat for the last 20 years. friends described me as the "healthiest person i know" now the "sickest".

What were your weird health issues prior to CFS?

My weird health issues were mainly the pain that moved through my body over the years. At first I thought I had RSI, because I only had pain in one arm. Then the other arm followed. Over the years the pain spread somehow and nowadays I have pain everywhere (soles of my feet, knees, back, etc). I also got headaches, floaters, inflammation issues, etc. over the years. And I started bruising easily.
Symptoms would always stack, so they never went away... I just got sicker and sicker. I thought I had it bad, until the fatigue and the feeling of malady hit me though. Then it became really bad. At the moment I fit all the CFS criteria. I have seen several doctors and I don't have rheuma and they can't find anything else: they do admit I am sick though
One doctor told me I possibly had CFS, but he didn't want to give me that as an official diagnosis as there is no treatment for it
Another doctor didn't have a diagnosis for me either, but he did give me medicines that are used to treat Fibromyalgia / CFS.

 

[anciendaze]

This topic has been so active that I have not followed the discussion carefully. There is one tiny crack in the wall I want to emphasize:

It is vital to understand that we are not saying chronic fatigue syndrome does not have a virus cause – we cannot answer that yet – but we know it is not this virus causing it.

This statement came from Greg Towers at University College London, the epicenter of denial. It positions them to allow for new evidence of viral infection in ME/CFS when the Stanford/Columbia studies are done. I can safely predict there will be some new names for things.

The generally overlooked point here is that they are no longer committed to the psychoneurotic theory. In stating that XMRV is not a human pathogen they managed to hit Eric Klein and his results on prostate cancer by accident in this drive-by-publication attack. He is not amused. They have completely failed to separate XMRV in ME/CFS from XMRV in prostate cancer, yet that is precisely what seems to have been claimed. This is a serious weakness. Don't expect it to go unchallenged.

My take is that the strategy has become a rear-guard action of delay, not a stonewall defense.

 

[alex3619]

Hi anciendaze, I have thought they are playing a delaying action for some time now. They backed off from saying it was depression or deconditioning, and allowing for a viral cause, some time ago. Now, according to UK public health people (this was on a thread several weeks ago, I forget which or who said it) basically said that CBT/GET only helps, it can't cure. (Although I could be misrembering the exact implication or statement.) Bye, Alex

 

[alex3619]

At first I thought I had RSI, because I only had pain in one arm. Then the other arm followed. Over the years the pain spread somehow and nowadays I have pain everywhere (soles of my feet, knees, back, etc). I also got headaches, floaters, inflammation issues, etc. over the years. And I started bruising easily.
Symptoms would always stack, so they never went away... I just got sicker and sicker. I thought I had it bad, until the fatigue and the feeling of malady hit me though. Then it became really bad. At the moment I fit all the CFS criteria. I have seen several doctors and I don't have rheuma and they can't find anything else: they do admit I am sick though

Hi Jemal, this describes my symptoms prior to my CFS diagnosis exactly. In fact I was diagnosed with RSI but then it hit my back, my knees, etc. The fatigue was there though, it was just mild enough that I could ignore it except for several periods which I had to quit sports etc. In the several years before I was diagnosed with CFS (it was called ME back then and I don't think I ever heard a doctor suggest I might have ME) my fatigue was severe enough that I used all my sick leave, holiday leave and leave without pay resting. That includes weekends.

I was also in an RSI research study. They couldn't find any RSI but did find enzymes indicating that I had muscle damage of an unspecific sort.

Bye
Alex

 

[Jemal]

Hi Jemal, this describes my symptoms prior to my CFS diagnosis exactly. In fact I was diagnosed with RSI but then it hit my back, my knees, etc. The fatigue was there though, it was just mild enough that I could ignore it except for several periods which I had to quit sports etc. In the several years before I was diagnosed with CFS (it was called ME back then and I don't think I ever heard a doctor suggest I might have ME) my fatigue was severe enough that I used all my sick leave, holiday leave and leave without pay resting. That includes weekends.

I was also in an RSI research study. They couldn't find any RSI but did find enzymes indicating that I had muscle damage of an unspecific sort.

Thanks Alex, it's good to know there are other people out there that have had the same kind of disease onset. Not that I wish you ill, but at first I though ME/CFS was always something that suddenly hit you. Not something that was building up of for months or in my case years.

Looking back, I think the fatigue was building up in me as well. I remember crashing on the couch at night after work and sleeping 12 hours in the weekends. It's just that in december 2009 I seemed to hit some kind of point of no return and the fatigue became 20 times worse. Since then I also have the other symptoms, like frequent throat aches, the feeling of malady, etc. I didn't have those before then.

By the way, I am wondering if the stacking symptoms are an indicator for this virus maybe spreading through my body. So first only arms, then back, knees, feet, etc. Or maybe the virus is affecting the spinal cord or brain. Spinal cord seems more likely, now that I think of it.

 

[MarxyGrouch]

goneAWOL's latest in a series of excellent comments on the CBC site:

krakaus -

Your argument that somehow the review processes for the two highest impact journals that exist, Science and Nature, is somehow inferior to that for Retrovirology, PLoS and BMJ does not hold.

The Lombardi et al. paper went through a rigorous 6-month review process before publication in Science.

Myra McClure's paper in PLoS (Erlwein et al.) was received on the 1st of December 2009 and accepted on the 4th of December 2009. That is only 3 days from receipt to acceptance. Hardly rigorous.

Van Der Meer's paper (Kupperveld et al.) was pushed through, by admission of the editors of the BMJ, despite serious study weaknesses. The excused used was concern that ME/CFS patients were considering using anti-retrovirals. There was an AGENDA for publishing, not a scientific basis.


So far, the arguments against any association between ME/CFS and HMRV rely on two basic points which are contradictory:

First, several papers have been published that failed to find the virus AT ALL. These papers have not used the same methods as the Lombardi et al paper. They have relied on a synthetic clone of XMRV which does not sufficiently account for the likelihood of sequence variation. They have used PCR which has repeatedly been shown to be the worst possible method for detecting XMRV. It doesn't matter how many badly designed studies are done that fail to find the virus, they are still badly designed studies, and they do not in any way gain strength in numbers. The Alter-Lo paper DID account for the likelihood of sequence variation and, lo and behold! They found the virus!

Now we are confronted with the argument that there is insufficient sequence variation in XMRV, therefore it is not a human virus. Um..... Do you see the problem here?

If the labs that have failed to detect the virus at all had considered the likelihood of sequence variation in the development of their assays, they might have had a better chance of detecting it!

So you see, the arguement that the virus has too little sequence variation and therefore can't be a human virus is in direct contradiction to the fact that those who actually account for sequence variation (by not relying on a synthetic clone) are the only ones who have actually detected it in patient samples to date.

 

[MarxyGrouch]

it should be noted the Smith, who wrote the commentary the accompanied the 4 studies published on monday, has also made the claim in his blog that Science and Nature are biased journals and are not rigorous.

This claim is bound to make many many scientists VERY angry! Work it to your advantage folks.

 

[alex3619]

Hi Jemal, It might interest you to know that learning to pace myself and a decade and a half saw my pain levels seriously decline. They now only jump up if I push myself too hard and go into a full relapse, and then only for a while. Pacing is key. Its the same story with sore throat, swollen lymph nodes, gastrointestinal problems etc. Pacing and a lot of time has seen my symptoms decline. What has steadily got worse are my sleep and memory problems. I have also developed peripheral neuropathy, although this seems to be stable at the moment not getting worse (actually it is probably a little better than it was). This is probably small fiber neuropathy.

Bye, Alex

 

[oceanblue]

it should be noted the Smith, who wrote the commentary the accompanied the 4 studies published on monday, has also made the claim in his blog that Science and Nature are biased journals and are not rigorous.

This claim is bound to make many many scientists VERY angry! Work it to your advantage folks.

Interesting: do you have a link to that? thanks

 

[Crappy]

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.

Cort

I know the weekly injections had a minuscule amount of my allergens. I have always wondered what the liquid in the shot was, a question I never pursued. If anyone here knows what is used as the preservative/suspension of Allergy Serum Shots, I would like to know?

Cort, if you are the Architect of this site, thanks for the great work!

These were exactly the symptoms I had and the order in which they showed up. I don't have night sweats anymore because I think my immune system is too dysfunctional right now. The Th2 shift is extreme and I'm more fatigued than before. Brain is an absolute mess.

Deisel

Do you have Tinnitus too? My Insomnia is the worst symptom I have, then the Tinnitus. I agree with the immune statement, I don't think I can mount a fever anymore. I haven't had one since the night sweats 10 yrs. ago. Which I think is a key to this/these microorganisms taking over. I had an improvement in cognitive function from massive B 12 use (quality), quality L-Carnatine (not brand with any sugars) and Pregnenolone, but the pregnenolone seems to reactivate the virus after a certain stage of the disease. Judging from the posts I've seen your cognitive function is better than a lot of us.

 

[Jemal]

Cort
Do you have Tinnitus too? My Insomnia is the worst symptom I have, then the Tinnitus. I agree with the immune statement, I don't think I can mount a fever anymore. I haven't had one since the night sweats 10 yrs. ago. Which I think is a key to this/these microorganisms taking over. I had an improvement in cognitive function from massive B 12 use (quality), quality L-Carnatine (not brand with any sugars) and Pregnenolone, but the pregnenolone seems to reactivate the virus after a certain stage of the disease. Judging from the posts I've seen your cognitive function is better than a lot of us.

Tinnitus... many of my oldest and closest friends are developing weird health symptoms, the biggest symptom being Tinnitus. They are all around 30 and I don't think Tinnitus is that common at that age (also they are not the kind of people that enjoyed loud music in their youth). At my last birthday party we sat in a circle and we were all a bit depressed, as many of us have bad health somehow. Maybe life dealt us a stack of bad cards... or maybe this virus is to blame. Inflammation can have a big impact on Tinnitus.

 

[roma]

that's a crazy scary story. did she tell you she got those 2 guys sick before you had sex?

she told me when i started to ask her what she had given me. i thought she had given me HIV because a few weeks after i was with her i started to feel really weird with all sorts of symptoms but she said the only thing she had was atpical MS and she kept telling me that it wasn't infectious.

Then i started to push and push until she went to test for HIV because she noticed that i was really sick and i kept testing for HIV and it kept coming back negative everytime, i thought for sure i had gotten HIV and every week that went by i would have a new symptom and everytime i went testing i would say "i know this time will be positive" because all the initial symptoms resemlbed HIV in a way.

she told me then that her last boyfriend also got sick around 4 years ago when they were together and he never recoverd, she told me that it was weird that the both of us got sick and with very similar symptoms, as far as the first guy goes she thinks he is the one who got her infected with whatever the hell we got..

 

[WillowJ]

I was referring to the Phylogentic XMRV tree in the Hue paper; I think all or most of the variants on that tree had been sequenced following PCR amplification, hence my point that if PCR added variation, it could apply to everything on that tree.

ok I would normally have read the papers but I didn't this time. So, my bad.

I would guess the reason he would say PCR might have caused the sequence varation would be because 22Rv1 seems to be well-used, maybe it's been amplified and sequenced often, more often than the other items.

 

[MarxyGrouch]

Interesting: do you have a link to that? thanks

I was mislead about this. Apparently it is a different Smith and the person complaining about the review process of Science and Nature is yet a different person.

 

[SilverbladeTE]

Guess where I found a refference to Myra McClure?
Denying HIV could be a ma-made creation (and thus bio-weapon or vaccine contaminant)
Just small part of the article, but hey, interesting she turns up on that side of the fence...or maybe not.

BMJ, 1989 article, The Origin of HIV