Question on XMRV

[Kati]

So Dr Judy and her friends at WPI found XMRV, linked to some degree to CFS. Their study population included very sick people, the sickest of us. I am wondering if the less sick will also test positive? Would that mean the viral load is less?

So many questions!!!

 

[PoetInSF]

Those are questions that other scientists are trying to answer. My guess is that WPI has already tested samples from less sick people and found them not helpful to make their case. If they were positive, WPI would've included them in their study. How much more work would it take to test additional samples, after all?

Still, that does not necessarily negate their findings. It's still possible that subset of cfs is caused by xmrv. Only way to find out would be to do clinical drug trials on xmrv-positive cfs patients.

 

[kurt]

XMRV as a probable subset

Those are questions that other scientists are trying to answer. My guess is that WPI has already tested samples from less sick people and found them not helpful to make their case. If they were positive, WPI would've included them in their study. How much more work would it take to test additional samples, after all?

Still, that does not necessarily negate their findings. It's still possible that subset of cfs is caused by xmrv. Only way to find out would be to do clinical drug trials on xmrv-positive cfs patients.

This makes a lot of sense, that XMRV-positive people might be a CFS subset. I agree, logic says that WPI found their positives for XMRV in the sickest cases.

There may also be outbreaks of XMRV, and if WPI happened to hit those they might have a skewed dataset. This seems possible in light of the German prostate cancer study (showing zero positives for XMRV), suggesting that XMRV maybe be hitting the US and not Europe. Also that suggests that XMRV is not required for prostate cancer.

We really need more studies reported before anyone draws conclusions.

Also, even clinical drug trials will not be complete proof, because drugs could be hitting other viruses besides XMRV.

 

[Eric Johnson from I&I]

> Those are questions that other scientists are trying to answer. My guess is that WPI has already tested samples from less sick people and found them not helpful to make their case. If they were positive, WPI would've included them in their study. How much more work would it take to test additional samples, after all?

That's a good point, although it is routine to go to the sickest when you do novel research. It may help you detect things you would otherwise fail to detect for a lack of statistical power. With sicker subjects you don't need as many subjects in order to make sure what you observed was unlikely to happen by random chance. Less subjects, less expense, more experiments. None of these people have money coming out of their ears.

They submitted only four months after discovering it. Sometimes, additional experiments are done at the behest of reviewers after submission, but it's quite possible everything they did was in those four months. PCR is pretty easy but that other stuff besides PCR was a lot of work, contra your speculation. Actually, quite a lot. Also, making damn sure your PCR isn't contaminated/etc is far harder than running the PCRs themselves. When you publish some barely-interesting paper, you won't feel the heat if it's wrong. If you mess up something of this import, you will pay. So you have to watch out.

Also, remember that they presented unpublished data on fibromyalgia at CFSAC. Same disease, in my opinion, and we don't know if all those cases were severe ones or not. For one thing, they probably wouldn't have been referred to as fibro if the met the typical criteria for CFS. They had PCR data only for that, and the positivity was the same as the PCR psotivity in CFS.

 

[George]

Waiting

If XMRV were to only show up in the sickest of patients then you wouldn't have the 4% in the general population. Nor the percent in the autistic group or the atypical MS group or the fibro group.

Does anyone know the expected time for the CDC to try to validate the study? Does anyone have a list of the groups studying the virus now? I'm thinking at least 3 to 6 months. 3 months if they find . . . say disturbing information, 6 months if each group get's involved in it's own study.

Does that sound about right. Cort would you care to offer you expert guess??

Thanks all

 

[garcia]

This seems possible in light of the German prostate cancer study (showing zero positives for XMRV), suggesting that XMRV maybe be hitting the US and not Europe

This is oft-repeated, but it doesn't hold water IMHO. XMRV is almost certainly transmitted human-to-human. In which case it should be pretty much worldwide. Certainly any infectious disease in the US is also going to be found in Germany (vector bourne diseases aside).

The difference in the prostate findings were almost certainly due to differences in assays used. If you look for oranges you won't find apples.

 

[anne]

Levi, I'd like you to follow me around and say very encouraging things articulately and with the great force of truth.

 

[gracenote]

we accumulate

Hi Levi. For some reason I love this phrase of yours. Maybe it belongs on a T-shirt.

Most of us don't die of the disease, we accumulate.

As for me, I've been accumulating true friends, aggravation, a little wisdom, patience AND impatience, great XMRV info from this forum, NOT much in the way of material stuff, lots of interesting viruses (which are probably also interesting to look at), and most of all, I've been accumulating very positive responses from people on this forum. May we all continue to accumulate the good stuff and hope!

 

[cold_taste_of_tears]

Look in the right place and you shall find.

It seems many people are not aware the WPI de-bunked the German Study that didn't find XMRV. (We keep hearing about this German study, but not that it wasn't even comparing the same thing. ). note John Coffin didn't remember this fact either in the CFSAC, which was kind of unfortunate as otherwise he gave a great delivery, really impressive and it was good of Wanda to invite him at the last minute to give Doc Peterson some more credit/valdation for his discovery.

As the shrinks are saying XMRV has been around for thousands of years - Coffin is saying it's relatively recent. Coffin should know, he's a virologist - hence he's impresed.
The shrinks (who Reeves called an 'Autonomic Expert') Professor White, well him and his gang are stating you cannot have CFS if you have Cancer. ?!!!
WPI will tell you CFS (XAND) causes Cancer.

Read this document and see the usual denial CFS is a terrible disease - because their CFS is a mental neurosis, or 'psychoneurotic' as Reeves says.

http://www.bartscfsme.org/Documents...leukemia virus-related virus XMRV and CFS.pdf

I've met these people, been in their ward and been told to my face CFS is 'maintained' by Automatic Negative Thoughts and Fear.
These people will (naturally) want to keep CFS/ME as a mental disorder. It is a mental disorder here in the UK, and according to the CDC also and Reeves.

Once we have XMRV, let CFS be a mental disorder throw it to the dogs. It's nothing to do with us . CFS is an illusional tag, dreamed up in the USA by people
in denial ME (XAND) was destroying and even killing people. Tragically, Americans kept using the words CFS (big mistake) they should have used the words
ME - which even to this day is still classified as a brain disease (ICD-10 G93.3). Benign Myalgic Encephalomyelitis. (ME). Because of your insurance policies though
you were forced to use the words CFS. UK Compromised and invented a tiredness disease. CFS/ME. CFS/ME does not exist outside the UK. (Once cannot forward
slash any disease). It's also prohibited to double code (by using a forward slash) by the WHO - World Health Organisation! But the UK did it anyway.

The German study didn't even look at the same cells as the WPI - what a co-incidence Hence they did not find what the WPI found.
This sort of thing will go on and on, personally we shouldn't care if a bunch of tired people have XMRV or not. We aren't tired.

Do Asthmatics care if other people with shortness of breath, don't have Asthma? No. Does it matter? No.
Once there' s a diagnostic critera/test for Asthma, even if 1% of people test positive and the others do not, then that's just life.

ME CFS will be the same, only a small amout of people will have it. Biologically and Psychologically there are endless reasons to have 'CFS' that
will have nothing to do with XMRV. Naturally. Hence we need a test, and throw away that ridiculous name, and use XAND.

I can't even clean myself fully when having a bowel motion my muscles are so weak - my ex girlfriend was impressed at that I'm sure - hence the 'ex' in girlfriend.
As far as I know, people with chronic tiredness don't have trouble in that department, but someone with a disease that gives profound muscle weakness - probably would! **Bing**
As well as heart problems, breathing problems, walking problems, vision problems, **Bing Bing Bing** These people need testing for XMRV, obviously.

All Psychiatrists study is tired people. CFS in the UK is, and I quote from the NHS Choices website: 'Long Term Tiredness'. This is CDC CFS.
Or CFS/ME in the UK - what they call a 'Life-style choice'.

Ignore them, ignore the tired people who claim to have your disease, they can test positive all day long for all I care and and go get better on CBT/GE/Pacing/LP/Gupta.

All we're interested in is IF immune supressed brain damaged people with ME (Ridiculously labelled CFS by the CDC) and those with associated ANS Dysfunction/infllamation/oxidative injury, and if they actually have XMRV. Turns out they will. Becuse when this type of person is selected, we've now got a 95% positive hit ratio.
(64% was the preliminary test, they've improved it).

XMRV with these associated symptoms will make you very sick. You won't be able to have ME (Ridiculously labelled CFS by CDC) without being very sick. If you have a disabled immune system, then you will be sick 24/7 and have a plethora of on-going damage to your body.

Remember I'm not biased. I was still mountainbiking and driving a car when I first got sick. It took me 5 years to end up in a wheelchair. I can remember having 'mild' ME (CFS) yet looking back it never was mild, I was always really sick, and certainly not suffering from chronic tiredness. The Neurological/Autonomic problems came on first of all, and then the cardiac - and then the immune - last.
Years later. That's obviously a progressive disease and a chain of events reported by people all over the world - in exactly the same order.

Either we have pathogens that do this to us, or we are all secretly mentally ill and enjoy wasting our lives pretending to be suffering from a terrible disease.
(Gee let me think).

Hence the WPI choose very sick people, to make sure they are testing the correct patient group. If your heart rate is over 200bpm riding a push cycle, then something's probably very wrong - even if you can still go to college like I could. That's the first year I got sick. When I was racing motorcycles, the lawnmowers, then wheelchairs, and then chocolate biscuits for 'excitement' on the bed.

Less affected people probably won't have XMRV induced neuro/immune disease (XAND). How is that possible?
Even 'mild' ME won't make you less affected. Less affected in CFS speak will mean they don't have CFS.

I've not wasted 20yrs to be worried about a bunch of tired people screaming they don't have XMRV, lets talk about people who do - and lets help these people.
Tired mentally ill people who 'recover' on CBT/GE/Pacing, don't need life saving medications - we do.

The caution is here, because we've been brain washed to worry and obsess over possibility what/if/but/when/ etc etc.

If there was a test for HIV coming out, do you think HIV patients would care about the millions of other people out there with chronic fatigue - who don't have HIV? Of course not!
We need to start doing the same and learn how to do it. Learn not to validate ourselves - we're forced to do this 24/7 because of the disbelief.

Can you imagine my friends how insane psychiatrists sound when they say XMRV cannot be the cause of CFS because not everyone with CFS will have it.
That's like saying not everyone with increased thirst/fatigue - doesn't have raised blood glucose!!!!!!!!!! And so raised blood glucose cannot be a sign of diabetes. LOL.

We think like Psychiatrists, I do it myself all the time. Even if a hospital bed I criticse my own blood tests results and think up endless reasons that it can't be due to ME .
I do it, it's automatic. Self doubt over decades, makes you self doubt yourself.

It's a statisitcal impossibility that EVERYONE with the label CFS will have XMRV, probably about 20% or less of people with CFS will have it, as CFS doesn't mean anything, it's a label, not a diagnosis.
Hence the 25% severely affected. Who knows 1 in 4 people? Who made this statistic? Where are the numbers kept? No census is kept on ME/CFS - it's supposition - yet like sheep, we join in and
say 'ohh yea the 25%' who are badly affected with CFS. LOL. Do we have names on our front doors with an arrow and a little van comes around noting down who is worst? This is all
disinformation from the governments - to make the TRUE people - appear the MINORITY. By nature XMRV is a progressive, it has to be by very nature. You cannot cure a DNA virus ever,
and you cannot back it off with medical treatment. Yet magically, 75% of this patient group (who get no treatment) have magically done this, before medical science worked out how to.

ROTFL!!!! This is what the CDC claims, and all governments around the world, who denied you even 1% research into a diagnostic test.

I've met a handful of people with ME (CFS) who were told they have it, most have recovered - but all through psychological methods, anti-depressants or wearing low cut tops on myspace. (And that's just the men). How odd, because recovery rates are 2-8%. Meaning 92-98% of people with ME..... Never get better. How odd then the people who didn't have it, who were told they did, mostly DID
get better.

These people make up most people with CFS.

My mum's friend was told CFS, she's a teacher - she had a year off, she's better now. Did she have CFS? Of course not. None of the problems we have, not one symptom and she is diagnosed with the spell 'you have CFS' and tells every tom dick and harry she's an ME patient and better through taking anti depressants.

These people the CDC will select. Expect it, and ignore it.

We will have our day, I'm sure 100%.
We will get help, and we will improve to some degree (with medications).
Our lives improves - learn to be selfish the first time in your medical lives - learn to think about yourself and ignore the people who discredit and doubt you.

You're worth it, you've gotten this far after all these years and amazing journey.

Amen
x

 

[Mark]

Solidarity

I'm troubled by some of your comments, cold_taste_of_tears, because I don't yet know whether I'm going to test negative for XMRV and get left behind by this great new hope. You make many excellent points as always (the largely-ignored debunking of the German prostate cancer study is crucial as you rightly explain) - and I share your anger and militancy, but I just hope that none of that anger ends up being directed at those with 'CFS' but not 'XMRV'.

You seem to be drawing a line between those severely disabled by XAND, and those who are diagnosed with CFS but don't have XAND. You seem to be labelling those CFS people with a psychological disorder, even though I'm sure you know from your own experience what a horrible thing that is to do to someone. It's difficult, because it may even be true that there really is a psychological condition that mimics some of our symptoms. But even after someone tests negative for XMRV, will that mean there is any proof that they are NOT physically ill with an unknown condition? Of course not - how could there be? We should all understand this very well by now.

I've been ill for over 15 years, and I think my many and varied bizarre symptoms fit well with the pattern, and with the diagnostic criteria (whether Fakuda, Canadian or whatever). But I do feel I have my condition fairly well stabilised at the moment (so long as I live a 'half-life'), and I'm nowhere near as sick as some of the people I've been reading about in the last few weeks. I have no doubt that I have a chronic medical condition, but I do wonder whether it is the same condition the WPI have been studying. So probably my biggest fear at the moment is that the XMRV breakthrough will apply only to the most severe cases, and will not apply to the rest of us.

I've been wanting to make this point ever since the news broke: the political changes that we all hope will come about from this breakthrough need to apply to many people who may be without XAND, as well as to those with it.

It may turn out that I do not have XAND. What I do have in common with you, though, is a life destroyed by a mysterious illness whose symptoms are so bizarre and unrecognised that I am treated with suspicion and contempt, and can't get either effective medical help or any of the welfare support that millions of other chronically sick people receive. So I feel as though I am part of this community. I feel as though we have so much in common, such shared experiences, an experience lasting decades which means that we can understand each other as nobody without chronic ideopathic conditions ever can.

But perhaps I am an imposter. Perhaps my illness is not your illness. Perhaps I have a different retrovirus, yet to be discovered. Perhaps I have another, similar condition, with a completely different cause.

I would like to hope that all of us for whom XMRV provides a way out of the torture of this 'undiagnosable' state will remember those who are left behind. Those whose condition remains undiagnosed, who remain in the hands of the shrinks.

I fear a future where the new XAND community turns its back on those who have ME or CFS but do not test XMRV+. Even worse, will those people then be blamed by the XMRV+ for polluting the CFS data with their separate, 'spurious' illness, thereby delaying the breakthrough? Or dare we hope that while the XMRV+ campaign for their new rights, they will remember also the CFS but XMRV- people, and campaign also for them? Dare we hope that there will be a new dawn for ALL people with mystery undiagnosable illness? Or will the 'lucky' ones who find their answer turn their back on those who do not?

I fear all this, but I do not believe it will come to pass. The Reeves/CDC definition of CFS has rightly been a huge campaigning issue, but the irony may be that as a result we are all assuming that Reeves' cohorts will mostly turn out not to have XMRV. That might not be the case actually - it might be that most of those people too - even those with less severe expressions of CFS - nevertheless still do have XMRV.

This would only be logical. If 3-4% of the general population has XMRV, and if it causes autism, prostate cancer, and a range of other conditions, then isn't it likely that many of those who are less sick merely have a different expression of the same condition? And wouldn't we expect from the figure of 3-4% that many more people have been made ill from the condition than those with severe CFS?

So I hope and believe that it will turn out we are all XMRV+. And isn't that the biggest statement of all about our current condition and status, that when the news comes along that we may be infected with an incurable retrovirus, we weep with joy?! When we realise that we are praying we will be diagnosed with an AIDS-like condition, we also realise afresh just how desperate our current situation is.

What a betrayal it would be, if a subset of us have the XMRV lifeline snatched away, only to enter a fresh horror as the XMRV+ people too turn their backs on us, and even blame us for delaying the discovery of XMRV by 'malingering' with our psychological condition?! Imagine there's another retrovirus out there, or another XMRV variant that the tests don't detect - and that those who have this variant are now in an even WORSE position as they are identified as the REAL group of people deserving of the attentions of the CBT/GET mob.

No: we must not let it happen. We must stand together, whether it turns out that we have XMRV or not, and we must say: enough of treating people like this whenever you can't figure out what's wrong with them. If we betray those left behind, we will be as guilty as those who have wronged us.

 

[Kati]

Mark I am in the same boat as you do. I have not been formally diagnosed as CFS as of yet- for the lack of willingness to research the disease from my family doctor- and waiting for a so- said specialist appointment- not a CFS specialist, but a rheumatologist.

I have a bunch of symptoms that don't make sense to anybody, including my closest friends, and my doctor- I have been unable to work, I have been accused of malingering by my workplace superiors, and by the disability insurance company. Essentially I am being treated as a criminal unless proven otherwise- and at the moment we are all being hopeful that we test positive for XMRV, because then we'd have proof wouldn't we?

I have the fantasy in my head to go to my dr with my XMRV results and asking to be sent to the very same infectious disease dr that didn't want to see be as she didn't treat CFS. I don't think it will be as simple as that. I suspect that even HIV dr won't want to take care of us in town- since they have enough work with our drug user and homeless community- amongst their population of patient. It will take a while before XMRV becomes legit and recognized- IT's the third time I mentioned XMRV to my family dr and she had me repeat what I said. It doesn't register.

I certainly hope that we all remain united- and dismantle the CDC CFS program as it is. I have hope that someone can make sense of this disability- and all other invisible disability. On certain days like today, I find it hard to carry and keep the hope flame in my eyes.

Thank you for bringing the topic. You are not alone.

 

[gracenote]

Thank you Mark for your very reasoned post. I do have a question, though, about what you mean about the 3-4%.

If 3-4% of the general population has XMRV, and if it causes autism, prostate cancer, and a range of other conditions, then isn't it likely that many of those who are less sick merely have a different expression of the same condition? And wouldn't we expect from the figure of 3-4% that many more people have been made ill from the condition than those with severe CFS?

If I remember the Science study correctly, these 3-4% who also tested positive were HEALTHY controls having no diagnosed conditions at all. The ones with autism and fibro and atypical MS that were tested wouldn't have been in this control group.

I think what we know is that in the original Science study they chose the sickest patients. But after the study was submitted they continued testing patients with CFS who I don't think were the sickest ones anymore and found close to 100% had XMRV, as did some patients with autism, atypical MS and fibro. I think we will find a lot of non CFSers joining our CFS community or ZAND land.

I will be interested in the Reeves cohorts being tested and see what percentage of them will be positive and what will need to happen for the care of the others.

I think Rich van K says something in one of his papers about not leaving any PWC behind. That would be a great commitment for all of us to make.

 

[Mark]

Thanks to you both for reassuring me that there's a committment out there to "not leave any PWC behind" - that sums up what I wanted to say.

Gracenote, your point about the 3-4% referring to HEALTHY controls has really got me thinking. For some reason, I have assumed that this 3-4% figure is in practice a RANDOM group rather than a HEALTHY group. Which of the two is true would be crucial to any theorising about the epidemiology of XMRV.

Including myself, I know 4 people in the UK who have CFS - but none of us have been officially diagnosed with anything. Two of us have been diagnosed (privately of course) with MCS, one (vaguely) with IBS, and 2 of us don't even waste time and effort going to see doctors any more. In other words: ALL the PWCs I know are NOT diagnosed with anything - we are all supposedly healthy. In the UK, once you know what's what, you tend to steer cleer of doctors! This leaves me to suspect that the true number of people with CFS is much, much higher than the UK estimate of 250,000. It also seems to me that CFS may be a 'spectrum disorder' ranging from very severe symptoms to much milder cases - perhaps depending on what co-infections are present, or on genetic and lifestyle factors etc. Perhaps if one were a really lazy couch-potato kind of person with XMRV and few co-infections, one wouldn't even think of oneself as being ill.

So: it depends very much on what they mean by "healthy" controls? What does "healthy" mean? According to the NHS I am "healthy" - that's precisely the problem we have all faced after all! Did the WPI explicitly exclude from the "healthy" group people who may fit the CDC criteria for CFS, but not the WPI criteria?

I think it's been stated that the WPI controls were selected from the same geographical areas as the CFS cohorts, but were not personal contacts of the CFS cohorts. That's the only info I've seen about the "healthy" group. But if they are stated to be "healthy", does that mean they have been thoroughly assessed to ensure they don't have any health issues at all? I would have thought that a very high proportion of the general population have some sort of health issues - surely most people have something to mention - so this would be a tricky screening process to define. And this "healthy" group would be a rather unusual bunch if none of them ever get headaches or colds, or feel tired in the mornings...

So the crucial question: were the controls carefully worked to ensure they are HEALTHY, or are they merely a RANDOM selection of the general population? The implications of the answer to that would be deep.

If they are RANDOM, as I have been assuming so far, that would mean that 3-4% may be a true measure of the number of people with CFS-spectrum conditions, XMRV-induced-autism-spectrum, XMRV-induced-cancers etc. A proportion of those would not be expressing any symptoms yet as their infection is latent, and that proportion of latent XMRV infection would be related to the average latency period of XMRV, and thus to the length of time between our original infection and the onset of symptoms.

But if they really are HEALTHY, then that suggests a very different story of the epidemiology. It would mean that if you included all the non-healthy people who have XMRV causing their rheumatism, cancer, alzheimer's, autism, etc, and if that turns out to be a large proportion of those conditions, then maybe far more than 3-4% of the general population are infected. 10%? 20%? Further, if those 3-4% really are healthy, then it would imply that only about 10-20% of the people infected with XMRV have so far developed CFS.

That in turn raises the question as to whether another, rare, co-factor is required to trigger CFS (in which case we still have a long way to go to figure out those other triggers - they may be other unknown retroviruses for example), or whether XMRV takes many years, decades, or even generations to develop into CFS - in which case the 3-4% represent a pandemic-in-waiting. That kind of picture would seem to me to suggest a model where XMRV first evolved in the mid-20th century, we all got sick 20 years ago after acquiring XMRV a decade or two earlier, XMRV is really quite infectious, and we have been infecting the rest of the population ever since, such that 3-4% of them are now on the threshold of CFS!

So thanks Gracenote, your post has really challenged my assumptions and my mind's boggling right now over the implications if the 3-4% really are totally healthy.

Can anybody think through the implications of these two alternatives better than my top-of-the-head thoughts above? And does anybody have any more information - or informed guesses - as to what "healthy controls" really means?

 

[dannybex]

Mi Mark...

And does anybody have any more information - or informed guesses - as to what "healthy controls" really means?

Hi Mark,

I share your concerns as well.

As for the healthy controls, Levi, who attended the presentation by Mikovits had this to report:

"She said, "the patients compounded the controls" in these areas particularly Reno, so controls where selected from areas as far away as Maryland, which has a low incidence of XMRV. So she was considering the epidemiology of XMRV when she said that. Follow up studies by epidemiologists will be fascinating."

Here's that thread:

http://forums.aboutmecfs.org/showthread.php?t=716&highlight=Maryland&page=4

Plus, on another thread Joey, who was seeing Dr. Peterson, said he said that his test samples (from the sickest patients) came back at 90%, while others came back at about 60%. And these were all patients that met the same criteria for CFS/ME.

What concerns me is that other factors, that are different in every patient, like environmental exposures to chemicals, pesticides, heavy metals, mold, etc., don't seem to be mentioned in any of the articles (except Cheney's perhaps, who did mention mercury), yet they are clearly a factor in many patients. They also don't mention other co-morbid infections.

I do believe that again, Joey (or maybe Cort?) reported that Peterson thinks that something else -- immune dysfunction -- opens the door for XMRV -- and not the other way around. I'll try and find that post...

Best regards,

Dan

 

[Eric Johnson from I&I]

Mark, healthy does mean healthy, not random. However, I'm not quite sure what the definition is and I doubt it excludes those with minor ailments. Certainly some of those XMRV+ healthies might have mild depression. But there's no reason to strongly suspect this. Plenty of microbe species make essentially zero measurable difference in most individual human hosts.

Even if some of them do have mild depression, or lower incomes than XMRV- people, it would be hard to rule out the possibility that mild depression changed their behavior enough to increase their odds of getting XMRV. Thats part of why they say correlation isnt causation. But as the infection rate approaches very near 100%, as is now claimed in the case of CFS, the plausibility of it being non-causal start to fall.

 

[Mark]

Thanks very much for your clarifications everyone. Sounds like healthy really does (roughly speaking) mean healthy...

Eric's point about the near-100% correlation is very important. While it doesn't of course prove that XMRV is the sole causal factor, it makes it very likely that XMRV is at the least one of a number of necessary causal factors. I think the least one can say for certain is: "The illness that the WPI are studying has XMRV infection as an essential prerequisite for acquiring the condition".

If we assume that the 3-4% XMRV+ in the general population really are healthy, then I only see two possibilities: either (a) all those people are going to get CFS eventually, or (b) another co-factor is required for the development of CFS. I recall from the WPI presentation at CFSAC that "there definitely have to be co-factors", so I'm going to go with that as the most likely of these two possibilities.

I'm only guessing, but the best candidate for a co-factor would seem to me to be an episode of extreme stress (including major viral infection) that triggers the XMRV to spread within an infected person in a way that couldn't otherwise happen. I say that because most of us seem to date our onset to an episode of extreme stress, often starting with a serious infection, and also because there is all this evidence linking stressful episodes to CFS - the evidence so beloved by the psychologists. I can easily believe that most people go through their whole lives without ever experiencing the sort of stress that triggered my own long-term illness!

That story would seem consistent with all the known facts. It would mean that the evidence linking stress to CFS is the other piece of the puzzle: to get CFS you need XMRV plus extreme stress.

One more thought though, pointing in a different direction. The link with autism really set me thinking, because the apparently epidemic rise in autism, particularly in specific areas of the US, is a big story that has reached UK TV. XMRV offers an explanation for that, but also makes one wonder what else XMRV can explain, and the first thing I then think of is the huge rise in allergies. Could there be a link with that huge rise? At first glance, clearly not, because XMRV infection at 3-4% can't explain allergy levels rapidly approaching 50% in the general population. But the XMRV revelation does make me wonder, by analogy, whether the rise in allergies is also caused by another infectious agent (maybe another retrovirus), and if so, then maybe that second infectious agent is the co-factor for CFS...

 

[Advocate]

I'm only guessing, but the best candidate for a co-factor would seem to me to be an episode of extreme stress (including major viral infection) that triggers the XMRV to spread within an infected person in a way that couldn't otherwise happen.

In AIDS, the time of probable infection with the HIV retrovirus was often known. In AIDS it took about 18 months from the time of initial infection to the appearance of symptoms. I've read nothing that suggests that the time period was altered by stress, one way or the other, or that stress was a co-factor or that it triggered the HIV to spread within an infected person.

Early on, if you had AIDS you were going to die from the
destruction of the immune system that allowed co-infections to overwhelm.

 

[Advocate]

It seems many people are not aware the WPI de-bunked the German Study that didn't find XMRV.

x

Here's what Dr. Silverman said about the German study in the Cleveland Plain Dealer interview:

It is not atypical of science for different groups to get different results.

There could be methodological differences. I believe our methods were more sensitive. They may have missed it.

Or it could be a different strain.

Another interpretation is that the virus is more prevalent in the United States than in Germany.

 

[Mark]

In AIDS...I've read nothing that suggests that the time period was altered by stress, one way or the other, or that stress was a co-factor or that it triggered the HIV to spread within an infected person.

But does HIV replicate in the presence of cortisone, cytokines and hormones, as XMRV does?

I get the impression that part of the reason the WPI are so confident that XMRV is the key to CFS, is because these three triggers are so consistent with the CFS experience: we relapse after episodes of high stress or inflammation (including after exercise/exertion), and the onset of our illness happened at a time of extreme stress.

 

[dannybex]

In AIDS, the time of probable infection with the HIV retrovirus was often known. In AIDS it took about 18 months from the time of initial infection to the appearance of symptoms. I've read nothing that suggests that the time period was altered by stress, one way or the other, or that stress was a co-factor or that it triggered the HIV to spread within an infected person.

Early on, if you had AIDS you were going to die from the
destruction of the immune system that allowed co-infections to overwhelm.

XMRV is not HIV -- they have said this repeatedly. Mikovits has also said that one of the things that turns on XMRV is stress hormones.

I take 'stress' or 'stressors' to mean other things too, like environmental stressors, chemical exposures, molds, auto accidents...in addition to long-term extreme physical and/or mental/emotional stress.

just my two cents,

d.