On Radio ABC last night. Interview on XMRV/CFS with Dr Lloyd and Dr Lewis

taniaaust1

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I didnt hear the following but my boyfriend just has emailed me about it as he was listening to the radio when this came on.

MARK COLVIN: American scientists have found a link between a mouse leukaemia virus and the debilitating condition called chronic fatigue syndrome. The team of researchers from the National Institute of Health found the mouse retrovirus in 86 per cent of a group of chronic fatigue patients.

It's the second time that a mouse virus has been found in the blood samples of sufferers. But experts remain sceptical as scientists were unable to replicate the first discovery until now.

Jennifer Macey reports.

JENNIFER MACEY: Chronic fatigue sufferers say the condition is not just mere fatigue. It's more like bone-aching exhaustion.

SUSAN RIDGE: Tired is about a 2,000 billion understatement. (Laughs) If you can think about total and utter exhaustion then you're getting close. It should probably be called chronic exhaustion syndrome.

JENNIFER MACEY: Susan Ridge is a 55-year-old mother of three who came down with chronic fatigue nine years ago after a severe bout of the flu. She gave up a high-level job and is now the secretary of the ME/CFS Society, a support group for chronic fatigue sufferers.

SUSAN RIDGE: I never really recovered from the virus itself. And I felt nauseated all the time. And I felt exhausted when I woke up in the morning.

It was really embarrassing because I had quite a high-level job in the public service. I was you know having to run meetings for the heads of departments and things like that. And I just couldn't remember one word to the next. It was just dreadful trying to cope with no brain, no memory and feeling sick all day, every day.

So it was just a really horrible, devastating thing to happen because I was a keen sportswoman. You know I played tennis and softball and baseball and skied and you know lots of things. And then suddenly I couldn't do any of it.

JENNIFER MACEY: Now researchers in the US have discovered another link between a type of mouse virus and chronic fatigue syndrome.

The study is published in the Proceedings of the National Academy of Sciences. The scientists show evidence of the murine leukaemia viruses which causes cancer in mice in 86 per cent of chronic fatigue sufferers.

Professor Andrew Lloyd from the University of New South Wales says it's an interesting development.

ANDREW LLOYD: They've found genetic sequences of the mouse leukaemia-related virus. Actually they've found a series of somewhat different sequences. So they weren't, this was not identification of a single uniform genetic sequence of a single virus. It was more detection of a genetic sequences of a closely related family of viruses.

JENNIFER MACEY: It's the second time in a year that scientists have identified mouse-related retroviruses in the blood samples of chronic fatigue patients. But the first study which found a different type of mouse virus could not be replicated in follow-up studies.

Professor Lloyd was a part of a team of researchers in Australia that first found a link between chronic fatigue and the Epstein-Barr virus which causes glandular fever and the Ross River virus.

ANDREW LLOYD: Is it plausible? One question is: is it plausible that this is really the answer to all chronic fatigue syndrome?

My feeling about that is that it's incredibly unlikely that that's the case because you'd have to propose that the Epstein-Barr virus infection that we've documented for instance is somehow not relevant to causing the illness when it's so clearly chronologically linked.

So at best you have to propose that MLV might either be the causative agent in a very small subset of patients or that it acts in some way as a kind of a co-factor, that you have two insults that somehow give rise to the illness overall. And there's some plausibility in that latter idea.

JENNIFER MACEY: But other chronic fatigue experts say the problem starts before the virus is contracted.

Dr Don Lewis a GP in Victoria who treats sufferers says people with genetic food allergies have a compromised immune system which makes them more susceptible to these viruses and chronic fatigue.

DON LEWIS: If you, if one uncovers in fact these predisposing conditions such as the immune imbalance and the genetic food intolerances, if those are uncovered then it is very likely that by paying attention to those dietary adjustments that there will be a significant improvement and lessening in the symptom profile that a person has.

JENNIFER MACEY: Meanwhile chronic fatigue sufferer Susan Ridge says any new research into the mysterious condition is welcome.

SUE RIDGE: Back in the older days, and there's still some doctors who believe that people with chronic fatigue syndrome, they've got the yuppie flu and they're just malingerers. They don't want to work.

It's just so wonderful that someone is actually doing some research into what makes us sick and keeps us sick for so long.

JENNIFER MACEY: She's calling for the government to provide more support for research and to help distribute information to doctors to investigate possible viruses that may be lingering in chronic fatigue patients.

MARK COLVIN: Jennifer Macey.

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Read the PNAS article: Mouse retroviruses and chronic fatigue syndrome: Does X (or P) mark the spot? [link]
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RustyJ

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I am also disturbed with the fact that medical professionals are seeking to obscure the point that MLVs are retroviruses, with a history of doing exactly what is happening in CFS. Why is Lloyd pushing EBV as a cause ahead of XMRV? Doesn't make sense, even if he couldn't find it.
 

Megan

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My understanding is that Lloyd did not go ahead with his study because he knew in advance that he CDC study had been negative. So he was not hiding anything, he was not involved in a negative XMRV study, his study just got cancelled before it happened. I corresponded directly with him on this issue in March and that's what he told me. Unless something has changed since then, which I doubt.

He made sceptical comments about XMRV when the Science paper originally came out. I don't understand why he has been quite so negative about it. Though I think I saw somewhere (cant remember where now) that the CDC had negative results even before the Science paper was published. If he had access to that information at the time, which I expect he did, then that may have colored his view. He seems to have shifted a little in the above interview.

The cofactor issue is an important one. If people who got CFS after EBV have the retrovirus then they need to explain how EBV is a co factor in triggering XMRV/HGRV. But the WPI have been upfront since day 1 that there must be co factors involved so I dont see that as being in conflict with what Lloyd says.

But it is dissapointing to see him use the EBV issue as questioning the MLV causation link. A bit bizzare considering his orginal study found that EBV viral load did not correlate with CFS. Obviously another cofactor such as HGRV operating here would be a good explanation.
 

RustyJ

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The cofactor issue is an important one. If people who got CFS after EBV have the retrovirus then they need to explain how EBV is a co factor in triggering XMRV/HGRV. But the WPI have been upfront since day 1 that there must be co factors involved so I dont see that as being in conflict with what Lloyd says
Hi Megan, I think the point Lloyd is dodging is that there is considerably more science to support the case of a retrovirus causing long-term CFS-like symptoms, than there is EBV. In other words you can get CFS with HGRV + EBV, or CFS with HGRV + CMV, or CFS with HGRV + HHV6, CFS with HGRV + mycoplasma, but there is no research to support a mechanism for CFS with just EBV. In other words, you don't need EBV to get CFS, but you do need HGRV.

As far as I know noone has said that co-infections are not an important, nor irrelevant. However it is usually the case that there are up to 30 different co-infections in any one CFS patient being triggered by HGRVs at any one time. And those are the ones we know about.


Dr Lloyd says:
My feeling about that is that it's incredibly unlikely that that's the case because you'd have to propose that the Epstein-Barr virus infection that we've documented for instance is somehow not relevant to causing the illness when it's so clearly chronologically linked.
 

Megan

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Rusty,

I agree with what you are saying, it makes sense that XMRV/HGRV is the common factor with others being the cofactors. He was unfair to imply that anyone is claiming that MLV is the cause without there being cofactors in play as WPI have always said that.

On EBV, I understand his studies have shown that EBV is only one of several illnesses that could be the triggering factors for CFS but that he doesn't see EBV infection as a cause.

The one positive thing I noted (which I admit is hard to find) is that he has, albeit reluctantly, said the following:
So at best you have to propose that MLV might either be the causative agent in a very small subset of patients or that it acts in some way as a kind of a co-factor, that you have two insults that somehow give rise to the illness overall. And there's some plausibility in that latter idea.
Here I have heard him say for the first time that the 'latter idea' (that we all know is really WPI's first idea!) is plausible. This is a significant admission from someone who was previously almost in denial about the existence of XMRV. He wasn't trying to argue that they are just picking up comtamination or endogenous retroviruses like he has previously.
 

RustyJ

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Rusty,

I agree with what you are saying, it makes sense that XMRV/HGRV is the common factor with others being the cofactors. He was unfair to imply that anyone is claiming that MLV is the cause without there being cofactors in play as WPI have always said that.

On EBV, I understand his studies have shown that EBV is only one of several illnesses that could be the triggering factors for CFS but that he doesn't see EBV infection as a cause.

The one positive thing I noted (which I admit is hard to find) is that he has, albeit reluctantly, said the following:


Here I have heard him say for the first time that the 'latter idea' (that we all know is really WPI's first idea!) is plausible. This is a significant admission from someone who was previously almost in denial about the existence of XMRV. He wasn't trying to argue that they are just picking up comtamination or endogenous retroviruses like he has previously.
Good point, Megan. I still don't like how he said it. He had a good opportunity here to open up the debate on XMRV (a whole new, exciting world of possibilities), yet seemed more than anxious to push EBV. Makes me think he still has a strong anti-XMRV angle - probably doing work around EBV. I suspect he has taken this small step towards acknowledging XMRV only because the evidence is mounting and he doesn't want to paint himself into a corner. I concede, even if for the wrong reason, that small step is good news, as you point out.

Scratch an anti XMRV spokesperson and you usually get someone with their own barrow to push. Most of those who appear to be against XMRV usually have something to lose if XMRV bears out. Mind you, the reverse can be said - I am pushing XMRV because it removes the psychiatric stigma.
 
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Hi Megan, I think the point Lloyd is dodging is that there is considerably more science to support the case of a retrovirus causing long-term CFS-like symptoms, than there is EBV. In other words you can get CFS with HGRV + EBV, or CFS with HGRV + CMV, or CFS with HGRV + HHV6, CFS with HGRV + mycoplasma, but there is no research to support a mechanism for CFS with just EBV. In other words, you don't need EBV to get CFS, but you do need HGRV
Could it be possible they mistook XMRV as EBV since some scientists think XMRV replicates in the lymph nodes and causes them to swell?
 

RustyJ

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Could it be possible they mistook XMRV as EBV since some scientists think XMRV replicates in the lymph nodes and causes them to swell?
Not exactly sure of everything in your question Mya. A lot of viruses cause inflamed lymph nodes, whether they replicate there or not. As far as I know inflamed lymph nodes by themselves is not a defining symptom of any virus. There have been quite a few studies showing active EBV in groups of CFS patients, but like just about every other virus, the consensus seems to be that EBV is a co-infection. There is very little research showing otherwise. However it is possible some studies on EBV's link to CFS are still proceeding. And in the absence of causative proof for XMRV, then EBV is probably a good place to look. I might add though that probably 90% of the general population would have had EBV at some stage of their lives, so if EBV is the culprit, it is not doing it by itself.
 

taniaaust1

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My understanding is that Lloyd did not go ahead with his study because he knew in advance that he CDC study had been negative. So he was not hiding anything, he was not involved in a negative XMRV study, his study just got cancelled before it happened. I corresponded directly with him on this issue in March and that's what he told me. Unless something has changed since then, which I doubt.
thank you for clearing that up.. i'll edit my post. Thanks
 

Megan

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Could it be possible they mistook XMRV as EBV since some scientists think XMRV replicates in the lymph nodes and causes them to swell?
I don't think they got mixed up because they blood tested the people they studied for EBV at the time. I was also a post EBV case myself and had blood tests at the time to show thats what I had.

But there is another interesting scenario. One of Lloyd's findings was that people who had the most severe acute EBV symptoms were more likely to get CFS even though their viral load (amount of virus in the blood) was the same as everyone elses. It could be that people who already have a MLV virus are more likely to get severe symptoms of EBV. Most people get antibodies to EBV (exposure) without getting glandular fever at all, or only getting very mild symptoms, and I dont think the medical profession have any idea why some people get symptoms and others dont.
 

taniaaust1

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One of Lloyd's findings was that people who had the most severe acute EBV symptoms were more likely to get CFS even though their viral load (amount of virus in the blood) was the same as everyone elses.
Interesting thought. i had severe mono .. i think the XMRV i had may of been laying dormant at that time.. and dormant for many years after the mono too. im suspecting that for a very long time that i may of been one of those people who are positive to it who dont show symptoms. (till something weakened in my body more with a lot of stress).

All those unsick XMRV postives.. are probably ticking time bombs, awaiting for the right trigger
 

RustyJ

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Interesting thought. i had severe mono .. i think the XMRV i had may of been laying dormant at that time.. and dormant for many years after the mono too. im suspecting that for a very long time that i may of been one of those people who are positive to it who dont show symptoms. (till something weakened in my body more with a lot of stress).
Pretty much the same story with me. Only I am fairly certain that there were irregularities in my health since childhood that could be attributed to XMRV. I now believe I've XMRV since birth or early childhood, with acute onset in my thirties.

There is one point of disparity. At acute onset, tests showed mono, but a researcher also found something he later called cryptovirus (a human variant of PIV-5) active in my spinal fluid. So it could be possible that I had more than one virus flaring at the same time. If there were two viruses flaring, why not three or four?
 

taniaaust1

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Pretty much the same story with me. Only I am fairly certain that there were irregularities in my health since childhood that could be attributed to XMRV. I now believe I've XMRV since birth or early childhood, with acute onset in my thirties.

There is one point of disparity. At acute onset, tests showed mono, but a researcher also found something he later called cryptovirus (a human variant of PIV-5) active in my spinal fluid. So it could be possible that I had more than one virus flaring at the same time. If there were two viruses flaring, why not three or four?
Yeah, it makes sense.. if the immune system is down.. all kinds of things could flare at once.
In my case i had a blood transfusion when i was 4 yrs old (tonsils removal which went wrong). IF i got it way back then, it must of laid in my body dormant for 21 yrs before i started to get the first major CFS crashes.
 

ukxmrv

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Lloyd openly worked against the theory of CFS being caused by an infectious agent. In Osler's Web it talks about a nurse who developed the disease after a needle stick injury. The nurse took a legal case against the needle manufacturer.

Llloyd acted for the manufacturer and was willing to be a legal expert and of the opinion that CFS was not infectious and so this could not occur. He was openly scathing of the retroviral theories of that time.
 

Francelle

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I'm so disappointed with these two doctors!

It's like they have their 'pet' approaches and do not want to deviate from their closely held theories. Why could not food intolerances be an expression in some M.E. people of being infected with a retrovirus? Why could not EBV be the cruncher in a person who is already infected with a latent retrovirus which then sets off the cascade of subsequent symptoms?

Also the interviewer kept saying 'chronic fatigue' and no-one picked her up on it....GRRR!
 

Tony

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Hi Francelle,

Dr Lewis has been my doc for 8 years now and as the research changes and we learn more so do his treatments. He isn't wedded to one idea at all. He is one of the few in this country involved in research for many years now. Either he wasn't given the opportunity to expand on what he thinks in that very brief interview or it was just edited out. He fully appreciates that there are viral and bacterial infections etc. What you're suggesting could be right, but it's just a possibility. I think that isn't what interviewers want, they want something as nailed down as they can get.
 

Tony

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Hi Francelle,

Dr Lewis has been my doc for 8 years now and as the research changes and we learn more so do his treatments. He isn't wedded to one idea at all. He is one of the few in this country involved in research for many years now. Either he wasn't given the opportunity to expand on what he thinks in that very brief interview or it was just edited out. He fully appreciates there are viral and bacterial infections etc.

What you're suggesting could be right, but it's just a possibility. I think that isn't what interviewers want; they want something as nailed down as they can get and with two different views it makes for a 'better' story.