German study finds xmrv

[awol]

I think that the link between crimson crescents and mitochondrial dysfunction could be relevant.

I don't know this link. Can you explain a bit?

 

[Countrygirl]

=awol;83711]I don't know this link. Can you explain a bit?

I second that, please Gerwyn.

I have only one crimson crescent, not two, so does that leave me in no-man's-land again? :tear:

 

[HopingSince88]

I third that, Gerwyn.

And whilst we are awaiting to hear from him...go to the red crescent poll and lodge your vote on whether you have red crescents:

http://www.forums.aboutmecfs.org/showthread.php?5118-Do-you-have-crimson-crescents

 

[Adam]

I'm they didn't want to find it . My guess is that the followup studies are taking so long because they're being more careful and comprehensive. Dr. Mikovits said her technique takes longer...(altho not this much longer!). Anyway, it appears the 'quickie studies' are over......now the more definitive studies will be coming out.

We know the WPI is engaged in a replicative study and I believe the CAA/Glaxo Smith Kline study is. The Light/Bateman/Singh study is apparently using really powerful technology from one of the experts in the field - so we can trust that one as well. Dr. Bell appears to be doing a followup pediatric study with Dr. Ruscetti at the NCI - plus there's the DHHS study that Dr. Mikovits is involved in and watching closely - so we can look forward to at least five, it appears, strong studies using or closely emulating the WPI's techniques coming out. Dr. Klimas appears to be involved in a study as well.

So we have lots to look forward to. This will not be a replay of the DeFreitas retrovirus scenario.

Thanks for summarising the situation with regards the upcoming studies Cort. Yes, I think you are right; this will not be DeFreitas II.

 

[alex3619]

Hi natasa778,

I think this arguement is very relevant. I vaguely recall that XMRV was discovered in CFS (or prostate cancer, I don't recall) only because it was on a virochip that had all known mammalian viruses. Given how hard XMRV is to find, it is entirely possible that other viruses are present, particularly if they resember XMRV in having low copy number and are from species in which the prototypical virus has yet to be characterized. Maybe there is an entire family of viruses, who knows? The bulk of the evidence does point to XMRV as the culprit for those with CCD CFS.

(Question: why call it CCD CFS and not CCC CFS? Other places are using Criteria rather than dDefinition. Can someone enlighten me please?)

Bye
Alex

There could be other (gamma)retroviruses around that are not even 'discovered' yet...

then there is deFreitas virus, various other jump-species ones like avian leukosis viruse/s etc etc the list is endless... if xmrv is confirmed as etiological in cfs or any other disease, then really anything else, any other virus capable of similar biological effects should be a suspect in those who are xmrv negative.

 

[alex3619]

Tissue replication rates of XMRV

Hi Dr. Yes,

this is a very very good question. I have long been bugged by the issue that some of the CFS pathophysiology seems to be tissue specific, and this is a feature of the Peroxynitrite Hypothesis as well. I know the gut has a very active immune system and this would have an impact - if we could get blood from the portal vein (not something I would be happy about) it might show up more virus. The lungs and upper respiratory tract would be my next pick for high immune activity. However I think that a lymph node biopsy would be the most likely place to find the virus, even more than lungs or gut - this is where the virus appears to infect first, and contains large numbers of immune cells. As a first pass test, the easiest one to do for mass screen would be a simple mouth swab, so it will be important to determine if testing the respiratory tract etc would be more accurate as a public health measure. Would anyone like to comment?

Bye
Alex

Hey G that last thought of yours just killed Larry, Curly AND Moe for the night. They gobbed out one last round of speculation before they died: How many total cells are in the kinds of samples used in the German study.. if not as many as there are white blood cells in the blood volumes used by WPI, then does that mean the virus really is more concentrated in respiratory tissue? Building on that speculation... Do the mucosa-associated lymphoid cells in the respiratory tract have to replicate faster than white blood cells? If so, would that explain the relatively lower concentrations of XMRV in the blood?

 

[alex3619]

Hi Gerwyn

I don't know about tissues samples of these patients, but every one of them must have been immune typed. If their immune typing could be studied it might tell us something about the immune differences between those with XMRV and those without - it might be a way to fasttrack research into finding genetic predispositions.

Bye
Alex

I think that the link between crimson crescents and mitochondrial dysfunction could be relevant.This is linked to hepatotoxicity and of course M.E. It could be related to prexisting XMRV and hypothetically explain the higher XMRV levels in this group

I wonder if there is any samples from the patients pre transplant

 

[Gerwyn]

Hi Gerwyn

I don't know about tissues samples of these patients, but every one of them must have been immune typed. If their immune typing could be studied it might tell us something about the immune differences between those with XMRV and those without - it might be a way to fasttrack research into finding genetic predispositions.

Bye
Alex

That is an EXTREMELY good point

 

[RustyJ]

I second that, please Gerwyn.

I have only one crimson crescent, not two, so does that leave me in no-man's-land again? :tear:

Bit off the subject, sorry. I can't be bothered checking to see if I have crescents, however I did start a thread in "Symptoms" the other day about symptoms appearing mostly on one side of the body... things like swollen lymph nodes, painful swollen joints etc. There also seems to be some correlation between right handed and left handed people and on which side of the body some of the symptoms appear. No one seems to have adequately explained this. Perhaps its brain-related.

 

[Cort]

This was my guess on the German study and opportunistic viruses

http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx

ME/CFS? - What does this say about CFS? It’s hard to tell. We’ve always known that XMRV could be an ‘opportunistic virus’; one that does not cause ME/CFS but exploits the damage that has already occurred - which appears to be what happened in these immunocompromised patients. Indeed, if you were going to find an infectious retrovirus anywhere you'd probably find it in these transplant patients because the drugs they take turn down the immune response causing them sometimes to collect pathogens.

Some would say the same type of process occurs in ME/CFS but not everybody thinks the amount of immune dysfunction found in CFS is particularly significant. Some researchers certainly do but others characterize it as ‘mild immune dysfunction’. It would be very instructive to compare the degree of immune dysfunction in these two sets of patients. Is it six or seven times higher in ME/CFS patients than in transplant patients? Is that why its present in 6 to 10 times more ME/CFS patients?

I wouldn't think so. If not, then why is it apparently showing up in such a large percentage of CFS patients and in such smaller percentages in patients the medical profession in general really does consider immunocompromised?

An opportunistic virus wouldn't do that. A virus that somehow targeted CFS patients would however. My guess is that XMRV is still a special problem for CFS patients and that it just happens to be in immune compromised patients (along with whatever other pathogens they have) - as well; ie the theory that XMRV could cause ME/CFS is still alive and well.

My takeaway from this study is that, unless this lab made a big error somewhere, the WPI’s finding of XMRV is considerably strengthened and this study is a big and much needed win for them. It shows that XMRV is present, puts into question the findings of the three negative studies, and puts the onus on other researchers to find it. The fact that these researchers did not use the WPI’s techniques to find the virus further strengthens the overall XMRV finding

 

[Revday]

If this has already been posted my apologizes.

These two statements are in the CDC post of the research. http://www.cdc.gov/eid/content/16/6/1000.htm
The CDC web site has place to email the authors with comments. I think it might be important that others respond to these misleading statements. These statements show bias or an unacceptable ignorance. Either way these statements could be seen as poor practice. They also echo a past CDC director's inclination about XMRV and CFS. So I can imagine why the CDC might rush to put the research on their site.

RE:Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract

1. "Recent findings of XMRV sequences in up to 67% of peripheral blood mononuclear cells (PBMCs) of patients with chronic fatigue syndrome and in 3.4% of PBMCs of healthy controls raise the question whether XMRV could be a blood-borne pathogen (5). However, the finding of XMRV in PBMCs from patients with chronic fatigue syndrome is controversial because multiple studies in Europe have failed to detect XMRV (6–8)."

2. "...and XMRV-specific sequences were detected in PBMCs of 67% patients with chronic fatigue syndrome (5). These results, however, could not be confirmed by others (6–8). Both studies also detected XMRV protein or sequences in their control cohorts with frequencies of 6% and 4%, respectively."

 

[awol]

If this has already been posted my apologizes.

These two statements are in the CDC post of the research. http://www.cdc.gov/eid/content/16/6/1000.htm
The CDC web site has place to email the authors with comments. I think it might be important that others respond to these misleading statements. These statements show bias or an unacceptable ignorance. Either way these statements could be seen as poor practice. They also echo a past CDC director's inclination about XMRV and CFS. So I can imagine why the CDC might rush to put the research on their site.

RE:Xenotropic Murine Leukemia Virus–related Gammaretrovirus in Respiratory Tract

1. "Recent findings of XMRV sequences in up to 67% of peripheral blood mononuclear cells (PBMCs) of patients with chronic fatigue syndrome and in 3.4% of PBMCs of healthy controls raise the question whether XMRV could be a blood-borne pathogen (5). However, the finding of XMRV in PBMCs from patients with chronic fatigue syndrome is controversial because multiple studies in Europe have failed to detect XMRV (6–8)."

2. "...and XMRV-specific sequences were detected in PBMCs of 67% patients with chronic fatigue syndrome (5). These results, however, could not be confirmed by others (6–8). Both studies also detected XMRV protein or sequences in their control cohorts with frequencies of 6% and 4%, respectively."

I don't think we need to worry about this too much. It is the truth. Until a confirming study comes out, there is and will be controversy over XMRV, and it is entirely true that several studies have failed to confirm. As soon as one or two respectable studies DOES confirm, we can then stop referring to the finding as controversial.

 

[Mithriel]

The fact that ME/CFS has been studied for decades with no single answer being found is often used as evidence by the psyches that it is a somatic syndrome. We have to admit it is a diffuse disease that even we, the patients, have trouble putting into words. The blood tests which are widely off in other illnesses are just a little bit out for us.

A retrovirus which is slow to replicate and difficult to find because there are such low numbers could cause a disease with exactly our profile.

Normal diseases are like having your house broken into and devastated; obvious, terrible, but with help you can recover and start over. XMRV is like a stalker where you come home and things are a out of place; others will doubt you, you might start to doubt yourself but the upset to your life will build and build till things could go very wrong.

XMRV might be acting within us by making this process a little bit inefficient and that process a bit over active but the result with be a body where nothing is going right. Our systems may be working full out to keep going at all and opportunistic microbes could easily take advantage.


Mithriel

 

[bullybeef]

How would you all perceive the ramifications should XMRV prove to be the worst case scenario? A virus that does, and always has had a high mortality rate, killing people in the guise of other co-infections (cancer, heart disease, etc). And it is highly infectious, and at some stage of its life cycle, it can be passed on via saliva. Would the media finally run with this story, pointing fingers at the likes of Wessely & Co, or will he get off scot free because he has the potential to blow the whistle on his employers whom instructed him to dispel the rumours? I have just discovered that Wessley also is involved in dispelling the mobile phone/cancer, and the MMR/autism links! Does he know too much, which may save him in the long run?

How do you see things in, say, twelve months time, when XMRV is proven to be the 'big one'?

 

[Sasha]

How would you all perceive the ramifications should XMRV prove to be the worst case scenario? A virus that does, and always has had a high mortality rate, killing people in the guise of other co-infections (cancer, heart disease, etc). And it is highly infectious, and at some stage of its life cycle, it can be passed on via saliva. Would the media finally run with this story, pointing fingers at the likes of Wessely & Co, or will he get off scot free because he has the potential to blow the whistle on his employers whom instructed him to dispel the rumours? I have just discovered that Wessley also is involved in dispelling the mobile phone/cancer, and the MMR/autism links! Does he know too much, which may save him in the long run?

How do you see things in, say, twelve months time, when XMRV is proven to be the 'big one'?

XMRV has only just been discovered in humans and I don't think we can say anything about its mortality rate - how can we possibly know? That would take prospective studies (i.e. identifying people with XMRV and following them forwards to find the mortality rate). Also, I don't think we know that it is highly infectious. If XMRV = ME/CFS then I think we can say its infection rate is very low otherwise all of us would have family & friends with it and at a population level that's not the case (I realise Phoenix Rising has members who have family members with it but we are a self-selected population - only the sickest and most afffected - including having family members with it - will come here). If it's been around for 30 years (as I've seen guessed) and the population level is still only 4% (as per the WPI controls) it seems to me it's v. low. We also don't know that it can be passed on by saliva (being found in saliva is a different matter from it being transmissible in saliva, as I understand it).

 

[bullybeef]

XMRV has only just been discovered in humans and I don't think we can say anything about its mortality rate - how can we possibly know? That would take prospective studies (i.e. identifying people with XMRV and following them forwards to find the mortality rate). Also, I don't think we know that it is highly infectious. If XMRV = ME/CFS then I think we can say its infection rate is very low otherwise all of us would have family & friends with it and at a population level that's not the case (I realise Phoenix Rising has members who have family members with it but we are a self-selected population - only the sickest and most afffected - including having family members with it - will come here). If it's been around for 30 years (as I've seen guessed) and the population level is still only 4% (as per the WPI controls) it seems to me it's v. low. We also don't know that it can be passed on by saliva (being found in saliva is a different matter from it being transmissible in saliva, as I understand it).

I don't wish to come across as over zealous, Sasha, but 4% isn't a low figure. HIV infection prevalence is around 0.5%, and that's considered an epidemic. Also overall prevalence within the general public (healthy and sick) is around 6%!! That would equate to over 400,000,000 people carrying XMRV!

 

[natasa778]

Sasha, the fact that xmrv levels are low in general population could have nothing to do with ease of transmission, but rather suceptibility to infection (like permissivness to entry...), and/or ability of host to fight it off....

 

[Sasha]

I don't wish to come across as over zealous, Sasha, but 4% isn't a low figure. HIV infection prevalence is around 0.5%, and that's considered an epidemic. Also overall prevalence within the general public (healthy and sick) is around 6%!! That would equate to over 400,000,000 people carrying XMRV!

Hi Bullybeef - I think part of the issue here may be what people might understand by "highly infectious". I guess I was a bit worried that people on the board might be frightened to think that they have something that can be passed on very, very easily to others. Terms like "epidemic" can also seem alarming but the definition is "The occurrence of more cases of a disease than would be expected in a community or region during a given time period. " HIV infection prevalence depends on where you live - in parts of Africa it's extremely high (eg 20% in South Africa in certain age groups I believe) but extremely low where people are well educated about it and take basic precautions. I don't think that we would say that we now had an HIV epidemic in the UK, for example.

I'm not saying that 4% of the population is a low figure in terms of the number of people (in millions) affected; I agree it isn't. I meant that the fact that it is 4% and not, say, 40% when those of us who might be XMRV+ have been coughing on people etc. for decades without knowing about protecting people suggests to me that it isn't easily passed on.

Any epidemiologists care to comment? I think that this is a potentially quite alarming issue for many on the board and I certainly don't have the background to make authoritative pronouncements! I may easily have missed some important piece of information or interpretation that someone has posted. It's just my impression that XMRV must be hard to pass on casually, for the reasons I've mentioned.

 

[awol]

I'm not saying that 4% of the population is a low figure in terms of the number of people (in millions) affected; I agree it isn't. I meant that the fact that it is 4% and not, say, 40% when those of us who might be XMRV+ have been coughing on people etc. for decades without knowing about protecting people suggests to me that it isn't easily passed on.

I agree Sasha

 

[bullybeef]

I understand, Sasha, I am certainly not qualified to know in the specifics. I was just interested to hear how members would consider the worst case scenarios could be, and how the media, and such, would announce this.