German study finds xmrv
- Thread starter bel canto
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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:
I have only one crimson crescent, not two, so does that leave me in no-man's-land again? :tear:
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
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
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.
. 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.
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
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
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
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
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 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
G
That is an EXTREMELY good point
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:
I have only one crimson crescent, not two, so does that leave me in no-man's-land again? :tear:
This was my guess on the German study and opportunistic viruses
http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx
http://www.aboutmecfs.org/Rsrch/XMRVBuzz.aspx
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."
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.
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
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
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'?
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).
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.
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.
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.