This was published in the recent 'breakthrough' magazine from ME Research UK.
(Apologies if this has been posted already... I can't find it anywhere.)
(Apologies if this has been posted already... I can't find it anywhere.)
The Swedish Study
- Thread starter Bob
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Im not sure if the following issue has been mentioned before on the forum in relation to this study so apologies if this is old news.
I heard recently from a fellow sufferer that although work IS progressing on this project there has been some considerable delay. The team involved had to recover from an awful event in which the expert virologist employed to work on the study was killed in a car crash along with one of his sons.
:sad:
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A second virologist was apparently recruited and is working on the study however its unlikely the results will be in keeping with the original time frame of spring/summer 2010.
An important point to stress though is that this study very much IS being done in collaboration with international experts with proven methods capable of detecting XMRV in blood. It should therefore be a valid and well received paper when it finally arrives.
Its important i think to be understanding and respectful about the delay. They thankfully seem to realise the importance of getting the job done right as opposed to getting it done quick.
I heard recently from a fellow sufferer that although work IS progressing on this project there has been some considerable delay. The team involved had to recover from an awful event in which the expert virologist employed to work on the study was killed in a car crash along with one of his sons.
:sad:--------------------------------------------------------------------------------------------------------------------
A second virologist was apparently recruited and is working on the study however its unlikely the results will be in keeping with the original time frame of spring/summer 2010.
An important point to stress though is that this study very much IS being done in collaboration with international experts with proven methods capable of detecting XMRV in blood. It should therefore be a valid and well received paper when it finally arrives.
Its important i think to be understanding and respectful about the delay. They thankfully seem to realise the importance of getting the job done right as opposed to getting it done quick.
Oh Cookiemonster, I am so sorry to hear that about the car crash and losing a son as well.
so this is looking for it in blood, but didn't I read elsewhere it is very low in blood?
So are you saying they should be able to find it in blood since they are using the WPI methods?
Tina
So are you saying they should be able to find it in blood since they are using the WPI methods?
Tina
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Hi Tina - that is very much the same interpretation that i gathered from the info i was passed *nods head*.
Im not sure if the following issue has been mentioned before on the forum in relation to this study so apologies if this is old news.
I heard recently from a fellow sufferer that although work IS progressing on this project there has been some considerable delay. The team involved had to recover from an awful event in which the expert virologist employed to work on the study was killed in a car crash along with one of his sons. :sad:
I heard recently from a fellow sufferer that although work IS progressing on this project there has been some considerable delay. The team involved had to recover from an awful event in which the expert virologist employed to work on the study was killed in a car crash along with one of his sons.
:sad:
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It enforces a greater sense of perspective hearing information like this doesnt it Polly. Sadly it comes from a reliable source. :sad:
Yes, to back up what Cookie has said, I have also heard from a totally reliable source, that one of the original members of the research team has sadly died, so the research was postponed.
This is why we've heard nothing from the Swedish study this year.
But the article from 'breakthrough' magazine that I posted above is from the most recent magazine, and so it's up-to-date news, and so it looks like the project is now going ahead.
I didn't know the details of the death, and it's very sad news.
This is why we've heard nothing from the Swedish study this year.
But the article from 'breakthrough' magazine that I posted above is from the most recent magazine, and so it's up-to-date news, and so it looks like the project is now going ahead.
I didn't know the details of the death, and it's very sad news.
Is this the study that you guys are referring to that is funded by ME Reasearch UK?
http://www.meresearch.org.uk/research/projects/xmrvsweden.html
Independent confirmation of the relationship between XMRV and ME/CFS in Sweden
Investigators
Prof. Jonas Blomberg and Prof. Carl-Gerhard Gottfries
Institutions
Section of Clinical Virology, Uppsala University Hospital, Uppsala, Sweden; Institution for Neuroscience and Physiology at the Sahlgrenska Academy, Gothenburg University, and Gottfries Clinic, Mlndal, Sweden
Funding
ME Research UKIrish ME Trust
ME Research UK and the Irish ME Trust are providing joint funding for this important study.
Background and aims
The discovery of a retroviral link to ME/CFS, reported in the major journal Science in October 2009 (Science 2009; 326: 530–1), has the potential to advance the diagnosis and treatment of the illness greatly (see our overview essay XMRV and ME/CFS — A stunning find). The major finding was that DNA from the XMRV virus could be detected in the peripheral blood mononuclear cells of over two-thirds of ME/CFS patients’ samples from the blood bank in the Whittemore Peterson Institute tissue repository, but in less than 4% of healthy control samples. Also, the researchers reported that XMRV proteins were being expressed in blood cells from ME/CFS patients at very high levels compared with controls, and that patient-derived XMRV was infectious and transmissible.
Prof. Jonas Blomberg
Prof. Jonas Blomberg
These findings have caught the attention of the scientific world, but the next steps are equally important. Chief among these is for independent laboratories across the world to attempt the replication of the WPI findings among their own local populations of ME/CFS patients — it is sometimes said that replication studies are where the rubber meets the road in science! Since the WPI researchers used samples selected from several regions in the US where “outbreaks of CFS” had been documented (using patients diagnosed on CDC-1994 criteria and Canadian Clinical criteria 2003), blood samples from patients in other areas or countries might throw up very different results. Will ME/CFS samples from other regions of the US show similar high rates of positivity? And what about European samples?
Prof. Carl-Gerhard Gottfries
Prof. Carl-Gerhard Gottfries
This investigation is one attempt to answer this question — to establish whether XMRV nucleic acid can be found in peripheral blood mononuclear cells, plasma and serum of Swedish patients and controls. The researchers will retrospectively test previously stored samples from 3 groups of patients (20 Fukuda-defined ME/CFS, 20 fibromyalgia, 20 irritable bowel) and 20 controls. In addition, they will prospectively test samples from 120 ME/CFS patients (defined on the Fukuda 1994 and the Canadian 2003 criteria, similar to patients in the original 2009 report in Science), who will also have functional assessments.
The investigators are well-placed to conduct this confirmation study. Prof. Blomberg is head of the Research Group of Clinical Virology at the University of Uppsala. His research interests include human endogenous retroviruses, the links between endogenous retroviral sequences of the human genome and diseases such as multiple sclerosis and schizophrenia, and the development of real time polymerase chain reactions for common viral infections.
Prof. Carl-Gerhard Gottfries is Professor Emeritus at the Sahlgrenska University Hospital, Mlndal, and founder of the Gottfries Clinic AB which was formed in Vstra Gtaland in 1998 for patients with fibromyalgia and ME/CFS, and which is now situated in Mlndal. The unit has three doctors, nurses and medical secretaries, and it has also conducted basic clinical research, including trials of immunomodulatory therapy for fibromyalgia and CFS.
The results of this important study should be available in the Spring/Summer of 2010
http://www.meresearch.org.uk/research/projects/xmrvsweden.html
Independent confirmation of the relationship between XMRV and ME/CFS in Sweden
Investigators
Prof. Jonas Blomberg and Prof. Carl-Gerhard Gottfries
Institutions
Section of Clinical Virology, Uppsala University Hospital, Uppsala, Sweden; Institution for Neuroscience and Physiology at the Sahlgrenska Academy, Gothenburg University, and Gottfries Clinic, Mlndal, Sweden
Funding
ME Research UKIrish ME Trust
ME Research UK and the Irish ME Trust are providing joint funding for this important study.
Background and aims
The discovery of a retroviral link to ME/CFS, reported in the major journal Science in October 2009 (Science 2009; 326: 530–1), has the potential to advance the diagnosis and treatment of the illness greatly (see our overview essay XMRV and ME/CFS — A stunning find). The major finding was that DNA from the XMRV virus could be detected in the peripheral blood mononuclear cells of over two-thirds of ME/CFS patients’ samples from the blood bank in the Whittemore Peterson Institute tissue repository, but in less than 4% of healthy control samples. Also, the researchers reported that XMRV proteins were being expressed in blood cells from ME/CFS patients at very high levels compared with controls, and that patient-derived XMRV was infectious and transmissible.
Prof. Jonas Blomberg
Prof. Jonas Blomberg
These findings have caught the attention of the scientific world, but the next steps are equally important. Chief among these is for independent laboratories across the world to attempt the replication of the WPI findings among their own local populations of ME/CFS patients — it is sometimes said that replication studies are where the rubber meets the road in science! Since the WPI researchers used samples selected from several regions in the US where “outbreaks of CFS” had been documented (using patients diagnosed on CDC-1994 criteria and Canadian Clinical criteria 2003), blood samples from patients in other areas or countries might throw up very different results. Will ME/CFS samples from other regions of the US show similar high rates of positivity? And what about European samples?
Prof. Carl-Gerhard Gottfries
Prof. Carl-Gerhard Gottfries
This investigation is one attempt to answer this question — to establish whether XMRV nucleic acid can be found in peripheral blood mononuclear cells, plasma and serum of Swedish patients and controls. The researchers will retrospectively test previously stored samples from 3 groups of patients (20 Fukuda-defined ME/CFS, 20 fibromyalgia, 20 irritable bowel) and 20 controls. In addition, they will prospectively test samples from 120 ME/CFS patients (defined on the Fukuda 1994 and the Canadian 2003 criteria, similar to patients in the original 2009 report in Science), who will also have functional assessments.
The investigators are well-placed to conduct this confirmation study. Prof. Blomberg is head of the Research Group of Clinical Virology at the University of Uppsala. His research interests include human endogenous retroviruses, the links between endogenous retroviral sequences of the human genome and diseases such as multiple sclerosis and schizophrenia, and the development of real time polymerase chain reactions for common viral infections.
Prof. Carl-Gerhard Gottfries is Professor Emeritus at the Sahlgrenska University Hospital, Mlndal, and founder of the Gottfries Clinic AB which was formed in Vstra Gtaland in 1998 for patients with fibromyalgia and ME/CFS, and which is now situated in Mlndal. The unit has three doctors, nurses and medical secretaries, and it has also conducted basic clinical research, including trials of immunomodulatory therapy for fibromyalgia and CFS.
The results of this important study should be available in the Spring/Summer of 2010
