By Heidi Bauer:
"If there is one place that I've had enough politics and stalling in the name of scientific accuracy and procedure, it's the repeated mention that while XMRV is convincingly infectious to human beings that it has not been proven to cause disease. The NCI's summary of the 1st International XMRV convention writes that
"Everyone who attended the international workshop ... agreed that XMRV can infect humans",
however, "there is currently no evidence that the virus causes disease in people."
1 NIH director, Dr. Francis Collins calls for "healthy skepticism".
2 I tend to believe at this point that the skepticism is not healthy, but downright cynical as it always has been in regards to CFS patients.
The ramifications of leaving an entire population of sick people in the gutters and dismissing them as overweight, stressed and depressed housewives who should be running for the shelter of mother's little helper are enormous."
Doctor Speedy and ME in search of medical honesty
Thursday, September 30, 2010
Wednesday, September 29, 2010
Monday, September 27, 2010
XMRV in Monkeys
XMRV International Workshop Abstracts Part I:
"Monkeys - Five Rhesus macaques were infected with XMRV; two of them were sacrificed quickly and the others several months later. Creating only low levels of antibodies, the immune system did not react strongly to the virus possibly because it was able to quickly remove the virus from the bloodstream.
This apparently suggested to the investigators that the virus showed low infectivity and virulence, but low and behold when they opened the animals up, they were surprised to find that the virus had infected many organs and they were able to detect evidence of ongoing replication.
Interestingly, the virus hung out in the lymphoid organs – which give it a clear pathway to the bloodstream. (Dr. Mikovits has suggested that the lymphoid organs could be a tissue reservoir for the virus).
They found that XMRV was also replicating in all the sexual glands – which, of course, suggests that sexual transmission is a distinct possibility."
"Monkeys - Five Rhesus macaques were infected with XMRV; two of them were sacrificed quickly and the others several months later. Creating only low levels of antibodies, the immune system did not react strongly to the virus possibly because it was able to quickly remove the virus from the bloodstream.
This apparently suggested to the investigators that the virus showed low infectivity and virulence, but low and behold when they opened the animals up, they were surprised to find that the virus had infected many organs and they were able to detect evidence of ongoing replication.
Interestingly, the virus hung out in the lymphoid organs – which give it a clear pathway to the bloodstream. (Dr. Mikovits has suggested that the lymphoid organs could be a tissue reservoir for the virus).
They found that XMRV was also replicating in all the sexual glands – which, of course, suggests that sexual transmission is a distinct possibility."
Tuesday, September 21, 2010
NSPCC To Investigate Lightning Process and Dr Esther Crawley
networkedblogs.com:
"If you wish to raise further concerns directly with the team investigating the issue, please email info@nspcc.org.uk and put 'Medical trial on children with ME' ...in the subject line. You can use the following template letter or use part of it to build your own:
For the NSPCC team investigating the 'SMILE'/Lightning Process medical research on children with ME.
The protocol for this medical research states that is has been granted ethics approval (despite the treatment in question not having been researched on adults first) because “CFS/ME in children has a different outcome to adults and the treatment is different therefore research in adults cannot be extrapolated to children.”
This contention appears to be based on three UK psychiatric research papers (see 1,2,3 below) and ignores any and all UK and international biomedical research which indicates that ME is the same in children as in adults."
"If you wish to raise further concerns directly with the team investigating the issue, please email info@nspcc.org.uk and put 'Medical trial on children with ME' ...in the subject line. You can use the following template letter or use part of it to build your own:
For the NSPCC team investigating the 'SMILE'/Lightning Process medical research on children with ME.
The protocol for this medical research states that is has been granted ethics approval (despite the treatment in question not having been researched on adults first) because “CFS/ME in children has a different outcome to adults and the treatment is different therefore research in adults cannot be extrapolated to children.”
This contention appears to be based on three UK psychiatric research papers (see 1,2,3 below) and ignores any and all UK and international biomedical research which indicates that ME is the same in children as in adults."
Friday, September 17, 2010
Lightning Process led by Dr Esther Crawley kills XMRV
Suzy Chapman for ME agenda:
A pilot study on the controversial Lightning Process led by Dr Esther Crawley using children as young as eight has received the go ahead from a South West Region Research Ethics Committee (REC), despite widespread public concern and condemnation by two UK national patient organisations.
The organisations said: “We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children."
In June, ME agenda reported that Alastair Gibson, who had previously identified himself as one of two Lightning Process coaches involved with the NHS study, was the subject of an Advertising Standards Authority (ASA) ruling.
The ASA upheld a complaint about unsubstantiated claims made for the efficacy of the Lightning Process in ME and CFS in an advertisement for Mr Gibson’s “Withinspiration” company.
The South West Regional Manager for the National Research Ethics Service (NRES) confirmed to me, in May, that there is apparently no process through which REC decisions might be challenged by the public.
A pilot study on the controversial Lightning Process led by Dr Esther Crawley using children as young as eight has received the go ahead from a South West Region Research Ethics Committee (REC), despite widespread public concern and condemnation by two UK national patient organisations.
The organisations said: “We are issuing this joint statement due to widespread public concern, together with our own serious reservations, about a forthcoming study of the psychologically-based Lightning Process on children."
In June, ME agenda reported that Alastair Gibson, who had previously identified himself as one of two Lightning Process coaches involved with the NHS study, was the subject of an Advertising Standards Authority (ASA) ruling.
The ASA upheld a complaint about unsubstantiated claims made for the efficacy of the Lightning Process in ME and CFS in an advertisement for Mr Gibson’s “Withinspiration” company.
The South West Regional Manager for the National Research Ethics Service (NRES) confirmed to me, in May, that there is apparently no process through which REC decisions might be challenged by the public.
Thursday, September 16, 2010
Restoring mitochondrial function
Garth L. Nicolson, Ph.D. and Rita Ellithorpe, M.D.
The Institute for Molecular Medicine, Huntington Beach, California, USA, Journal of Chronic Fatigue Syndrome 2006; 13(1): 57-68.
When mitochondrial function is impaired, such as during moderate to severe fatigue, the net energy available to cells is limited to the Krebs Cycle and anaerobic metabolism.
Mitochondrial function appears to be directly related to fatigue, and when patients experience moderate to severe fatigue their mitochondrial function is inevitably impaired. Fatigue is a complex phenomenon determined by several factors, including psychological health [22,23], but at the biochemical level fatigue is related to the metabolic energy available to tissues and cells, mainly through mitochondrial electron transport.
Thus the integrity of mitochondrial membranes is critical to cell function and energy metabolism.
When mitochondrial membrane lipids are damaged by oxidation, they must be repaired or replaced in order to maintain the production of cellular energy to alleviate fatigue. During aging and in many diseases, including fatiguing illnesses, ROS/RNS-mediated accumulation of oxidized mitochondrial lipid occurs.
The failure to repair or replace these damaged molecules at a rate that exceeds their damage results in impaired mitochondrial function.
The results indicate that in moderately to severely fatigued subjects dietary LRT can significantly improve and even restore mitochondrial function and significantly improve fatigue. Using the Piper Fatigue Scale our unpublished data on a small number of CFS (and/or Fibromyalgia Syndrome) patients indicates that LRT plus antioxidants (NTFactor®) for 8 weeks reduces moderate to severe fatigue by 43.1%.
The Institute for Molecular Medicine, Huntington Beach, California, USA, Journal of Chronic Fatigue Syndrome 2006; 13(1): 57-68.
When mitochondrial function is impaired, such as during moderate to severe fatigue, the net energy available to cells is limited to the Krebs Cycle and anaerobic metabolism.
Mitochondrial function appears to be directly related to fatigue, and when patients experience moderate to severe fatigue their mitochondrial function is inevitably impaired. Fatigue is a complex phenomenon determined by several factors, including psychological health [22,23], but at the biochemical level fatigue is related to the metabolic energy available to tissues and cells, mainly through mitochondrial electron transport.
Thus the integrity of mitochondrial membranes is critical to cell function and energy metabolism.
When mitochondrial membrane lipids are damaged by oxidation, they must be repaired or replaced in order to maintain the production of cellular energy to alleviate fatigue. During aging and in many diseases, including fatiguing illnesses, ROS/RNS-mediated accumulation of oxidized mitochondrial lipid occurs.
The failure to repair or replace these damaged molecules at a rate that exceeds their damage results in impaired mitochondrial function.
The results indicate that in moderately to severely fatigued subjects dietary LRT can significantly improve and even restore mitochondrial function and significantly improve fatigue. Using the Piper Fatigue Scale our unpublished data on a small number of CFS (and/or Fibromyalgia Syndrome) patients indicates that LRT plus antioxidants (NTFactor®) for 8 weeks reduces moderate to severe fatigue by 43.1%.
Wednesday, September 15, 2010
Victim of lying psychiatrists tests positive for XMRV
By Nelda Holder, Mountain Xpress, Asheville & Western North Carolina, on 09/14/2010:
Editor’s note: Earlier this year, we reported on a Black Mountain family's experience after an unidentified source accused Lisa and Rodney Baldwin of medically neglecting Ryan, their only child.
Although he’d been diagnosed with chronic fatigue syndrome and declared medically disabled by the Social Services Administration, the Buncombe County Department of Social Services took custody of Ryan, who spent 10 months in three separate foster placements. The family was reunited last November.
The one-page letter dated Sept. 1, 2010, contained the following statement:
"I wanted to inform you that your son Ryan's tests indicated that he has positive [sic] evidence of XMRV in his blood sample drawn by PSI several months ago.
Editor’s note: Earlier this year, we reported on a Black Mountain family's experience after an unidentified source accused Lisa and Rodney Baldwin of medically neglecting Ryan, their only child.
Although he’d been diagnosed with chronic fatigue syndrome and declared medically disabled by the Social Services Administration, the Buncombe County Department of Social Services took custody of Ryan, who spent 10 months in three separate foster placements. The family was reunited last November.
The one-page letter dated Sept. 1, 2010, contained the following statement:
"I wanted to inform you that your son Ryan's tests indicated that he has positive [sic] evidence of XMRV in his blood sample drawn by PSI several months ago.
Sunday, September 12, 2010
Thursday, September 9, 2010
Peter White, psychiatrist - entirely flawed
By: D.P. Sampson, BSc (Hons), MSc, MBPsychS:
CLOSE ANALYSIS OF A LARGE PUBLISHED COHORT TRIAL INTO FATIGUE SYNDROMES AND MOOD DISORDERS THAT OCCUR AFTER DOCUMENTED VIRAL INFECTION
This paper presents a close analysis of a large published cohort trial into predictors (risk factors) for developing a fatigue syndrome or mood disorder following either infectious mononucleosis or an upper respiratory tract infection - White et al.
This analysis and the original data in the White et al. paper strongly calls into question the validity of broad based definitions of ME/CFS, such as the Oxford (and to lesser extent CDC) criteria. This is in large part due to the clear inclusion within such criteria of significant numbers of patients with primarily mood disorder/psychiatric illness in addition to those with ME/CFS.
The data do not support many of their conclusions.
Furthermore, material additions to the data set are made for reasons that are inadequately explained and in a way that may dilute the extent of the above bias created by choice of ME/CFS definition.
CLOSE ANALYSIS OF A LARGE PUBLISHED COHORT TRIAL INTO FATIGUE SYNDROMES AND MOOD DISORDERS THAT OCCUR AFTER DOCUMENTED VIRAL INFECTION
This paper presents a close analysis of a large published cohort trial into predictors (risk factors) for developing a fatigue syndrome or mood disorder following either infectious mononucleosis or an upper respiratory tract infection - White et al.
This analysis and the original data in the White et al. paper strongly calls into question the validity of broad based definitions of ME/CFS, such as the Oxford (and to lesser extent CDC) criteria. This is in large part due to the clear inclusion within such criteria of significant numbers of patients with primarily mood disorder/psychiatric illness in addition to those with ME/CFS.
The data do not support many of their conclusions.
Furthermore, material additions to the data set are made for reasons that are inadequately explained and in a way that may dilute the extent of the above bias created by choice of ME/CFS definition.
The REAL second most important day in ME/CFS research
By: CFS Patient Advocate:
Yesterday, events forced the Patient Advocate to move the vaunted Dr. Alter's confirmation paper to third on the list of "the most important days in ME/CFS research". Sorry, Dr. Alter.
Yesterday morning the Patient Advocate received a call from his son Peter, asking if he had heard the news on the BBC world news about the study that came from the University of Dundee in Scotland? (My wife also heard it on the news on the way to work.) I immediately went looking for it and found very little online. Later the contents of the study were released here.
This study came out of the blue. Very few people knew about it, or knew that it was coming. This study is a very big deal. While it does not mention XMRV, it does establish an association between white blood cell dysfunction and ME/CFS.
ME/CFS patients' systems give clear indication of fighting viruses, along with the attendant inflammatory issues. Coming hard on the heels of the long and unnecessarily delayed confirmation of the NCI/WPI October study, the study release gives us the REAL "second most important day in ME/CFS research".
Yesterday, events forced the Patient Advocate to move the vaunted Dr. Alter's confirmation paper to third on the list of "the most important days in ME/CFS research". Sorry, Dr. Alter.
Yesterday morning the Patient Advocate received a call from his son Peter, asking if he had heard the news on the BBC world news about the study that came from the University of Dundee in Scotland? (My wife also heard it on the news on the way to work.) I immediately went looking for it and found very little online. Later the contents of the study were released here.
This study came out of the blue. Very few people knew about it, or knew that it was coming. This study is a very big deal. While it does not mention XMRV, it does establish an association between white blood cell dysfunction and ME/CFS.
ME/CFS patients' systems give clear indication of fighting viruses, along with the attendant inflammatory issues. Coming hard on the heels of the long and unnecessarily delayed confirmation of the NCI/WPI October study, the study release gives us the REAL "second most important day in ME/CFS research".
Tuesday, September 7, 2010
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Study shows ME/CFS 'virus link' found in children
By: Eleanor Bradford, BBC Scotland Health Correspondent, 7 September 201
'Sometimes you just want to punch someone'
A study on children has found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus.
Scientists at the University of Dundee study found abnormalities in the white blood cells of children with ME/CFS, suggesting they had been fighting off infection.
In the study, funded by ME Research UK and The Young ME Sufferers (Tymes) Trust, 25 children aged between seven and 14 with ME/CFS were assessed, along with 23 children of a similar age in a control group.
The report, published in the Archives of Paediatrics and Adolescent Medicine, said abnormalities were found in the blood of all the children with ME/CFS.
A much greater number of neutrophils, the most common type of white blood cells, were also found to be at the end of their lifecycle.
The report said the high turnover of neutrophils indicated the body's need to fight infection.
Professor Jill Belch, an expert in vascular medicine at Ninewells hospital in Dundee who led the latest research project, said: "What we've found are blood changes that suggest chronic inflammation.
"This is important because it's showing an abnormality that we might be able to devise a treatment for, but it's also important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."
'Sometimes you just want to punch someone'
A study on children has found further evidence that ME, or Chronic Fatigue Syndrome, could be caused by a virus.
Scientists at the University of Dundee study found abnormalities in the white blood cells of children with ME/CFS, suggesting they had been fighting off infection.
In the study, funded by ME Research UK and The Young ME Sufferers (Tymes) Trust, 25 children aged between seven and 14 with ME/CFS were assessed, along with 23 children of a similar age in a control group.
The report, published in the Archives of Paediatrics and Adolescent Medicine, said abnormalities were found in the blood of all the children with ME/CFS.
A much greater number of neutrophils, the most common type of white blood cells, were also found to be at the end of their lifecycle.
The report said the high turnover of neutrophils indicated the body's need to fight infection.
Professor Jill Belch, an expert in vascular medicine at Ninewells hospital in Dundee who led the latest research project, said: "What we've found are blood changes that suggest chronic inflammation.
"This is important because it's showing an abnormality that we might be able to devise a treatment for, but it's also important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."
Monday, September 6, 2010
1st International Workshop on XMRV
1st International Workshop on XMRV: Q&A Wrap-up Session, On Wednesday September 8, 5:00pm - 7:30pm (Time displayed is Eastern Time, Washington DC Local)
You will be able to view the event at http://videocast.nih.gov when the event is live
This scientific conference has assembled an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies on a range of topics including virus-host interactions, cell type tropism, mode of transmission, animal models, and diagnostic assay development.
This Web cast Q&A wrap-up session will touch on the latest developments in the field in order to evaluate the state of our knowledge, address controversies, and develop an understanding between experts that will help direct future research.
This workshop is co-sponsored by the NIH and will be organized by Virology Education.
For more information, visit:
http://www.virology-education.com/ ....
You will be able to view the event at http://videocast.nih.gov when the event is live
This scientific conference has assembled an international group of scientists, physicians and epidemiologists to present and discuss, in a public forum, the latest XMRV studies on a range of topics including virus-host interactions, cell type tropism, mode of transmission, animal models, and diagnostic assay development.
This Web cast Q&A wrap-up session will touch on the latest developments in the field in order to evaluate the state of our knowledge, address controversies, and develop an understanding between experts that will help direct future research.
This workshop is co-sponsored by the NIH and will be organized by Virology Education.
For more information, visit:
http://www.virology-education.com/ ....
Sunday, September 5, 2010
ME is not a ‘mysterious’ illness
Nicola Reiss, Sunday, 5th September 2010, timesofmalta.com
I was disappointed to see the article ‘Chronic Fatigue Syndrome’ (The Sunday Times, August 22). The correct name for the illness is myalgic encephalomyelitis (ME), as listed by the World Health Organisation, which recognises the illness as a neurological disease.
There is nothing “mysterious” or in question about this. Moreover, to imply that this illness can be attributed to the “stress of living” is unacceptable when scientifically proven biomarkers have been established.
It is deeply upsetting to sufferers of this severe illness to see yet another article that, in effect, blames the patient, minimises the severity of the illness, and also ignores the fact that even young children can get this disease.
It is also strange to see such an outdated piece on ME which ignores recent scientific research. Like a page out of the dark ages, the old prejudices are printed again. Many years ago, both diabetes and multiple sclerosis were believed to be caused by hysteria. Even longer ago, leprosy was proof of evil.
Fortunately, today we can turn to science for answers. A recent report by ...
I was disappointed to see the article ‘Chronic Fatigue Syndrome’ (The Sunday Times, August 22). The correct name for the illness is myalgic encephalomyelitis (ME), as listed by the World Health Organisation, which recognises the illness as a neurological disease.
There is nothing “mysterious” or in question about this. Moreover, to imply that this illness can be attributed to the “stress of living” is unacceptable when scientifically proven biomarkers have been established.
It is deeply upsetting to sufferers of this severe illness to see yet another article that, in effect, blames the patient, minimises the severity of the illness, and also ignores the fact that even young children can get this disease.
It is also strange to see such an outdated piece on ME which ignores recent scientific research. Like a page out of the dark ages, the old prejudices are printed again. Many years ago, both diabetes and multiple sclerosis were believed to be caused by hysteria. Even longer ago, leprosy was proof of evil.
Fortunately, today we can turn to science for answers. A recent report by ...
Saturday, September 4, 2010
XMRV Test Kit (PCR/culture and serology)
VIP Dx, Reno, NV, USA:
To order your test kit for Human Gamma Retroviruses that include XMRV and other human MLV-related viruses, please complete the Kit Order form attached.
Specimens must be received within 24 hours for proper analysis.
To order your test kit for Human Gamma Retroviruses that include XMRV and other human MLV-related viruses, please complete the Kit Order form attached.
Specimens must be received within 24 hours for proper analysis.
Friday, September 3, 2010
ME/CFS patient takes antivirals for XMRV
ME/CFS patient takes antivirals for XMRV (Dutch with English Subtitles):
August 2010: Report of XMRV retrovirus in persons with ME CFS in Holland. Interviews with Professor in Immunology Kenny De Meirleir, ME/CFS patient who has had disease for 21 years and moved to Belgium to try immune therapy treatment, comments on blood safety etc
August 2010: Report of XMRV retrovirus in persons with ME CFS in Holland. Interviews with Professor in Immunology Kenny De Meirleir, ME/CFS patient who has had disease for 21 years and moved to Belgium to try immune therapy treatment, comments on blood safety etc
Wednesday, September 1, 2010
Susceptibility of the human retrovirus XMRV to antiretroviral inhibitors
By: Robert A Smith , Geoffrey S Gottlieb and A Dusty Miller
Retrovirology 2010, 7:70doi:10.1186/1742-4690-7-70, Published: 31 August 2010
Results
We extend the findings of previous studies by showing that, in addition to AZT and tenofovir, XMRV and HIV-1 are equally sensitive to AZddA (3'-azido-2',3'-dideoxyadenosine), AZddG (3'-azido-2',3'-dideoxyguanosine) and adefovir.
These results indicate that specific 3'-azido or acyclic nucleoside analog inhibitors of HIV-1 reverse transcriptase (RT) also block XMRV infection with comparable efficacy in vitro. Our data confirm that XMRV is highly resistant to the non-nucleoside RT inhibitors nevirapine and efavirenz and to inhibitors of HIV-1 protease.
In addition, we show that the integrase inhibitors raltegravir and elvitegravir are active against XMRV, with EC50 values in the nanomolar range.
Retrovirology 2010, 7:70doi:10.1186/1742-4690-7-70, Published: 31 August 2010
Results
We extend the findings of previous studies by showing that, in addition to AZT and tenofovir, XMRV and HIV-1 are equally sensitive to AZddA (3'-azido-2',3'-dideoxyadenosine), AZddG (3'-azido-2',3'-dideoxyguanosine) and adefovir.
These results indicate that specific 3'-azido or acyclic nucleoside analog inhibitors of HIV-1 reverse transcriptase (RT) also block XMRV infection with comparable efficacy in vitro. Our data confirm that XMRV is highly resistant to the non-nucleoside RT inhibitors nevirapine and efavirenz and to inhibitors of HIV-1 protease.
In addition, we show that the integrase inhibitors raltegravir and elvitegravir are active against XMRV, with EC50 values in the nanomolar range.