By Alice Neville
Kiwi researchers have welcomed a scientific breakthrough that could hold the key to a debilitating condition affecting 20,000 New Zealanders.
A retrovirus discovered by US experts may reveal the cause of myalgic encephalopathy (ME), also known as chronic fatigue syndrome.
And Auckland GP Dr Ros Vallings will be among the first to learn how the findings can help the estimated 17 million sufferers around the world, thanks to the Cathay Pacific/Herald on Sunday High Flyers Awards. The Associated New Zealand Myalgic Encephalopathy Society will use its travel award to send Vallings to a high-powered conference in London next May.
The fifth annual ME/chronic fatigue syndrome conference will focus on the discovery of the XMRV retrovirus in blood samples from ME patients - and possible cures.
Vallings, acknowledged as Australia's leading ME expert and an adviser to the society, said the findings were wonderful news. But she warned they had to be replicated by other independent laboratories to validate them.
She expects to be in a position to bring back the latest knowledge to help Kiwi sufferers. A retrovirus contains DNA that is incorporated into the host cell's DNA strand and replicated, meaning it stays with the sufferer for life.
The Aids virus is a retrovirus, as are some cancer-causing viruses.
That such a serious problem could be the cause of ME may seem an odd thing for sufferers to celebrate, but it means a real understanding of the disease is finally in sight.
When Vallings began working with ME sufferers more than 30 years ago, there was little understanding of the condition.
"Until the last five years or so, people have been sceptical because there is no definite cause and no definite tests,"she said.
"A lot of sufferers look well, so had been mislabelled as having psychiatric conditions, and the term fatigue is very vague."
Attitudes to ME in New Zealand are more advanced than in other countries such as America, where sufferers struggle to have their condition accepted as a legitimate illness, she says.
"We're quite lucky because we're a small country and it's easier to educate the powers-that-be and doctors."
But there is still a "hidden amount of scepticism" here: "Schoolteachers and employers can still be quite difficult because they don't ... More on nzherald.co.nz
Doctor Speedy and ME in search of medical honesty
Monday, November 30, 2009
Saturday, November 28, 2009
Dangerous lead
Thousands of UK workers are being exposed to levels of lead that can cause serious chronic health problems. The Health and Safety Executive knows it, but admits it has “no intention” of doing anything about it. Hazards special report, November 2009
Friday, November 27, 2009
Cleveland Clinic conference puts spotlight on XMRV link with chronic fatigue syndrome
By Angela Townsend cleveland.com
"There are so many more questions than answers," Silverman said. "What is the prevalence in the general population? Is it the cause of human disease? Are CFS patients infected because they're more susceptible to the virus, or is the virus causing the disease? Is this virus a threat to public health or not?"
Silverman, one of the researchers credited with the initial discovery of XMRV, said he would love to gather the group together again, perhaps in a year.
"Every day I'm getting e-mails from scientists wanting the virus for their studies," he said.
These people are mostly virologists looking at other viruses, or researchers looking at CFS and prostate cancer, which also has been linked to XMRV.
Silverman's lab has been trying to fill requests as quickly as possible, sending the virus DNA -- not the live virus -- by mail in a test tube. (The researcher can then insert the DNA into human cells in the lab, which makes the actual virus.)
In the meantime, researchers are working to develop a diagnostic test for XMRV
Thursday, November 26, 2009
Wednesday, November 25, 2009
The Role of Viruses in ME/CFS
The Role of Viruses in ME/CFS, XMRV and the MRC PACE Trial – Margaret Williams – 21st November 2009
"On 8th October 2009 the premier journal Science published a paper online showing a direct link between a retrovirus and ME/CFS (Detection of infectious retrovirus XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Peterson DL, Silverman RH, Mikovits JA et al) which caused global reverberations.
However, this was not the first time that a retrovirus had been associated with ME/CFS.
In 1991, using polymerase chain reaction and in situ hybridisation, Dr Elaine De Freitas, a virologist at the Wistar Institute, Philadelphia (which is America’s oldest independent institution devoted to biological research) and Drs Daniel Peterson, Paul Cheney, David Bell et al found such an association (Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci USA 1991:88:2922-2926). It is notable that co-author Hilary Koprowski is a distinguished virologist and Professor Laureate who was Director of the Wistar Institute from 1957-1991; he is a member of the US National Academy of Sciences and is Director of the Centre for Neurovirology at Thomas Jefferson University.
Before publication, the findings were presented on 4th September 1990 by Elaine De Freitas at the 11th International Congress of Neuropathology in Kyoto, Japan.
Ten days later, on 14th September 1990 Dr Peter White (as he then was) and other members of the Wessely School dismissed the findings: “in the vast majority of CFS cases there is a psychological component. About 75% of CFS sufferers are clinically depressed, according to Peter White, senior lecturer in the department of psychiatric medicine at St Bartholomew’s Hospital in London. White said he believes depression is often a cause, rather than a consequence, of CFS…Les Borysiewicz, a clinical virologist at Addenbrookes Hospital in Cambridge (now Chief Executive of the MRC, having succeeded Professor Colin Blakemore) (said) ‘Whatever causes CFS, it isn’t the virus itself’…Anthony Clare, psychiatrist and medical director of St Patrick’s Hospital in Dublin (now deceased), pointed out that…there have been many ‘fatigue’ diseases with shifting causes: ’Neurasthenia, food allergies, now viruses. Some people would always rather have a disease that might kill them than a syndrome they have to live with’ ” (Science 1990:249:4974:1240).
In their PNAS article that was published in April 1991, De Freitas et al noted that chronic fatigue immune dysfunction syndrome (CFIDS) “may be related or identical to myalgic encephalomyelitis” and examined adult and paediatric CFIDS patients for evidence of human retroviruses (HTLV types I and II). As the CFIDS Chronicle article noted, the Wistar team looked at the peripheral blood DNA to see if they could find messenger RNA (mRNA) encoding for a viral segment of the HTLV-II virus.
At that time, known human retroviruses were the human immunodeficiency viruses 1 and 2 (HIV-1 and HIV-2) which are known to cause AIDS, and human T-lymphotropic viruses HTLV-I which causes lymphoma and HTLV-II which causes leukaemia (Hunter-Hopkins ME-Letter, October 2009). The four segments of the HTLV-II virus are referred to as the env, gag, pol and tax.
After a two year study, De Freitas et al provided evidence for HTLV-II-like infection of blood cells from CFIDS patients (and also to a lesser extent from people closely associated with them). This evidence was further substantiated by patient reactivity to proteins with the molecular weights reported for HTLV-I and HTLV-II antigens.
In their article, De Freitas et al said: “The frequency of these antibodies in CFIDS patients compared with healthy non-contact controls suggests exposure / infection with an HTLV-like agent rare in healthy non-contact people”.
Following the Wistar findings, researchers at the US Centres for Disease Control (CDC) allegedly attempted to replicate De Freitas’ work but failed to do so; this was suggested to be because certain scientists appeared eager to discount any possibility of a retroviral association with CFIDS. De Freitas defended her work and insisted that the CDC investigators had modified her assays, with the result that her work could not be replicated by the CDC.
De Freitas was publicly discredited; her research funding was discontinued and her research abandoned; she was subjected to what appeared to be attempts to destroy her professional reputation. Commenting on the subsequent discovery of XMRV (see below), ME/CFS expert Dr Paul Cheney of The Cheney Clinic was unambiguous: “Her work was unfortunately assaulted by the CDC. Her proposal to fly to the CDC in Atlanta to physically run the assays side by side with the CDC scientists was dismissed by the CDC” (http://cheneyclinic.com/a-retrovirus-called-xmrv-is-linked-to-cfs/538 )."
"On 8th October 2009 the premier journal Science published a paper online showing a direct link between a retrovirus and ME/CFS (Detection of infectious retrovirus XMRV, in blood cells of patients with chronic fatigue syndrome. Lombardi VC, Ruscetti FW, Peterson DL, Silverman RH, Mikovits JA et al) which caused global reverberations.
However, this was not the first time that a retrovirus had been associated with ME/CFS.
In 1991, using polymerase chain reaction and in situ hybridisation, Dr Elaine De Freitas, a virologist at the Wistar Institute, Philadelphia (which is America’s oldest independent institution devoted to biological research) and Drs Daniel Peterson, Paul Cheney, David Bell et al found such an association (Retroviral sequences related to human T-lymphotropic virus type II in patients with chronic fatigue immune dysfunction syndrome. Proc Natl Acad Sci USA 1991:88:2922-2926). It is notable that co-author Hilary Koprowski is a distinguished virologist and Professor Laureate who was Director of the Wistar Institute from 1957-1991; he is a member of the US National Academy of Sciences and is Director of the Centre for Neurovirology at Thomas Jefferson University.
Before publication, the findings were presented on 4th September 1990 by Elaine De Freitas at the 11th International Congress of Neuropathology in Kyoto, Japan.
Ten days later, on 14th September 1990 Dr Peter White (as he then was) and other members of the Wessely School dismissed the findings: “in the vast majority of CFS cases there is a psychological component. About 75% of CFS sufferers are clinically depressed, according to Peter White, senior lecturer in the department of psychiatric medicine at St Bartholomew’s Hospital in London. White said he believes depression is often a cause, rather than a consequence, of CFS…Les Borysiewicz, a clinical virologist at Addenbrookes Hospital in Cambridge (now Chief Executive of the MRC, having succeeded Professor Colin Blakemore) (said) ‘Whatever causes CFS, it isn’t the virus itself’…Anthony Clare, psychiatrist and medical director of St Patrick’s Hospital in Dublin (now deceased), pointed out that…there have been many ‘fatigue’ diseases with shifting causes: ’Neurasthenia, food allergies, now viruses. Some people would always rather have a disease that might kill them than a syndrome they have to live with’ ” (Science 1990:249:4974:1240).
In their PNAS article that was published in April 1991, De Freitas et al noted that chronic fatigue immune dysfunction syndrome (CFIDS) “may be related or identical to myalgic encephalomyelitis” and examined adult and paediatric CFIDS patients for evidence of human retroviruses (HTLV types I and II). As the CFIDS Chronicle article noted, the Wistar team looked at the peripheral blood DNA to see if they could find messenger RNA (mRNA) encoding for a viral segment of the HTLV-II virus.
At that time, known human retroviruses were the human immunodeficiency viruses 1 and 2 (HIV-1 and HIV-2) which are known to cause AIDS, and human T-lymphotropic viruses HTLV-I which causes lymphoma and HTLV-II which causes leukaemia (Hunter-Hopkins ME-Letter, October 2009). The four segments of the HTLV-II virus are referred to as the env, gag, pol and tax.
After a two year study, De Freitas et al provided evidence for HTLV-II-like infection of blood cells from CFIDS patients (and also to a lesser extent from people closely associated with them). This evidence was further substantiated by patient reactivity to proteins with the molecular weights reported for HTLV-I and HTLV-II antigens.
In their article, De Freitas et al said: “The frequency of these antibodies in CFIDS patients compared with healthy non-contact controls suggests exposure / infection with an HTLV-like agent rare in healthy non-contact people”.
Following the Wistar findings, researchers at the US Centres for Disease Control (CDC) allegedly attempted to replicate De Freitas’ work but failed to do so; this was suggested to be because certain scientists appeared eager to discount any possibility of a retroviral association with CFIDS. De Freitas defended her work and insisted that the CDC investigators had modified her assays, with the result that her work could not be replicated by the CDC.
De Freitas was publicly discredited; her research funding was discontinued and her research abandoned; she was subjected to what appeared to be attempts to destroy her professional reputation. Commenting on the subsequent discovery of XMRV (see below), ME/CFS expert Dr Paul Cheney of The Cheney Clinic was unambiguous: “Her work was unfortunately assaulted by the CDC. Her proposal to fly to the CDC in Atlanta to physically run the assays side by side with the CDC scientists was dismissed by the CDC” (http://cheneyclinic.com/a-retrovirus-called-xmrv-is-linked-to-cfs/538 )."
Dr. LUCINDA BATEMEN and CFS
"Almost 20 years ago, when I finished my residency, the Infectious Disease fellows placed a message on the telephone saying, “If you are calling about Chronic Fatigue Syndrome, call Dr. Bateman at this number,” essentially diverting CFS patients away from the state funded university hospital to my new internal medicine practice.
It was a joke—payback--- for the intense interest I had expressed for CFS during my training, about the time the 1988 Holmes case definition was published. My interest was initially fueled by a personal desire to help my sister, who became ill while I was in medical school, but grew as I searched the medical literature, evaluated hundreds of patients, and came to know the illness face to face.
Nine years ago, after 10 years of CFS, my sister developed non-Hodgkins lymphoma. She died at age 51, overwhelmed by an unknown infection following stem cell transplant. Now WPI has reported the presence of XMRV, a discovery that could potentially have changed her fate.
Two decades after diagnosing my first patient, and one decade after opening a CFS clinic, remaining self employed has been the best way to continue a search for answers and to provide a place for patients with CFS.
I have indirectly donated at least a million dollars to the cause of CFS in the form of lost potential income.
I still participate in Medicare and most major insurances and follow a large group of patients with CFS and related illnesses. As a small business owner I can not provide medical insurance for my staff and was myself recently declined individual medical insurance by Blue Cross/Blue Shield. The clinic generally runs in the red and continues as a service to patients in my community.
The effort is subsidized largely by pharmaceutical dollars since I moonlight doing drug research and consulting to pay my clinical staff.
The CDC researchers are still doing epidemiology, deny a viral contribution, and demonstrate little understanding of the clinical subsets that meet the Fukuda CFS Case Definition
The NIH has not matched research funding to the significance and immediacy of the problem.
There is little recognition, interest or expertise regarding CFS at academic medical institutions across the country, including the University of ..."
It was a joke—payback--- for the intense interest I had expressed for CFS during my training, about the time the 1988 Holmes case definition was published. My interest was initially fueled by a personal desire to help my sister, who became ill while I was in medical school, but grew as I searched the medical literature, evaluated hundreds of patients, and came to know the illness face to face.
Nine years ago, after 10 years of CFS, my sister developed non-Hodgkins lymphoma. She died at age 51, overwhelmed by an unknown infection following stem cell transplant. Now WPI has reported the presence of XMRV, a discovery that could potentially have changed her fate.
Two decades after diagnosing my first patient, and one decade after opening a CFS clinic, remaining self employed has been the best way to continue a search for answers and to provide a place for patients with CFS.
I have indirectly donated at least a million dollars to the cause of CFS in the form of lost potential income.
I still participate in Medicare and most major insurances and follow a large group of patients with CFS and related illnesses. As a small business owner I can not provide medical insurance for my staff and was myself recently declined individual medical insurance by Blue Cross/Blue Shield. The clinic generally runs in the red and continues as a service to patients in my community.
The effort is subsidized largely by pharmaceutical dollars since I moonlight doing drug research and consulting to pay my clinical staff.
The CDC researchers are still doing epidemiology, deny a viral contribution, and demonstrate little understanding of the clinical subsets that meet the Fukuda CFS Case Definition
The NIH has not matched research funding to the significance and immediacy of the problem.
There is little recognition, interest or expertise regarding CFS at academic medical institutions across the country, including the University of ..."
Tuesday, November 24, 2009
Pacemaker endocarditis: an important clinical entity
SUMMARY
Pacemaker endocarditis remains a rare but potentially life threatening complication of pacemaker implantation.
This case illustrates a rare cause of pacemaker endocarditis, Serratia marcescens, the management difficulties that can be faced with such organisms, and the potential indolent nature of pacemaker lead associated endocarditis.
A review of the current data for pacemaker endocarditis management suggests that treatment with antimicrobials alone is unlikely to be curative and explantation of the device is recommended in all cases of confirmed pacemaker endocarditis (by echocardiography, in correlation with the patient’s clinical condition and inflammatory markers).
Pacemaker endocarditis remains a rare but potentially life threatening complication of pacemaker implantation.
This case illustrates a rare cause of pacemaker endocarditis, Serratia marcescens, the management difficulties that can be faced with such organisms, and the potential indolent nature of pacemaker lead associated endocarditis.
A review of the current data for pacemaker endocarditis management suggests that treatment with antimicrobials alone is unlikely to be curative and explantation of the device is recommended in all cases of confirmed pacemaker endocarditis (by echocardiography, in correlation with the patient’s clinical condition and inflammatory markers).
In memoriam Wendy Cleal
Woman with ME found dead in her home after fire
A GWENT woman was found dead in her home by a friend, two days after a fire in the house. The body of Monmouthshire massage therapist Wendy Cleal, 46, was found after police were called at 1.20pm on Tuesday when worried friends raised the alarm.
It then emerged that a fire had broken out at the Catbrook house on Sunday night, burning itself out and the tragic death remaining undiscovered until Tuesday.
South Wales Fire and Rescue investigator Matt Jones said the most likely cause of Miss Cleal's death was smoke inhalation after a small fire which extinguished itself.
It is understood that investigations centre around a portable heater found at the house.
Miss Cleal’s sister Janice Love said yesterday her family are “raw and completely in shock”.
She added: “It’s really hard, we’re devastated and Wendy will be badly missed.”
A GWENT woman was found dead in her home by a friend, two days after a fire in the house. The body of Monmouthshire massage therapist Wendy Cleal, 46, was found after police were called at 1.20pm on Tuesday when worried friends raised the alarm.
It then emerged that a fire had broken out at the Catbrook house on Sunday night, burning itself out and the tragic death remaining undiscovered until Tuesday.
South Wales Fire and Rescue investigator Matt Jones said the most likely cause of Miss Cleal's death was smoke inhalation after a small fire which extinguished itself.
It is understood that investigations centre around a portable heater found at the house.
Miss Cleal’s sister Janice Love said yesterday her family are “raw and completely in shock”.
She added: “It’s really hard, we’re devastated and Wendy will be badly missed.”
Monday, November 23, 2009
Asbestos: A shameful legacy
The authorities knew it was deadly more than 100 years ago, but it was only banned entirely in 1999. The annual death rate will peak at more than 5,000 in 2016 – now MPs have a chance to do the decent thing.
By Emily Dugan
They called it "the Barking cough". First it began like any other: a tickle in the chest and slight pain on breathing. Then, within a matter of months, the sufferer was in agony, gasping for air and eventually suffocating to death as a vicious cancer attacked their lungs waiting for the final lingering, inevitable end which might not come for decades.
The legacy of the Cape Asbestos factory in Barking, east London, where asbestos-related cancers continue to kill scores of residents, is a deadly one. Hundreds of people have died since the factory closed in 1968.
The story of Barking's "industrial killing machine" is a story repeated up and down the country where thousands of Britons continue to be blighted by their industrial past. Exposure to asbestos is now the biggest killer in the British workforce, killing about 4,000 people every year – more than who die in traffic accidents. The shocking figures are the grim legacy of the millions of tons of the dust shipped to Britain to make homes, schools, factories and offices fire resistant. It was used in products from household fabrics to hairdryers.
Those most at risk are ordinary workers and their families. Whether it was dockyard workers who unloaded the lethal cargoes, or those in the factories exposed to the fibres, or the carpenters, laggers, plumbers, electricians and shipyard workers who routinely used asbestos for insulation – all suffered. So did the wives who washed the work overalls and the children who hugged their parents or played in the dust-coated streets.
The exposure to asbestos in Britain is largely historical but the death toll is alarmingly etched on our future. Asbestos fibres can lie dormant on victims' lungs for up to half a century; deaths from asbestos in Britain will continue to rise until 2016.
Nor is it confined to Britain. The World Health Organisation says ...
Saturday, November 21, 2009
World AIDS Day 2009 is 1st December 2009
Today there are more people than ever before living with HIV in the UK, but less people report knowing someone with HIV. People with HIV generally look healthy and many do not find it easy to tell other people, so you may not realise if someone you know if HIV positive. To learn more about the different groups of people affected by HIV view the statistics.
Friday, November 20, 2009
Professor Nancy Klimas talks about XMRV and ME/CFS
Dr Nancy Klimas, from the University of Miami, talked about the XMRV retrovirus link with ME/CFS when she was interviewed yesterday on the South Florida Today news programme.
Dr Ellen Goudsmit joins ME Association panel of advisers
The ME Association have appointed Dr Ellen Goudsmit as a consultant on psychological issues. Dr Goudsmit is a registered health psychologist with a background in medical and psychological research.
Dr Goudsmit is a visiting research fellow at the University of East London, and is a co-editor of ME and CFS References, a list of all published papers on ME, CFS and related conditions, compiled for the Melvin Ramsay Archive since 1989. She has been a long time critic of the CBT-model for CFS. She devised the strategy of pacing for ME and introduced the concept of psychologisation (the emphasis on where there is little or no evidence to justify it).
Dr Goudsmit studied clinical psychology and psychophysiology for her Dutch Master’s degree. Her PhD described three studies of people with Ramsay-defined ME and post-viral fatigue syndrome.
In 2009, she was elected a fellow of the British Psychological Society (BPS). She is also a member of the International Association for CFS/ME.
Dr Goudsmit is an advocate for specialist clinics where physicians and other health professionals can choose from an arsenal of interventions depending on the symptoms, circumstances and preferences of the patient. As she was part of the BPS team which scrutinised the NICE guidelines and as she has already analysed the studies on CBT and GET, we hope that we will be able to use her knowledge to provide expert advice on the imminent publication of the PACE trial.
Dr Goudsmit, who was born in Amsterdam, has had ME since childhood. She became a British citizen two years ago.
Dr Goudsmit is a visiting research fellow at the University of East London, and is a co-editor of ME and CFS References, a list of all published papers on ME, CFS and related conditions, compiled for the Melvin Ramsay Archive since 1989. She has been a long time critic of the CBT-model for CFS. She devised the strategy of pacing for ME and introduced the concept of psychologisation (the emphasis on where there is little or no evidence to justify it).
Dr Goudsmit studied clinical psychology and psychophysiology for her Dutch Master’s degree. Her PhD described three studies of people with Ramsay-defined ME and post-viral fatigue syndrome.
In 2009, she was elected a fellow of the British Psychological Society (BPS). She is also a member of the International Association for CFS/ME.
Dr Goudsmit is an advocate for specialist clinics where physicians and other health professionals can choose from an arsenal of interventions depending on the symptoms, circumstances and preferences of the patient. As she was part of the BPS team which scrutinised the NICE guidelines and as she has already analysed the studies on CBT and GET, we hope that we will be able to use her knowledge to provide expert advice on the imminent publication of the PACE trial.
Dr Goudsmit, who was born in Amsterdam, has had ME since childhood. She became a British citizen two years ago.
Thursday, November 19, 2009
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