Doctor Speedy and ME in search of medical honesty
Saturday, October 31, 2009
Friday, October 30, 2009
Thursday, October 29, 2009
Rheumatoid Arthritis linked to insecticides
By John Gever, Senior Editor, MedPage Today
PHILADELPHIA -- Women who frequently sprayed their homes with insecticides over a period of years may have put themselves at risk for autoimmune diseases such as rheumatoid arthritis and systemic lupus erythematosus, a researcher said here.
Among women who sprayed at least six times a year, the risk of autoimmune disease was more than twice that of women who didn't use insecticides (HR 2.47, 95% CI 1.51 to 4.03, P=0.0036).
The results were similar among women who used insecticides for 20 years or more (HR 2.07, 95% CI 1.31 to 3.25), according to Christine G. Parks, PhD, an epidemiologist with the National Institute of Environmental Health Sciences in Research Triangle Park, North Carolina.
"We also saw that long-term application of insecticides by others in the home or in the lawn or garden about doubled disease risk," she told attendees at the American College of Rheumatology's annual meeting.
She found almost the same risk of autoimmune disease among women from environments with long-term insecticide spraying by commercial companies (HR 1.85, 95% CI 1.13 to 3.04).
The researchers examined records of 76,861 postmenopausal and predominantly white women ages 50-79 enrolled in the Women's Health Initiative Observational Study. Parks and colleagues focused on questions relating to farm history and insecticide use.
Of those whose records were reviewed, 178 later were eventually diagnosed with rheumatoid arthritis and 28 with lupus. An additional seven women were diagnosed with both lupus and rheumatoid arthritis.
Parks said investigators found that a history of just working or living on a farm -- although relatively frequent among the women in the survey -- did not appear to increase risk of rheumatoid arthritis or lupus.
But compared to people who had never used insecticides, women who had personally mixed or applied insecticides regularly had double the risk of a rheumatic disease
PHILADELPHIA -- Women who frequently sprayed their homes with insecticides over a period of years may have put themselves at risk for autoimmune diseases such as rheumatoid arthritis and systemic lupus erythematosus, a researcher said here.
Among women who sprayed at least six times a year, the risk of autoimmune disease was more than twice that of women who didn't use insecticides (HR 2.47, 95% CI 1.51 to 4.03, P=0.0036).
The results were similar among women who used insecticides for 20 years or more (HR 2.07, 95% CI 1.31 to 3.25), according to Christine G. Parks, PhD, an epidemiologist with the National Institute of Environmental Health Sciences in Research Triangle Park, North Carolina.
"We also saw that long-term application of insecticides by others in the home or in the lawn or garden about doubled disease risk," she told attendees at the American College of Rheumatology's annual meeting.
She found almost the same risk of autoimmune disease among women from environments with long-term insecticide spraying by commercial companies (HR 1.85, 95% CI 1.13 to 3.04).
The researchers examined records of 76,861 postmenopausal and predominantly white women ages 50-79 enrolled in the Women's Health Initiative Observational Study. Parks and colleagues focused on questions relating to farm history and insecticide use.
Of those whose records were reviewed, 178 later were eventually diagnosed with rheumatoid arthritis and 28 with lupus. An additional seven women were diagnosed with both lupus and rheumatoid arthritis.
Parks said investigators found that a history of just working or living on a farm -- although relatively frequent among the women in the survey -- did not appear to increase risk of rheumatoid arthritis or lupus.
But compared to people who had never used insecticides, women who had personally mixed or applied insecticides regularly had double the risk of a rheumatic disease
Wednesday, October 28, 2009
CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS
Frank N.M. Twisk 1 and Michael Maes 2:
Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a highly incapacitating illness classified by the WHO as a neurological disease (G93.3) since 1969 (WHO ICD-8, 1967).
The CFS Fukuda case definition (Fukuda et al. 1994), which has been has been criticized by several researchers, states that a CFS patient needs to experience chronic fatigue of new or definite onset, that is not substantially alleviated by rest, is not the result of ongoing exertion,
and results in substantial reductions in occupational, social, and personal activities. The Fukuda
case definition also requires the concurrent occurrence of at least four to eight other CFS symptoms, i.e. impaired memory or concentration, sore throat, tender lymph nodes, muscle pain, multiple joint pain, new headaches, unrefreshing sleep, and post-exertional malaise.
ME/CFS is considered to be a rather harmless condition by most physicians, but patients with ME/CFS are often more functionally impaired than those suffering from type 2 diabetes, congestive heart failure, multiple sclerosis, and end-stage renal disease (Anderson
& Ferrans, 1997; Buchwald et al. 1996).
Jason et al. (2006) analyzed a group of 166 individuals who had died with ME/CFS (listed at a US ME/CFS memorial register). The mean ages of the ME/CFS patients dying from heart failure (20,1%), cancer (19.4%), and suicide (20,1%) were 58.7, 47.8, and 39.3 years, respectively.
These ages are considerably lower than of those dying from heart failure (83.1 years), cancer (72.0 years), and suicide (48.0 years) in the general US population.
In spite of its chronicity and severity, ME/CFS remains highly controversial in the medical en political society. Despite several hundred studies demonstrating biological abnormalities in large subgroups, ME/CFS is still considered by many professionals to be a “medically unexplained syndrome” or a mental condition with a psychogenic/social origin. The psychosocial
explanatory model for “medically unexplained disorders”, disseminated by proponents of the (bio)psychosocial school, is the rationale for the combination of cognitive behavioral
therapy (CBT) and graded exercise therapy (GET), which are supposed to eliminate the psychogenic “maintaining factors” and “deconditioning”, respectively.
This review will show that:
a) the evidence-based success claim for CBT/GET is unjust, since the evidence base is lacking and CBT/ GET is not significantly more effective than usual care; and
b) the exertion, and thus GET, can have numerous potential damaging physical effects on ME/CFS patients.
PubMed
Benign Myalgic Encephalomyelitis (ME) / Chronic Fatigue Syndrome (CFS) is a highly incapacitating illness classified by the WHO as a neurological disease (G93.3) since 1969 (WHO ICD-8, 1967).
The CFS Fukuda case definition (Fukuda et al. 1994), which has been has been criticized by several researchers, states that a CFS patient needs to experience chronic fatigue of new or definite onset, that is not substantially alleviated by rest, is not the result of ongoing exertion,
and results in substantial reductions in occupational, social, and personal activities. The Fukuda
case definition also requires the concurrent occurrence of at least four to eight other CFS symptoms, i.e. impaired memory or concentration, sore throat, tender lymph nodes, muscle pain, multiple joint pain, new headaches, unrefreshing sleep, and post-exertional malaise.
ME/CFS is considered to be a rather harmless condition by most physicians, but patients with ME/CFS are often more functionally impaired than those suffering from type 2 diabetes, congestive heart failure, multiple sclerosis, and end-stage renal disease (Anderson
& Ferrans, 1997; Buchwald et al. 1996).
Jason et al. (2006) analyzed a group of 166 individuals who had died with ME/CFS (listed at a US ME/CFS memorial register). The mean ages of the ME/CFS patients dying from heart failure (20,1%), cancer (19.4%), and suicide (20,1%) were 58.7, 47.8, and 39.3 years, respectively.
These ages are considerably lower than of those dying from heart failure (83.1 years), cancer (72.0 years), and suicide (48.0 years) in the general US population.
In spite of its chronicity and severity, ME/CFS remains highly controversial in the medical en political society. Despite several hundred studies demonstrating biological abnormalities in large subgroups, ME/CFS is still considered by many professionals to be a “medically unexplained syndrome” or a mental condition with a psychogenic/social origin. The psychosocial
explanatory model for “medically unexplained disorders”, disseminated by proponents of the (bio)psychosocial school, is the rationale for the combination of cognitive behavioral
therapy (CBT) and graded exercise therapy (GET), which are supposed to eliminate the psychogenic “maintaining factors” and “deconditioning”, respectively.
This review will show that:
a) the evidence-based success claim for CBT/GET is unjust, since the evidence base is lacking and CBT/ GET is not significantly more effective than usual care; and
b) the exertion, and thus GET, can have numerous potential damaging physical effects on ME/CFS patients.
PubMed
'NHS must not treat ME as mental illness'
thisiskent.co.uk/tonbridge Tuesday, October 27, 2009, 11:25
"A PENSIONER from Tonbridge with chronic fatigue syndrome has slammed her treatment which included a stay in the psychiatric ward of a major London hospital.
Mill Crescent resident Jeannie Carson suffers from ME, and has criticised the NHS's view of the illness which looks at it as a psychiatric condition, with treatment including cognitive behavioural therapy (CBT).
The former Pembury Hospital midwife feels the healthcare system is wrong for labelling it in this way, and says it should be treated as a neurological illness.
The 67-year-old spends most of the day bed-bound and as well as the overwhelming tiredness, she suffers muscular pain, difficulty walking, and feelings of isolation and loneliness.
She has shunned her treatment through psychiatric methods and now gets by with the help of a carer."
"A PENSIONER from Tonbridge with chronic fatigue syndrome has slammed her treatment which included a stay in the psychiatric ward of a major London hospital.
Mill Crescent resident Jeannie Carson suffers from ME, and has criticised the NHS's view of the illness which looks at it as a psychiatric condition, with treatment including cognitive behavioural therapy (CBT).
The former Pembury Hospital midwife feels the healthcare system is wrong for labelling it in this way, and says it should be treated as a neurological illness.
The 67-year-old spends most of the day bed-bound and as well as the overwhelming tiredness, she suffers muscular pain, difficulty walking, and feelings of isolation and loneliness.
She has shunned her treatment through psychiatric methods and now gets by with the help of a carer."
Bending the rules
"Critics of new medical tests aimed at getting claimants off benefits and into work say they are target-driven measures that penalise genuinely ill people."
By Melissa Viney
The Guardian, Wednesday 28 October 2009
"Had Anna Wood realised that by bending down to pick up an object off the floor she would be deemed fit to work, perhaps the 33-year-old former academic would have thought twice. Wood, who had been forced to give up a prestigious fellowship position at Strathclyde University last year after developing severe ME, was made to perform the exercise as part of a medical test that all claimants of the new sickness benefit for ill and disabled people have to undertake.
"The doctor came and asked me lots of questions and filled in a form," she recalls. "I then got a letter saying, 'You've only got 12 points. We need 15. You don't qualify.' He had asked me to bend down and pick something off the floor and I did it. The point is I can't do it repeatedly, and I don't see how that can mean I can work. There was nothing in the test that related to my stamina and energy.
"How any normal person could read my medical report and think, 'Oh yes, she can work', is absolutely beyond me."
Wood points out a section in the report that states: "The healthcare professional opined that Dr Wood is likely to have significant instability regarding walking, standing and using stairs. She cannot hoover, wash dishes, make a bed and struggles to stand in the kitchen and needs to hold onto the rail using stairs ... due to fatigue and pain."
This tough medical test, called the work capability assessment (WCA), is at the heart of controversial changes to sickness benefit that were introduced last October when employment support allowance (ESA) replaced incapacity benefit (IB) for new claimants.
The test contains a series of questions, called "descriptors", that relate to physical and mental functions, and from which claimants score points. The test fails ..."
By Melissa Viney
The Guardian, Wednesday 28 October 2009
"Had Anna Wood realised that by bending down to pick up an object off the floor she would be deemed fit to work, perhaps the 33-year-old former academic would have thought twice. Wood, who had been forced to give up a prestigious fellowship position at Strathclyde University last year after developing severe ME, was made to perform the exercise as part of a medical test that all claimants of the new sickness benefit for ill and disabled people have to undertake.
"The doctor came and asked me lots of questions and filled in a form," she recalls. "I then got a letter saying, 'You've only got 12 points. We need 15. You don't qualify.' He had asked me to bend down and pick something off the floor and I did it. The point is I can't do it repeatedly, and I don't see how that can mean I can work. There was nothing in the test that related to my stamina and energy.
"How any normal person could read my medical report and think, 'Oh yes, she can work', is absolutely beyond me."
Wood points out a section in the report that states: "The healthcare professional opined that Dr Wood is likely to have significant instability regarding walking, standing and using stairs. She cannot hoover, wash dishes, make a bed and struggles to stand in the kitchen and needs to hold onto the rail using stairs ... due to fatigue and pain."
This tough medical test, called the work capability assessment (WCA), is at the heart of controversial changes to sickness benefit that were introduced last October when employment support allowance (ESA) replaced incapacity benefit (IB) for new claimants.
The test contains a series of questions, called "descriptors", that relate to physical and mental functions, and from which claimants score points. The test fails ..."
Tuesday, October 27, 2009
Mind and body
Source: The Scotsman: Published Date: 27 October 2009
"Thanks for your excellent, informative article on the possibility that the newly discovered retrovirus xmrv causes myalgic encephalomyelitis (Living, 10 October).
The UK's quarter of a million sufferers finally have some hope of effective treatment.
ME has been classified as a physical, neurological illness by the World Health Organisation since 1969. Despite this, for 25 years all UK taxpayer research and treatment funding has gone to psychiatrists, who insist it is an "abnormal illness belief".
The time is overdue for research funding into ME to be placed in the hands of immunologists. Research into psychological treatments should be cancelled to fund this.
HILARY PATTEN
Beaconsfield Way
Frome, Somerset"
"Thanks for your excellent, informative article on the possibility that the newly discovered retrovirus xmrv causes myalgic encephalomyelitis (Living, 10 October).
The UK's quarter of a million sufferers finally have some hope of effective treatment.
ME has been classified as a physical, neurological illness by the World Health Organisation since 1969. Despite this, for 25 years all UK taxpayer research and treatment funding has gone to psychiatrists, who insist it is an "abnormal illness belief".
The time is overdue for research funding into ME to be placed in the hands of immunologists. Research into psychological treatments should be cancelled to fund this.
HILARY PATTEN
Beaconsfield Way
Frome, Somerset"
FIFTH "SWINE FLU" VACCINE DEATH IN SWEDEN
theflucase.com - Tuesday, 27 October 2009
"Media in Sweden is having a tough time maintaining the propaganda as more and more people question the reasons for the mass vaccination. Now, authorities say that if not "80% of the population takes the shot, we risk 100 deaths from the swine flu".
Most Swedes know that a normal fly season see several thousand dead from complications from the seasonal flu so the proportions of the propaganda coming from media and the government has caused a growing revolt against the massive attempts to scare people to take the poisonous injection.
We have earlier reported on the first death, the second death (also here), the third death and the fourth death in Sweden from the poisonous Pandemrix vaccin shot.
Today, Svenska Dagbladet reports that over 350 cases of side effects from the Pandemrix "swine flu" shot, has been recorded so far. It has also become clear that this shot contains the most deadly mix of substances of all the known vaccines manufactured against the so called "swine flu" H1N1 influenza. The official number of deaths from the "swine flu" vaccine is now five.
And that is only those who have strong immediate reactons, the long term effects are usually never even investigated. If you would die from the shot two weeks after you took it, your death would not be considered to have anything to do with the vaccination. Severe health problems years after will of course be very hard to link to the poisonous injection.
Even if these five official cases died within days, the official story is of course as expected: "none of these deaths has been confirmed to be linked to the vaccine"."
"Media in Sweden is having a tough time maintaining the propaganda as more and more people question the reasons for the mass vaccination. Now, authorities say that if not "80% of the population takes the shot, we risk 100 deaths from the swine flu".
Most Swedes know that a normal fly season see several thousand dead from complications from the seasonal flu so the proportions of the propaganda coming from media and the government has caused a growing revolt against the massive attempts to scare people to take the poisonous injection.
We have earlier reported on the first death, the second death (also here), the third death and the fourth death in Sweden from the poisonous Pandemrix vaccin shot.
Today, Svenska Dagbladet reports that over 350 cases of side effects from the Pandemrix "swine flu" shot, has been recorded so far. It has also become clear that this shot contains the most deadly mix of substances of all the known vaccines manufactured against the so called "swine flu" H1N1 influenza. The official number of deaths from the "swine flu" vaccine is now five.
And that is only those who have strong immediate reactons, the long term effects are usually never even investigated. If you would die from the shot two weeks after you took it, your death would not be considered to have anything to do with the vaccination. Severe health problems years after will of course be very hard to link to the poisonous injection.
Even if these five official cases died within days, the official story is of course as expected: "none of these deaths has been confirmed to be linked to the vaccine"."
Monday, October 26, 2009
Sunday, October 25, 2009
Health Secretary clarifies Government position on disability benefits
careandsupport.direct.gov.uk:
"22 October 2009
The Secretary of State for Health has made it clear that Disability Living Allowance for the Under 65s will not be affected by Government plans to create a National Care Service.
Speaking at the National Children and Adult Services Conference in Harrogate, Andy Burnham MP said: "I am encouraged by the response to our Big Care Debate and welcome the fact that other political parties are beginning to put their ideas on the table. There are big differences between what we are saying but we are beginning to create what I wanted to see - unstoppable momentum for legislation in the next Parliament.
"But, while the debate is moving quickly, I do want to stress that the door is wide open for discussion. We are still in a consultation period. No decisions have been made on funding options. We are still listening – about funding, about structures, and about how to build a forward-looking system of care.
"One avenue I do want to close down, however, is the debate and controversy over Disability Living Allowance.
"We recognise that this is an important benefit for disabled people, and I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.
"This is because, whilst there will be increases in the numbers of disabled people of working age who need care, the majority of the people needing care in the future will be older people.
"However, we do think there may be a case for bringing together elements of some disability benefits, such as Attendance Allowance, with social care funding, to create a new care and support system to provide for the needs of older and disabled people.
"But the important principle is that people receiving any of the relevant benefits at the time of reform would continue to receive an equivalent level of support and protection under a new and better care and support system.
"And let's not forget, everyone - regardless of wealth or asset base – will benefit from the protection and peace of mind that the National Care Service will provide."
The Government is currently carrying out a consultation – the Big Care Debate - on the new National Care Service, a vision for which was set out in July’s Green Paper Shaping the Future of Care Together. The Big Care Debate continues until 13th November."
"22 October 2009
The Secretary of State for Health has made it clear that Disability Living Allowance for the Under 65s will not be affected by Government plans to create a National Care Service.
Speaking at the National Children and Adult Services Conference in Harrogate, Andy Burnham MP said: "I am encouraged by the response to our Big Care Debate and welcome the fact that other political parties are beginning to put their ideas on the table. There are big differences between what we are saying but we are beginning to create what I wanted to see - unstoppable momentum for legislation in the next Parliament.
"But, while the debate is moving quickly, I do want to stress that the door is wide open for discussion. We are still in a consultation period. No decisions have been made on funding options. We are still listening – about funding, about structures, and about how to build a forward-looking system of care.
"One avenue I do want to close down, however, is the debate and controversy over Disability Living Allowance.
"We recognise that this is an important benefit for disabled people, and I can state categorically that we have now ruled out any suggestion that DLA for under-65s will be brought into the new National Care Service.
"This is because, whilst there will be increases in the numbers of disabled people of working age who need care, the majority of the people needing care in the future will be older people.
"However, we do think there may be a case for bringing together elements of some disability benefits, such as Attendance Allowance, with social care funding, to create a new care and support system to provide for the needs of older and disabled people.
"But the important principle is that people receiving any of the relevant benefits at the time of reform would continue to receive an equivalent level of support and protection under a new and better care and support system.
"And let's not forget, everyone - regardless of wealth or asset base – will benefit from the protection and peace of mind that the National Care Service will provide."
The Government is currently carrying out a consultation – the Big Care Debate - on the new National Care Service, a vision for which was set out in July’s Green Paper Shaping the Future of Care Together. The Big Care Debate continues until 13th November."
Saturday, October 24, 2009
Dr. Speight's resignation letter part 2...
"From 25% group newsletter: Nigel Speight AYME patron's resignation letter
To all who may not know, in the UK as well as the US there has been a long battle between people who believe ME-CFS to be a psychiatric or behavorial disorder, commonly known as the 'Wessely School' or psychiatric lobby, and those who believe it to be an organic biomedical disorder.
This battle has actually extended to UK patient charities, with two charities in particular, AfME and AYME, being widely considered to be colluding with the 'psychiatric lobby' in an attempt to portray ME-CFS as a behavorial disorder to the detriment of thier members.
So it is good news that Dr. Nigel Speight, a patron of AYME, has publicly resigned as their Patron citing exactly this as his reason in the letter below.
I believe he has now become a Medical Advisor to the 25% M.E. Group, if you want to send an email of thanks here is the email addy-
enquiry@25megroup.org
Thank you, Dr. Speight. "
To all who may not know, in the UK as well as the US there has been a long battle between people who believe ME-CFS to be a psychiatric or behavorial disorder, commonly known as the 'Wessely School' or psychiatric lobby, and those who believe it to be an organic biomedical disorder.
This battle has actually extended to UK patient charities, with two charities in particular, AfME and AYME, being widely considered to be colluding with the 'psychiatric lobby' in an attempt to portray ME-CFS as a behavorial disorder to the detriment of thier members.
So it is good news that Dr. Nigel Speight, a patron of AYME, has publicly resigned as their Patron citing exactly this as his reason in the letter below.
I believe he has now become a Medical Advisor to the 25% M.E. Group, if you want to send an email of thanks here is the email addy-
enquiry@25megroup.org
Thank you, Dr. Speight. "
ME Research Christmas Cards 2009
This year’s ME Research UK Christmas card collection is now available to order, and consists of 11 attractive designs, including some new designs for 2009. As always, they are all at very reasonable prices (the prices below are for packs of 10), and all profits go towards the ME research we all want to see.
The designs are shown below, although please note they are not to scale. Also, there are now only 8 packs of the Christmas Tree Bauble design left. Have a closer look by clicking on each one to see a larger version which will open in a new browser window.
If you would like to place an order, please ...
The designs are shown below, although please note they are not to scale. Also, there are now only 8 packs of the Christmas Tree Bauble design left. Have a closer look by clicking on each one to see a larger version which will open in a new browser window.
If you would like to place an order, please ...
Friday, October 23, 2009
Thursday, October 22, 2009
Dr Nigel Speight's Resignation Letter To AYME
“Dear all
I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron.
Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged.
In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable.
This appears to have been the cause of AYME's relative enthusiasm for the NICE Guidelines, which most of us feel involve and an overemphasis on CBT and GET.
This compromise seems to have helped the psychiatrists to get a new lease of life.
The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME who appear to be taking a similar position).
In this controversy I feel more in sympathy with the rest of you. I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.
It is a combination of all these factors that has caused me to resign and I am sure you will all understand.
With Best Wishes
Nigel Speight"
I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron.
Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged.
In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable.
This appears to have been the cause of AYME's relative enthusiasm for the NICE Guidelines, which most of us feel involve and an overemphasis on CBT and GET.
This compromise seems to have helped the psychiatrists to get a new lease of life.
The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME who appear to be taking a similar position).
In this controversy I feel more in sympathy with the rest of you. I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.
It is a combination of all these factors that has caused me to resign and I am sure you will all understand.
With Best Wishes
Nigel Speight"
Wednesday, October 21, 2009
A Case of Chronic Denial
By HILLARY JOHNSON
Published: October 20, 2009
EARLIER this month, a study published in the journal Science answered a question that medical scientists had been asking since 2006, when they learned of a novel virus found in prostate tumors called xenotropic murine leukemia virus-related virus, or XMRV: Was it a human infection?
XMRV is a gammaretrovirus, one of a family of viruses long-studied in animals but not known to infect people. In animals, these retroviruses can cause horrendous neurological problems, immune deficiency, lymphoma and leukemia. The new study provided overwhelming evidence that XMRV is a human gammaretrovirus — the third human retrovirus (after H.I.V. and human lymphotropic viruses, which cause leukemia and lymphoma). Infection is permanent and, yes, it can spread from person to person (though it is not yet known how the virus is transmitted).
That would have been news enough, but there was more. XMRV had been discovered in people suffering from chronic fatigue syndrome, a malady whose very existence has been a subject of debate for 25 years. For sufferers of this disease, the news has offered enormous hope. Being seriously ill for years, even decades, is nightmarish enough, but patients are also the targets of ridicule and hostility that stem from the perception that it is all in their heads. In the study, 67 percent of the 101 patients with the disease were found to have XMRV in their cells. If further study finds that XMRV actually causes their condition, it may open the door to useful treatments. At least, it will be time to jettison the stigmatizing name chronic fatigue syndrome.
The illness became famous after an outbreak in 1984 around Lake Tahoe, in Nevada. Several hundred patients developed flu-like symptoms like fever, sore throat and headaches that led to neurological problems, including severe memory loss and inability to understand conversation. Most of them were infected with several viruses at once, including cytomegalovirus, Epstein-Barr and human herpesvirus 6. Their doctors were stumped. The Centers for Disease Control and Prevention, the nation’s presumed bulwark against emerging infectious diseases, dismissed the epidemic and said the Tahoe doctors “had worked themselves into a frenzy.” The sufferers, a C.D.C. investigator told me at the time, were “not normal Americans.”
When, by 1987, the supposed hysteria failed to evaporate and indeed continued erupting in other parts the country, the health agency orchestrated a jocular referendum by mail among a handful of academics to come up with a name for it. The group settled on “chronic fatigue syndrome” — the use of “syndrome” rather than “disease” suggested a psychiatric rather than physical origin and would thus discourage public panic and prevent insurers from having to make “chronic disbursements,” as one of the academics joked.
An 11th-hour plea by a nascent patient organization to call the disease by the scientific name used in Britain, myalgic encephalomyelitis, was rejected by the C.D.C. as “overly complicated and too confusing for many nonmedical persons.”
Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
Many people don’t realize how severe this illness can be. It is marked by memory and cognition problems, and physical collapse after any mental or physical exertion. The various co-infections that occur only make matters worse. Many patients are bedridden. And recovery is rare. A significant number of patients have been ill for more than two decades.
Dr. Nancy Klimas, an immunologist at the University of Miami School of Medicine who treats AIDS and chronic fatigue syndrome, remarked in The Times last week that if given the choice she would prefer to have AIDS:
“My H.I.V. patients for the most part are hale and hearty,” she said, noting that billions of dollars have been spent on AIDS research. “Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families.”
Sunday, October 18, 2009
A Carer's Fight for a biomedical ME service
"This Blog, a record of the last twenty one days in my life, stands alongside my youtube videos as some kind of record of what it's like to care full-time for someone with severe ME , a hugely discriminated against , denied, disease: I've also tried to capture some of that in this painting (oil on canvas).
Over the last few years, I have written and published two books .
Right now I am putting all my resources into marketing my major work, a children's story, that has taken me ten years to write and is now ready to fly; it just might be the best chance we stand." by Greg Crowhurst
Friday, October 16, 2009
Thursday, October 15, 2009
THE PROOF IS OUT THERE - PART III
Invest in ME Newsletter for October 2009
"The news we had been awaiting since May was finally announced. The research on a novel virus to which Dr. Judy Mikovits alluded at 4th Invest in ME International ME/CFS Conference in May, in answer to a question from Hillary Johnson, has been published by Science magazine.
The researchers at the Whittemore-Peterson Institute (WPI), together with the Cleveland Clinic and the National Cancer Institute have reported that 67% of 101 ME patients tested positive for infection with xenobiotic murine retrovirus (XMRV), a gammaretrovirus associated with a subset of prostate cancer. Only 3.7% of 218 healthy subjects tested were positive for the virus.
People with CFS are 54 times more likely to be infected with XMRV than your average person on the street - [http://en.wikipedia.org/wiki/Xmrv]
The implications here that ME is indeed an infectious disease could be far reaching.
Yet the US Centres for Disease Control (CDC) knew of the possible retrovirus link back in 1991 when Elaine De Freitas presented research on this.
The CDC failed to act - much as the UK MRC have failed to act in all the years despite the scandal of suffering being caused to tens of thousands of severely ill people.
Predictably some of those who continue to portray the illness as a somatoform condition have immediately tried to diminish the research - an obvious sign that those vested interests which have dominated research funding from the MRC for so long are worried that their cash cow is about to be culled by good science.
More details - click here.
Statement by Invest in ME on the WPI research - click here.
Read Hillary Johnson's view of this news - click here."
Zanardi doughnuts at 0.45 & 2.35
"A tribute to the great Alex Zanardi with some great moments captured and edited together from his years in the CART Champcar series, includes the famous Corkscrew manouvre ..."
Tuesday, October 13, 2009
Another deadline for Donington Park
Bernie Ecclestone has issued yet another deadline to Simon Gillett, despite the Donington boss breaching the contract to host next year's British Grand Prix by not coming up with the money for the track refurbishments in time. After a discussion with Gillett on Monday, F1 chief executive Ecclestone told British media that Donington has two more weeks to remedy the contract breach
Renault Roadshow wows Bucharest
Renault’s Romain Grosjean and third driver Lucas di Grassi took to the streets of Bucharest on Saturday and Sunday for the Romanian leg of the French team’s Roadshow programme.
The two-day event, which took place on a specially created 600-metre circuit along Bucharest’s Libertatii Boulevard in front of the Palace of the Parliament, attracted over 70,000 spectators. Grosjean and Di Grassi took turns behind the wheel of last year’s Renault R28, entertaining the crowds with tricks including doughnuts and burnouts.
"This was my first visit to Romania and I have to say it has been a great experience,” said Grosjean. “Everybody has been really friendly and there has been an amazing atmosphere in the city all weekend. This was the first time that a Formula One car has run in Bucharest so I tried my best to put on a great show for the fans to show them how special these cars are."
Hope at last for ME sufferers
"Thank you, thank you, thank you for your report headlined "Has science found the cause of ME?" (9 October). This is the news that thousands of ME sufferers and their families have been awaiting for so long.
I was trying to summon up the energy to make some breakfast when my eye caught the headline, and I felt hope, almost euphoria.
After 17 years of ME, with its attendant stripping away of what we could call a normal life, I hope this research will lead to a cure, or at least maybe the cynics, sceptics, and downright hostile, not least of these the medical profession, will start to treat sufferers seriously. Graded exercise therapy and cognitive behaviour therapy need to be re-evaluated.
How good it was, also, to read an enlightened editorial on the subject of ME, which said it like it is."
Rosey Lowry
Bury St Edmunds, Suffolk
I was trying to summon up the energy to make some breakfast when my eye caught the headline, and I felt hope, almost euphoria.
After 17 years of ME, with its attendant stripping away of what we could call a normal life, I hope this research will lead to a cure, or at least maybe the cynics, sceptics, and downright hostile, not least of these the medical profession, will start to treat sufferers seriously. Graded exercise therapy and cognitive behaviour therapy need to be re-evaluated.
How good it was, also, to read an enlightened editorial on the subject of ME, which said it like it is."
Rosey Lowry
Bury St Edmunds, Suffolk
Letters: Public spending and deficit
"What happens now that 95 per cent of the study group of myalgic encephalomyelitis sufferers have been found to have antibodies to the highly contagious retrovirus XMRV, and 65 per cent tested positively for it?
Will the UK medical authorities take this seriously enough to move quickly and test and where appropriate give currently available antiretrovirals to the quarter of a million ME sufferers, as they now do with HIV and Aids sufferers? Will they at last acknowledge just how very ill and at risk of premature death many ME sufferers are? Will they advise health workers on how to avoid contamination from retrovirus XMRV?
Or will they, as seems more likely, continue to give all research and treatment funding to the psychiatrists who have taken all ME research and treatment funding for over two decades, while pretending that ME is imaginary?
Will they continue to mix ME sufferers up with sufferers of mental disorders in their ridiculously named "chronic fatigue" clinics?
Will they continue the daft practice of offering only graded exercise, which makes sufferers worse, and cognitive behaviour therapy, which does nothing?
This 58-year-old sufferer of severe ME for the past 21 years would like some answers. It seems there is an epidemic of a serious contagious physical illness in the UK that the medical authorities have been ignoring for far too long."
Hilary Patten
Frome, Somerset
Will the UK medical authorities take this seriously enough to move quickly and test and where appropriate give currently available antiretrovirals to the quarter of a million ME sufferers, as they now do with HIV and Aids sufferers? Will they at last acknowledge just how very ill and at risk of premature death many ME sufferers are? Will they advise health workers on how to avoid contamination from retrovirus XMRV?
Or will they, as seems more likely, continue to give all research and treatment funding to the psychiatrists who have taken all ME research and treatment funding for over two decades, while pretending that ME is imaginary?
Will they continue to mix ME sufferers up with sufferers of mental disorders in their ridiculously named "chronic fatigue" clinics?
Will they continue the daft practice of offering only graded exercise, which makes sufferers worse, and cognitive behaviour therapy, which does nothing?
This 58-year-old sufferer of severe ME for the past 21 years would like some answers. It seems there is an epidemic of a serious contagious physical illness in the UK that the medical authorities have been ignoring for far too long."
Hilary Patten
Frome, Somerset
Monday, October 12, 2009
" Wessely Proves He Is Not A Scientist " ...
Sat Oct 10 16:30:33 BST 2009 by Robert
"Psychiatrists are notorious for ignoring physical symptoms.
A friend of mine on antidepressants told the doctor he felt terrible.
Increasing the dose did not cure his raging urinary tract infection, caused by the antidepressant.
I also recall a psychiatrist commenting on George Bush pathetically attempting to appear larger by keeping his arms out from his body. He was too clueless to consider the far simpler explanation of a bullet proof vest."
"Psychiatrists are notorious for ignoring physical symptoms.
A friend of mine on antidepressants told the doctor he felt terrible.
Increasing the dose did not cure his raging urinary tract infection, caused by the antidepressant.
I also recall a psychiatrist commenting on George Bush pathetically attempting to appear larger by keeping his arms out from his body. He was too clueless to consider the far simpler explanation of a bullet proof vest."
Chronic fatigue syndrome linked to 'cancer virus'
"Chronic fatigue syndrome, the debilitating condition once dismissed as "yuppie flu", has been linked to a virus that is also common in people with a certain type of prostate cancer.
It's still not clear if the virus, called XMRV, causes chronic fatigue syndrome (CFS), or is just more common in people with the disorder. But the discovery is sure to reignite the debate over whether CFS is fundamentally a psychological condition or a physiological one.
"It's a contentious area that lies somewhere between medicine and psychiatry," says Simon Wessely, a psychiatrist at King's College London who has been vilified by patient groups for his scepticism of cut-and-dried explanations for CFS and his assertion that psychological factors may play an important role."
"That sentiment is echoed by John Coffin, a virologist at Tufts University in Boston. "This looks like a very, very interesting start," he says. "It's not impossible that this could cause a disease with neurological and immunological consequences, but we don't know for sure."
Wessely points out, however, that XMRV fails to account for the wide variety of other factors associated with the CFS, including childhood trauma and other infections such as viral meningitis. "Any model that is going to be satisfactory has to explain everything, not just little bits," he says.
If XMRV does turn out to contribute to CFS, this could point to new treatments. In the UK, patients are prescribed exercise and cognitive therapy, which seems to work for some patients, but not for most. Such failings underscore the need for therapies that go after the root cause of chronic fatigue syndrome – whatever it turns out to be."
It's still not clear if the virus, called XMRV, causes chronic fatigue syndrome (CFS), or is just more common in people with the disorder. But the discovery is sure to reignite the debate over whether CFS is fundamentally a psychological condition or a physiological one.
"It's a contentious area that lies somewhere between medicine and psychiatry," says Simon Wessely, a psychiatrist at King's College London who has been vilified by patient groups for his scepticism of cut-and-dried explanations for CFS and his assertion that psychological factors may play an important role."
"That sentiment is echoed by John Coffin, a virologist at Tufts University in Boston. "This looks like a very, very interesting start," he says. "It's not impossible that this could cause a disease with neurological and immunological consequences, but we don't know for sure."
Wessely points out, however, that XMRV fails to account for the wide variety of other factors associated with the CFS, including childhood trauma and other infections such as viral meningitis. "Any model that is going to be satisfactory has to explain everything, not just little bits," he says.
If XMRV does turn out to contribute to CFS, this could point to new treatments. In the UK, patients are prescribed exercise and cognitive therapy, which seems to work for some patients, but not for most. Such failings underscore the need for therapies that go after the root cause of chronic fatigue syndrome – whatever it turns out to be."
Friday, October 9, 2009
Leading article: Chronic neglect
The Independent - Leading article: Friday, 9 October 2009
"The symptoms are disabling tiredness, irritable bowels, intense headaches, depression and cognitive dysfunction. Yet for years many doctors argued that Chronic Fatigue Syndrome didn't exist. They refused even to dignify it with the name previous sufferers preferred – Myalgic encephalomyelitis. ME, they said, was just "me" writ large and dismissed it as yuppy flu. In the event the flu has lasted longer than the yuppies did. Some four million people suffer from it in the United States alone.
Now two potential avenues for cures come along at once. Researchers in Utah claim to have discovered the gene involved. Another team in Nevada have found compelling evidence that a retrovirus, like HIV, might well be implicated.
Scientists could be on the brink of a breakthrough. We must hope that they are. That would – at least – go some way to compensating for the shameful manner in which sufferers were treated for so long by the medical profession."
"The symptoms are disabling tiredness, irritable bowels, intense headaches, depression and cognitive dysfunction. Yet for years many doctors argued that Chronic Fatigue Syndrome didn't exist. They refused even to dignify it with the name previous sufferers preferred – Myalgic encephalomyelitis. ME, they said, was just "me" writ large and dismissed it as yuppy flu. In the event the flu has lasted longer than the yuppies did. Some four million people suffer from it in the United States alone.
Now two potential avenues for cures come along at once. Researchers in Utah claim to have discovered the gene involved. Another team in Nevada have found compelling evidence that a retrovirus, like HIV, might well be implicated.
Scientists could be on the brink of a breakthrough. We must hope that they are. That would – at least – go some way to compensating for the shameful manner in which sufferers were treated for so long by the medical profession."
Tuesday, October 6, 2009
Email phishing attack spreads to Gmail and Yahoo
Thousands of accounts on web-based e-mail system Hotmail have been compromised in a phishing attack, software giant Microsoft has confirmed.
BBC News has seen a list of more than 10,000 e-mail accounts, predominantly originating from Europe, and passwords which were posted online.
Microsoft said it had launched an investigation.
Phishing involves using fake websites to lure people into revealing details such as bank accounts or login names.
"We are aware that some Windows Live Hotmail customers' credentials were acquired illegally and exposed on a website," said a Microsoft spokesperson.
"Upon learning of the issue, we immediately requested that the credentials be removed and launched an investigation to determine the impact to customers."
Quick change
Graham Cluley, consultant at security firm Sophos, told BBC News the published list may just be a subset of a longer list of compromised accounts.
"We still don't know the scale of the problem," he told BBC News.
Technology blog neowin.net was the first to publish details of the attack. It said the accounts were posted on 1 October to pastebin.com, a website commonly used by developers to share code.
Although the details have since been removed, BBC News and Neowin has seen a list of 10,028 names beginning with the letters A and B.
BBC News has confirmed that the accounts are genuine and predominantly originate in Europe.
News Email phishing attack spreads to Gmail and Yahoo
Neowin can today reveal that more lists are circulating with genuine account information and that over 20,000 accounts have now been compromised. Non-Hotmail passport accounts have been affected too. A new list contains email accounts for Gmail, Yahoo, Comcast, Earthlink and other third party popular web mail services. It's not clear if this is login information for the service itself or the Microsoft Passport passwords.
#367 Trudon 06 Oct 2009 - 09:47 GET: where can I see the list of emails? I want to know if my accounts are on there
#368 ££££ 06 Oct 2009 - 10:03 GET: Check this website to see if you've been conpromised :
www.moneyforsilly-CBT.org.lol
Just enter your email address and password and we'll check to see if it's on our list, I mean, the list...
Sunday, October 4, 2009
Saturday, October 3, 2009
Weasley does it ...
He might play second fiddle to Harry Potter in the wizardry department, but ......
Friday, October 2, 2009
Gene Responsible for Chronic Fatigue Syndrome Identified
exercise is extremely counter-productive for people with CFS
Lourdes Salvador
October 01, 2009
In recent news, Alan Light, a research professor in the anesthesiology department, dispels the myth that chronic fatigue syndrome (CFS) is mere laziness.
Chronic fatigue syndrome (CFS) is characterized by disabling fatigue, unrefreshing sleep, headaches, depression, cognitive dysfunction, and body pain.
More than 4 million Americans suffer from CFS. While more frequent in women aged 40-59 years, people of all ages, ethnicities, economic statuses, and both sexes may develop CFS.
Light explains that there is a gene that produces a protein which tells the muscles when they are too tired to keep working. When this gene signals, people feel fatigued and are encouraged to rest.
However, in persons with chronic fatigue syndrome, this gene signals the muscles too early. This leads to fatigue and exhaustion at much lower levels of activity than most of us experience.
Exercise acts to increase proteins which signal muscles fatigue. In normal people, these proteins are limited; however, in people with CFS these proteins increase rapidly and induce a feeling of exhaustion.
Though graded exercise therapy is often recommended for people with CFS, this finding shows that exercise is extremely counter-productive for people with CFS.
Light's research does not identify what causes this gene to suddenly malfunction in previously healthy people, though he hopes that CFS will now be viewed as an actual disease.
Even more importantly, a simple genetic test could identify chronic fatigue syndrome for diagnostic purposes.
Other research has linked vaccinations, toxic environmental exposures, and various infections as triggers of CFS. Toxic exposures may act to alter genetic constitution. Vaccines may act to sensitize the immune system.
There is now sufficient evidence that chronic fatigue syndrome is real and disabling.
Light's research may lead to potential treatments for CFS.
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