Another must read for anyone struggling with pacing
Adapting Successfully to Long Term Illness – May Start with Dumping the Denial
ADAPTING TO FIBROMYALGIA
When I received the diagnosis of fibromyalgia in February of 2001, I realized I had been unknowingly living with illness and denying it most of my life.
Even as a child, I felt like my nerves were all prickly and fuzzy like static buildup. I lived with pain, stiffness, fatigue and troubled sleep. Into adulthood, weather changes, certain foods, lights, sound, the touch of my clothes, even thinking hurt. Every day was an exhausting struggle.
But the worst would pass, and I would be told how healthy I looked and that I was just out of shape and needed to push myself harder, and that there was really nothing wrong with me and I was just too sensitive.
I accepted this view of myself and lived in denial of the truth of my experience
Wednesday, January 19, 2011
Psychological abuse - Wikipedia, the free encyclopedia
Psychological abuse - Wikipedia, the free encyclopedia
Abusers may aim to avoid household chores or exercise total control of family finances. Abusers can be very manipulative, often recruiting friends, law officers and court officials, even the victim's family to their side, while shifting blame to the victim.[33][34]
Abusers may aim to avoid household chores or exercise total control of family finances. Abusers can be very manipulative, often recruiting friends, law officers and court officials, even the victim's family to their side, while shifting blame to the victim.[33][34]
He who cannot do what he wants must make do with what he can.
He who cannot do what he wants must make do with what he can.
- Terence
So poignant for anyone with M.E. - pacing may prevent avoid the 'boom-bust' cycle of overexertion and relapse but leads inevitably to a restricted lifestyle wherein the everyday joys of bird song or the first flowers of spring for example have to be fully appreciated or you would go stir crazy
- Terence
So poignant for anyone with M.E. - pacing may prevent avoid the 'boom-bust' cycle of overexertion and relapse but leads inevitably to a restricted lifestyle wherein the everyday joys of bird song or the first flowers of spring for example have to be fully appreciated or you would go stir crazy
Wednesday, December 08, 2010
US survey of women with fibromyalgia highlights its profound impact & their struggle for acknowledgment
US survey of women with fibromyalgia highlights its profound impact & their struggle for acknowledgment
As a result of fibromyalgia:
• Two thirds (67%) of respondents say they are unable to keep up with household chores,
• Nearly half (47%) report that their work life or career has been negatively affected,
• And two in five (42%) spend less quality time with their friends.
• Nearly one third (31%) say fibromyalgia has negatively affected their ability to experience intimacy.
As a result of fibromyalgia:
• Two thirds (67%) of respondents say they are unable to keep up with household chores,
• Nearly half (47%) report that their work life or career has been negatively affected,
• And two in five (42%) spend less quality time with their friends.
• Nearly one third (31%) say fibromyalgia has negatively affected their ability to experience intimacy.
Yvette Cooper & ME: Clarification from Dr William Weir
Yvette Cooper: 'There's nothing better than politics' | Politics | The Guardian
Clarification from Dr William Weir
Margaret Williams 7th December 2010
Dr William Weir, Consultant Physician of 10, Harley Street, London W1G 9PF
(who specialises in ME/CFS) wishes to correct the statement made in an
article in The Guardian on 4th December 2010 by the Shadow Foreign
Secretary, Yvette Cooper MP.
In an interview (?There?s nothing better than politics?), Yvette Cooper MP
is quoted as saying about the time she suffered from ME:
"... But my consultant did say that over 90% [of ME patients] made a full
recovery, and it never came back. It's one of those things you hope people
suffering from it now will realise..." (
http://www.guardian.co.uk/politics/2010/dec/04/yvette-cooper-guardian-interview
).
It is in the public domain that Yvette Cooper?s consultant was Dr William
Weir, since Ms Cooper herself made this information public in an interview
about her illness in the Daily Mail about ten years ago.
Dr Weir is concerned about this statement in two respects: (1) he did not
give Ms Cooper such advice and (2) it is untrue that 90% of ME/CFS patients
make a full recovery.
Dr Weir points out that the statistic Ms Cooper is probably (mis)quoting is
?Of those who recover, 90% tend to do so in the first year of the illness?,
but in those who remain unwell after the first year, there is a lesser
tendency towards recovery.
It should be said that at the All Party Parliamentary Group on ME (APPGME)
meeting held on 21st October 2009 in Committee Room 21 at the House of
Commons, Ms Cooper was made aware of the many problems faced by people with
ME/CFS in relation to the Department for Work and Pensions, specifically the
way in which a patient?s own GP and specialist were progressively being
removed from the opinion-gathering process and replaced by doctors who know
nothing of the patient?s medical background and even less about ME/CFS. In
response, she noted these concerns but did not indicate that there would be
any shift in the DWP position (ME Association summary of APPGME meeting:
http://tinyurl.com/ycnw6q5).
Permission to repost
Clarification from Dr William Weir
Margaret Williams 7th December 2010
Dr William Weir, Consultant Physician of 10, Harley Street, London W1G 9PF
(who specialises in ME/CFS) wishes to correct the statement made in an
article in The Guardian on 4th December 2010 by the Shadow Foreign
Secretary, Yvette Cooper MP.
In an interview (?There?s nothing better than politics?), Yvette Cooper MP
is quoted as saying about the time she suffered from ME:
"... But my consultant did say that over 90% [of ME patients] made a full
recovery, and it never came back. It's one of those things you hope people
suffering from it now will realise..." (
http://www.guardian.co.uk/politics/2010/dec/04/yvette-cooper-guardian-interview
).
It is in the public domain that Yvette Cooper?s consultant was Dr William
Weir, since Ms Cooper herself made this information public in an interview
about her illness in the Daily Mail about ten years ago.
Dr Weir is concerned about this statement in two respects: (1) he did not
give Ms Cooper such advice and (2) it is untrue that 90% of ME/CFS patients
make a full recovery.
Dr Weir points out that the statistic Ms Cooper is probably (mis)quoting is
?Of those who recover, 90% tend to do so in the first year of the illness?,
but in those who remain unwell after the first year, there is a lesser
tendency towards recovery.
It should be said that at the All Party Parliamentary Group on ME (APPGME)
meeting held on 21st October 2009 in Committee Room 21 at the House of
Commons, Ms Cooper was made aware of the many problems faced by people with
ME/CFS in relation to the Department for Work and Pensions, specifically the
way in which a patient?s own GP and specialist were progressively being
removed from the opinion-gathering process and replaced by doctors who know
nothing of the patient?s medical background and even less about ME/CFS. In
response, she noted these concerns but did not indicate that there would be
any shift in the DWP position (ME Association summary of APPGME meeting:
http://tinyurl.com/ycnw6q5).
Permission to repost
Wednesday, December 01, 2010
Gearing Up for the Big Search for XMRV - Health Blog - WSJ
Gearing Up for the Big Search for XMRV - Health Blog - WSJ
Lipkin tells the Health Blog that the study focuses on whether XMRV or other viruses in the same family are found in higher frequency in patients with CFS.
As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that “includes everyone’s viewpoints.”
The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients.
More work still needs to be done. The physicians participating in the study will meet with Lipkin in coming weeks to develop a standard checklist for evaluating patients. The scientists are still working out a common protocol for how they handle and process the blood. But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS
Lipkin tells the Health Blog that the study focuses on whether XMRV or other viruses in the same family are found in higher frequency in patients with CFS.
As a starting point, everyone had to agree on how to define a CFS patient for the purposes of the study. The issue has been highly contentious and Lipkin says they tried to agree to criteria for patient selection that “includes everyone’s viewpoints.”
The solution: the study will seek to enroll people who in addition to meeting criteria for two widely used, symptom-based definitions of CFS, showed signs of infection — such as a sore throat or tender lymph nodes — around the time they developed CFS. The thought is that if there is a viral link to CFS, it’s most likely to show up in those patients.
More work still needs to be done. The physicians participating in the study will meet with Lipkin in coming weeks to develop a standard checklist for evaluating patients. The scientists are still working out a common protocol for how they handle and process the blood. But Lipkin tells the Health Blog that everything they are doing is designed to make it possible to finally end the debate over whether XMRV is associated with CFS
Could a Virus Cause Chronic Fatigue Syndrome? - Newsweek
Could a Virus Cause Chronic Fatigue Syndrome? - Newsweek
Validation In a Virus?
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
(Page 1 of 2)
Mitsuko Nagone / Flikr-Getty Images
It’s hard, even years later, to read Laura Hillenbrand’s wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college. In an essay she wrote for The New Yorker in 2003, Hillenbrand described her aching joints, swollen glands, nausea, and exhaustion. The debilitating and unproductive trek from doctor to doctor. The disregard, the shame, and the elusive quest for relief. Chronic-fatigue syndrome plunged Hillenbrand into a state of disorientation; words looked like meaningless shapes; thoughts disappeared. “I was at a sensory distance from the world,” she wrote, “as if I were wrapped in clear plastic.”
It is a metaphor for the illness itself. For decades, chronic-fatigue syndrome has been mired in layers of medical and scientific uncertainty. Since Hillenbrand’s symptoms emerged in 1987, doctors’ awareness has grown and researchers have come up with tantalizing hypotheses about how the disorder has made as many as 4 million Americans sick. But every advance seems to come with a caveat, including a recent series of dramatic and confounding discoveries. In August a team of researchers led by the National Institutes of Health and the FDA announced that they’d found evidence of a family of retroviruses in the blood of patients with chronic-fatigue syndrome. The study mirrored an earlier report, published last year, which was celebrated by patients because it raised the possibility of pinpointing a cause and a treatment. But a third major study published this summer by the Centers for Disease Control and Prevention found no such link. The big hope now is that a new nationwide investigation, directed by a leading virologist at Columbia University, will bring greater urgency and find some clarity within the next 12 to 18 months. “Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”
It’s been a long ride. Since the illness first surfaced in the U.S. in the ’80s, chronic-fatigue patients have endured skepticism from doctors, who have not known what to make of a constellation of symptoms that has no known cause, no diagnostic test, and no specific treatment. Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs. The complex disorder continues to baffle the medical community because symptoms can vary dramatically over time and the spectrum of patients is vast. Some hold it together during the week but collapse on weekends; the most severely affected are bedridden. “Even though chronic-fatigue syndrome isn’t a death sentence, it’s a life sentence,” says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a leading funding and advocacy organization. “People lead diminished lives because of the illness.”
What patients want is scientific validation. In the study published last year, researchers led by Judy Mikovits, of the Whittemore Peterson Institute (WPI) in Reno, Nev., identified XMRV, an infectious retrovirus in the same family as the AIDS virus, in the blood of 67 percent of patients suffering from chronic-fatigue syndrome. “There’s no question it’s in the people we found it in,” says Mikovits. The NIH study detected the DNA of viruses related to XMRV in 87 percent of its patients, compared with only 7 percent of healthy controls. But other studies, including the CDC’s report and several in Europe, found nothing. Nobody knows why with any certainty. Viral testing methods differ among labs. It’s also possible that the virus is endemic to certain geographic areas and not to others. Perhaps most significant: some patients, including those studied by the WPI and the NIH, are much sicker than others. “It just highlights that there’s still a lot we don’t know about this virus,” says the CDC’s Dr. Steve Monroe.
Including: how do humans get XMRV in the first place? “No one has any idea,” says Mikovits. Researchers emphasize that it’s still not known if the virus family detected actually causes chronic-fatigue syndrome. “It could be a bystander effect,” says the NIH’s Dr. Harvey Alter. But the possibility of infection has raised concern. Earlier this year an international blood-bank association urged members to discourage chronic-fatigue patients from donating because of the potential risk of transmitting the virus. The American Red Cross goes even further, deferring indefinitely any donor who reveals she has been diagnosed with chronic-fatigue syndrome or an XMRV infection.
Today, doctors prescribe an array of treatments—including exercise programs, cognitive behavioral therapy, painkillers, and sleep medications—to relieve symptoms. But if chronic fatigue is caused by a virus, it raises the question: should patients be on antiretrovirals, the same drugs prescribed to people with HIV? Some chronic-fatigue patients are already taking them off-label, but they can have serious side effects. Dr. Andrew Mason, a virologist at the University of Alberta in Canada, says it’s time to launch a well-planned clinical trial to test the drugs’ effectiveness. It wasn’t until antibiotics were prescribed to treat peptic ulcers, says Mason, that the medical community finally accepted bacteria as the culprit. “It’s the only way to win this battle,” he says.
But, as with so many aspects of chronic-fatigue syndrome, there is disagreement here, too. Other specialists say the science needs to be on firmer ground before trials are launched. “Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can,” says Dr. Ian Lipkin, director of Columbia’s Center for Infection and Immunity. “But the first order of business is to determine if the association is real.”
In early November U.S. researchers met with Lipkin, who is spearheading the next phase of research. The plan is to collect blood samples from at least 150 patients across the U.S. with similar disease characteristics, then compare them with healthy controls matched for age, sex, and geography so that scientists can sort out the confusion and establish as conclusively as possible if a viral link is valid.
Scientific discovery is never straightforward, much as we all want it to be. More often than not, it’s a tangle of hunches, studies, disagreements, false starts, tangents, and frustrations. One day, everybody hopes, the layers of wrapping will come off. The cause—or, very possibly, causes—of chronic-fatigue syndrome will become clear. Treatments will become available. And Laura Hillenbrand and millions of others can start reclaiming their vitality and their lives.
Validation In a Virus?
For years, chronic-fatigue syndrome has been dismissed by the medical establishment. Now researchers may be closing in on a culprit.
(Page 1 of 2)
Mitsuko Nagone / Flikr-Getty Images
It’s hard, even years later, to read Laura Hillenbrand’s wrenching description of her pain. Hillenbrand, 43, is the author of Seabiscuit and the new and widely acclaimed book Unbroken, an account of the World War II bombardier Louis Zamperini. But she is also the most articulate spokesperson for chronic-fatigue syndrome, the mysterious disorder that has plagued her since college. In an essay she wrote for The New Yorker in 2003, Hillenbrand described her aching joints, swollen glands, nausea, and exhaustion. The debilitating and unproductive trek from doctor to doctor. The disregard, the shame, and the elusive quest for relief. Chronic-fatigue syndrome plunged Hillenbrand into a state of disorientation; words looked like meaningless shapes; thoughts disappeared. “I was at a sensory distance from the world,” she wrote, “as if I were wrapped in clear plastic.”
It is a metaphor for the illness itself. For decades, chronic-fatigue syndrome has been mired in layers of medical and scientific uncertainty. Since Hillenbrand’s symptoms emerged in 1987, doctors’ awareness has grown and researchers have come up with tantalizing hypotheses about how the disorder has made as many as 4 million Americans sick. But every advance seems to come with a caveat, including a recent series of dramatic and confounding discoveries. In August a team of researchers led by the National Institutes of Health and the FDA announced that they’d found evidence of a family of retroviruses in the blood of patients with chronic-fatigue syndrome. The study mirrored an earlier report, published last year, which was celebrated by patients because it raised the possibility of pinpointing a cause and a treatment. But a third major study published this summer by the Centers for Disease Control and Prevention found no such link. The big hope now is that a new nationwide investigation, directed by a leading virologist at Columbia University, will bring greater urgency and find some clarity within the next 12 to 18 months. “Cutting-edge science is often not definitive,” says Dr. William Schaffner, an infectious-disease expert at Vanderbilt University School of Medicine. “Keep your seat belts tight.”
It’s been a long ride. Since the illness first surfaced in the U.S. in the ’80s, chronic-fatigue patients have endured skepticism from doctors, who have not known what to make of a constellation of symptoms that has no known cause, no diagnostic test, and no specific treatment. Many patients, including Hillenbrand, have been referred to psychiatrists. For years the disorder was not a priority at the highest levels; in 1999 a government audit found that the CDC had diverted millions of chronic-fatigue research dollars to other programs. The complex disorder continues to baffle the medical community because symptoms can vary dramatically over time and the spectrum of patients is vast. Some hold it together during the week but collapse on weekends; the most severely affected are bedridden. “Even though chronic-fatigue syndrome isn’t a death sentence, it’s a life sentence,” says Kim McCleary, president of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, a leading funding and advocacy organization. “People lead diminished lives because of the illness.”
What patients want is scientific validation. In the study published last year, researchers led by Judy Mikovits, of the Whittemore Peterson Institute (WPI) in Reno, Nev., identified XMRV, an infectious retrovirus in the same family as the AIDS virus, in the blood of 67 percent of patients suffering from chronic-fatigue syndrome. “There’s no question it’s in the people we found it in,” says Mikovits. The NIH study detected the DNA of viruses related to XMRV in 87 percent of its patients, compared with only 7 percent of healthy controls. But other studies, including the CDC’s report and several in Europe, found nothing. Nobody knows why with any certainty. Viral testing methods differ among labs. It’s also possible that the virus is endemic to certain geographic areas and not to others. Perhaps most significant: some patients, including those studied by the WPI and the NIH, are much sicker than others. “It just highlights that there’s still a lot we don’t know about this virus,” says the CDC’s Dr. Steve Monroe.
Including: how do humans get XMRV in the first place? “No one has any idea,” says Mikovits. Researchers emphasize that it’s still not known if the virus family detected actually causes chronic-fatigue syndrome. “It could be a bystander effect,” says the NIH’s Dr. Harvey Alter. But the possibility of infection has raised concern. Earlier this year an international blood-bank association urged members to discourage chronic-fatigue patients from donating because of the potential risk of transmitting the virus. The American Red Cross goes even further, deferring indefinitely any donor who reveals she has been diagnosed with chronic-fatigue syndrome or an XMRV infection.
Today, doctors prescribe an array of treatments—including exercise programs, cognitive behavioral therapy, painkillers, and sleep medications—to relieve symptoms. But if chronic fatigue is caused by a virus, it raises the question: should patients be on antiretrovirals, the same drugs prescribed to people with HIV? Some chronic-fatigue patients are already taking them off-label, but they can have serious side effects. Dr. Andrew Mason, a virologist at the University of Alberta in Canada, says it’s time to launch a well-planned clinical trial to test the drugs’ effectiveness. It wasn’t until antibiotics were prescribed to treat peptic ulcers, says Mason, that the medical community finally accepted bacteria as the culprit. “It’s the only way to win this battle,” he says.
But, as with so many aspects of chronic-fatigue syndrome, there is disagreement here, too. Other specialists say the science needs to be on firmer ground before trials are launched. “Patients are clearly ill and suffering, and we need to address treatment as rapidly as we can,” says Dr. Ian Lipkin, director of Columbia’s Center for Infection and Immunity. “But the first order of business is to determine if the association is real.”
In early November U.S. researchers met with Lipkin, who is spearheading the next phase of research. The plan is to collect blood samples from at least 150 patients across the U.S. with similar disease characteristics, then compare them with healthy controls matched for age, sex, and geography so that scientists can sort out the confusion and establish as conclusively as possible if a viral link is valid.
Scientific discovery is never straightforward, much as we all want it to be. More often than not, it’s a tangle of hunches, studies, disagreements, false starts, tangents, and frustrations. One day, everybody hopes, the layers of wrapping will come off. The cause—or, very possibly, causes—of chronic-fatigue syndrome will become clear. Treatments will become available. And Laura Hillenbrand and millions of others can start reclaiming their vitality and their lives.
BBC News - Dorset woman with severe ME 'left to rot by the NHS'
BBC News - Dorset woman with severe ME 'left to rot by the NHS'
A Dorset woman with severe ME who has been unable to leave her bed for eight years has been "left to rot" by the NHS, her family has said.
A Dorset woman with severe ME who has been unable to leave her bed for eight years has been "left to rot" by the NHS, her family has said.
Sunday, November 28, 2010
CFS Central: NOV 29 PROTEST AT BARTS
CFS Central: NOV 29 PROTEST AT BARTS
Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful. When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls. “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”
For more information on the protest:
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm
Frustrated by the care at Barts, O’Grady made an appointment with a rheumatologist at a different hospital, who prescribed anti-inflammatories to treat the pain in her back and neck, which proved helpful. When she had given her Barts doctor the same list of rheumatologic symptoms, “he looked bored, said nothing and started cleaning his fingernails,” she recalls. “Another doctor claimed they didn’t need to run many tests on ME/CFS patients because “they would know the results simply by looking at the patients.”
For more information on the protest:
http://www.notsonice4me.co.uk/BARTS_PROTEST.htm
Raygent » Biomarkers and Blood Screening Tests: GenProbe (GPRO) and Genzyme(GENZ)
Raygent » Biomarkers and Blood Screening Tests: GenProbe (GPRO) and Genzyme(GENZ)
Blood Supply Screening Test-XMRV
XMRV is a retrovirus that is linked to chronic fatigue syndrome and there is concern that millions are infected. If XMRV can be transmitted through sexually or through transfusions there may be a need to protect the blood supply with a screening test similar to current test for HIV and hepatitis. Three companies are working on a test: Abbott Labs (ABT), GenProbe (GPRO) and Roche Molecular Diagnostics. GenProbe is a leader in blood screening with their Tigris diagnostic system that has 2009 revenues of $450M of which more than 50% are for blood screening.GenProbe is partnered with Novartis (NVS) and is developing a next generation blood screening system called Panther.
Next month on Dec 14-15 the FDA Blood Products Advisory Committee will feature scientific data and research regarding MLV-related (MLV-murine leukemia virus) Human Retroviruses such as XMRV. Recently the National Cancer Institute reported on a test that discriminates between mouse retroviruses and XMRV.
Blood Products Advisory Committee > December 14-15, 2010: Blood Products Advisory Committee Meeting Draft Agenda
Blood Supply Screening Test-XMRV
XMRV is a retrovirus that is linked to chronic fatigue syndrome and there is concern that millions are infected. If XMRV can be transmitted through sexually or through transfusions there may be a need to protect the blood supply with a screening test similar to current test for HIV and hepatitis. Three companies are working on a test: Abbott Labs (ABT), GenProbe (GPRO) and Roche Molecular Diagnostics. GenProbe is a leader in blood screening with their Tigris diagnostic system that has 2009 revenues of $450M of which more than 50% are for blood screening.GenProbe is partnered with Novartis (NVS) and is developing a next generation blood screening system called Panther.
Next month on Dec 14-15 the FDA Blood Products Advisory Committee will feature scientific data and research regarding MLV-related (MLV-murine leukemia virus) Human Retroviruses such as XMRV. Recently the National Cancer Institute reported on a test that discriminates between mouse retroviruses and XMRV.
Blood Products Advisory Committee > December 14-15, 2010: Blood Products Advisory Committee Meeting Draft Agenda
Friday, November 19, 2010
Minutes of the All Party Parliamentary Group on ME, 9 November 2010 | ME Association
Minutes of the All Party Parliamentary Group on ME, 9 November 2010 | ME Association
Whole page is worth reading, at least we are being debated...
"Concerns were raised about the delegation of responsibility from central Government to local care commissioners which has led to wide variations across England in the quantity and quality of specialist health care provided to M.E. patients. Children with M.E. and the severely affected are particularly badly provided for by the NHS in most areas."
Whole page is worth reading, at least we are being debated...
"Concerns were raised about the delegation of responsibility from central Government to local care commissioners which has led to wide variations across England in the quantity and quality of specialist health care provided to M.E. patients. Children with M.E. and the severely affected are particularly badly provided for by the NHS in most areas."
Sunday, November 14, 2010
Why are we banned from donating blood if we have CFS/ME?
SCOTTISH PARLIAMENT
WRITTEN ANSWER
11 November 2010
Index Heading: Health and Wellbeing
Mary Scanlon (Highlands and Islands) (Con): To ask the Scottish Executive
what evidence supports the banning of people with myalgic encephalomyelitis
from giving blood.
(S3W-37260)
Ms Shona Robison :
Following a recommendation in July 2010 by UK Blood Services Standing
Advisory Committee on the Care and Selection of Donors and the Joint
Professional Advisory Committee (JPAC), from 1 November 2010 across the UK,
those with a history of myalgic encephalomyelitis/chronic fatigue syndrome
(ME-CFS) are permanently deferred from donating blood for the protection of
their own health. This decision was made to bring the donor deferral
criteria for those in this group into line with those with other relapsing
conditions, such as multiple sclerosis.
SCOTTISH EXECUTIVE
WRITTEN ANSWER
11 November 2010
Index Heading: Health and Wellbeing
Mary Scanlon (Highlands and Islands) (Con): To ask the Scottish Executive
what evidence supports the banning of people with myalgic encephalomyelitis
from giving blood.
(S3W-37260)
Ms Shona Robison :
Following a recommendation in July 2010 by UK Blood Services Standing
Advisory Committee on the Care and Selection of Donors and the Joint
Professional Advisory Committee (JPAC), from 1 November 2010 across the UK,
those with a history of myalgic encephalomyelitis/chronic fatigue syndrome
(ME-CFS) are permanently deferred from donating blood for the protection of
their own health. This decision was made to bring the donor deferral
criteria for those in this group into line with those with other relapsing
conditions, such as multiple sclerosis.
SCOTTISH EXECUTIVE
Wednesday, October 27, 2010
Parliamentary Question: Lightning Process pilot study ethical approval | ME Association
Parliamentary Question: Lightning Process pilot study ethical approval | ME Association
Questions for Written Answer [House of Lords]
Tabled on 21 October and due for answer by 4 November.
The Countess of Mar to ask Her Majesty’s Government what assessment they have made of whether the decision by the South-West Research Ethics Committee to approve a pilot research study into the effects of the Lightning Process on children is consistent with the ethical guidance issued by the Medical Research Council to the effect that clinical trials should only include children where the relevant knowledge cannot be obtained by research on adults, and that research involving adults cannot provide the same benefits.
Questions for Written Answer [House of Lords]
Tabled on 21 October and due for answer by 4 November.
The Countess of Mar to ask Her Majesty’s Government what assessment they have made of whether the decision by the South-West Research Ethics Committee to approve a pilot research study into the effects of the Lightning Process on children is consistent with the ethical guidance issued by the Medical Research Council to the effect that clinical trials should only include children where the relevant knowledge cannot be obtained by research on adults, and that research involving adults cannot provide the same benefits.
Thursday, September 02, 2010
UK bans ME/CFS blood donations as of November 1, 2010 – Department of Health announces
UK bans ME/CFS blood donations as of November 1, 2010 – Department of Health announces
The ME Association (www.meassociation.org.uk) posted the following on Friday, Aug 27
The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.
In a brief email, Clara Swinson writes:
"As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
"The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC)."
The announcement has already been welcomed by contributors to ME/CFS internet forums around the world as further indication that the physical nature of the illness is being taken ever more seriously. Clara Swinson's email does not reveal the extent to which studies into the XRMV virus figured in Department of Health's thinking.
The ME Association (www.meassociation.org.uk) posted the following on Friday, Aug 27
The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.
In a brief email, Clara Swinson writes:
"As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
"The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC)."
The announcement has already been welcomed by contributors to ME/CFS internet forums around the world as further indication that the physical nature of the illness is being taken ever more seriously. Clara Swinson's email does not reveal the extent to which studies into the XRMV virus figured in Department of Health's thinking.
ME Free For All : Re: When doctors cannot diagnose disorders
ME Free For All : August 2010
Re: When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010
The headline of Nikki Abela Mercieca's article (When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010), about the difficulty of getting a diagnosis of M.E. (Myalgic Encephalomyelitis) may be read as an incomplete sentence, to which the consequence could be added: that millions of people, worldwide, are left, as our former Chief Medical Officer, Sir Liam Donaldson, acknowledged, in the wilderness. They become isolated because, when all the blood tests, to rule out other illnesses, have been conducted, further investigation ceases. Patients are too ill, often housebound or bedridden, to be able to get to the doctor, who has nothing to offer them anyway and the doctor won't make a house call for the same reason.
Nikki might have chosen "will not", rather than "cannot" because some doctors, all over the world, do diagnose Myalgic Encephalomyelitis and then the consequence becomes quite different: patients have a diagnosis that they are genuinely ill, not merely experiencing fatigue, due to overexertion, which might be remedied by lifestyle changes and that they are definitely not malingerers, hypochondriacs, or attention seekers. It also allows doctors and researchers, who do not assume that because a physical cause has not been found and therefore, the illness must be of psychiatric origin, the alternative option that there is an organic one yet to be discovered. But the fact that Nikki refers to the doctor who diagnosed Nicola Reiss with M.E. as "brave" suggests that there is something defiant or rebellious about those who challenge the medical establishment that M.E. is best thought of as a Chronic Fatigue Syndrome and simply managed with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). a principle generally followed, despite there being no reduction in those remaining ill for decades. Lamentably, there is no government funding for those wishing to conduct the promising biomedical research, which may provide the solution..
One would think that a finding as exciting as the presence of a new retrovirus, XMRV, in more than two-thirds of sufferers but only 3 or 4% of matched healthy people (Lombardi et al, October 2009), would stimulate trials to discover whether there is a causal relationship and possible treatment by antivirals. There are some intelligent hypotheses, such as that XMRV, might be a catalyst for other viruses lying dormant, or recurring, which might explain, for example, why some people who become infected with Epstein Barr (Glandular Fever), Herpes Zoster (Shingles), Flu or other viruses get over them, never to be troubled again, while others have M.E., possibly for life. But the work has had to be largely conducted using private or charitable funding, against a sceptical and sometimes hostile opposition from the established psychiatrists, whose theories have never been so contested.
It is debatable whether, as the unnamed doctor in Nikki's article asserts, "we cannot endorse what we cannot see", since we accept other illnesses without perfect knowledge but it is unforgivable to neglect searching for a cause when " what we know for sure is that they are suffering."
Yours sincerely
Dr John H Greensmith
ME Free For All.org
Re: When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010
The headline of Nikki Abela Mercieca's article (When doctors cannot diagnose disorders, Sunday Times of Malta, 29 August 2010), about the difficulty of getting a diagnosis of M.E. (Myalgic Encephalomyelitis) may be read as an incomplete sentence, to which the consequence could be added: that millions of people, worldwide, are left, as our former Chief Medical Officer, Sir Liam Donaldson, acknowledged, in the wilderness. They become isolated because, when all the blood tests, to rule out other illnesses, have been conducted, further investigation ceases. Patients are too ill, often housebound or bedridden, to be able to get to the doctor, who has nothing to offer them anyway and the doctor won't make a house call for the same reason.
Nikki might have chosen "will not", rather than "cannot" because some doctors, all over the world, do diagnose Myalgic Encephalomyelitis and then the consequence becomes quite different: patients have a diagnosis that they are genuinely ill, not merely experiencing fatigue, due to overexertion, which might be remedied by lifestyle changes and that they are definitely not malingerers, hypochondriacs, or attention seekers. It also allows doctors and researchers, who do not assume that because a physical cause has not been found and therefore, the illness must be of psychiatric origin, the alternative option that there is an organic one yet to be discovered. But the fact that Nikki refers to the doctor who diagnosed Nicola Reiss with M.E. as "brave" suggests that there is something defiant or rebellious about those who challenge the medical establishment that M.E. is best thought of as a Chronic Fatigue Syndrome and simply managed with Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). a principle generally followed, despite there being no reduction in those remaining ill for decades. Lamentably, there is no government funding for those wishing to conduct the promising biomedical research, which may provide the solution..
One would think that a finding as exciting as the presence of a new retrovirus, XMRV, in more than two-thirds of sufferers but only 3 or 4% of matched healthy people (Lombardi et al, October 2009), would stimulate trials to discover whether there is a causal relationship and possible treatment by antivirals. There are some intelligent hypotheses, such as that XMRV, might be a catalyst for other viruses lying dormant, or recurring, which might explain, for example, why some people who become infected with Epstein Barr (Glandular Fever), Herpes Zoster (Shingles), Flu or other viruses get over them, never to be troubled again, while others have M.E., possibly for life. But the work has had to be largely conducted using private or charitable funding, against a sceptical and sometimes hostile opposition from the established psychiatrists, whose theories have never been so contested.
It is debatable whether, as the unnamed doctor in Nikki's article asserts, "we cannot endorse what we cannot see", since we accept other illnesses without perfect knowledge but it is unforgivable to neglect searching for a cause when " what we know for sure is that they are suffering."
Yours sincerely
Dr John H Greensmith
ME Free For All.org
Saturday, August 28, 2010
PNAS Paper media blackout in UK???
"Jean Harrison" writes via COCURE@LISTSERV.NODAK.EDUI
"I've heard from quite a few British patients who noted that the major UK news outlets have not been reporting the findings of the PNAS paper. Apparently articles articles on scientific advances are vetted by the Science Media Centre, Science Advisory Panel: http://www.sciencemediacentre.org/pages/about/sap.htm . Perhaps there is a group above this centre to which appeals could be made?"
With Professor Simon Wessely, Institute of Psychiatry, King’s College, London, on there I am not surprised, tad audacious though!!!
"I've heard from quite a few British patients who noted that the major UK news outlets have not been reporting the findings of the PNAS paper. Apparently articles articles on scientific advances are vetted by the Science Media Centre, Science Advisory Panel: http://www.sciencemediacentre.org/pages/about/sap.htm . Perhaps there is a group above this centre to which appeals could be made?"
With Professor Simon Wessely, Institute of Psychiatry, King’s College, London, on there I am not surprised, tad audacious though!!!
Tuesday, August 24, 2010
Study Links Chronic Fatigue Syndrome to a Class of Virus - NYTimes.com
FINALLY!
Study Links Chronic Fatigue Syndrome to a Class of Virus - NYTimes.com
When the journal Science published an attention-grabbing study last fall linking chronic fatigue syndrome to a recently discovered retrovirus, many experts remained skeptical — especially after four other studies found no such association.
Now a second research team has reported a link between the fatigue syndrome and the same class of virus, a category known as MRV-related viruses. In a paper published Monday by The Proceedings of the National Academy of Sciences, scientists found gene sequences from several MRV-related viruses in blood cells from 32 out of 37 chronic-fatigue patients but only 3 of 44 healthy ones.
Study Links Chronic Fatigue Syndrome to a Class of Virus - NYTimes.com
When the journal Science published an attention-grabbing study last fall linking chronic fatigue syndrome to a recently discovered retrovirus, many experts remained skeptical — especially after four other studies found no such association.
Now a second research team has reported a link between the fatigue syndrome and the same class of virus, a category known as MRV-related viruses. In a paper published Monday by The Proceedings of the National Academy of Sciences, scientists found gene sequences from several MRV-related viruses in blood cells from 32 out of 37 chronic-fatigue patients but only 3 of 44 healthy ones.
Tuesday, August 10, 2010
More Clues To Fibromyalgia Pain
More Clues To Fibromyalgia Pain
Fibromyalgia patients have more "connectivity" between brain networks and regions of the brain involved in pain processing, which may help explain why sufferers feel pain even when there is no obvious cause, a new study suggests.
Fibromyalgia patients have more "connectivity" between brain networks and regions of the brain involved in pain processing, which may help explain why sufferers feel pain even when there is no obvious cause, a new study suggests.
Friday, August 06, 2010
Study involving children and the Lightning Process is unethical, says joint charity statement
Study involving children and the Lightning Process is unethical, says joint charity statement
A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and the Young ME Sufferers Trust.
In a joint statement issued yesterday evening (4 August 2010), the two charities say:
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.
A plan to recruit children with ME/Chronic Fatigue Syndrome to a scientific trial comparing the efficacy of an unproven psychologically-based training programme with specialist medical care is “unethical”, say two of Britain’s leading ME/CFS charities – The ME Association and the Young ME Sufferers Trust.
In a joint statement issued yesterday evening (4 August 2010), the two charities say:
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.
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