The creator of the sight A Humming Birds Guide speaking about having ME and how it has affected her life.
Showing posts with label me/cfs. Show all posts
Showing posts with label me/cfs. Show all posts
Friday, August 14, 2009
Monday, June 8, 2009
ME: Proof That It Isn't All In The Mind?
Source - UK Daily Telegraph
Belgian doctors, Professor Kenny De Meirleir and Dr Chris Roelant, have developed a simple test that, they claim, solves the mystery of 'yuppie flu'.
Anna's deterioration was rapid and unrelenting. One moment the pretty, young Scandinavian woman was at the peak of youthful vitality, newly married and excited about the future. The next, that future was much diminished, her life limited to the environs of her bedroom, and dictated to by the illness that had overwhelmed her.
It had started with persistent fatigue, muscle pain, and a growing sensitivity to light after a honeymoon trip to Mexico in the summer of 2006. By December, she was in a wheelchair. Three months later she was bedridden, her face pale, her features shrunken, barely able to move or talk, and being fed through a naso-gastric tube.
Anna – not her real name as her identity is being protected at the request of her family – was the subject of a short film shown at a conference in London last week. Her case, according to Professor Kenny De Meirleir of the Vrije Universiteit Brussel, Belgium, illustrates the worst ravages of myalgic encephalomyelitis/encephalopathy or ME, also known as chronic fatigue syndrome or post viral fatigue syndrome.
Once it was derided as "yuppie flu" because, following its emergence in the early Eighties, its "typical" victim was, supposedly, a high-achieving young professional. ME was also assumed by many doctors, and much of the public, to be psychosomatic in origin – if it existed at all.
In more enlightened times, ME is now accepted by the World Health Organisation, and Britain's medical royal colleges, as a complex, chronic disease of varying severity characterised by a complex set of symptoms. (In addition to extreme fatigue, and general malaise, there are musco-skeletal symptoms, especially muscle pain, brain and central nervous symptoms, evidence of immune system dysfunction, mood swings, depression etc.) According to the ME Association, there are 250,000 sufferers in Britain.
The debate about the cause of ME continues to flourish at conferences, in journals and on websites: are the symptoms a physical manifestation of a problem in the brain such as a chemical imbalance; is sustained stress or exertion to blame; or is ME the result of abnormal physiological functioning, with an organic cause, such as a viral or bacterial infection, or exposure to a toxic agent?
The answer is crucial because it determines the direction of research funding which has, according to Prof De Meirleir, for too long been skewed in favour of a psychiatric approach. He hopes to change that. After more than 20 years of investigation, and having assessed and treated thousands of patients in Europe and America, Prof De Meirleir, who is an internist at the Himmunitas Foundation in Brussels (a non-profit organisation specialising in chronic immune disorders), believes he has identified a mechanism to explain the development of ME that opens up new treatment options.
In addition, he and his fellow Belgian, Dr Chris Roelant, Chief Operating Officer of the diagnostics company Protea biopharma, have developed a self-diagnosing urine test for ME. If they are correct – and that must be determined by scrutiny of their research and use of the test by other scientists and doctors – then it marks an encouraging breakthrough. The symptoms of ME are wide-ranging and occur in a number of other conditions, so a diagnosis of ME is currently reached only after eliminating other causes. "This test will tell patients that it is not a problem between their ears, but a real physiological problem," insists Dr Roelant.Prof De Meirleir and Dr Roelant have, somewhat controversially, opted to go public with their findings before publication in a peer-reviewed journal. They say this is because of the implications of their research, especially for severely debilitated ME patients. At the Invest in ME conference in London last Friday they also raised the possibility of "transmissability" of the illness in this group of patients – another controversial claim.
Prof De Meirleir has never believed that ME is an "illness of the mind". Exercise physiology was his initial area of expertise and it was in this capacity that he was asked by a psychiatrist to assess some of his patients who were suffering from a mystery illness characterised by extreme fatigue.
"One of them was a banker who started work at 9am and had to finish at 11am because he was so exhausted," says Prof De Meirleir. "He did not appear to be suffering from any psychiatric disorder."
The case ignited the young doctor's interest. During a six-month sabbatical at the University of Pennsylvania in 1990, he heard about the "Lake Tahoe epidemic". In 1984, hundreds of people living in a small town on Lake Tahoe in California succumbed to a flu-like illness. The symptoms, including fatigue, neurological and immunological symptoms, persisted in just under 10 per cent of the population (about 300). This was followed by numerous reports of outbreaks of a similar illness around the world, and persuaded Prof De Meirleir of the likelihood of a causative agent being involved in ME, a fact that has heavily influenced his research interests. Since the early 1990s, he has built up a large clinical practice in Brussels where he sees around 2,000 new patients a year. Antibiotics are a cornerstone of his therapeutic approach, as dictated by his research.
In recent years, and in collaboration with a microbiologist, Dr Henry Butt, and his team at the University of Melbourne, Prof De Meirleir has focused on bacteria in the gastro-intestinal tract. "This is an obvious place to start since 80 per cent of immune system cells are located here," he says. A healthy, functioning gut is colonised by "good" bacteria that aid digestion and contribute to our wellbeing. Many ME patients suffer from multiple intestinal symptoms, and Prof De Meirleir believes that an overgrowth of "bad" bacteria, including enterococci, streptococci and prevotella, is to blame. These bacteria are normally present in very small quantities in a healthy gut, but can initiate a sequence of events leading to the multifarious symptoms of ME if they proliferate. (This research will be published in the journal In Vivo, in July).
These "bad" bacteria produce hydrogen sulphide (H2S)– a gas naturally occurring in the body, where it has several functions – in minute quantities. However, in larger quantities, it is a poisonous gas that suppresses the immune system, and damages the nervous system, according to Prof De Meirleir. (Hydrogen sulphide is produced by some animals in preparation for hibernation because it "shuts down" the body which, in effect, is what occurs in ME.) In addition, Prof De Meirleir described how he believes the gas reacts with metals, including mercury, introduced in minute amounts as contaminants in food. The form of mercury produced after reacting with hydrogen sulphide also disrupts the normal production of energy (known as the Krebs Cycle) by individual cells, and this, he says, would explain the energy shortfall experienced by ME patients.
Normal cellular functioning is inhibited and, over time, this generates damaging free radicals, highly reactive molecules that distort the structure of key proteins, such as enzymes and hormones, necessary for chemical reactions. This results in what Prof De Meirleir calls "aberrant" proteins (or prions), which lead to further symptoms as the body is increasingly compromised, and which he says may play a role in the transmissibility of ME.
The urine test, developed by Prof De Meirleir and Dr Roelant in their privately funded research, detects the presence of hydrogen sulphite metabolites, which they say confirm the presence of abnormal quantities of hydrogen sulphide-producing bacteria. The intensity of the colour change in the urine indicates the severity of the disease progression.
Not every ME patient progresses to its most severe form, says Prof De Meirleir, but the varying symptoms can all be explained by this proposed mechanism for the disease. In the worst cases of ME, he says it can be shown that there is an almost complete eradication of "good" bacteria (such as E. coli), the presence of a high number of "bad" bacteria in stools, metal deposits in tissues, and the presence of aberrant proteins in saliva. "What we have shown is that these patients have an organic disease involving one of the most toxic substances [H2S] that exist," he says.
So what causes the proliferation of harmful bacteria in the first place? There are, he says, many potential triggers ranging from food- borne bacterial (eg salmonella) infections, viruses, and toxins, or mental stress. He says many ME sufferers have a history of gut disorders including gluten and lactose intolerance, which may predispose them to colonisation by enterococci and streptococci.
Anna, the 28-year-old Scandinavian patient, is typical in this respect, he claims; she had gut problems in the past, including possible food poisoning while in Mexico. Her treatment focuses on short courses of antibiotics to decrease the numbers of bad bacteria, treatment with probiotic supplements to help restore the good bacteria, plus vitamin and mineral supplements. "She is improving," says Prof De Meirleir.
ME support groups and the medical profession are now considering Prof De Meirleir's work. However, Sir Peter Spencer, chief executive of Action for ME, welcomed the findings, albeit with a caveat: "It is always heartening to see new developments that might bring hope to the 250,000 people in the UK affected by this horrible illness.
"We look forward to seeing Professor Meirleir's findings published in a peer-reviewed journal so that we can develop a better understanding of this research."
Prof De Meirleir says that helping patients like Anna, of whom he has known many, is what has brought him to this point. "This has preoccupied me for more than 20 years. I told [the psychiatrists] we would find a cause, and I believe we have." There are many ME patients and their families who must hope that he is right.
Belgian doctors, Professor Kenny De Meirleir and Dr Chris Roelant, have developed a simple test that, they claim, solves the mystery of 'yuppie flu'.
Anna's deterioration was rapid and unrelenting. One moment the pretty, young Scandinavian woman was at the peak of youthful vitality, newly married and excited about the future. The next, that future was much diminished, her life limited to the environs of her bedroom, and dictated to by the illness that had overwhelmed her.
It had started with persistent fatigue, muscle pain, and a growing sensitivity to light after a honeymoon trip to Mexico in the summer of 2006. By December, she was in a wheelchair. Three months later she was bedridden, her face pale, her features shrunken, barely able to move or talk, and being fed through a naso-gastric tube.
Anna – not her real name as her identity is being protected at the request of her family – was the subject of a short film shown at a conference in London last week. Her case, according to Professor Kenny De Meirleir of the Vrije Universiteit Brussel, Belgium, illustrates the worst ravages of myalgic encephalomyelitis/encephalopathy or ME, also known as chronic fatigue syndrome or post viral fatigue syndrome.
Once it was derided as "yuppie flu" because, following its emergence in the early Eighties, its "typical" victim was, supposedly, a high-achieving young professional. ME was also assumed by many doctors, and much of the public, to be psychosomatic in origin – if it existed at all.
In more enlightened times, ME is now accepted by the World Health Organisation, and Britain's medical royal colleges, as a complex, chronic disease of varying severity characterised by a complex set of symptoms. (In addition to extreme fatigue, and general malaise, there are musco-skeletal symptoms, especially muscle pain, brain and central nervous symptoms, evidence of immune system dysfunction, mood swings, depression etc.) According to the ME Association, there are 250,000 sufferers in Britain.
The debate about the cause of ME continues to flourish at conferences, in journals and on websites: are the symptoms a physical manifestation of a problem in the brain such as a chemical imbalance; is sustained stress or exertion to blame; or is ME the result of abnormal physiological functioning, with an organic cause, such as a viral or bacterial infection, or exposure to a toxic agent?
The answer is crucial because it determines the direction of research funding which has, according to Prof De Meirleir, for too long been skewed in favour of a psychiatric approach. He hopes to change that. After more than 20 years of investigation, and having assessed and treated thousands of patients in Europe and America, Prof De Meirleir, who is an internist at the Himmunitas Foundation in Brussels (a non-profit organisation specialising in chronic immune disorders), believes he has identified a mechanism to explain the development of ME that opens up new treatment options.
In addition, he and his fellow Belgian, Dr Chris Roelant, Chief Operating Officer of the diagnostics company Protea biopharma, have developed a self-diagnosing urine test for ME. If they are correct – and that must be determined by scrutiny of their research and use of the test by other scientists and doctors – then it marks an encouraging breakthrough. The symptoms of ME are wide-ranging and occur in a number of other conditions, so a diagnosis of ME is currently reached only after eliminating other causes. "This test will tell patients that it is not a problem between their ears, but a real physiological problem," insists Dr Roelant.Prof De Meirleir and Dr Roelant have, somewhat controversially, opted to go public with their findings before publication in a peer-reviewed journal. They say this is because of the implications of their research, especially for severely debilitated ME patients. At the Invest in ME conference in London last Friday they also raised the possibility of "transmissability" of the illness in this group of patients – another controversial claim.
Prof De Meirleir has never believed that ME is an "illness of the mind". Exercise physiology was his initial area of expertise and it was in this capacity that he was asked by a psychiatrist to assess some of his patients who were suffering from a mystery illness characterised by extreme fatigue.
"One of them was a banker who started work at 9am and had to finish at 11am because he was so exhausted," says Prof De Meirleir. "He did not appear to be suffering from any psychiatric disorder."
The case ignited the young doctor's interest. During a six-month sabbatical at the University of Pennsylvania in 1990, he heard about the "Lake Tahoe epidemic". In 1984, hundreds of people living in a small town on Lake Tahoe in California succumbed to a flu-like illness. The symptoms, including fatigue, neurological and immunological symptoms, persisted in just under 10 per cent of the population (about 300). This was followed by numerous reports of outbreaks of a similar illness around the world, and persuaded Prof De Meirleir of the likelihood of a causative agent being involved in ME, a fact that has heavily influenced his research interests. Since the early 1990s, he has built up a large clinical practice in Brussels where he sees around 2,000 new patients a year. Antibiotics are a cornerstone of his therapeutic approach, as dictated by his research.
In recent years, and in collaboration with a microbiologist, Dr Henry Butt, and his team at the University of Melbourne, Prof De Meirleir has focused on bacteria in the gastro-intestinal tract. "This is an obvious place to start since 80 per cent of immune system cells are located here," he says. A healthy, functioning gut is colonised by "good" bacteria that aid digestion and contribute to our wellbeing. Many ME patients suffer from multiple intestinal symptoms, and Prof De Meirleir believes that an overgrowth of "bad" bacteria, including enterococci, streptococci and prevotella, is to blame. These bacteria are normally present in very small quantities in a healthy gut, but can initiate a sequence of events leading to the multifarious symptoms of ME if they proliferate. (This research will be published in the journal In Vivo, in July).
These "bad" bacteria produce hydrogen sulphide (H2S)– a gas naturally occurring in the body, where it has several functions – in minute quantities. However, in larger quantities, it is a poisonous gas that suppresses the immune system, and damages the nervous system, according to Prof De Meirleir. (Hydrogen sulphide is produced by some animals in preparation for hibernation because it "shuts down" the body which, in effect, is what occurs in ME.) In addition, Prof De Meirleir described how he believes the gas reacts with metals, including mercury, introduced in minute amounts as contaminants in food. The form of mercury produced after reacting with hydrogen sulphide also disrupts the normal production of energy (known as the Krebs Cycle) by individual cells, and this, he says, would explain the energy shortfall experienced by ME patients.
Normal cellular functioning is inhibited and, over time, this generates damaging free radicals, highly reactive molecules that distort the structure of key proteins, such as enzymes and hormones, necessary for chemical reactions. This results in what Prof De Meirleir calls "aberrant" proteins (or prions), which lead to further symptoms as the body is increasingly compromised, and which he says may play a role in the transmissibility of ME.
The urine test, developed by Prof De Meirleir and Dr Roelant in their privately funded research, detects the presence of hydrogen sulphite metabolites, which they say confirm the presence of abnormal quantities of hydrogen sulphide-producing bacteria. The intensity of the colour change in the urine indicates the severity of the disease progression.
Not every ME patient progresses to its most severe form, says Prof De Meirleir, but the varying symptoms can all be explained by this proposed mechanism for the disease. In the worst cases of ME, he says it can be shown that there is an almost complete eradication of "good" bacteria (such as E. coli), the presence of a high number of "bad" bacteria in stools, metal deposits in tissues, and the presence of aberrant proteins in saliva. "What we have shown is that these patients have an organic disease involving one of the most toxic substances [H2S] that exist," he says.
So what causes the proliferation of harmful bacteria in the first place? There are, he says, many potential triggers ranging from food- borne bacterial (eg salmonella) infections, viruses, and toxins, or mental stress. He says many ME sufferers have a history of gut disorders including gluten and lactose intolerance, which may predispose them to colonisation by enterococci and streptococci.
Anna, the 28-year-old Scandinavian patient, is typical in this respect, he claims; she had gut problems in the past, including possible food poisoning while in Mexico. Her treatment focuses on short courses of antibiotics to decrease the numbers of bad bacteria, treatment with probiotic supplements to help restore the good bacteria, plus vitamin and mineral supplements. "She is improving," says Prof De Meirleir.
ME support groups and the medical profession are now considering Prof De Meirleir's work. However, Sir Peter Spencer, chief executive of Action for ME, welcomed the findings, albeit with a caveat: "It is always heartening to see new developments that might bring hope to the 250,000 people in the UK affected by this horrible illness.
"We look forward to seeing Professor Meirleir's findings published in a peer-reviewed journal so that we can develop a better understanding of this research."
Prof De Meirleir says that helping patients like Anna, of whom he has known many, is what has brought him to this point. "This has preoccupied me for more than 20 years. I told [the psychiatrists] we would find a cause, and I believe we have." There are many ME patients and their families who must hope that he is right.
Thursday, April 9, 2009
Probiotic May Ease Fatigue Syndrome Anxiety
Taking a daily probiotic supplement appears to improve anxiety in patients with chronic fatigue syndrome, new Canadian research suggests, a finding that might one day impact how depression and other mental disorders are treated.
The researchers, led by A. Venket Rao of the University of Toronto, found that giving patients with chronic fatigue syndrome (CFS) a probiotic for two months not only boosted so-called "good" bacteria in their stomachs, it also led to a significant decrease in their anxiety symptoms.
A probiotic is a dietary supplement, most often in pill or powder form, that contains live bacteria such as Lactobacillus or Bifidobacteria. These bacteria help maintain gut flora, microbes in the stomach that perform a variety of functions, including aiding digestion, boosting the immune system and warding off harmful bacteria. "We were quite excited with the fact that these were positive results and we felt that probiotics truly have a role to play in the management of neurophysiological disorders such as anxiety, such as depression and other symptoms associated with that," Rao told CTV News. "Rather than going into medications, which may result in side effects, it's a safe, it's a very easy way to manage problems such as that."
The findings are published in the journal BMC Gut Pathogens. Patients who are diagnosed with CFS often experience a broad range of symptoms, the most significant being persistent fatigue.
Nearly all CFS patients also experience neuropsychological problems, such as cognitive dysfunction, sleep disturbances, anxiety and depression. In fact, according to the researchers, about half of all CFS patients meet the diagnostic criteria for an anxiety disorder or major depressive disorder. As well, CFS patients often complain of gastrointestinal problems and many are diagnosed with digestive disorders such as irritable bowel syndrome. Tests show that they often have lower levels of so-called "good" bacteria in their stomachs, which can regulate digestive activity.
All of this has led researchers to begin probing a link between gut bacteria and mental disorders and early findings suggest that bacteria levels may influence behaviour related to anxiety and depression. Researchers believe that probiotics "crowd out" the more toxic stomach bacteria that are linked to an increase in depression and other mood disorders, study co-author Dr. Alison C. Bested told CTV News.
For this study, Rao, Bested and their team gave 39 CFS patients either a daily dose of Lactobacillus casei or a placebo for two months. They found that 73 per cent of subjects taking the probiotic experienced an increase in levels of Lactobacillus and Bifidobacteria in the gut, which corresponded with a significant decrease in anxiety symptoms.
In the placebo group, only 37.5 per cent showed an increase in Bifidobacteria, while only 43.8 per cent showed an increase in Lactobacillus bacteria. The researchers found no statistically significant change in anxiety symptoms among this group. According to Bested, Bifidobacteria appears to increase levels of tryptophan in the brain, a chemical that "helps people feel better." Patients taking the probiotic also showed a marked improvement in their digestion, experiencing less bloating and gas and a reduction in inflammation. The findings are "huge," Bested said. "(Subjects) felt less anxious, they felt calmer, they felt better able to cope with their illness, they were sleeping better, had less heart palpitations and less symptoms of anxiety," she said. "We were pleasantly surprised, that people who were taking probiotics were able to lower their anxiety." Rao explained that the good bacteria produce "compounds that get to the brain and help the brain to manage problems associated with behavioural and mood problems, such as anxiety and depression."
He said the findings open "a door to a whole new field, and that is the relationship of gut micro flora, or gut bacteria, to many disorders - mental disorders being one of them. So it opens a door to many future research and applications in this area."
--------
(c) 2009 Bell Canada
Source
The researchers, led by A. Venket Rao of the University of Toronto, found that giving patients with chronic fatigue syndrome (CFS) a probiotic for two months not only boosted so-called "good" bacteria in their stomachs, it also led to a significant decrease in their anxiety symptoms.
A probiotic is a dietary supplement, most often in pill or powder form, that contains live bacteria such as Lactobacillus or Bifidobacteria. These bacteria help maintain gut flora, microbes in the stomach that perform a variety of functions, including aiding digestion, boosting the immune system and warding off harmful bacteria. "We were quite excited with the fact that these were positive results and we felt that probiotics truly have a role to play in the management of neurophysiological disorders such as anxiety, such as depression and other symptoms associated with that," Rao told CTV News. "Rather than going into medications, which may result in side effects, it's a safe, it's a very easy way to manage problems such as that."
The findings are published in the journal BMC Gut Pathogens. Patients who are diagnosed with CFS often experience a broad range of symptoms, the most significant being persistent fatigue.
Nearly all CFS patients also experience neuropsychological problems, such as cognitive dysfunction, sleep disturbances, anxiety and depression. In fact, according to the researchers, about half of all CFS patients meet the diagnostic criteria for an anxiety disorder or major depressive disorder. As well, CFS patients often complain of gastrointestinal problems and many are diagnosed with digestive disorders such as irritable bowel syndrome. Tests show that they often have lower levels of so-called "good" bacteria in their stomachs, which can regulate digestive activity.
All of this has led researchers to begin probing a link between gut bacteria and mental disorders and early findings suggest that bacteria levels may influence behaviour related to anxiety and depression. Researchers believe that probiotics "crowd out" the more toxic stomach bacteria that are linked to an increase in depression and other mood disorders, study co-author Dr. Alison C. Bested told CTV News.
For this study, Rao, Bested and their team gave 39 CFS patients either a daily dose of Lactobacillus casei or a placebo for two months. They found that 73 per cent of subjects taking the probiotic experienced an increase in levels of Lactobacillus and Bifidobacteria in the gut, which corresponded with a significant decrease in anxiety symptoms.
In the placebo group, only 37.5 per cent showed an increase in Bifidobacteria, while only 43.8 per cent showed an increase in Lactobacillus bacteria. The researchers found no statistically significant change in anxiety symptoms among this group. According to Bested, Bifidobacteria appears to increase levels of tryptophan in the brain, a chemical that "helps people feel better." Patients taking the probiotic also showed a marked improvement in their digestion, experiencing less bloating and gas and a reduction in inflammation. The findings are "huge," Bested said. "(Subjects) felt less anxious, they felt calmer, they felt better able to cope with their illness, they were sleeping better, had less heart palpitations and less symptoms of anxiety," she said. "We were pleasantly surprised, that people who were taking probiotics were able to lower their anxiety." Rao explained that the good bacteria produce "compounds that get to the brain and help the brain to manage problems associated with behavioural and mood problems, such as anxiety and depression."
He said the findings open "a door to a whole new field, and that is the relationship of gut micro flora, or gut bacteria, to many disorders - mental disorders being one of them. So it opens a door to many future research and applications in this area."
--------
(c) 2009 Bell Canada
Source
Saturday, March 28, 2009
Neuropsychological Performance in Persons With ME
Neuropsychological Performance in Persons With Chronic Fatigue Syndrome: Results From a Population-Based Study
Objective: To examine the neuropsychological function characterised in subjects with chronic fatigue syndrome (CFS) at the same time controlling for relevant confounding factors. CFS is associated with symptoms of neuropsychological dysfunction. Objective measures of neuropsychological performance have yielded inconsistent results possibly due to sample selection bias, diagnostic heterogeneity, co-morbid psychiatric disorders, and medication usage.
Method: CFS subjects (n = 58) and well controls (n = 104) from a population-based sample were evaluated, using standardised symptom severity criteria. Subjects who had major psychiatric disorders or took medications known to influence cognition were excluded. Neuropsychological function was measured using the Cambridge Neuropsychological Test Automated Battery (CANTAB).
Results: Compared with controls, CFS subjects exhibited significant decreases in motor speed as measured in the simple and five-choice movement segments of the CANTAB reaction time
task. CFS subjects also exhibited alterations in working memory as manifested by a less efficient search strategy on the spatial working memory task, fewer % correct responses on the spatial recognition task, and prolonged latency to a correct response on the pattern recognition task. A significantly higher percentage of CFS subjects versus controls exhibited evidence of neuropsychological impairment (defined by performance 1 standard deviation below the CANTAB normative mean) in tasks of motor speed and spatial working memory. Impairment in CFS subjects versus control subjects ranged from 20% versus 4.8% in five-choice movement time (p = .002) to 27.8% versus 10.6% in search strategy on the spatial working memory task (p = .006).
Conclusions: These results confirm and quantify alterations in motor speed and working memory in CFS subjects independent of co-morbid psychiatric disease and medication usage.
For a more in depth read of the research click here (PDF)
Source - Co-Cure.org
Objective: To examine the neuropsychological function characterised in subjects with chronic fatigue syndrome (CFS) at the same time controlling for relevant confounding factors. CFS is associated with symptoms of neuropsychological dysfunction. Objective measures of neuropsychological performance have yielded inconsistent results possibly due to sample selection bias, diagnostic heterogeneity, co-morbid psychiatric disorders, and medication usage.
Method: CFS subjects (n = 58) and well controls (n = 104) from a population-based sample were evaluated, using standardised symptom severity criteria. Subjects who had major psychiatric disorders or took medications known to influence cognition were excluded. Neuropsychological function was measured using the Cambridge Neuropsychological Test Automated Battery (CANTAB).
Results: Compared with controls, CFS subjects exhibited significant decreases in motor speed as measured in the simple and five-choice movement segments of the CANTAB reaction time
task. CFS subjects also exhibited alterations in working memory as manifested by a less efficient search strategy on the spatial working memory task, fewer % correct responses on the spatial recognition task, and prolonged latency to a correct response on the pattern recognition task. A significantly higher percentage of CFS subjects versus controls exhibited evidence of neuropsychological impairment (defined by performance 1 standard deviation below the CANTAB normative mean) in tasks of motor speed and spatial working memory. Impairment in CFS subjects versus control subjects ranged from 20% versus 4.8% in five-choice movement time (p = .002) to 27.8% versus 10.6% in search strategy on the spatial working memory task (p = .006).
Conclusions: These results confirm and quantify alterations in motor speed and working memory in CFS subjects independent of co-morbid psychiatric disease and medication usage.
For a more in depth read of the research click here (PDF)
Source - Co-Cure.org
Monday, March 23, 2009
Lower Ambulatory Blood Pressure in ME/CFS
Journal: Psychosom Med. 2009 Mar 17. [Epub ahead of print]
Authors: Newton JL, Sheth A, Shin J, Pairman J, Wilton K, Burt JA, Jones DE.
Affiliation: Institute for Cellular Medicine, University of
Newcastle, Newcastle-upon-Tyne, United Kingdom.
NLM Citation: PMID: 19297309
Objective: To examine blood pressure circadian rhythm in subjects with chronic fatigue syndrome (CFS) and appropriate normal and fatigued controls to correlate parameters of blood pressure regulation with perception of fatigue in an observational cohort study. The cause of CFS remains unknown and there are no effective treatments.
Methods: To address whether inactivity was a confounder, we performed a 24-hour ambulatory blood pressure monitoring in the following three subject groups: 1) CFS patients (Fukuda Diagnostic criteria) (n = 38); 2) normal controls (n = 120); and 3) a fatigue comparison group (n = 47) with the autoimmune liver disease primary biliary cirrhosis (PBC). All patients completed a measure of fatigue severity (Fatigue Impact Scale). In view of the different demographics between the patient groups, patients were age- and sex-matched on a case-by-case basis to normal controls and blood pressure parameters were compared.
Results: Compared with the control population, the CFS group had significantly lower systolic blood pressure (p < .0001) and mean arterial blood pressure (p = .0002) and exaggerated diurnal variation (p = .009). There was a significant inverse relationship between increasing fatigue and diurnal variation of blood pressure in both the CFS and PBC groups (p < .05). Conclusion: Lower blood pressure and abnormal diurnal blood pressure regulation occur in patients with CFS. We would suggest the need for a randomized, placebo-controlled trial of agents to increase blood pressure such as midodrine in CFS patients with an autonomic phenotype.
Source: Co-Cure.org
Posted @ Forum by Upnorth
Authors: Newton JL, Sheth A, Shin J, Pairman J, Wilton K, Burt JA, Jones DE.
Affiliation: Institute for Cellular Medicine, University of
Newcastle, Newcastle-upon-Tyne, United Kingdom.
NLM Citation: PMID: 19297309
Objective: To examine blood pressure circadian rhythm in subjects with chronic fatigue syndrome (CFS) and appropriate normal and fatigued controls to correlate parameters of blood pressure regulation with perception of fatigue in an observational cohort study. The cause of CFS remains unknown and there are no effective treatments.
Methods: To address whether inactivity was a confounder, we performed a 24-hour ambulatory blood pressure monitoring in the following three subject groups: 1) CFS patients (Fukuda Diagnostic criteria) (n = 38); 2) normal controls (n = 120); and 3) a fatigue comparison group (n = 47) with the autoimmune liver disease primary biliary cirrhosis (PBC). All patients completed a measure of fatigue severity (Fatigue Impact Scale). In view of the different demographics between the patient groups, patients were age- and sex-matched on a case-by-case basis to normal controls and blood pressure parameters were compared.
Results: Compared with the control population, the CFS group had significantly lower systolic blood pressure (p < .0001) and mean arterial blood pressure (p = .0002) and exaggerated diurnal variation (p = .009). There was a significant inverse relationship between increasing fatigue and diurnal variation of blood pressure in both the CFS and PBC groups (p < .05). Conclusion: Lower blood pressure and abnormal diurnal blood pressure regulation occur in patients with CFS. We would suggest the need for a randomized, placebo-controlled trial of agents to increase blood pressure such as midodrine in CFS patients with an autonomic phenotype.
Source: Co-Cure.org
Posted @ Forum by Upnorth
Thursday, February 26, 2009
A Sudden Ilness by Laura Hillenbrand -Edited
*due to brain fog I gave the author the wrong name, this post has been rectified
How My Life Changed
We were in Linc's car, an aging yellow Mercedes sedan, big and steady, with slippery blond seats and a deep, strumming idle. Lincoln called it Dr. Diesel. It was a Sunday night, March 22, 1987, nine-thirty. Rural Ohio was a smooth continuity of silence and darkness, except for a faintly golden seam where land met sky ahead, promising light and people and sound just beyond the tree line.
We were on our way back to Kenyon College after spring break. Linc, my best friend, was driving, his arm easy over the wheel. My boyfriend, Borden, sat behind him. I rode shotgun, a rose from Borden on my lap. Slung over my arm was a 1940s taffeta ball gown I had bought for $20 at a thrift shop. I was 19.
The conversation had dropped off. I was making plans for the dress and for my coming junior year abroad at the University of Edinburgh. My eyes strayed along the right shoulder of the road: a white mailbox, the timid glint of an abandoned pick-up's tail-light. The pavement racing under the car was gunmetal gray. We were doing 50 mph or so. A balled-up bag from a drive-through burger joint bumped against my ankle.
A deer.
At first, he was only a suggestion of an animal, emerging from the darkness by degrees: a muzzle, a sharp left eye. Then the headlights grasped him.
He was massive -- a web of antlers over his head, a heavy barrel, round haunches lifting him from the downward slope of the highway apron. Briefly, his forehooves rested on the line between the shoulder and the highway. I saw his knee bending, the hoof lifting: he was stepping into the car's path.
In the instant that I spent waiting for the deer to roll up over the car's hood and crash through the windshield I was aware of my body warm in the seat, Linc's face lit by the dash, Borden breathing in the back, the cool sulfur glow of the car's interior, the salty smell of the burger bag. I watched the deer's knee and waited for it to straighten. I drew a sharp breath.
The bumper missed the deer's chest by an inch, maybe two. The animal's muzzle passed so close that I could see the swirl of hair around his nostrils. Then he was gone behind us.
I blinked at the road. My eyes caught something else. A brilliant light appeared through the top of the windshield and arced straight ahead of the car at terrific speed. It was a meteor. It burned through the rising light of the horizon and vanished in the black place above the road and below the sky.
My breath escaped in a rush. I turned toward Linc to share my amazement. He was as loose as he had been, his eyes slowly panning the road, his long body unfolding over the seat. I looked back at Borden and could just make out his face. They had seen nothing.
I was about to speak when an intense wave of nausea surged through me. The smell from the bag on the floor was suddenly sickening. I wrapped my arms over my stomach and slid down in my seat. By the time we reached campus, half an hour later, I was doubled over, burning hot, and racked with chills. Borden called the campus paramedics. They hovered in the doorway, pronounced it food poisoning, and left...more
Laura Hillenbrand is the author of Seabiscuit (eventually made into a movie). Thanks for fellow butterfly Upnorth for finding the link and sharing it.
Laura Hillenbrand is the author of Seabiscuit (eventually made into a movie). Thanks for fellow butterfly Upnorth for finding the link and sharing it.
Thursday, January 22, 2009
ME/CFS and mitochondrial dysfunction
Source Link
PDF Warning for foggy, spoon (energy) limited individuals - this is a long research piece (16 pages). Warning for you to prepare, rather then opening it, seeing how big it is and being turned off.
In the meantime I will try to find if there is somewhere it is online for those who can't download PDFs.
Abstract: This study aims to improve the health of patients suffering from chronic fatigue syndrome (CFS) by interventions based on the biochemistry of the illness, specifically the function of mitochondria in producing ATP (adenosine triphosphate), the energy currency for all body functions, and recycling ADP (adenosine diphosphate) to replenish the ATP supply as needed. Patients attending a private medical practice specializing in CFS were diagnosed using the Centers for Disease Control criteria. In consultation with each patient, an integer on the Bell Ability Scale was assigned, and a blood sample was taken for the “ATP profile” test, designed for CFS and other fatigue conditions. Each test produced 5 numerical factors which describe the availability of ATP in neutrophils, the fraction complexed with magnesium, the efficiency of oxidative phosphorylation, and the transfer efficiencies of ADP into the mitochondria and ATP into the cytosol where the energy is used. With the consent of each of 71 patients and 53 normal, healthy controls the 5 factors have been collated and compared with the Bell Ability Scale. The individual numerical factors show that patients have different combinations of biochemical lesions. When the factors are combined, a remarkable correlation is observed between the degree of mitochondrial dysfunction and the severity of illness (P<0.001). Only 1 of the 71 patients overlaps the normal region. The “ATP profile” test is a powerful diagnostic tool and can differentiate patients who have fatigue and other symptoms as a result of energy wastage by stress and psychological factors from those who have insufficient energy due to cellular respiration dysfunction. The individual factors indicate which remedial actions, in the form of dietary supplements, drugs and detoxification, are most likely to be of benefit, and what further tests should be carried out.
PDF Warning for foggy, spoon (energy) limited individuals - this is a long research piece (16 pages). Warning for you to prepare, rather then opening it, seeing how big it is and being turned off.
In the meantime I will try to find if there is somewhere it is online for those who can't download PDFs.
Abstract: This study aims to improve the health of patients suffering from chronic fatigue syndrome (CFS) by interventions based on the biochemistry of the illness, specifically the function of mitochondria in producing ATP (adenosine triphosphate), the energy currency for all body functions, and recycling ADP (adenosine diphosphate) to replenish the ATP supply as needed. Patients attending a private medical practice specializing in CFS were diagnosed using the Centers for Disease Control criteria. In consultation with each patient, an integer on the Bell Ability Scale was assigned, and a blood sample was taken for the “ATP profile” test, designed for CFS and other fatigue conditions. Each test produced 5 numerical factors which describe the availability of ATP in neutrophils, the fraction complexed with magnesium, the efficiency of oxidative phosphorylation, and the transfer efficiencies of ADP into the mitochondria and ATP into the cytosol where the energy is used. With the consent of each of 71 patients and 53 normal, healthy controls the 5 factors have been collated and compared with the Bell Ability Scale. The individual numerical factors show that patients have different combinations of biochemical lesions. When the factors are combined, a remarkable correlation is observed between the degree of mitochondrial dysfunction and the severity of illness (P<0.001). Only 1 of the 71 patients overlaps the normal region. The “ATP profile” test is a powerful diagnostic tool and can differentiate patients who have fatigue and other symptoms as a result of energy wastage by stress and psychological factors from those who have insufficient energy due to cellular respiration dysfunction. The individual factors indicate which remedial actions, in the form of dietary supplements, drugs and detoxification, are most likely to be of benefit, and what further tests should be carried out.
Thursday, August 21, 2008
Zombie Science In ME/CFS
From mecfswa.org.au 15/8/08
Mental health researchers at The Institute of Psychiatry (London) are
currently undertaking a study of "social cognition". The project seeks to
find out whether "the processing of social information" is affected in
people with anorexia nervosa and whether or not people with anorexia can
recognise complex emotions in other people.
The anorexia group will be compared with healthy controls and also with
people who have "CFS", the latter being recruited through outpatient
services of The South London and Maudsley NHS Foundation Trust.
The project was announced in 2007 just before the publication of the NICE
Guideline on "CFS/ME".
Recruitment for this "research" will run until the end of 2008 and the
project will be completed in 2009.
(http://www.b-eat.co.uk/Supportingbeat/MediaResearch/Socialcognitioninanorexianervosa )
The study literature states: "The comparison with CFS will allow
(researchers) to gauge whether any social cognition deficits are unique to
anorexia, or reflect more global symptoms of psychiatric illness with marked
physical symptoms".
So there we have it in black and white: according to researchers at the IoP
(the home of stalwart supporters of CBT and GET for "CFS/ME" Professors
Simon Wessely and Trudie Chalder), "CFS" is "a psychiatric illness with
marked physical symptoms".
The background to the project states: "Anorexia nervosa and chronic fatigue
syndrome are classical psychosomatic disorders where response to social
threat is expressed somatically (e.g. Hatcher & House, 2003; Kato et al
2006; Schmidt et al 1997). Other similarities between these disorders
include strong female preponderance and overlapping personality
characteristics, such as being introverted and avoidant. Aberrant emotional
processing is a strong candidate as a maintaining factor for these disorders
(Schmidt & Treasure 2006)".
Is it by chance alone that this "research" coincides with the publication of
the NICE Guideline and that the only "evidence" upon which the NICE
Guideline Development Group relied is that of the Wessely School, whose
assumption about the nature of "CFS/ME" is that it is a psychosomatic
disorder and whose model and management recommendations are based on "fear
avoidance" and "deconditioning"?
It is surely remarkable that the beliefs of the Wessely School about
"CFS/ME" (in which they unequivocally include "ME/CFS") remain uninfluenced
by the ever-mounting biomedical evidence which proves their beliefs to be
seriously misinformed.
A possible explanation has been put forward by Professor Bruce Charlton,
Editor-in-Chief of Medical Hypotheses; Emeritus Professor of Public Policy
at the University of California and Reader in Evolutionary Psychiatry at the
University of Newcastle (UK).
Charlton is well-known for his campaign to breathe new life into academic
medicine in order to capture issues that matter to patients and which would
make a difference to their lives.
In a compelling Editorial (Zombie science: A sinister consequence of
evaluating scientific theories purely on the basis of enlightened
self-interest. Medical Hypotheses, 26th July 2008) Charlton debunks the
ideal of impartial and objective science. The following quotations apply
with particular resonance to the current ME/CFS situation in the UK:
"In the real world it looks like most scientists are quite willing to pursue
wrong ideas - so long as they are rewarded for doing so with a better chance
of achieving more grants, publications and status".
"This is 'enlightened self-interest' a powerful factor in scientific
evaluation because the primary criterion of the 'validity' of a theory is
whether or not acting upon it will benefit the career of the scientist;
'enlightened' because the canny career scientist will be looking ahead a few
years in order to prefer that theory which offers the best prospect of
netting the next grant, tenure, promotion or prestigious job opportunity".
"When a new theory is launched, it is unlikely to win converts unless (they)
are rewarded with a greater chance of generous research funding, the
opportunity to publish in prestigious journals and the hope of increased
status exemplified by admiration and respect from other scientists".
"Theories may become popular or even dominant purely because of their
association with immediate incentives and despite their scientific
weaknesses".
"Even the most conclusive 'hatchet jobs' done on phoney theories will fail
to kill, or even weaken, them when the phoney theories are backed up with
sufficient economic muscle in the form of funding. Scientists will gravitate
to where the money is so long as the funding stream is sufficiently deep and
sustained".
"Classical theory has it that a bogus hypothesis will be rejected when it
fails to predict 'reality', but (this) can be deferred almost indefinitely
by the elaboration of secondary hypotheses which then require further
testing (and generates more work for the bogus believers)".
"That the first theory is phoney, and always was phoney, is regarded as
simplistic, crass (and) a sign of lack of sophistication".
"And anyway, there are massive 'sunk costs' associated with the phoney
theory, including the reputations of numerous scientists who are now
successful and powerful on the back of the phoney theory, and who now
control the peer-review process (including the allocation of grants,
publications and jobs)".
"False theories can therefore prove very long-lived".
"The zombification of science (occurs) when science based on phoney theories
is serving a useful but non-scientific purpose (so it is) kept going by
continuous transfusions of cash from those whose interests it serves".
"For example, if a branch of pseudo-science based on a phoney theory is
valuable for political reasons (e.g. to justify government policies) then
real science expires and 'zombie science' evolves".
"(This) can be explained away by yet further phoney theoretical
elaborations, especially when there is monopolistic control of information".
"In a nutshell, zombie science is supported because it is useful propaganda
(and) is deployed in arenas such as political rhetoric, public
administration, management, public relations, marketing and the mass media
generally. Indeed, zombie science often comes across in the mass media as
being more plausible than real science".
"Personal careerist benefits seem easily able to overwhelm the benefits of
trying to establish the 'real world' of truth".
"In current science, there seems to be a greater possibility that large
scale change may be fashion rather than progress, and such change may be
serving propagandist goals rather than advancing scientific understanding".
"Modern science may have a lumbering pace, and its vast bulk means that once
it has begun to move in a particular direction, trying to deflect its path
is like stopping a charging rhinoceros".
"Perhaps funders co-operate, co-ordinate and collude, and therefore should
be regarded as a cartel".
To halt this raging rhinoceros, Charlton says: "Individual ambition should
ensure a sufficient supply of debunkers to keep the gardens of science
weeded of bogus theories, and to banish the zombies of science to the
graveyards where they belong".
The ME/CFS community can have no doubt that Charlton has hit the nail on the
head.
For how much longer must these desperate people be sacrificed on the defiled
altar of zombie science?
Mental health researchers at The Institute of Psychiatry (London) are
currently undertaking a study of "social cognition". The project seeks to
find out whether "the processing of social information" is affected in
people with anorexia nervosa and whether or not people with anorexia can
recognise complex emotions in other people.
The anorexia group will be compared with healthy controls and also with
people who have "CFS", the latter being recruited through outpatient
services of The South London and Maudsley NHS Foundation Trust.
The project was announced in 2007 just before the publication of the NICE
Guideline on "CFS/ME".
Recruitment for this "research" will run until the end of 2008 and the
project will be completed in 2009.
(http://www.b-eat.co.uk/Supportingbeat/MediaResearch/Socialcognitioninanorexianervosa )
The study literature states: "The comparison with CFS will allow
(researchers) to gauge whether any social cognition deficits are unique to
anorexia, or reflect more global symptoms of psychiatric illness with marked
physical symptoms".
So there we have it in black and white: according to researchers at the IoP
(the home of stalwart supporters of CBT and GET for "CFS/ME" Professors
Simon Wessely and Trudie Chalder), "CFS" is "a psychiatric illness with
marked physical symptoms".
The background to the project states: "Anorexia nervosa and chronic fatigue
syndrome are classical psychosomatic disorders where response to social
threat is expressed somatically (e.g. Hatcher & House, 2003; Kato et al
2006; Schmidt et al 1997). Other similarities between these disorders
include strong female preponderance and overlapping personality
characteristics, such as being introverted and avoidant. Aberrant emotional
processing is a strong candidate as a maintaining factor for these disorders
(Schmidt & Treasure 2006)".
Is it by chance alone that this "research" coincides with the publication of
the NICE Guideline and that the only "evidence" upon which the NICE
Guideline Development Group relied is that of the Wessely School, whose
assumption about the nature of "CFS/ME" is that it is a psychosomatic
disorder and whose model and management recommendations are based on "fear
avoidance" and "deconditioning"?
It is surely remarkable that the beliefs of the Wessely School about
"CFS/ME" (in which they unequivocally include "ME/CFS") remain uninfluenced
by the ever-mounting biomedical evidence which proves their beliefs to be
seriously misinformed.
A possible explanation has been put forward by Professor Bruce Charlton,
Editor-in-Chief of Medical Hypotheses; Emeritus Professor of Public Policy
at the University of California and Reader in Evolutionary Psychiatry at the
University of Newcastle (UK).
Charlton is well-known for his campaign to breathe new life into academic
medicine in order to capture issues that matter to patients and which would
make a difference to their lives.
In a compelling Editorial (Zombie science: A sinister consequence of
evaluating scientific theories purely on the basis of enlightened
self-interest. Medical Hypotheses, 26th July 2008) Charlton debunks the
ideal of impartial and objective science. The following quotations apply
with particular resonance to the current ME/CFS situation in the UK:
"In the real world it looks like most scientists are quite willing to pursue
wrong ideas - so long as they are rewarded for doing so with a better chance
of achieving more grants, publications and status".
"This is 'enlightened self-interest' a powerful factor in scientific
evaluation because the primary criterion of the 'validity' of a theory is
whether or not acting upon it will benefit the career of the scientist;
'enlightened' because the canny career scientist will be looking ahead a few
years in order to prefer that theory which offers the best prospect of
netting the next grant, tenure, promotion or prestigious job opportunity".
"When a new theory is launched, it is unlikely to win converts unless (they)
are rewarded with a greater chance of generous research funding, the
opportunity to publish in prestigious journals and the hope of increased
status exemplified by admiration and respect from other scientists".
"Theories may become popular or even dominant purely because of their
association with immediate incentives and despite their scientific
weaknesses".
"Even the most conclusive 'hatchet jobs' done on phoney theories will fail
to kill, or even weaken, them when the phoney theories are backed up with
sufficient economic muscle in the form of funding. Scientists will gravitate
to where the money is so long as the funding stream is sufficiently deep and
sustained".
"Classical theory has it that a bogus hypothesis will be rejected when it
fails to predict 'reality', but (this) can be deferred almost indefinitely
by the elaboration of secondary hypotheses which then require further
testing (and generates more work for the bogus believers)".
"That the first theory is phoney, and always was phoney, is regarded as
simplistic, crass (and) a sign of lack of sophistication".
"And anyway, there are massive 'sunk costs' associated with the phoney
theory, including the reputations of numerous scientists who are now
successful and powerful on the back of the phoney theory, and who now
control the peer-review process (including the allocation of grants,
publications and jobs)".
"False theories can therefore prove very long-lived".
"The zombification of science (occurs) when science based on phoney theories
is serving a useful but non-scientific purpose (so it is) kept going by
continuous transfusions of cash from those whose interests it serves".
"For example, if a branch of pseudo-science based on a phoney theory is
valuable for political reasons (e.g. to justify government policies) then
real science expires and 'zombie science' evolves".
"(This) can be explained away by yet further phoney theoretical
elaborations, especially when there is monopolistic control of information".
"In a nutshell, zombie science is supported because it is useful propaganda
(and) is deployed in arenas such as political rhetoric, public
administration, management, public relations, marketing and the mass media
generally. Indeed, zombie science often comes across in the mass media as
being more plausible than real science".
"Personal careerist benefits seem easily able to overwhelm the benefits of
trying to establish the 'real world' of truth".
"In current science, there seems to be a greater possibility that large
scale change may be fashion rather than progress, and such change may be
serving propagandist goals rather than advancing scientific understanding".
"Modern science may have a lumbering pace, and its vast bulk means that once
it has begun to move in a particular direction, trying to deflect its path
is like stopping a charging rhinoceros".
"Perhaps funders co-operate, co-ordinate and collude, and therefore should
be regarded as a cartel".
To halt this raging rhinoceros, Charlton says: "Individual ambition should
ensure a sufficient supply of debunkers to keep the gardens of science
weeded of bogus theories, and to banish the zombies of science to the
graveyards where they belong".
The ME/CFS community can have no doubt that Charlton has hit the nail on the
head.
For how much longer must these desperate people be sacrificed on the defiled
altar of zombie science?
Tuesday, August 19, 2008
Antiviral Drug Under FDA Review For ME/CFS
An interesting piece of news I came across on Immunesupport.com - Original Article
FDA accepts antiviral drug AmpligenR for review as first-ever ME/CFS therapeutic
After 30 years in development and testing, the experimental “antiviral/immune modulatory” drug Ampligen has been accepted by the FDA for review as potentially the first prescription drug approved in the U.S. for treatment of ME/CFS – specifically for certain patients with severe ME/CFS.
Delivered intravenously, typically twice weekly over a year or more, Ampligen (AMPLified GENetic activity) has been available in Belgium and Canada for ME/CFS and HIV treatment since 1996.
Ampligen (polyI:polyC12U) - still allowed only in specific clinical trial settings conducted under U.S. governmental authorization - is termed “a nucleic acid drug,” designed to “modulate” the body’s immune system. Its mechanism of action in ME/CFS “is not entirely clear,” but it is thought to act on two enzyme systems so as to help the immune system destroy viral RNA and speed the death of virus-affected cells. In particular it may “downregulate” an anti-viral pathway which research suggests has become “upregulated” in certain ME/CFS patients (the 2-5 Synthetase/RNase L anti-viral pathway).
The drug’s maker – Philadelphia-based Hemispherx Biopharma, submitted a New Drug Application to the FDA in 2007, and had been asked to answer a series of questions. The FDA’s acceptance of the drug for safety/efficacy review was based on receipt of the requested data. The maker reportedly suggests it is also researching oral delivery of the drug.
A "Who's-Who" of the world’s leading ME/CFS specialists have participated in Ampligen trials over the years
FDA accepts antiviral drug AmpligenR for review as first-ever ME/CFS therapeutic
After 30 years in development and testing, the experimental “antiviral/immune modulatory” drug Ampligen has been accepted by the FDA for review as potentially the first prescription drug approved in the U.S. for treatment of ME/CFS – specifically for certain patients with severe ME/CFS.
Delivered intravenously, typically twice weekly over a year or more, Ampligen (AMPLified GENetic activity) has been available in Belgium and Canada for ME/CFS and HIV treatment since 1996.
Ampligen (polyI:polyC12U) - still allowed only in specific clinical trial settings conducted under U.S. governmental authorization - is termed “a nucleic acid drug,” designed to “modulate” the body’s immune system. Its mechanism of action in ME/CFS “is not entirely clear,” but it is thought to act on two enzyme systems so as to help the immune system destroy viral RNA and speed the death of virus-affected cells. In particular it may “downregulate” an anti-viral pathway which research suggests has become “upregulated” in certain ME/CFS patients (the 2-5 Synthetase/RNase L anti-viral pathway).
The drug’s maker – Philadelphia-based Hemispherx Biopharma, submitted a New Drug Application to the FDA in 2007, and had been asked to answer a series of questions. The FDA’s acceptance of the drug for safety/efficacy review was based on receipt of the requested data. The maker reportedly suggests it is also researching oral delivery of the drug.
A "Who's-Who" of the world’s leading ME/CFS specialists have participated in Ampligen trials over the years
Wednesday, August 6, 2008
First Post & What Is ME/CFS
I think the first post is always the hardest and I myself always have a hard time starting it so I guess maybe dispensing with the small talk this time round might be best.
I've started this blog as a compliment to the Blue Butterflies Forum. The forum I started over a year ago. It's an alternative get together for sufferer's of ME/CFS & FM. I have had ME/CFS, since 2005, and I'm a bit of an alternative person.
What do I mean by alternative?
Well when it comes down to it I'm an atheist but I like to call myself an open minded atheist. I dabble in a bit of Buddhism, crystal work and other alternative healing, spirituality and paganism. All that jazz is what I mean by "alternative". So if you're a pagan, spiritualist, atheist or just open minded and curious you might like the forum. If it's not your cup of tea then that's fine, you can still read the blog of course!
As for the whole ME/CFS & FM question...
For all my writing skills I'm terrible at explaining exactly what Myalgic Encephalomyelitis or Fibromyalgia (I try to avoid having to explain it) is let alone writing it up so I'm going to take a piece from another site that has it so well written out I am beyond impressed.
This is for the Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). Fibromyalgia will be the next post.
What Is ME/CFS?
Taken from the WA Society Website
ME/CFS is a complex chronic disease affecting multiple body systems/organs. The disease is characterised by abnormal persistent or relapsing fatigue, post-exertional malaise/fatigue, sleep dysfunction, cognitive dysfunction, muscle/joint pain and headaches. Post-exertional malaise/fatigue, which is a hallmark of the disease, describes the worsening of symptoms and incapacitating malaise/fatigue experienced by those affected following physical or mental exertion, sometimes even of a trivial nature.
Individuals may also experience their own unique constellation of accompanying symptoms which may include impaired concentration and memory, swollen lymph nodes, recurrent feverishness, food intolerance, nausea, disorientation and cognitive and sensory overload amongst others (see Symptoms).
The severity of the disease and symptoms vary from one individual to another and can in very rare instances be fatal (see Severity). It is frequently known to develop following infection or may have a more gradual onset and has the potential to cause devastating and possibly lifelong disability in those affected.
Although the disease is generally referred to as ME/CFS, ME and CFS are not identical. To understand the differences between ME and CFS and the confusion and misunderstanding this has caused see Brief History.
If you'd like to learn more please follow this link
Thanks for reading
Bonnie
I've started this blog as a compliment to the Blue Butterflies Forum. The forum I started over a year ago. It's an alternative get together for sufferer's of ME/CFS & FM. I have had ME/CFS, since 2005, and I'm a bit of an alternative person.
What do I mean by alternative?
Well when it comes down to it I'm an atheist but I like to call myself an open minded atheist. I dabble in a bit of Buddhism, crystal work and other alternative healing, spirituality and paganism. All that jazz is what I mean by "alternative". So if you're a pagan, spiritualist, atheist or just open minded and curious you might like the forum. If it's not your cup of tea then that's fine, you can still read the blog of course!
As for the whole ME/CFS & FM question...
For all my writing skills I'm terrible at explaining exactly what Myalgic Encephalomyelitis or Fibromyalgia (I try to avoid having to explain it) is let alone writing it up so I'm going to take a piece from another site that has it so well written out I am beyond impressed.
This is for the Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). Fibromyalgia will be the next post.
What Is ME/CFS?
Taken from the WA Society Website
ME/CFS is a complex chronic disease affecting multiple body systems/organs. The disease is characterised by abnormal persistent or relapsing fatigue, post-exertional malaise/fatigue, sleep dysfunction, cognitive dysfunction, muscle/joint pain and headaches. Post-exertional malaise/fatigue, which is a hallmark of the disease, describes the worsening of symptoms and incapacitating malaise/fatigue experienced by those affected following physical or mental exertion, sometimes even of a trivial nature.
Individuals may also experience their own unique constellation of accompanying symptoms which may include impaired concentration and memory, swollen lymph nodes, recurrent feverishness, food intolerance, nausea, disorientation and cognitive and sensory overload amongst others (see Symptoms).
The severity of the disease and symptoms vary from one individual to another and can in very rare instances be fatal (see Severity). It is frequently known to develop following infection or may have a more gradual onset and has the potential to cause devastating and possibly lifelong disability in those affected.
Although the disease is generally referred to as ME/CFS, ME and CFS are not identical. To understand the differences between ME and CFS and the confusion and misunderstanding this has caused see Brief History.
If you'd like to learn more please follow this link
Thanks for reading
Bonnie
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