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home:diseases:cfs [07.06.2019] – [Research] sallieqhome:diseases:cfs [09.14.2022] (current) – external edit 127.0.0.1
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 ====== Chronic fatigue syndrome (myalgic encephalomyelitis) ====== ====== Chronic fatigue syndrome (myalgic encephalomyelitis) ======
  
-<relatedarticle> [[home:diseases:anemia|Anemia]] </article>+<relatedarticles> [[home:diseases:anemia|Anemia]], [[home:othertreatments:othertreatments|Thyroid hormone and mineral supplementation]]</article>
  
 ===== Introduction ===== ===== Introduction =====
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 Chronic fatigue syndrome (CFS) is the most common name given to a variably debilitating disorder or disorders generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months.  Other symptoms include musculoskeletal pain, sleep disturbance, impaired concentration, and headaches. Chronic fatigue syndrome (CFS) is the most common name given to a variably debilitating disorder or disorders generally defined by persistent fatigue unrelated to exertion, not substantially relieved by rest and accompanied by the presence of other specific symptoms for a minimum of six months.  Other symptoms include musculoskeletal pain, sleep disturbance, impaired concentration, and headaches.
 [[https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html|New recognition for chronic fatigue]] [[https://www.nytimes.com/2017/11/27/well/new-recognition-for-chronic-fatigue.html|New recognition for chronic fatigue]]
-Almost every aspect of CFS is the subject of disagreement and uncertainty(({{pubmed>long:16835542}})) – even diagnosis. There are no characteristic laboratory abnormalities to diagnose CFS,(({{pubmed>long:14702202}})) so testing is used to rule out other potential causes for symptoms. When symptoms are attributable to certain other conditions, the diagnosis of CFS is excluded.+Almost every aspect of CFS is the subject of disagreement and uncertainty(({{pmid>long:16835542}})) – even diagnosis. There are no characteristic laboratory abnormalities to diagnose CFS,(({{pmid>long:14702202}})) so testing is used to rule out other potential causes for symptoms. When symptoms are attributable to certain other conditions, the diagnosis of CFS is excluded.
  
  
  
-<blockquote>Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease of unknown etiology affecting more than one million Americans and millions of individuals worldwide (1, 2). ME/CFS is characterized by persistent or relapsing unexplained fatigue of at least 6-mo duration that is not alleviated by rest and results in a substantial reduction in previous levels of occupational, educational, social, and personal activities (2–5). In ME/CFS patients, fatigue is just one of multiple incapacitating symptoms that include cognitive impairment, postexertional malaise, unrefreshing sleep, headaches, myalgias, arthralgias, sore throats, lymphadenopathy, hypersensitivity to noise, light, or certain food items, and autonomic disturbances (4). These symptoms often cluster in each patient in varying combinations and intensity.(({{pubmed>long:28760971}}))+<blockquote>Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease of unknown etiology affecting more than one million Americans and millions of individuals worldwide (1, 2). ME/CFS is characterized by persistent or relapsing unexplained fatigue of at least 6-mo duration that is not alleviated by rest and results in a substantial reduction in previous levels of occupational, educational, social, and personal activities (2–5). In ME/CFS patients, fatigue is just one of multiple incapacitating symptoms that include cognitive impairment, postexertional malaise, unrefreshing sleep, headaches, myalgias, arthralgias, sore throats, lymphadenopathy, hypersensitivity to noise, light, or certain food items, and autonomic disturbances (4). These symptoms often cluster in each patient in varying combinations and intensity.(({{pmid>long:28760971}}))
  
  
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-The absence of well-defined biomarkers coupled with inability to point to a single somatic cause (e.g. an infectious process) has had a devastating effect on the way patients with CFS/ME are diagnosed, treated and regarded. Even though CFS/ME is now widely regarded as a "real" disease, the most popular explanation for this illness remains that it represents an extreme form of "medically unexplained illnesses." As such, many psychiatrists have speculated that the condition is the product of maladaptive behaviors, failure to self-regulate, or any of dozens of others profoundly psychological or behavioral causes.(({{pubmed>long:18267050}}))+The absence of well-defined biomarkers coupled with inability to point to a single somatic cause (e.g. an infectious process) has had a devastating effect on the way patients with CFS/ME are diagnosed, treated and regarded. Even though CFS/ME is now widely regarded as a "real" disease, the most popular explanation for this illness remains that it represents an extreme form of "medically unexplained illnesses." As such, many psychiatrists have speculated that the condition is the product of maladaptive behaviors, failure to self-regulate, or any of dozens of others profoundly psychological or behavioral causes.(({{pmid>long:18267050}}))
  
-Three types of overlap occur among the disease states chronic fatigue syndrome (CFS), fibromyalgia (FM), multiple chemical sensitivity (MCS) and posttraumatic stress disorder (PTSD). They share common symptoms.   (({{pubmed>long:11461161}}))  +Three types of overlap occur among the disease states chronic fatigue syndrome (CFS), fibromyalgia (FM), multiple chemical sensitivity (MCS) and posttraumatic stress disorder (PTSD). They share common symptoms.   (({{pmid>long:11461161}}))  
  
 An infectious etiology of chronic fatigue syndrome has long been suspected. Today, scientific evidence provides a growing, if not conclusive, link between infectious agents and CFS. For example, a 2011 study detected hundreds of unique proteins in the cerebrospinal fluid of patients with CFS as compared to healthy controls. An infectious etiology of chronic fatigue syndrome has long been suspected. Today, scientific evidence provides a growing, if not conclusive, link between infectious agents and CFS. For example, a 2011 study detected hundreds of unique proteins in the cerebrospinal fluid of patients with CFS as compared to healthy controls.
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 Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome. Had the agency done nothing in response to this epidemic, patients would now be better off. The name functioned as a kind of social punishment. Patients were branded malingerers by families, friends, journalists and insurance companies, and were denied medical care. (It’s no coincidence that suicide is among the three leading causes of death among sufferers.) Soon the malady came to be widely considered a personality disorder or something that sufferers brought upon themselves. A recent study financed by the C.D.C. suggested that childhood trauma or sexual abuse, combined with a genetic inability to handle stress, is a key risk factor for chronic fatigue syndrome.
  
-//**Hillary Johnson**, [[http://www.nytimes.com/2009/10/21/opinion/21johnson.html|New York Times]]//</blockquote>+//**Hillary Johnson**, [[https://www.nytimes.com/2009/10/21/opinion/21johnson.html|New York Times]]//</blockquote>
  
  
-However, CFS is a serious disease. The gentleness of its name barely suggests how debilitating the affliction is, and the use of the term "fatigue" diminishes the legitimacy of the illness. According to a survey of medical trainees at a school in the United States, a condition described as chronic fatigue syndrome may be considered less serious than a condition described as myalgic encephalopathy.(({{pubmed>long:11928774}}))+However, CFS is a serious disease. The gentleness of its name barely suggests how debilitating the affliction is, and the use of the term "fatigue" diminishes the legitimacy of the illness. According to a survey of medical trainees at a school in the United States, a condition described as chronic fatigue syndrome may be considered less serious than a condition described as myalgic encephalopathy.(({{pmid>long:11928774}}))
  
 =====Diagnosis and testing===== =====Diagnosis and testing=====
    
-In the U.S., the most commonly used diagnostic criteria and definition of CFS/ME for research and clinical purposes were published by the United States Centers for Disease Control and Prevention (CDC).(({{pubmed>long:12562565}})) The Centers for Disease Control definition of CFS [[http://www.cdc.gov/cfs/general/diagnosis/index.html|requires]] the following two criteria be fulfilled:+In the U.S., the most commonly used diagnostic criteria and definition of CFS/ME for research and clinical purposes were published by the United States Centers for Disease Control and Prevention (CDC).(({{pmid>long:12562565}})) The Centers for Disease Control definition of CFS [[https://www.cdc.gov/cfs/general/diagnosis/index.html|requires]] the following two criteria be fulfilled:
   - A new onset (not lifelong) of unexplained, persistent fatigue unrelated to exertion and not substantially relieved by rest, that causes a significant reduction in previous activity levels.   - A new onset (not lifelong) of unexplained, persistent fatigue unrelated to exertion and not substantially relieved by rest, that causes a significant reduction in previous activity levels.
   - Four or more of the following symptoms that last six months or longer: impaired memory or concentration; post-exertional malaise, where physical or mental exertions bring on "extreme, prolonged exhaustion and sickness"; unrefreshing sleep; muscle pain (myalgia); pain in multiple joints (arthralgia); headaches of a new kind or greater severity; sore throat, frequent or recurring; tender lymph nodes (cervical or axillary).   - Four or more of the following symptoms that last six months or longer: impaired memory or concentration; post-exertional malaise, where physical or mental exertions bring on "extreme, prolonged exhaustion and sickness"; unrefreshing sleep; muscle pain (myalgia); pain in multiple joints (arthralgia); headaches of a new kind or greater severity; sore throat, frequent or recurring; tender lymph nodes (cervical or axillary).
  
-There are no characteristic laboratory abnormalities to diagnose CFS/ME,(({{pubmed>long:14702202}})) so testing is used to rule out other potential causes for symptoms.(({{pubmed>long:7978722}})) When symptoms are attributable to certain other conditions, the diagnosis of CFS is excluded. +There are no characteristic laboratory abnormalities to diagnose CFS/ME,(({{pmid>long:14702202}})) so testing is used to rule out other potential causes for symptoms.(({{pmid>long:7978722}})) When symptoms are attributable to certain other conditions, the diagnosis of CFS is excluded. 
  
 The absence of clear laboratory markers affects not only how CFS is diagnosed, but whether or not it is viewed as fundamentally psychological illness, and how it is treated. The absence of clear laboratory markers affects not only how CFS is diagnosed, but whether or not it is viewed as fundamentally psychological illness, and how it is treated.
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 ==== Research ==== ==== Research ====
  
-There is considerable evidence that mitochondrial dysfunction is present in some CFS patients. (({{pubmed>long:19436827}}))+There is considerable evidence that mitochondrial dysfunction is present in some CFS patients. (({{pmid>long:19436827}}))
  
-This work contributes key elements to the development of ME/CFS diagnostics, a crucial step required for discovering a therapy for any disease of unknown origin.   (({{pubmed>long:30563204}}))  +This work contributes key elements to the development of ME/CFS diagnostics, a crucial step required for discovering a therapy for any disease of unknown origin.   (({{pmid>long:30563204}}))  
  
-Disturbances in fatty acid and lipid metabolism  (({{pubmed>long:28059425}}))  +Disturbances in fatty acid and lipid metabolism  (({{pmid>long:28059425}}))  
 + 
 +Selenium and iodine are essential for thyroid hormone synthesis and function. (({{pmid>long:26088475}}))  
      
-Altered composition of the gut microbiome    (({{pubmed>long:27338587}}))  +Altered composition of the gut microbiome    (({{pmid>long:27338587}}))  
  
-A decisive infectious trigger may then lead to immunization against autoantigens involved in aerobic energy production and/or hormone receptors and ion channel proteins, producing postexertional malaise and ME/CFS, affecting both muscle and brain.(({{pubmed>long:29497420}}))+A decisive infectious trigger may then lead to immunization against autoantigens involved in aerobic energy production and/or hormone receptors and ion channel proteins, producing postexertional malaise and ME/CFS, affecting both muscle and brain.(({{pmid>long:29497420}}))
  
  
- NK cells are a necessary component of the immunological process and aberrations in their functional processes, including equivocal levels of NK cells and cytotoxic activity pre-empts recurrent viral infections, autoimmune diseases and altered inflammatory responses. NK cells are implicated in a number of diseases including chronic fatigue syndrome (CFS)(({{pubmed>long:    26000145}}))+ NK cells are a necessary component of the immunological process and aberrations in their functional processes, including equivocal levels of NK cells and cytotoxic activity pre-empts recurrent viral infections, autoimmune diseases and altered inflammatory responses. NK cells are implicated in a number of diseases including chronic fatigue syndrome (CFS)(({{pmid>long:    26000145}}))
  
-Patients with CFS showed abnormalities in 20 metabolic pathways. (({{pubmed>long:    27573827}}))+Patients with CFS showed abnormalities in 20 metabolic pathways. (({{pmid>long:    27573827}}))
  
  
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 <blockquote>My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. But CFS, which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it. <blockquote>My HIV patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have HIV. But CFS, which impacts a million people in the United States alone, has had a small fraction of the research dollars directed towards it.
  
-//**Nancy Klimas, M.D.,** [[http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome|New York Times]]//</blockquote>+//**Nancy Klimas, M.D.,** [[https://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome|New York Times]]//</blockquote>
  
 The systematic use of stimulants to manage symptoms of fatigue is not recommended. The systematic use of stimulants to manage symptoms of fatigue is not recommended.
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 ===== Metabolic evidence ===== ===== Metabolic evidence =====
  
-As reported in The Economist " Robert Naviaux of the University of California, San Diego, and his colleagues published evidence(({{pubmed>long:27573827}})) that the metabolisms of those diagnosed with CFS are all changing in the same way."+As reported in The Economist " Robert Naviaux of the University of California, San Diego, and his colleagues published evidence(({{pmid>long:27573827}})) that the metabolisms of those diagnosed with CFS are all changing in the same way."
  
 in 2016, "Dr Naviaux and his team collected and analysed blood samples from 45 people who had been diagnosed with CFS, and also from 39 controls who were free of any CFS-related symptom. They then trawled through those samples looking at the levels of 612 specific chemicals, known as metabolites, which are produced during the day-to-day operations of living cells. in 2016, "Dr Naviaux and his team collected and analysed blood samples from 45 people who had been diagnosed with CFS, and also from 39 controls who were free of any CFS-related symptom. They then trawled through those samples looking at the levels of 612 specific chemicals, known as metabolites, which are produced during the day-to-day operations of living cells.
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-In October 2009, we reported the first direct isolation of infectious xenotropic murine leukemia virus-related virus (XMRV). In that study, we used a combination of biological amplification and molecular enhancement techniques to detect XMRV in more than 75% of 101 patients with chronic fatigue syndrome (CFS).(({{pubmed>long:21178474}}))+In October 2009, we reported the first direct isolation of infectious xenotropic murine leukemia virus-related virus (XMRV). In that study, we used a combination of biological amplification and molecular enhancement techniques to detect XMRV in more than 75% of 101 patients with chronic fatigue syndrome (CFS).(({{pmid>long:21178474}}))
  
 +[[https://sacfs.asn.au/download/XMRV%20-%20Supporting%20Online%20Material.pdf|Detection of an Infectious Retrovirus, XMRV, in Blood Cells of Patients with Chronic Fatigue Syndrome]]
  
 ===== Impairment of immune function ===== ===== Impairment of immune function =====
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 <relatedarticles> [[home:pathogenesis:microbiota:detecting|Detecting bacteria]], [[home:pathogenesis:kochs_postulates|Koch's postulates]] </article> <relatedarticles> [[home:pathogenesis:microbiota:detecting|Detecting bacteria]], [[home:pathogenesis:kochs_postulates|Koch's postulates]] </article>
  
-An infectious etiology of Chronic Fatigue Syndrome has long been suspected and investigated, often with inconsistent results.(({{pubmed>long:20827765}})) (({{pubmed>long:21543496}})) The debate over whether XMRV, EBV, or any other single pathogen causes CFS reflects an over-reliance on the antiquated model of disease set forth by Koch's postulates – namely that a pathogen must be: found in all cases of the disease examined, prepared and maintained in a pure culture, capable of producing the original infection, even after several generations in culture, and retrievable from an inoculated animal and cultured again. For all their lingering influence, Koch's postulates never anticipated the era of the human metagenome in which thousands of difficult or impossible-to-culture species of bacteria – rather than just one – contribute to a single disease state.+An infectious etiology of Chronic Fatigue Syndrome has long been suspected and investigated, often with inconsistent results.(({{pmid>long:20827765}})) (({{pmid>long:21543496}})) The debate over whether XMRV, EBV, or any other single pathogen causes CFS reflects an over-reliance on the antiquated model of disease set forth by Koch's postulates – namely that a pathogen must be: found in all cases of the disease examined, prepared and maintained in a pure culture, capable of producing the original infection, even after several generations in culture, and retrievable from an inoculated animal and cultured again. For all their lingering influence, Koch's postulates never anticipated the era of the human metagenome in which thousands of difficult or impossible-to-culture species of bacteria – rather than just one – contribute to a single disease state.
  
  
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-In a 2011 study appearing in //PLoS One//, Schutzer and colleagues analyzed spinal fluid samples from three groups — 11 healthy people, 43 diagnosed with chronic fatigue syndrome and 25 previously treated for Lyme disease but who were still experiencing cognitive problems and fatigue.(({{pubmed>long:21383843}})) Analysis of the fluid samples detected more than 2,600 proteins in each group. Most of the proteins appeared in all three groups. But 692 proteins turned up only in the Lyme patients and 738 others showed up only in the chronic fatigue group.+In a 2011 study appearing in //PLoS One//, Schutzer and colleagues analyzed spinal fluid samples from three groups — 11 healthy people, 43 diagnosed with chronic fatigue syndrome and 25 previously treated for Lyme disease but who were still experiencing cognitive problems and fatigue.(({{pmid>long:21383843}})) Analysis of the fluid samples detected more than 2,600 proteins in each group. Most of the proteins appeared in all three groups. But 692 proteins turned up only in the Lyme patients and 738 others showed up only in the chronic fatigue group.
  
 On its most basic level, this study offers strong evidence of a biological component for Lyme and CFS. The presence of so many unique proteins suggests that these are proteins are either created directly by microbes or are the results of microbes acting on the human genome. On its most basic level, this study offers strong evidence of a biological component for Lyme and CFS. The presence of so many unique proteins suggests that these are proteins are either created directly by microbes or are the results of microbes acting on the human genome.
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 ==== XMRV ====  ==== XMRV ==== 
  
-In 2009, researchers published a paper in the journal //Science// announcing that in 67% of the samples of 101 chronic fatigue syndrome patients (as compared to 3.7% of 218 healthy controls), they had found a retrovirus called XMRV: xenotropic murine leukemia virus-related virus.(({{pubmed>long:19815723}})) However, numerous other labs trying to duplicate the results of the //Science// paper were unable to find the retrovirus in patients with the disease.(({{pubmed>long:21543496}})) In the wake of recent studies,(({{pubmed>long:21543496}})) editors for the journal //Science// have gone so far as to ask the original authors to retract their paper.(({{pubmed>long:21646307}}))+In 2009, researchers published a paper in the journal //Science// announcing that in 67% of the samples of 101 chronic fatigue syndrome patients (as compared to 3.7% of 218 healthy controls), they had found a retrovirus called XMRV: xenotropic murine leukemia virus-related virus.(({{pmid>long:19815723}})) However, numerous other labs trying to duplicate the results of the //Science// paper were unable to find the retrovirus in patients with the disease.(({{pmid>long:21543496}})) In the wake of recent studies,(({{pmid>long:21543496}})) editors for the journal //Science// have gone so far as to ask the original authors to retract their paper.(({{pmid>long:21646307}}))
  
-For many scientists, the inability of other labs to confirm the results raised questions about the validity of the retroviral finding. Others such as  W. Ian Lipkin [[http://blogs.wsj.com/health/2010/09/08/world-class-virus-hunter-to-head-up-the-latest-xmrv-study/|have suggested]] that other factors may be to blame: varying definitions of CFS could contribute to conflicting reports, as well as differences in the way labs process blood samples, and which tests they use. +For many scientists, the inability of other labs to confirm the results raised questions about the validity of the retroviral finding. Others such as  W. Ian Lipkin [[https://blogs.wsj.com/health/2010/09/08/world-class-virus-hunter-to-head-up-the-latest-xmrv-study/|have suggested]] that other factors may be to blame: varying definitions of CFS could contribute to conflicting reports, as well as differences in the way labs process blood samples, and which tests they use. 
  
 ==== Enterobacteria and enteroviruses ==== ==== Enterobacteria and enteroviruses ====
  
-A number of studies have detected enterobacteria in the gut of patients with CFS. Maes //et al.// found that the prevalences in response to the presences and median values for serum IgA against the lipopolysaccharides of enterobacteria are significantly greater in patients with CFS.(({{pubmed>long:17007934}})) The presence of chronic disseminated enteroviral infection, as determined by stomach or muscle biopsy, has also been identified in a subset of patients with the syndrome. Acquisition of these pathogens as part of the successive infection process may well contribute to common CFS “comorbidities” such as irritable bowel syndrome or sensitivities to certain foods. +A number of studies have detected enterobacteria in the gut of patients with CFS. Maes //et al.// found that the prevalences in response to the presences and median values for serum IgA against the lipopolysaccharides of enterobacteria are significantly greater in patients with CFS.(({{pmid>long:17007934}})) The presence of chronic disseminated enteroviral infection, as determined by stomach or muscle biopsy, has also been identified in a subset of patients with the syndrome. Acquisition of these pathogens as part of the successive infection process may well contribute to common CFS “comorbidities” such as irritable bowel syndrome or sensitivities to certain foods. 
  
-Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach.(({{pubmed>long:17872383}})) +Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach.(({{pmid>long:17872383}})) 
  
 ==== Mycoplasma ==== ==== Mycoplasma ====
  
-Nijs //et al.// found a high prevalence of //Mycoplasma// infections among European chronic fatigue syndrome patients.(({{pubmed>long:12423773}})) In this prospective study, the presence of //Mycoplasma fermentans, M. penetrans, M. pneumoniae// and //M. hominis// was assessed in the blood of 261 European CFS patients and 36 healthy volunteers using forensic polymerase chain reaction. One hundred and seventy-nine (68.6%) patients were infected by at least one species of Mycoplasma, compared to two out of 36 (5.6%) in the control sample. Multiple mycoplasmal infections were detected in 45 patients (17.2%). Compared to American CFS patients (//M. pneumoniae// > //M. hominis// > //M. penetrans//), a slightly different pattern of mycoplasmal infections was found in European CFS patients (//M. hominis// > //M. pneumoniae//, //M. fermentansz// & //M. penetrans//).+Nijs //et al.// found a high prevalence of //Mycoplasma// infections among European chronic fatigue syndrome patients.(({{pmid>long:12423773}})) In this prospective study, the presence of //Mycoplasma fermentans, M. penetrans, M. pneumoniae// and //M. hominis// was assessed in the blood of 261 European CFS patients and 36 healthy volunteers using forensic polymerase chain reaction. One hundred and seventy-nine (68.6%) patients were infected by at least one species of Mycoplasma, compared to two out of 36 (5.6%) in the control sample. Multiple mycoplasmal infections were detected in 45 patients (17.2%). Compared to American CFS patients (//M. pneumoniae// > //M. hominis// > //M. penetrans//), a slightly different pattern of mycoplasmal infections was found in European CFS patients (//M. hominis// > //M. pneumoniae//, //M. fermentansz// & //M. penetrans//).
  
 ==== Other infections ==== ==== Other infections ====
  
-Certain other infectious illnesses, such as Q fever and viral meningitis are associated with a greater risk of developing CFS, but many people have no evidence of viral infection, and there is no evidence of persistent infection.(({{pubmed>long:11747919}}))+Certain other infectious illnesses, such as Q fever and viral meningitis are associated with a greater risk of developing CFS, but many people have no evidence of viral infection, and there is no evidence of persistent infection.(({{pmid>long:11747919}}))
  
  
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 There are several reports of CFS outbreaks, one prominent example of which is Incline Village. There are several reports of CFS outbreaks, one prominent example of which is Incline Village.
  
-<blockquote>[The] clusters of post-infectious chronic fatigue syndrome are very interesting. Studies by Andrew Lloyd and colleagues(({{pubmed>long:16950834}})) showed the one and only predictor of persistent illness after an acute infection was the severity of that initial infection. No psychiatric factors were shown to predict who remains ill.+<blockquote>[The] clusters of post-infectious chronic fatigue syndrome are very interesting. Studies by Andrew Lloyd and colleagues(({{pmid>long:16950834}})) showed the one and only predictor of persistent illness after an acute infection was the severity of that initial infection. No psychiatric factors were shown to predict who remains ill.
  
 Some very common infections seem to set off C.F.S. and lead to several theories about the disease. My favorite theory is that any infection that can activate the immune system in a profound way could allow a hidden latent virus or viruses to reactivate and perpetuate a chronic illness. Anything that suppresses the immune system, like some treatments for cancer, might do the same thing, causing profound fatigue in some “recovered” cancer patients years after chemotherapy. Some very common infections seem to set off C.F.S. and lead to several theories about the disease. My favorite theory is that any infection that can activate the immune system in a profound way could allow a hidden latent virus or viruses to reactivate and perpetuate a chronic illness. Anything that suppresses the immune system, like some treatments for cancer, might do the same thing, causing profound fatigue in some “recovered” cancer patients years after chemotherapy.
  
-//**Nancy Klimas, M.D.**, [[http://consults.blogs.nytimes.com/2009/11/24/expert-answers-on-chronic-fatigue-syndrome/|New York Times]]//+//**Nancy Klimas, M.D.**, [[https://consults.blogs.nytimes.com/2009/11/24/expert-answers-on-chronic-fatigue-syndrome/|New York Times]]//
 </blockquote> </blockquote>
  
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 CFS/ME patients' behaviors are routinely blamed for causing, if not driving, their illnesses, because they: CFS/ME patients' behaviors are routinely blamed for causing, if not driving, their illnesses, because they:
-  * **unnecessarily seek medical care** – One study found CFS patients consulted their physician more frequently in the 15 years before development of their condition.(({{pubmed>long:11462315}})) This study proves only that CFS patients had signs of sickness (and noticed them) prior to diagnosis. +  * **unnecessarily seek medical care** – One study found CFS patients consulted their physician more frequently in the 15 years before development of their condition.(({{pmid>long:11462315}})) This study proves only that CFS patients had signs of sickness (and noticed them) prior to diagnosis. 
-  * **participate in social networks** – A lack of support or the reinforcement of "illness behaviour" by social networks has been proposed to delay recovery for some patients.(({{pubmed>long:16443043}})) +  * **participate in social networks** – A lack of support or the reinforcement of "illness behaviour" by social networks has been proposed to delay recovery for some patients.(({{pmid>long:16443043}})) 
-  * **display "sickness behavior"** – This demeaning turn of phrase was used in a 2010 study to suggest that patients with CFS/ME are acting as if they were sick.(({{pubmed>long:20695975}})) Sickness behavior is said to be reinforced by people in the patient's environment, such as a partner or family.(({{pubmed>long:11064960}})) (({{pubmed>long:11200964}}))  +  * **display "sickness behavior"** – This demeaning turn of phrase was used in a 2010 study to suggest that patients with CFS/ME are acting as if they were sick.(({{pmid>long:20695975}})) Sickness behavior is said to be reinforced by people in the patient's environment, such as a partner or family.(({{pmid>long:11064960}})) (({{pmid>long:11200964}}))  
-  * **display high levels of "action-proneness"** – Van Houdenhove //et al.// employ this euphemism for saying patients were "hyperactive" prior to disease onset.(({{pubmed>long:11595245}})) (({{pubmed>long:7490698}})) This is analogous to claiming patients with obstructive lung diseases contract those illnesses by excessive breathing. According to this logic, unlike nearly every other disease, patients' dissatisfaction with being sick is responsible for them remaining sick. +  * **display high levels of "action-proneness"** – Van Houdenhove //et al.// employ this euphemism for saying patients were "hyperactive" prior to disease onset.(({{pmid>long:11595245}})) (({{pmid>long:7490698}})) This is analogous to claiming patients with obstructive lung diseases contract those illnesses by excessive breathing. According to this logic, unlike nearly every other disease, patients' dissatisfaction with being sick is responsible for them remaining sick. 
-  * **engage in catastrophizing** – A euphemism for fearing the worst.(({{pubmed>long:15617866}}))  +  * **engage in catastrophizing** – A euphemism for fearing the worst.(({{pmid>long:15617866}}))  
-  * **engage in avoidance behaviour** – A pervasive pattern of social inhibition.(({{pubmed>long:15617866}})) Interestingly, this was used in a paper describing how CFS/ME patients have high levels of nitric oxide, a metabolite which plays a well-documented role in host surveillance.(({{pubmed>long:1281928}})) (({{pubmed>long:14525937}}))+  * **engage in avoidance behaviour** – A pervasive pattern of social inhibition.(({{pmid>long:15617866}})) Interestingly, this was used in a paper describing how CFS/ME patients have high levels of nitric oxide, a metabolite which plays a well-documented role in host surveillance.(({{pmid>long:1281928}})) (({{pmid>long:14525937}}))
  
  
 ==== Cognitive explanations ==== ==== Cognitive explanations ====
  
-According to a 2006 //Lancet// paper, "Inactivity of patients with CFS is caused by perceptions and expectations rather than by physical fitness."(({{pubmed>long:16443043}})) Patients with the condition supposedly: +According to a 2006 //Lancet// paper, "Inactivity of patients with CFS is caused by perceptions and expectations rather than by physical fitness."(({{pmid>long:16443043}})) Patients with the condition supposedly: 
-  * **perceive symptoms inaccurately** – Prins summed up the literature when she said there are discrepancies between perceived and actual cognitive performance, perceived and actual sleep disturbance, and perceived and actual functioning.(({{pubmed>long:16443043}})) +  * **perceive symptoms inaccurately** – Prins summed up the literature when she said there are discrepancies between perceived and actual cognitive performance, perceived and actual sleep disturbance, and perceived and actual functioning.(({{pmid>long:16443043}})) 
-  * **fixate on a physical cause for symptoms** or when exercise is avoided.(({{pubmed>long:16443043}})) (({{pubmed>long:17822818}}))  +  * **fixate on a physical cause for symptoms** or when exercise is avoided.(({{pmid>long:16443043}})) (({{pmid>long:17822818}}))  
-  * **are neurotic and introverted**(({{pubmed>long:16443043}})) – However, a more recent systematic review of personality and CFS found an association with neuroticism, but stated that it was often accounted for by co-morbid depression and levels were similar to those in patients with other chronic diseases, and found no firm evidence for introversion.(({{pubmed>long:17350740}})) +  * **are neurotic and introverted**(({{pmid>long:16443043}})) – However, a more recent systematic review of personality and CFS found an association with neuroticism, but stated that it was often accounted for by co-morbid depression and levels were similar to those in patients with other chronic diseases, and found no firm evidence for introversion.(({{pmid>long:17350740}})) 
-  * **fail to self-regulate** – Deary has hypothesized that in CFS/ME, the health threat is no longer the illness, but anything that threatens to disrupt a precarious accommodation to it.(({{pubmed>long:18267050}})) Due to established vicious circles, attempts at threat regulation may become inadvertently self-defeating, promoting the threats they attempt to diminish. By logical extension, CFS/ME patients who dismissed this argument would do so because they are sick and in so doing, continue to be sick. Or, in other words, failure to agree with a researcher's belief about an illness causes that illness. +  * **fail to self-regulate** – Deary has hypothesized that in CFS/ME, the health threat is no longer the illness, but anything that threatens to disrupt a precarious accommodation to it.(({{pmid>long:18267050}})) Due to established vicious circles, attempts at threat regulation may become inadvertently self-defeating, promoting the threats they attempt to diminish. By logical extension, CFS/ME patients who dismissed this argument would do so because they are sick and in so doing, continue to be sick. Or, in other words, failure to agree with a researcher's belief about an illness causes that illness. 
-  * **engage in somatization** – So called "somatoform diseases," are conditions in the which internal psychological conflicts are unconsciously expressed as physical signs has also been implicated.(({{pubmed>long:15617866}})) +  * **engage in somatization** – So called "somatoform diseases," are conditions in the which internal psychological conflicts are unconsciously expressed as physical signs has also been implicated.(({{pmid>long:15617866}})) 
  
  
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 ==== Therapy based on the cognitive-behavioral model of disease ==== ==== Therapy based on the cognitive-behavioral model of disease ====
  
-Cognitive behavioral therapy (CBT), graded exercise therapy (GET) and other interventions for CFS/ME are predicated on the profoundly flawed cognitive-behavioral model for the disease. They also suffer from bias. For example, because many of the CBT and GET studies required patients to visit a clinic, severely affected patients may have been excluded.(({{pubmed>long:17021301}}))+Cognitive behavioral therapy (CBT), graded exercise therapy (GET) and other interventions for CFS/ME are predicated on the profoundly flawed cognitive-behavioral model for the disease. They also suffer from bias. For example, because many of the CBT and GET studies required patients to visit a clinic, severely affected patients may have been excluded.(({{pmid>long:17021301}}))
  
   * **cognitive behavioral therapy** – CBT is a form of psychological therapy in which patients are taught to solve problems concerning dysfunctional emotions, behaviors and cognitions through a goal-oriented, systematic procedure. Being chronically ill can be very challenging, and professional counseling for diseases that have profound neurological components, is usually useful. But the whole point of this therapy is to "help" the patient develop behaviors and insights into why they are ultimately responsible for their illnesses.   * **cognitive behavioral therapy** – CBT is a form of psychological therapy in which patients are taught to solve problems concerning dysfunctional emotions, behaviors and cognitions through a goal-oriented, systematic procedure. Being chronically ill can be very challenging, and professional counseling for diseases that have profound neurological components, is usually useful. But the whole point of this therapy is to "help" the patient develop behaviors and insights into why they are ultimately responsible for their illnesses.
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 <blockquote>We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET. <blockquote>We conclude that it is unethical to treat patients with ME/CFS with ineffective, non-evidence-based and potentially harmful "rehabilitation therapies", such as CBT/GET.
  
-//**F.N. Twisk**, et al.//(({{pubmed>long:19855350}}))+//**F.N. Twisk**, et al.//(({{pmid>long:19855350}}))
 </blockquote> </blockquote>
  
  
-As of November 2010, the top three treatments for CFS on the [[http://www.cdc.gov/cfs/general/treatment/index.html|CDC website]] remain, respectively: professional counseling, cognitive behavioral therapy (CBT), and graded exercise therapy (GET).+As of November 2010, the top three treatments for CFS on the [[https://www.cdc.gov/cfs/general/treatment/index.html|CDC website]] remain, respectively: professional counseling, cognitive behavioral therapy (CBT), and graded exercise therapy (GET).
  
  
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 ===== Other treatments ===== ===== Other treatments =====
  
-  * **Rituximab** – In 2011, a Norwegian study published in //PLoS One// studied the effect of Rituximab – a monoclonal antibody otherwise used in cancers and anti-rejection treatment for organ transplants – on patients with CFS. In the 25-week study period, fatigue improved significantly in 10 out of 15 patients versus 2 out of 15 controls.(({{pubmed>long:22039471}})) This positive result may be due to the fact that Rituximab is a strong immunosuppressant. It may be telling to see a follow up of the patients who received the drug ten or even fifteen years from now.+  * **Rituximab** – In 2011, a Norwegian study published in //PLoS One// studied the effect of Rituximab – a monoclonal antibody otherwise used in cancers and anti-rejection treatment for organ transplants – on patients with CFS. In the 25-week study period, fatigue improved significantly in 10 out of 15 patients versus 2 out of 15 controls.(({{pmid>long:22039471}})) This positive result may be due to the fact that Rituximab is a strong immunosuppressant. It may be telling to see a follow up of the patients who received the drug ten or even fifteen years from now.
  
  
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 chronic fatigue syndrome (CFS), multiple chemical sensitivity chronic fatigue syndrome (CFS), multiple chemical sensitivity
  
-Read the [[http://bacteriality.com/2008/05/23/interview20/|interview]]+Read the [[https://bacteriality.com/2008/05/23/interview20/|interview]]
  
 <html></div></div></html> <html></div></div></html>
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 chronic fatigue syndrome (CFS), depression, food sensitivities chronic fatigue syndrome (CFS), depression, food sensitivities
  
-Read the [[http://bacteriality.com/2007/11/10/interview10/|interview]]+Read the [[https://bacteriality.com/2007/11/10/interview10/|interview]]
  
 <html></div></div></html> <html></div></div></html>
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 autism, ADHD, depression, severe anxiety, chronic fatigue syndrome (CFS) autism, ADHD, depression, severe anxiety, chronic fatigue syndrome (CFS)
  
-Read the [[http://bacteriality.com/2008/03/15/interview18/|interview]]+Read the [[https://bacteriality.com/2008/03/15/interview18/|interview]]
  
 <html></div></div></html> <html></div></div></html>
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 sarcoidosis, fibromyalgia, chronic fatigue syndrome (CFS) sarcoidosis, fibromyalgia, chronic fatigue syndrome (CFS)
  
-Read the [[http://bacteriality.com/2007/11/08/interview8//|interview]]+Read the [[https://bacteriality.com/2007/11/08/interview8//|interview]]
  
 <html></div></div> <html></div></div>
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-[[http://www.pbs.org/independentlens/films/unrest/|Unrest]]  - Documentary on ME+[[https://www.pbs.org/independentlens/films/unrest/|Unrest]]  - Documentary on ME
  
 Interviews of patients with other diseases are [[home:patients:patient_interviews|also available]]. Interviews of patients with other diseases are [[home:patients:patient_interviews|also available]].
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 ===== Read more ===== ===== Read more =====
  
-  * [[http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/|Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale]] +  * [[https://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/|Chronic Fatigue Syndrome and the CDC: A Long, Tangled Tale]] 
-  * [[http://www.nytimes.com/2009/10/21/opinion/21johnson.html|A case of chronic denial]] – //New York Times// editorial written by the author of //Osler's Web// +  * [[https://www.nytimes.com/2009/10/21/opinion/21johnson.html|A case of chronic denial]] – //New York Times// editorial written by the author of //Osler's Web// 
-  * [[http://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X|Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic]] – a thorough medical and political history of this decades-old (and variously named) syndrome during the epidemic years of 1984-1994 +  * [[https://www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X|Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic]] – a thorough medical and political history of this decades-old (and variously named) syndrome during the epidemic years of 1984-1994 
-  * [[http://www.foodsmatter.com/es/health_risks/articles/goldsworthy-biological-effects-04-12.pdf|biological effects]]+  * [[https://www.foodsmatter.com/es/health_risks/articles/goldsworthy-biological-effects-04-12.pdf|biological effects]]
  
  
 ==== Recent research ==== ==== Recent research ====
  
-<blockquote>//Montoya et al. July 2017 Proc Natl Acad Sci U S A//(({{pubmed>long:28760971}}))+<blockquote>//Montoya et al. July 2017 Proc Natl Acad Sci U S A//(({{pmid>long:28760971}}))
  
 To determine whether a signature of serum cytokines could be associated with ME/CFS and correlated with disease severity and fatigue duration, cytokines of 192 ME/CFS patients and 392 healthy controls were measured using a 51-multiplex array on a Luminex system. Each cytokine’s preprocessed data were regressed on ME/CFS severity plus covariates for age, sex, race, and an assay property of newly discovered importance: nonspecific binding. On average, TGF-β was elevated (P = 0.0052) and resistin was lower (P = 0.0052) in patients compared with controls. Seventeen cytokines had a statistically significant upward linear trend that correlated with ME/CFS severity: CCL11 (Eotaxin-1), CXCL1 (GROα), CXCL10 (IP-10), IFN-γ, IL-4, IL-5, IL-7, IL-12p70, IL-13, IL-17F, leptin, G-CSF, GM-CSF, LIF, NGF, SCF, and TGF-α. Of the 17 cytokines that correlated with severity, 13 are proinflammatory, likely contributing to many of the symptoms experienced by patients and establishing a strong immune system component of the disease. Only CXCL9 (MIG) inversely correlated with fatigue duration.</blockquote>  To determine whether a signature of serum cytokines could be associated with ME/CFS and correlated with disease severity and fatigue duration, cytokines of 192 ME/CFS patients and 392 healthy controls were measured using a 51-multiplex array on a Luminex system. Each cytokine’s preprocessed data were regressed on ME/CFS severity plus covariates for age, sex, race, and an assay property of newly discovered importance: nonspecific binding. On average, TGF-β was elevated (P = 0.0052) and resistin was lower (P = 0.0052) in patients compared with controls. Seventeen cytokines had a statistically significant upward linear trend that correlated with ME/CFS severity: CCL11 (Eotaxin-1), CXCL1 (GROα), CXCL10 (IP-10), IFN-γ, IL-4, IL-5, IL-7, IL-12p70, IL-13, IL-17F, leptin, G-CSF, GM-CSF, LIF, NGF, SCF, and TGF-α. Of the 17 cytokines that correlated with severity, 13 are proinflammatory, likely contributing to many of the symptoms experienced by patients and establishing a strong immune system component of the disease. Only CXCL9 (MIG) inversely correlated with fatigue duration.</blockquote> 
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 [[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5576836/table/t03/?report=objectonly|Comparison of mean cytokine levels (pMFI) in ME/CFS patients]] [[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5576836/table/t03/?report=objectonly|Comparison of mean cytokine levels (pMFI) in ME/CFS patients]]
  
-Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function.   (({{pubmed>long:30204780}})) +Chronic fatigue syndrome patients have alterations in their oral microbiome composition and function.   (({{pmid>long:30204780}})) 
  
  
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 +<nodisp>
 ===== Notes and comments ===== ===== Notes and comments =====
  
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 cardiac insufficiency cardiac insufficiency
  
-  * **sensitization** – the process by which an organism is repeatedly exposed to a stimulus, progressively amplifying the response. Nijs //et al.// argue unconvincingly that elevated levels of nitric oxide (which coincidentally play a key role in host defense) sensitize the central nervous system to stimuli.(({{pubmed>long:15617866}})) +  * **sensitization** – the process by which an organism is repeatedly exposed to a stimulus, progressively amplifying the response. Nijs //et al.// argue unconvincingly that elevated levels of nitric oxide (which coincidentally play a key role in host defense) sensitize the central nervous system to stimuli.(({{pmid>long:15617866}})) 
  
 <blockquote>XMRV infects human cells in culture, but not in-vivo                               <blockquote>XMRV infects human cells in culture, but not in-vivo                              
Line 467: Line 471:
 A new paper confirms my concerns about the Whittemore Peterson Institute using cell-cultures as part of their XMRV assay: A new paper confirms my concerns about the Whittemore Peterson Institute using cell-cultures as part of their XMRV assay:
  
-http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015632+https://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0015632
  
 Note also that we have explained how important it is to select the correct primers for a nested-PCR analysis, something that many research groups do not yet seem to fully appreciate. It is on page 20 of our recent book chapter: Note also that we have explained how important it is to select the correct primers for a nested-PCR analysis, something that many research groups do not yet seem to fully appreciate. It is on page 20 of our recent book chapter:
  
-http://autoimmunityresearch.org/preprints/Proal_MHB_Chapter_preprint.pdf+https://autoimmunityresearch.org/preprints/Proal_MHB_Chapter_preprint.pdf
    
 ..Trevor.. ..Trevor..
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 FYI,Interesting article which is receiving flak from the online CFS communities. FYI,Interesting article which is receiving flak from the online CFS communities.
  
-http://www.chicagotribune.com/health/ct-met-chronic-fatigue-xmrv-20110317,0,1822523,full.story+https://www.chicagotribune.com/health/ct-met-chronic-fatigue-xmrv-20110317,0,1822523,full.story
  
 ..Trevor.. ..Trevor..
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 From: Dr Trevor Marshall From: Dr Trevor Marshall
 Date: 2010-12-20 10:44:36 Date: 2010-12-20 10:44:36
-Reply: http://www.marshallprotocol.com/reply.php?topic_id=13461+Reply: https://www.marshallprotocol.com/reply.php?topic_id=13461
  
  
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-http://www.guardian.co.uk/society/2010/dec/20/chronic-fatigue-me-research+https://www.guardian.co.uk/society/2010/dec/20/chronic-fatigue-me-research
  
  
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 <blockquote>From: Dr Trevor MarshallDate: 2011-01-03 21:13:26 <blockquote>From: Dr Trevor MarshallDate: 2011-01-03 21:13:26
-Reply: http://www.marshallprotocol.com/reply.php?topic_id=13461+Reply: https://www.marshallprotocol.com/reply.php?topic_id=13461
  
 Why wouldn't the samples from the controls be contaminated Why wouldn't the samples from the controls be contaminated
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 From: Bane From: Bane
 Date: 2011-05-04 15:41:39 Date: 2011-05-04 15:41:39
-Reply: http://www.marshallprotocol.com/reply.php?topic_id=13461+Reply: https://www.marshallprotocol.com/reply.php?topic_id=13461
  
 Chronic Fatigue Syndrome Is Not Related to XMRV Retrovirus, Comprehensive Study Finds Chronic Fatigue Syndrome Is Not Related to XMRV Retrovirus, Comprehensive Study Finds
  
-http://healthcare.utah.edu/publicaffairs/news/current/05411Singh.html+https://healthcare.utah.edu/publicaffairs/news/current/05411Singh.html
  
 “Our investigation found no trace of XMRV in any of the blood samples taken from patients we obtained ourselves, or from patients previously tested in the 2009 Science study,” Singh said.  “Because of our findings, we believe chronic fatigue syndrome patients should reconsider the merit of taking antiretroviral agents to alleviate their symptoms.” “Our investigation found no trace of XMRV in any of the blood samples taken from patients we obtained ourselves, or from patients previously tested in the 2009 Science study,” Singh said.  “Because of our findings, we believe chronic fatigue syndrome patients should reconsider the merit of taking antiretroviral agents to alleviate their symptoms.”
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 From: Phillyguy From: Phillyguy
 Date: 2011-05-04 20:51:51 Date: 2011-05-04 20:51:51
-Reply: http://www.marshallprotocol.com/reply.php?topic_id=13461+Reply: https://www.marshallprotocol.com/reply.php?topic_id=13461
  
 The patients on the CFS boards are very angry about the interpretation of these results.  However, what they dont realize is that this is good news.  Retroviruses can be really, really nasty and difficult to treat. The patients on the CFS boards are very angry about the interpretation of these results.  However, what they dont realize is that this is good news.  Retroviruses can be really, really nasty and difficult to treat.
  </blockquote>  </blockquote>
  
-===== References =====+===== References =====</nodisp> 
home/diseases/cfs.1562452795.txt.gz · Last modified: 07.06.2019 by sallieq
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