ME/CFS
Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
Bringing Scientific Medical
Research News and Awareness
on ME/CFS To The Front
INFRONT
SCIENCE
World-renowned scientists are working
to solve a severely debilitating disease
Most people have never heard of this disease.
Doctors worldwide are unaware of it or misdiagnose it.
But the top medical scientists in the world say ME/CFS
is quietly growing around the globe.
THE SEARCH FOR A DISTINCT BIOMARKER IS OF EXTREME IMPORTANCE
A molecular neurobiological approach to understanding the aetiology
of Myalgic Encephalomyelitis, Chronic Fatigue Syndrome
SCIENTIFIC BASIS OF
Myalgic Encephalomyelitis
Chronic Fatigue Syndrome (ME/CFS)
“One of the last major diseases known to mankind we have yet to solve” – Davis
ME/CFS - A debilitating, mysterious and complicated disease that many have never heard of has arisen that affects at least two million Americans and millions more worldwide. The patients are derided by their families and colleagues, sent for psychological or other misguided treatments by their uneducated doctors. They are isolated from society because of a disease that has a known scientific basis, yet they are largely ignored. The plight of these patients is made worse by a lack of funding, medical education and general public knowledge. That is starting to change, and that's what brought this remarkable team of scientists together at Stanford to explain the molecular basis of this disease.
Dr. Ron Davis is Professor of Biochemistry and Genetics at Stanford University School of Medicine, Director of the Stanford Genome Technology Center, Director of the Chronic Fatigue Syndrome Research Center at Stanford University, and Director of the Open Medicine Foundation ME/CFS Scientific Advisory Board. Dr. Davis holds a PhD in chemistry from Caltech and is a member of the National Academy of Sciences. Throughout his career he has made numerous s eminal discoveries that have accelerated genetics, genomics, and bioengineering, including over 70 patented technologies that have launched numerous successful companies. His contributions have been recognized by the Gruber Genetics Prize, the Genetics Society of America Medal, the Warren Alpert Prize, and the Personalized Medicine World Conference Luminary Award. In 2013, he was named one of the 7 World’s Greatest Inventors by The Atlantic.
VIDEO | Stanford University
Community Symposium on the Molecular Basis of ME/CFS
World renowned scientists meet
to discuss debilitating
misunderstood disease:
Myalgic Encephalomyelitis
Chronic Fatigue Syndrome
(ME/CFS)
Medical Science Panel Q&A after screening of UNREST at University of California Berkeley
Dr. Jose Montoya, Professor in the Stanford University Division of Infectious Diseases and Geographic Medicine and Ron Davis, Professor of Biochemistry and Genetics at Stanford University School of Medicine, Director of the Stanford Genome Technology Center, Director of the Chronic Fatigue Syndrome Research Center at Stanford University are guest panelists. VIDEO
| BURDEN OF DISEASE IMPAIRMENT Institute of Medicine Report |
What is the prevalence of ME/CFS?
• ME/CFS affects 836,000 to 2.5 million Americans.
• An estimated 84 to 91 percent of people with ME/CFS have not yet been diagnosed, meaning the true prevalence of ME/CFS is unknown.
• ME/CFS affects women more often than men. Most patients currently diagnosed with ME/CFS are Caucasian, but some studies suggest that ME/CFS is more common in minority groups.
• The average age of onset is 33, although ME/CFS has been reported in patients younger than age 10 and older than age 70.
What are the symptoms and other effects of ME/CFS?
• There are five main symptoms of ME/CFS:
1. Reduction or impairment in ability to carry out normal daily activities, accompanied by profound fatigue
2. Post-exertional malaise (worsening of symptoms after physical, cognitive, or emotional effort)
3. Unrefreshing sleep
4. Cognitive impairment
5. Orthostatic intolerance (symptoms that worsen when a person stands upright and improve when the person lies back down).
• Other common manifestations of ME/CFS include pain, failure to recover from a prior infection, and abnormal immune function.
• At least one-quarter of ME/CFS patients are bed- or house-bound at some point in their illness.
• Symptoms can persist for years, and most patients never regain their pre-disease level of health or functioning.
• ME/CFS patients experience loss of productivity and high medical costs that contribute to a total economic burden of
$17 to $24 billion annually.
KEY FACTS
What are the challenges in improving diagnosis and care for ME/CFS?
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The cause of ME/CFS remains unknown, although symptoms may be triggered by certain infections.
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Although there are therapies available to manage symptoms of ME/CFS, their efficacy is not known. There is no existing cure for ME/CFS.
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There is an urgent need for more research and funding to discover what causes ME/CFS, understand the mechanisms associated with the development and progression of the disease, and develop effective diagnostic markers and treatments.
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Lack of education by the medical community about the disease.
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ME/CFS sufferers are frequently denied health, medical insurance and social security benefits despite scientific medical findings.
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INSTITUTE OF MEDICINE CLINICIAN GUIDE
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RECENT STUDIES from Stanford, Columbia, Cornell demonstrated that ME/CFS patients suffer from immunological, neurological, and other systemic dysfunctions. Scientists have reported that the bodies of ME/CFS patients generate energy inefficiently if they push beyond their limited capacities.
IMPORTANT RECENT RESEARCH: Dr. Ron Davis speech on ME/CFS | Video
UPDATE - Dr. Mark Davis, Director of the Stanford Institute for Immunity, Transplantation, and Infection, talks about his work with T-cells to understand their role in ME/CFS and to determine if ME/CFS is an autoimmune disease. | Video
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UPDATE - TOP AREAS OF RESEARCH
Presented by Anthony L. Komaroff, MD,
Simcox-Clifford-Higby Professor of Medicine
at Harvard Medical School and Senior
Physician at Brigham and Women’s Hospital
From the Solve ME/CFS Initiative Webinar Series
UPDATE | RESEARCH GRANT AWARDED TO STANFORD
Davis garners five year NIH funding to pursue
molecular and single cell immunology of ME/CFS
The 3.9 million dollar grant combines Stanford immunologist Mark Davis’s work on T-cells with Ron Davis’s work on HLA genes
Myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), is a complex, debilitating disease that has baffled researchers for decades. Its inaccurate yet frequent dismissal as a psychosomatic condition and lack of recognition by many in the biomedical community have greatly hindered research; as a result, very little is known about its cause(s), and no biological diagnosis or approved treatments are available.
"Recent developments have more clearly defined this mysterious illness, and it is now clear that it afflicts up to 2.5 million in the United States and millions more worldwide. While the symptoms present at various levels, including neurological and cognitive, widespread molecular and immunological abnormalities have also been observed. This is consistent with a majority of patients reporting infection prior to the onset of ME/CFS, although it remains unclear why common infections would serve as triggers for a chronic illness only in some people. Nevertheless, there is compelling evidence for an active immune response in ME/CFS, as suggested by elevated levels of signalling molecules called cytokines and activity of killer
T cells, which are triggered in cases of infection or autoimmunity." | Ron Davis - Grant application
T-cell and B-cells are the big guns of the adaptive immune response which swoop in later in an infection to clear it out. Mark Davis, a T-cell expert, has spent 35 years studying these prime movers of the immune system. T-cells are unique in their refined approach to pathogens; while other immune cells react to whole antigens T-cells need only a fragment of an antigen to respond. Their job is a staggering ly complex one; to produce literally billions of potential binding sites that are able to capture small bits of pathogenic proteins and then lift them to the surface of the cell so that the immune system can respond to them.
With two T-cells researchers, Mark Davis and Derya Unutmaz,
finding abnormalities, T-cells have become an area of focus in ME/CFS
Once a pathogen is found T-cells create specially designed copies (clones) of themselves that swarm through the body targeting infecting cells or the actual pathogen itself.. As Mark Davis explains in the video below, that process is occurring in ME/CFS; ME/CFS patient’s T-cells in ME/CFS are busy churning out identical copies of themselves; they’ve responded to something with a fury.
The best candidate a pathogen – a virus, bacteria, fungus, etc. – which may be gone, but has ticked off an overactive immune response that is now attacking the body producing an autoimmune disease.
In this study Mark Davis will look at an array of T-cells to determine the breadth and extent of the T-cell activation in ME/CFS. He’ll pair that with new technology developed by Ron Davis which gives researchers a better handle on the genes used to capture those pathogenic antigens. They’re found in the most mysterious part of our genome in the HLA locus.
Because the HLA genes also help the immune system differentiate self from non-self cells they also play a major role in autoimmunity. Studies indicate that people with certain HLA types are more at risk for autoimmune diseases such as type I diabetes, lupus, myasthenia gravis, Sjögren’s syndrome, narcolepsy. and others. This study will assess the HLA locus of a large number of ME/CFS patients.
Finally, the study will use new techniques developed at Stanford to try and determine what those activated T cells in ME/CFS are targeting.
By the time the study is done we could know if ME/CFS is an autoimmune disease or is caused by a pathogen (or both!), Plus we could know what specifically has tweaked our immune systems. Plus Ron Davis, in a section of the grant, which shows his predilection for long term thinking, envisions the study as the opportunity to build a new (and precise) molecular framework for understanding, diagnosing and treating ME/CFS. | Full Article by Cort Johnson
| NIH GRANT DETAILS | HLA GENES? Here's Why by Simon McGrath
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Dr. Montoya discusses clinical implications of recent scientific
reports that are pinning down the development of this disease
IMPORTANT SPEECH - Dr. Montoya discusses white matter changes in brains of ME/CFS patients (possible biomarker) - Using an advanced imaging technique — diffusion-tensor imaging, which is especially suited to assessing the integrity of white matter — Zeineh and his colleagues identified a consistent abnormality in a particular part of a nerve tract in the right hemisphere of CFS patients’ brains. This tract, which connects two parts of the brain called the frontal lobe and temporal lobe, is called the right arcuate fasciculus, and in CFS patients it assumed an abnormal appearance.
Furthermore, there was a fairly strong correlation between the degree of abnormality in a CFS patient’s right arcuate fasciculus and the severity of the patient’s condition, as assessed by performance on a standard psychometric test used to evaluate fatigue.
Montoya also discusses cytokine level findings in patients and clinical implications of recent scientific reports that are pinning down the development of this disease. Treatment implications and future avenues for research are also discussed.
Speaker | Dr. Jose Montoya, Stanford Professor of Medicine for the Division of Infectious Diseases and Geographic Medicine
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| CDC | CENTERS FOR DISEASE CONTROL AND PREVENTION
AMERICA’S HIDDEN
HEALTH CRISIS:
Educating clinicians and the public
What everyone needs to know about ME/CFS
Information for Healthcare Providers | CDC WEBSITE
"Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
is a serious, long-term illness that affects many body systems."
Pain interferes similarly in the life of someone with ME/CFS and someone with spinal cord injury, muscular dystrophy, or multiple sclerosis (Unger, 2013). More severely disabled ME/CFS patients may experience more pain (Marshall et al., 2010). Regardless of the definitions used, the presence of chronic regional and widespread pain in individuals with ME/CFS is associated with poor general health, physical functioning, and sleep quality independently of ME/CFS (Aaron et al., 2002). In a systematic review of chronic musculoskeletal pain in ME/CFS (which included studies using various ME/CFS diagnostic criteria), Meeus and colleagues (2007) concluded that there is no consensus on the definition of chronic widespread pain in ME/CFS, and while there is no strong proof of its exact cause or prevalence, this pain is strongly disabling. | Reference: Review of evidence: NAS
ME/CFS is a complex, chronic, debilitating disease with systemic effects. This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, severe pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives, yet many struggle with symptoms for years before receiving a diagnosis. Fewer than one-third of medical school curricula and less than half of medical textbooks include information about ME/CFS. Although some health care providers are aware of ME/CFS, they may lack essential knowledge about how to diagnose and treat it.
PEDIATRIC ME/CFS | Article CLINICIANS GUIDE | Link EDUCATION VS FUNDING | Article
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Those afflicted with ME/CFS have a lower quality of life than any other disease tested | Informational Page
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| Social Security Disability Informational Page
Center established for Solutions to Myalgic Encephalomyelitis/CFS
National Institutes of Health has awarded a five-year $9.6 million grant to the Center for Infection and Immunity (CII) at Columbia University’s Mailman School of Public Health to create the Center for Solutions for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (CfS for ME/CFS), an inter-disciplinary, inter-institutional research group dedicated to understanding the biology of the disease in order to develop effective means to diagnose, treat and prevent it. This Center will be one of three ME/CFS Collaborative Research Centers (CRCs) that will be awarded,
together with a Data Management and Coordinating Center (DMCC).
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FROM THE NATIONAL INSTITUTES OF HEALTH DIRECTOR
Imagine going to work or school every day, working out at the gym, spending time with family and friends—basically, living your life in a full and vigorous way. Then one day, you wake up, feeling sick. A bad cold maybe, or perhaps the flu. A few days pass, and you think it should be over—but it’s not, you still feel achy and exhausted. Now imagine that you never get better— plagued by unrelenting fatigue not relieved by sleep. Any exertion just makes you worse. You are forced to leave your job or school and are unable to participate in any of your favorite activities; some days you can’t even get out of bed. The worst part is that your doctors don’t know what is wrong and nothing seems to help.
Unfortunately, this is not fiction, but reality for at least a million Americans — who suffer from a condition that carries the unwieldy name of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), a perplexing disease that biomedical research desperately needs to unravel [1]. Very little is currently known about what causes ME/CFS or its biological basis [2]. Among the many possibilities that need to be explored are problems in cellular metabolism and changes in the immune system.
A number of studies suggest that abnormalities in cellular metabolism, a complex biological process that the body uses to create energy [3][4][5], may underlie ME/CFS.
The NIH is committed to stimulating additional research to reveal the causes of this debilitating disease. ME/CFS is such a complex condition, affecting so many body systems, that we do not know where the answers will come from. Informed by results from a 2014 ME/CFS workshop [9], NIH initiated a call to action to all of its relevant Institutes and Centers in October 2015. The resultant NIH research effort, led by Trans-NIH ME/CFS Working Group, leverages an impressive scope of expertise across the NIH to attack this research gap.
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Scientists discover robust evidence that ME/CFS is a biological illness
Columbia - cerebrospinal fluid: levels of most cytokines/antibodies, including the inflammatory immune molecule interleukin 1, were depressed in individuals with CFS
Columbia - plasma: Specific biomarker patterns in patients of fewer than three years. Early onset patients had increased amounts of many different types of cytokines with an unusually strong manifestation of Interferon Gamma.
Cornell - Analysis of mitochondrial genomes in CFS cases indicates that individuals of a certain haplogroup or carrying specific SNPs are more likely to exhibit certain neurological, inflammatory, and/or gastrointestinal symptoms. No increase in susceptibility to CFS of individuals carrying particular mitochondrial genomes or SNPs was observed
Stanford – In patients the ATP levels levels are higher and mitochondrial cristae are more condensed compared to their paired controls, while the mitochondrial crista length, mitochondrial size, shape, density, membrane potential, and enzymatic activities of the complexes in the electron transport chain remain intact. Further, the increased ATP largely comes from non-mitochondrial sources. The fatigue symptom in this cohort of patients is unlikely caused by lack of ATP and severe mitochondrial malfunction; it might be linked to a pathological mechanism by which more ATP is produced by non-mitochondrial sources.
Metabolic trap theory emerges from strange data results
Robert D. Phair, PhD, co-founder and Chief Science Officer at Integrative Bioinformatics Inc. in Mountain View, CA was recently awarded an OMF research grant in collaboration with the CFS research team at the Stanford Genome Technology Center. The two groups have been working together for 20 months and now propose to test a new hypothesis for the etiology of ME/CFS, called the metabolic trap hypothesis.
Phair had chanced on something that nagged at him. It was a metabolic result in the Severe ME/CFS Patient study that just didn’t make sense to him. Gene variants may significantly, and in a negative manner, impact the functioning of key enzymes that process important metabolites involved in energy production, brain and immune functioning.
Whole genome sequencing data obtained during the OMF-funded Severely Ill Patient Study (SIPS) provided the initial clue that damaging mutations in some genes are a common feature of the SIPS genomes. Some, but not all, of these mutations are common in the general population as well, so they are not causal, but they may represent a genetic predisposition to ME/CFS. Phair’s metabolic trap hypothesis emerged from a synthesis of published enzyme kinetics using mechanistic computational modeling. | Reference Article
ME/CFS is a physical disorder, not psychological, panel says
Chronic fatigue syndrome is a "serious, debilitating" condition with a cluster of clear physical symptoms — not a psychological illness — a panel of experts reported recently as it called for more research into a disease that may affect as many as 2.5 million Americans.
"We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy," said Ellen Wright Clayton, a professor of pediatrics and law at Vanderbilt University, who chaired the committee of the Institute of Medicine, the health arm of the National Academy of Sciences.
Attitude and opinions vs medical knowledge still a challenge in 2018
Lack of awareness and continuing skepticism among many health care providers of ME/CFS as a legitimate physical illness still persists.
Indeed, the main barriers to appropriate and timely diagnosis of ME/CFS appear to be primarily attitudinal rather than knowledge based. A study published in 2010 by CDC found that 96 percent of health care providers were aware of ME/CFS and were able to recall accurately some symptoms associated with the 1994 Fukuda definition (Brimmer et al., 2010). Yet the same study also found that a significant portion of providers had doubts and misconceptions about the illness. Some providers still were expressing the belief that “people with [ME/CFS] are just depressed” and 30 to 43 percent link the illness to high socioeconomic status or pre-illness “competitive/compulsive” personality traits.
Bateman Horne Center leads change in perceptions | Video
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OF INTEREST When Antibiotics Turn Toxic | ME/CFS? worth investigation
Article | International Journal of Science
Former Washington Post Science Reporter and ME/CFS patient Brian Vastag wins court case against Prudential Insurance in disability case | See ruling
Dr. David M. Systrom received his medical degree from Dartmouth Medical School and completed a residency in internal medicine at Emory University Hospital, followed by a fellowship in internal medicine at Massachusetts General Hospital. An active investigator and director of the Massachusetts General Hospital Cardiopulmonary laboratory and an assistant professor of medicine at Harvard Medical School, Dr. Systrom regularly publishes research examining pulmonary hypertension, pulmonary vascular disease, right heart failure and thromboembolic disease. He has authored over 130 peer-reviewed publications, has received funding from the National Institutes of Health and the American Heart Association, and has been named to the annual list of the Best Doctors in America.
Advancements in ME/CFS Research
Brigham and Women's Hospital
Understanding of the autonomic, peripheral neuropathy, and cardiovascular features involved with ME/CFS
Brigham and Women’s Hospital is a world-renowned teaching hospital of the Harvard Medical School. It provides cutting-edge treatment and technologies in a setting that emphasizes quality patient experiences safety. The hospital’s dedication to medical education has fostered a prestigious residency program. BWH is a leader in clinical, translational, bench, and population-based research studies and bears the distinction of being a top recipient of research grants from the National Institutes of Health.
Impaired calcium mobilization in natural killer cells from Myalgic Encephalomyelitis/CFS patients is associated
with transient receptor potential melastatin 3 ion channels
TRPM3 activity and function in NK cells in CFS/ME patients is impaired, resulting in changes in Ca21 ion concentration in the cytosol and intracellular stores which may, in turn, change the NK cells’ activation threshold. Cytotoxic NK cells from CFS/ME patients may attempt to compensate for impaired TRPM3 receptors by increasing intracellular Ca21 for sufficient NK cell activity. Increasing Ca21 concentrations to activate the ERK signalling pathway may help to improve NK cell cytotoxicity in CFS/ME. Improvement of Ca21-dependent NK activity may help to improve the immune system in CFS/ME patients to facilitate a quicker response to eliminate pathogens. Moreover, improvement of cell-to-cell interaction could improve the development of antigen-specific memory cells. This investigation may inform the pathomechanism of reduced NK cell cytotoxicity in CFS/ME patients.
The power of the intracellular pathogens; how they take down the immune system
The most fundamental way that pathogens “take down” the human immune system is by infecting and living inside human cells – especially human white blood cells. Under conditions of health, these white blood cells traffic the body, where they engulf or digest pathogens that originate from both the internal and external environment. BUT, many key pathogens have evolved to thwart this process. They have evolved to remain alive inside these white blood cells; inside the very cells that are supposed to kill them! They can survive this way for long periods of time in a chronic, persistent state.
There are two main implications of this “intracellular persistence”:
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The infected cell is unable to perform its basic immune system duties.
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Any pathogen inside the infected cell can interfere with the way the cell “encodes”
its human DNA.
Metabolomics study validation
on abnormalities in pathways
Dr. Naviaux’s initial study carried out metabolomics profiling on patients, to measure levels of hundreds of their serum metabolites, the small molecules involved in metabolism. This yielded a picture of widespread disruptions in ME/CFS metabolism compared to healthy controls – and most importantly, a metabolic ‘signature’ that appeared to distinguish patients from controls.
IS THIS THE BIOMARKER?
Fecal metagenomic profiles in
subgroups of patients with me/cfs
Independent of IBS, ME/CFS is associated with dysbiosis and distinct bacterial metabolic disturbances that may influence disease severity. However, our findings indicate that dysbiotic features that are uniquely ME/CFS associated may be masked by disturbances arising from the high prevalence of IBS co-morbidity in ME/CFS. These insights may enable more accurate diagnosis and lead to insights that inform the development of specific therapeutic strategies in ME/CFS subgroups.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) devastates the lives of millions of people and has remained a mystery illness despite decades of research. It has long been suspected that inflammation is central to its pathogenesis
Cytokine signature associated with disease
severity in chronic fatigue syndrome patients
Neuroinflammation in Patients with ME/CFS
An 11C-(R)-PK11195 PET Study Finding
Read Document
Research has revealed
brain and spinal inflammation
Systemic inflammation, low blood volume, immune system deficiency, abnormal gene reactions to exercise, abnormal energy metabolism in response to exercise, and abnormalities in the hypothalamic/adrenal/pituitary system. Standing upright for a short duration or any form of emotional response including excitement, startlement, joy and laughter can escalate the severity of symptoms.
But none of these biological findings have led to a widely accepted diagnostic marker or led to an understanding of the cause of all the symptoms.
SPINAL PAIN
Spinal Fluid Study Finds
Dramatic Differences in
Chronic Fatigue Syndrome
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The fact that the alterations in the immune factors in the ME/CFS were almost as extreme as in multiple sclerosis – a disorder characterized by severe central nervous system dysfunction – suggests a major pathology is present in the central nervous systems of ME/CFS patients.
-
The low cytokine levels suggest that some sort of immune exhaustion – caused by an infection or by immune upregulation – is present in ME/CFS. These findings parallel those of the recent Hornig/Lipkin study suggesting that immune up regulation early in the disorder may lead to immune burnout later on.
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Several of the immune factors in the ME/CFS patients spinal fluid suggest an allergic type of reaction may be occurring in their CNS. A similar finding is also found in some central nervous system infections; i.e. an infection could be driving this process.
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The immune factor most identified with the ME/CFS patients has been associated with cognitive declines, aging and reduced neuron production
Disability and Impairment
Several ME/CFS symptoms — including fatigue, cognitive dysfunction, pain, sleep disturbance, post-exertional malaise, and secondary depression or anxiety—may contribute to impairment or disability
(Andersen et al., 2004; Tiersky et al., 2001).
Patients with ME/CFS have been found to be more functionally impaired than those with other disabling illnesses, including type 2 diabetes mellitus, congestive heart failure, hypertension, depression, multiple sclerosis, and end-stage renal disease
(Jason and Richman,2008; Twisk, 2014).
Symptoms can be severe enough to preclude patients from completing everyday tasks, and 25-29 percent of patients report being house- or bedbound by their symptoms.
Institute of Medicine - (NAM) National Acadamy of Medicine
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness.
Washington, DC: The National Academies Press. doi: 10.17226/19012
Epigenetic modifications, glucocorticoid sensitivity in Myalgic Encephalomyelitis/
Chronic Fatigue Syndrome (ME/CFS)
To download a free PDF of Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, please log in with your existing MyNAP account, create a free MyNAP account, or download as a guest.
Physicians used to dismiss the disease as psychosomatic, but studies now suggest that it involves problems in the chemical reactions, or pathways, within cells. “We now have a great deal of evidence to support that this is not only real, but a complex set of disorders,” says Ian Lipkin, an epidemiologist at Columbia University in New York City. “We are gathering clues that will lead to controlled clinical trials.”
A report released in February 2015 by the US Institute of Medicine (IOM) has helped to drive the shift. After reviewing more than 9,000 studies, an expert panel concluded that chronic fatigue syndrome was an under-studied physiological illness. “They essentially said, ‘Shame on you for not investigating this,’” says Zaher Nahle, vice-president of scientific programmes at the Solve ME/CFS Initiative, a non-profit group in Los Angeles, California.
Biological Underpinnings of ME/CFS,
an understudied physiological illness
Multiple studies now show that the gut bacterial
composition is abnormal in patients with ME, a life-
limiting disease. These findings are now among many
discoveries of biological differences between ME patients
and healthy individuals, all of which should dispel any
remaining notions that the illness is psychological in
nature. Future studies on the eukaryotic microbiome
and virome may reveal additional disturbances in the
microbial communities of people with the disease.
Maureen R. Hanson and Ludovic Giloteaux
(Cornell University, USA)
The gut microbiome in Myalgic Encephalomyelitis
We report that targeted, broad-spectrum metabolomics
of plasma not only revealed a characteristic chemical signature but also revealed an unexpected underlying biology
From the National Academy of Science
Metabolic features of ME/CFS
The Stanford
Puzzle Solver
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The fact that the alterations in the immune factors in the ME/CFS were almost as extreme as in multiple sclerosis – a disorder characterized by severe central nervous system dysfunction – suggests a major pathology is present in the central nervous systems of ME/CFS patients.
-
The low cytokine levels suggest that some sort of immune exhaustion – caused by an infection or by immune upregulation – is present in ME/CFS. These findings parallel those of the recent Hornig/Lipkin study suggesting that immune up regulation early in the disorder may lead to immune burnout later on.
-
Several of the immune factors in the ME/CFS patients spinal fluid suggest an allergic type of reaction may be occurring in their CNS. A similar finding is also found in some central nervous system infections; i.e. an infection could be driving this process.
-
The immune factor most identified with the ME/CFS patients has been associated with cognitive declines, aging and reduced neuron production.
INSTITUTE OF MEDICINE REPORT
DOWNLOAD REPORT
NIH announces centers for ME/CFS research
The National Institutes of Health announced recently that Cornell is one of three institutions nationwide to receive funding to establish a collaborative research center for the study of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Each center will serve
as a hub that partners with other institutions
to study the disease.
The (NIH) awarded four grants to establish a coordinated scientific research effort on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The total cost of the projects for fiscal year 2017 will be over $7 million, with support from multiple NIH Institutes and Centers that are part of the Trans-NIH ME/CFS Working Group.
The grants will support the creation of a consortium made up of three Collaborative Research Centers (CRC) and a Data Management Coordinating Center (DMCC). The CRCs will each conduct independent research but will also collaborate on several projects, forming a network to help advance knowledge on ME/CFS. The data will be managed by the DMCC and will be shared among researchers within the CRCs and more broadly with the research community.
Maureen Hanson and research associate Ludovic Giloteaux examine a Western blot of proteins from isolated extracellular vesicles in Hanson's lab in the Biotech Building at Cornell.
| Lindsay France/University Photography
“These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease,” said NIH Director Francis S. Collins, M.D., Ph.D.
The Neuroinflammatory Etiopathology of ME/CFS
This highly intrusive disease involves varying degrees of physical disability and cognitive deficits, associated psychosocial difficulties, and significantly reduced quality of life (Winger et al., 2015) and life expectancy (Jason et al., 2006), across a patient population numbering in the millions worldwide. Complete/spontaneous recovery is extremely rare and conventional treatment strategies rarely deliver even modest direct, objective and, sustained symptomatic improvement.
Thus, ME/CFS constitutes a particularly enigmatic, debilitating, and costly major public health issue, and the advancement of our understanding of its essence, hence, a pressing area of biomedical enquiry (Arroll, 2014).
The central focus of this work is the proposition that ME/CFS constitutes the symptomatic manifestation of enhanced nervous sensitivity attributable to a neuroinflammatory etiopathology associated with abnormal nociceptive and neuro-
immune activity. The article reviews, highlights, and interconnects numerous relevant disease features, processes, and concepts from the biomedical literature, the ultimate aim of which is to provide stakeholders with an instructive pathophysiological conceptual framework.
This Disabling Disease Has Left
MILLIONS MISSING
From Outside Their Home Environments
THEY ARE MISSING FROM WORK | MISSING FROM WORSHIP SERVICES
MISSING FROM SOCIAL ENGAGEMENTS | MISSING FROM FAMILIES AND FRIENDS
MISSING FROM EDUCATION
Missing from Society
Scroll down to see some of their stories
The Human Impact of Myalgic Encephalomyelitis | CFS
Whitney Dafoe son of Ron Davis and Janet Dafoe. A once vibrant world travelling photographer becomes ill with this disease. It has been reported to be one of the most serious cases of ME/CFS.
A look at ME/CFS:
The invisible disability
Research into this debilitating disease has a rocky past.
Now scientists may finally be finding their footing.
Elizabeth Allen a 34-year-old lawyer was a competitive swimmer at an Ivy-league university when she first fell ill with chronic fatigue syndrome, 14 years ago. Her meticulous records demonstrate that this elusive malady is much worse than ordinary exhaustion. “Last year, I went to 117 doctor appointments and I paid $18,000 in out-of-pocket expenses,” she says.
Jennifer Brea's Sundance award-winning documentary, Unrest, is a personal journey from patient to advocate to storyteller. Jennifer is twenty-eight years-old, working on her PhD at Harvard, and months away from marrying the love of her life when a mysterious fever leaves her bedridden. When doctors tell her it's "all in her head," she picks up her camera as an act of defiance and brings us into a hidden world of millions that medicine abandoned.
UNREST FILM website for more information
UPCOMING SCREENINGS OF UNREST | Solve ME/CFS Screening MN
UPDATE: Medical Science Panel Q&A after screening of UNREST at University of California Berkeley
Dr. Jose Montoya, Professor in the Stanford University Division of Infectious Diseases and Geographic Medicine and Ron Davis, Professor of Biochemistry and Genetics at Stanford University School of Medicine, Director of the Stanford Genome Technology Center, Director of the Chronic Fatigue Syndrome Research Center at Stanford University are guest panelists.
WATCH | NPR Here and Now Interview
Brian Vastag, a former Washington Post science reporter, placed an op-ed with his former employer - It was an open letter to the National Institutes of Health director Francis Collins, a man Vastag had formerly used as a source on his beat.
“I’ve been felled by the most forlorn of orphan illnesses,” Vastag wrote. “At 43, my productive life may well be over.”
There was no cure for his disease, known by some as chronic fatigue syndrome, Vastag wrote, and little NIH funding available to search for one. Would Collins step up and change that?
“As the leader of our nation’s medical research enterprise, you have a decision to make,” he wrote. “Do you want the NIH to be part of these solutions, or will the nation’s medical research agency continue to be part of the problem?”
Vastag recently won a federal lawsuit against Prudential Insurance after the insurance company dropped his short-term disability benefits and denied his bid for long-term.
The neglect of "the system"
for ME/CFS patients
It leaves people bed-bound and drives some to suicide, but there's little research money devoted to the disease. Now, change is coming, thanks to the patients themselves.
Amy Proal - A microbiologist who also suffers from ME/CFS.
She first became ill with ME/CFS in 2004, while studying medicine at Georgetown University. Almost immediately she began to research the disease from bed and wrote her undergraduate thesis on ME/CFS. Several years later, she obtained a fellowship from Murdoch University (Australia) that allowed her to study the human microbiome. Proal was awarded a PhD in microbiology in 2011. She has been published in many peer-reviewed papers/book chapters that discuss how microbiome imbalance can drive inflammatory disease processes (commissioned by the J. Craig Venter Institute, the NIH, and the European Autoimmunity Network among other groups).
When she fell ill with ME/CFS in 2004, few, if any, research teams were seriously studying the disease. She states that she is thrilled that an increasing number of researchers across the globe are better analyzing the ME/CFS microbiome, metabolome, immune response and more.
Jennifer Brea became progressively ill with myalgic encephalomyelitis, commonly known as chronic fatigue syndrome, a debilitating illness that severely impairs normal activities and on bad days makes even the rustling of bed sheets unbearable. In this poignant talk, Brea describes the obstacles she's encountered in seeking treatment for her condition, whose root causes and physical effects we don't
fully understand, as well as her mission to document through film the lives of patients that medicine struggles to treat.
This talk was presented at an official TED conference
Former biologist shares story
of losing career to ME/CFS
Caroline Christian - ME/CFS is a spectrum illness, meaning that some people are only mildly affected while others are severely impacted to the extent that they are bed bound, unable to speak or move, and may require nutrition through feeding tubes. People can remain in this state for years before the disease finally takes them from B-cell cancers, digestive failure, heart failure, or more likely, suicide. I started out as moderate, but am now moderate to severe, with periods of being on the more severe side due to the fact that I was unaware of the dangers of PEM and pushed through my fatigue for years. There are many aspects of this illness that are challenging for me, but the hardest part is that I now live from hour to hour most days, and some days it is more like minute to minute. I never know when the rug is going to be pulled out from underneath me in the form of a minor or major health crisis.
Delays in diagnosis are probably one of the most substantial barriers facing people with ME/CFS, and that was certainly true with me. This happens because we do not yet have a good diagnostic test, apart from a brutal 2-day exercise test that demonstrates significant drops in aerobic function the day following exertion (this happens in no other illness that has been looked at). We lack a good diagnostic test because funding from NIH has been woefully inadequate, probably owing to the damaging views about this illness peddled by psychiatry. Why do most major illnesses have such a dark history of blaming the patients? How can we be living in the 21st century, with the technology we possess at our finger tips, and still not understand a disease that is more than four times as prevalent as multiple sclerosis (MS) and that carries a quality of life on par with late-stage AIDS and congestive heart failure (CHF)?
Lizzie Mooney,12 has myalgic encephalomyelitis. Her health has decreased over the past three years to the point where she can barely leave her house or even eat meals at the table with her family. | Photo- LILY WILLIAMS
Forgotten Plague is a journey into the
hidden world of
myalgic encephalomyelitis, CFS. It is
a chilling tale of our medical system’s
failures in addressing many chronic,
complex diseases. Yet it is also a riveting
story of science’s remarkable ability to
transform medicine and improve human life itself.
PEDIATRIC ME/CFS
Children afflicted with this disease
Scientific data needs to be brought in front of Congress. This debilitating disease needs a substantial increase of resources from the National Institutes of Health
It's time for the top medical scientist's to meet with congress and present their findings. The Centers For Disease Control (CDC) and the National Institutes of Health (NIH) need to be held accountable for their negligence in handling this disease (and that may take legal action). Physicians and medical institutions follow the lead of the CDC on how to treat disease, therefore, most doctors don't know how to diagnose or treat ME/CFS and the patients end up loosing their rights to disability insurance as well as medical and health benefits due to the ignorance and negligence of the medical system.
The NIH awards grant funds based on
its burden of disease formula:
https://www.nih.gov/about-nih/what-we-do/budget
https://report.nih.gov/categorical_spending.aspx
RESEARCH | ME/CFS is severely UNDERFUNDED
All serious illnesses including Cancer, MS, ALS, Alzheimer's, Lupus, Heart and Lung disease etc. all warrant funding by dollar ratios for research.
Research funding for ME remains less than what the government spends on headaches or hay fever. Multiple sclerosis funding is 12 times the funding for ME, but an estimated 400,000 patients in the U.S. have MS, fewer than half the number who have ME even according to the most conservative estimate. Below is how ME/CFS compares to two other NIH funded research programs:
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NIH funding for ME/CFS - $13 million
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NIH Allergy Study - $42.7 million So it may continue evaluating new approaches to treat food allergies. Established in 2005, the CoFAR has been continuously funded by the National Institute of Allergy and Infectious Diseases (NIAID), part of NIH-
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NIH ABCD Study- $278-300 million that will study childrens brains before they initiate drug use, through the period of highest risk for substance use and other mental health disorders. Scientists will track exposure to substances (including nicotine, alcohol, and marijuana), academic achievement, cognitive skills, mental health, and brain structure and function using advanced research methods (screen time on laptops and cell phones)
Pain interferes similarly in the life of someone with ME/CFS and someone with spinal cord injury, muscular dystrophy, or multiple sclerosis (Unger, 2013). More severely disabled ME/CFS patients may experience more pain (Marshall et al., 2010). Regardless of the definitions used, the presence of chronic regional and widespread pain in individuals with ME/CFS is associated with poor general health, physical functioning, and sleep quality independently of ME/CFS (Aaron et al., 2002). In a systematic review of chronic musculoskeletal pain in ME/CFS (which included studies using various ME/CFS diagnostic criteria), Meeus and colleagues (2007) concluded that there is no consensus on the definition of chronic widespread pain in ME/CFS, and while there is no strong proof of its exact cause or prevalence, this pain is strongly disabling.
_______________________________________________________________________________________________________________________
21st Century Cures Act
In FY 2017, Congress enacted the 21st Century Cures Act, authorizing $4.8 billion over ten years in support of high priority NIH initiatives and research areas: the Precision Medicine Initiative; the Brain Research through Advancing Innovative Neurotechnologies (BRAIN) Initiative; the Beau Biden Cancer Moonshot; and Regenerative Medicine. The NIH FY 2018 Budget includes $496 million authorized for these initiatives.
* A part of the U.S. Department of Health and Human Services (HHS), NIH is the largest biomedical research agency in the world.
Tell Congress To Give ME/CFS research more attention and funding
Provided by The Solve ME/CFS Initiative (SMCI)
Sign NIH petition for more funding to cure M.E. for 1-2 million Americans
M.E., Myalgic Encephalomyelitis, is a horrible disease affecting up approx 1 in 400, and a quarter are severely affected, not able to care for themselves due to neuroimmune degradation.
NIH Spends for R&D, per patient annually:
HIV/AIDS - $2500 per patient for 1.2 million patients
ME-CFS - $5 per patient for 1-2 million patients, with much worse quality of life vs HIV
AIDS Research took a death sentence & made this a manageable disease
ME-CFS needs the same level of effort to solve this worse disease that often is lifelong. Request $250M per year for ME-CFS R&D, so NIH can stop discrimination against ME-CFS and related diseases.
NIH DIRECTOR: FUND ME RESEARCH FAIRLY AND EQUALLY - I will not continue to passively accept the egregious lack of investment in ME/CFS. The care of our citizens is a human rights issue that should not and cannot be ignored. Please let me know what the NIH plans to do to allocate resources to advance ME/CFS research and save lives.
I am writing to demand that, under your leadership, the National Institutes of Health (NIH) increase funding for
Myalgic Encephalomyelitis (ME), commonly referred to as Chronic Fatigue Syndrome (CFS) to the level of
illnesses with a similar disease-burden.
________________________________________________________
U.S. Department of Health and Human Services (HHS) - Over the National Institutes of Health
Advisory Committee CFS | Office of the Asst. Secretary For Health
ME/CFS is a debilitating and complex disorder that severely impacts the life of 836,000 to 2.5 million Americans. At least 25% of these patients are either house- or bed-bound at some point during the course of their illness (The Institute of Medicine report – February, 2015). The illness is more disabling than heart failure, MS or end-stage renal disease. The loss to the U.S economy produced by ME/CFS is estimated between $18 – $51 billion annually in direct and indirect costs (CDC Public Health Grand Round, February 2016). The disorder has received comparatively little research and clinical support from the US government. For example, Multiple Sclerosis, a disease to which ME/CFS is compared in published studies, and which affects a fraction (250,000-350,000) of the estimated 2 million ME/CFS patients, receives an average of $94 million/year while federal support for ME/CFS averages only $5 million/year (NIH Categorial Spending Report, February 2016).
| HHS Advisory Committee on ME/CFS Website
VOICES | People afflicted with ME/CFS share their stories, thoughts, recommendations, etc. to the HHS Advisory Panel and Secretary of Health and Human Services | TRANSCRIPTS AND AUDIO PAGE >
______________________________________________________________________________________________
National Institutes of Health ME/CFS Working Group Meetings Advocacy Calls and Transcripts:
https://www.nih.gov/mecfs/events
Listen to the Audio/Read the Transcript
Additonal Contacts:
HHS Office of the Secretary
E-mail Address:
Phone Number:
202-690-7000
Director, National Institutes of Health (NIH)
E-mail Address:
Phone Number:
301-496-2433
Centers For Disease Control (CDC)
Director, National Center for Chronic Disease Prevention and Health Promotion
E-mail Address:
iws8@cdc.gov or
FUNDING vs EDUCATION | Medical students should be educated about and encouraged to research ME/CFS: A severe debilitating disease
The National Institutes of Health (NIH) invests nearly $30.1 billion annually in medical research
More than 80% of the funding is awarded through almost 50,000 competitive grants to more than 2,500 universities, medical schools, and other research institutions in every state and around the world. Below is a list of universities, including medical schools, ranked by how much in NIH funding they have received during the current 2018 federal fiscal year.
Many young students of today are driven by solving issues that past generations haven't been able to. We need to encourage them to take on this disease by letting them have access to the latest scientific medical research and let them tear down, disprove and rethink current hypothesis. They need to be applauded for thesis' that they submit on ME/CFS and be motivated to go into research with disregard to current medical ignorance.
So, with the amount of funding the NIH awards to universities and medical schools, doesn't it make sense to educate those same students and steer them to ME/CFS research based on the burden of disease criteria provided by the NIH?
Millions in grants are awarded to universities and medical schools - How much of that goes toward educating medical students that will be sent out into the system making diagnosis on this disease? How many medical research students are even made aware of this disease? The central part of the United States is lacking in education and understanding of this severe disease.
Dr. Ian Lipkin and the Center for Infection and Immunity at Columbia University have been awarded one of three NIH grants to produce a collaborative research center dedicated to ME/CFS.
The total research grant package – $35 million for three research centers and a data center over a 5-year period – is likely the largest single infusion of NIH funding into ME/CFS research ever. The highly competitive NIH process involved 10 grant applica-tions from across the U.S.
In addition to Columbia, the three research centers – the first dedicated NIH funded research Centers in over 15 years – include a Cornell Team lead by Dr. Maureen Hanson which will focus on the effects of exercise on the brain, the immune system and inflammation. Another study lead by Derya Unutmaz of the Jackson Labs will determine how the immune system, the microbiome and the metabolism interact to cause ME/CFS.
____________________________________________________________________
Doctors, researchers and nurses that are educated about this disease are nearly nonexistent in the Midwestern part of the United States. A large percentage of health care providers have never heard of the disease or still don't believe it is real; despite numerous scientific medical research findings. It has been reported that those who claim to understand ME/CFS are telling patients to only undertake graded exercise and cognitive therapy, which has been proven to do severe harm and may do irreversible health damage.
Top NIH-funded Universities
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Johns Hopkins University
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University of Michigan
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University of California, San Francisco
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Yale
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Washington University, St. Louis
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University of Pittsburgh
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Duke University
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Stanford
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University of Pennsylvania
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University of Washington, Seattle | Full List
Medical Education Scholarship Research and Evaluation (MESRE)
The mission of the Section for Medical Education Scholarship Research and Evaluation (MESRE) is to enhance the quality of research in medical education and to promote its application to educational practice.
The goal of the Section is to continuously improve the conduct of medical education research by:
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Continuing scholarship and application of new knowledge;
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Improving the quality of training in medical education research and fostering the continued development of researchers;
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Facilitating collaboration among individuals representing a broad range of disciplines who contribute to scholarship in medical education;
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Through the annual RIME Conference, facilitate the exchange of research findings, disseminate the results of this research, and encourage their application to educational practice.
GEA Nationl Grant Award
The GEA seeks to fund research projects that address important problems or questions in medical education. Proposals that foster collaboration are strongly encouraged. This includes collaborations among GEA sections (UME, GME, CPD/CME), across GEA regions (CGEA, NEGEA, SGEA, WGEA) and/or proposals that engage multiple schools, professions or departments.
| About the GEA
The purpose of the Group on Educational Affairs (GEA) is to promote excellence in the education of physicians throughout their professional lives and, thereby, to contribute to improving the health of the public. The GEA fosters:
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the development and continued improvement of medical education programs to enhance physician learning;
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the professional development of teachers of medicine;
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the advancement of research in medical education and the dissemination of the results of that research;
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the development of policies that recognize the fundamental importance of medical education. A primary function of the GEA is to advocate the enhancement of medical education by:
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promoting communications between AAMC and constituent groups;
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promoting communications among GEA members;
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by contributing advice and input from informed GEA members to the AAMC on matters related to medical education.
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Contact the Association of American Medical Colleges (AAMC) and the Group on Educational Affairs (GEA) to bring awareness and urge more education research and funding for ME/CFS
The Association of American Medical Colleges
Group on Educational Affairs (GEA)
To The National Institutes of Health
Please educate the many doctors and researchers
in the Midwest that are unaware of this disease.
Patients have nowhere to turn, are left on their own for treatment, or are forced to travel to the east or west coast, which is nearly impossible for most who suffer from ME/CFS.
NIH announces recent
Medical Research
Scholars Program Class
The National Institutes of Health has selected 42 talented and diverse students, representing 35 U.S.-accredited universities, for the sixth class of its Medical Research Scholars Program (MRSP). The MRSP received a record number of applications during the 2017-2018 application cycle.
“This year-long research enrichment program is the starting point for a successful research-oriented career. These 42 scholars represent some of this country’s most promising future biomedical researchers and academic leaders,” said Frederick P. Ognibene, M.D., director of the Office of Clinical Research Training and Medical Education, NIH Clinical Center.
This residential program enables scholars to conduct basic, clinical, or translational research in areas that match their personal interests and research goals. The mentored research training experience forms the core of the program and allows these future clinician-scientists and medical researchers to carry out research across the full spectrum of science in the interest of improving public health. Additionally, over the course of the academic year, MRSP scholars participate in courses, journal club seminars, a structured lecture series, and clinical teaching rounds. They also present their research to the NIH community and at domestic professional conferences.
Medical Research Scholars Posed in Lab
Participants in the National Institutes of Health (NIH) Medical Research Scholars Program (MRSP) conduct research in the Clinical Center. The MRSP is a comprehensive, year-long research enrichment program designed for U.S. citizens and permanent residents currently enrolled in an accredited medical, dental or veterinary program who have completed their core clinical rotations.
Credit: Clinical Center, National Institutes of Health
Stanford's Dr. Montoya discusses validity of ME/CFS
ME/CFS is a complex, multifaceted disorder characterized by extreme fatigue and a host of other symptoms that can worsen after physical or mental activity, but do not improve with rest. Dr. Montoya discussed clinical implications of recent scientific reports that are pinning down the development of this disease. Treatment implications and future avenues for research were also discussed.
Speaker | Dr. Jose Montoya, Professor of Medicine for the Division of Infectious Diseases and Geographic Medicine
SPECIAL FEATURE
From the American Society for Biochemistry and Molecular Biology
The push to make myalgic encephalomyelitis more visible; Opening the door to new advances in science
PEDIATRIC ME/CFS
Children afflicted with this disease
Lizzie Mooney lies on a couch at home. Few ME/CFS patients return to full health, even in remission. Recovery is rare, and symptoms often persist for a lifetime. Photo | LILY WILLIAMS
By Lily Williams for The ASBMB
For many ME patients, getting out of bed would be the highlight of their week or month. About 25 percent of patients are housebound, in rooms with the blinds drawn and noises muffled. Patients’ bodies are sensitive to all kinds of stimulation; they suffer from gastrointestinal problems, inability to sleep, chronic pain and the disease’s trademarks: cognitive dysfunction and post-exertional malaise, or PEM. Many patients describe PEM as a crash. Something as simple as a short walk can severely worsen a patient’s symptoms, leaving them bedridden, unable to recover, for weeks or months. There’s no telling how long the crash will last. Imagine having to decide between taking a shower and making yourself lunch. It could be your only activity for the week. Patients with ME have reported lower quality-of-life scores than patients with terminal cancer and heart disease.
Yet federal funding for ME research remains at a fraction of what is spent on each of these. In fact, research funding for ME remains less than what the government spends on headaches or hay fever. Multiple sclerosis funding is 12 times the funding for ME, but an estimated 400,000 patients in the U.S. have MS, fewer than half the number who have ME even according to the most conservative estimate.
Joseph Breen is the current chief of the immunoregulation section in the Division of Allergy, Immunology and Transplantation at the NIAID. “Fortunately, perspectives about the disease have changed,” Breen said. “Researchers now have the tools to explore possible etiologies of ME/CFS and future studies should be revealing, especially those with larger cohorts, initiated early after disease onset and with longitudinal follow-up.”
Lizzie Mooney is 12 years old. She is tall for her age with long blonde hair. She likes to wear Chicago Bears pajama bottoms and a hoodie. She’s funny, making up games and teasing her siblings.
Lizzie excels in reading and math. She spends time crafting and watches science shows with her parents at night. But it’s hard for her to make it downstairs to the TV room. She can’t go to school. In fact, she might only leave her house once a week. For the past three years, Lizzie has been sick. (See full story link below)
The government estimates that as many as 1 million to 2.5 million Americans have the same disease as Lizzie: myalgic encephalomyelitis, or ME. Despite these numbers, you probably haven’t heard of ME. What you might have heard of instead is chronic fatigue syndrome, or CFS. This euphemism for ME conjures an image of someone who just doesn’t feel like getting out of bed.
For decades, the search for pathogenic underpinnings for ME came up empty, and the disease was attributed to psychological causes. Stigma, skepticism and limited funding have fueled what advocates characterize as a vicious cycle that’s left a big hole in ME research. But advances in our understanding of the gut microbiome, cell-mediated immunity, mitochondrial dysfunction and dozens of other variables may open the door to new approaches to understanding and treating the disease.
While ME’s existence is no longer controversial, within the ME community, federal funding for ME research is. In recent years, the National Institutes of Health has spent between $5 million and $8 million a year on ME research. In 2017, the NIH earmarked $7 million for a first-time ME research collaboration of four centers. But some advocates say the government should be dedicating more than 50 times that amount.
Lily Williams has a B.A. in ecology, evolution and organismal biology from Vanderbilt University and an M.S. in science, health and environmental journalism from Medill School of Journalism at Northwestern University. She is a freelance journalist and communications director based in Asheville, N.C
ME/CFS in Children
Websites | Centers For Disease Control | Center For Parent Information Resources Website
____________________________________________________________________________________________
Top researchers in the U.S. currently working on ME/CFS
Stanford CFS Research Center
Dr. Ron Davis, PhD, Professor of Biochemistry and Genetics
Stanford University Medicine ME/CFS Initiative
Dr. Jose Montoya, Professor of Medicine for the Division of Infectious Diseases and Geographic Medicine
Columbia Center for Infection and Immunity -
Center for Solutions for ME/CFS
W. Ian Lipkin, MD, Epidemiology, Professor of Neurology and Pathology and Cell Biology, Director, Center for Infection and Immunity
Website: Columbia Center for Infection and Immunity
Cornell | Center for Enervating Neuroimmune Diseases
Maureen R. Hanson, PhD, Professor of Molecular Biology & Genetics
The Jackson Labratory
Derya Unutmaz, M.D, Professor for Genomic Medicine, Microbiology and Pathology
Nova | Institute For Nuero Immune Medicine
Nany Klimas, MD, Director, Institute for Neuro Immune Medicine, Nova Southeastern University
.
Myalgic Encephalomyelitis or ME, commonly referred to as Chronic Fatigue Syndrome CFS is a complex molecular, multiorgan, autonomic system disease for which no single diagnostic test yet exists. This highly debilitating immune disease is characterized by profound systematic fatigue, cognitive dysfunction, sleep disturbance, autonomic abnormalities, chronic or intermittent severe total body pain, microbiome abnormalities, cerebral cytokine dysregulation, natural killer cell dysfunction, and other symptoms that are made worse by exertion of any kind. Orthostatic intolerance and or postural orthostatic tachycardia syndrome are common. These symptoms are often significantly magnified
following physical or mental exertion. The disease can last for several months or can continue and worsen for several years leaving patients totally disabled and bed-bound.
INTERVIEW | Neuroscientist Michael VanElzakker: Vagus Nerve, ME/CFS, latent infection and more
A number of key pathogens such as the herpes viruses and the bacterial species Borrelia burgdorferi (Lyme disease) particularly like infecting nerve tissue (they are neurotropic). The hypothesis I put forward in my paper posits that, in ME/CFS, a number of different possible pathogen(s) may directly infect the Vagus Nerve. Resulting cytokine signals relayed to the brain then cause a sharp rise in “sickness response” symptoms. Because the signaling is directly on this sensitive nerve, the brain “overreacts” to these signals and sort of perceives that the entire body (and not just the Vagus Nerve) is infected with pathogens. If this is the case, these “sickness response” symptoms will be exaggerated. In addition, the signaling may not stop correctly, and could induce a snowball effect “feed forward” loop that sustains chronic symptoms. This would be similar to the way a war veteran might still sense pain in an amputated toe (inflammation has triggered a cascade reaction that can sustain itself).
RESEARCH
Resources:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative
A Stanford initiative dedicated to studying infection-associated chronic diseases
Jose G. Montoya, MD, is the head of the ME/CFS Initiative at Stanford University. For well over a decade, he has treated ME/CFS patients and conducted extensive clinical research in an effort to improve diagnosis and treatment of this debilitating illness.
Under Dr. Montoya’s leadership, the ME/CFS Initiative has had great success in engaging and collaborating with nearly 50 researchers across Stanford University and beyond. Together, they have discovered various potential biomarkers that have confirmed that ME/CFS is a real, physical disease. These discoveries are dramatically changing public and scientific opinions.
Fast-tracking revolutionary research for ME/CFS and related chronic complex diseases. Our mission, at Open Medicine Foundation (OMF), is to fund and initiate collaborative and groundbreaking research into chronic complex diseases so that patients will be able to live life more fully.
Led by our esteemed ME/CFS Scientific Advisory Board, we’re now focused on the End ME/CFS Project, designed to find biomarkers and effective treatments for myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS). These findings should also provide insights into related diseases, such as fibromyalgia and Lyme disease. Learn about our current study.
The Jackson Laboratory
Collaborative Research Center
Researches the mechanisms of human T cell differentiation, activation and regulation in the contexts of normal immune response, diseases and aging. Dr. Unutmaz has received one of the three Center grants for the ME/CFS project.
Cornell University
Collaborative Research Center
Maureen R. Hanson is Liberty Hyde Bailey Professor in the Department of Molecular Biology & Genetics. Dr. Hanson has received one of the three Center grants for the ME/CFS project. The Hanson Laboratory is located on the third floor of Cornell University's modern and well-equipped Biotechnology Building.
Columbia University
Collaborative Research Center
W. Ian Lipkin, MD, is internationally recognized as an authority on the use of molecular methods for pathogen discovery. Dr. Lipkin has received one of the three Center grants for the ME/CFS project.
Bateman Horne Center
Clinical Core
The Bateman Horne Center of Excellence is leading the way in the medical advancement and treatment of and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia.
Precise.ly
Precision Health through Personal Data
A health tracking application that’s soon to be partnering with Helix to focus on tracking symptoms for ME/CFS patients.
NIH ME/CFS Page
Study Resource
Working as a team with leadership from the National Institute of Neurological Disorders and Stroke (NINDS), the Trans-NIH ME/CFS Working Group identifies shared areas of interest and challenges to advance ME/CFS research. The Working Group provides evidence-based rationales for supporting ME/CFS research and attracting investigators to study this complex illness to NIH Institutes, Centers, and Offices.
Institute For Neuro Immune Medicine
Clinical Resource
Nancy Klimas, MD, has more than 30 years of professional experience and has achieved international recognition for her research and clinical efforts in multi-symptom disorders, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), Gulf War Illness (GWI), Fibromyalgia, and other Neuro Immune Disorders.
ME/CFS: A Primer for Clinical Practitioners
Primer for Clinical Practitioners
Written by the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Our goal is to provide the information necessary to understand, diagnose, and manage the symptoms of chronic fatigue syndrome — also known as myalgic en- cephalomyelitis (ME/CFS).
Cura’s mission is to improve human health and increase quality of life, globally.
We are passionate about the promise of cell and gene therapies. Part of our global mission is fundraising for further research and development. We also work with medical researchers, business and philanthropists, to foster unique collaborations that bring us all together to find cures.
The American Public Health Assoc.
APHA champions the health of all people and all communities. We strengthen the public health profession. We speak out for public health issues and policies backed by science. We are the only organization that influences federal policy, has a nearly 150-year perspective and brings together members from all fields of public health.
Human Rights and Health
ADVOCACY and PATIENT Resources:
Solve ME/CFS Initiative
Advocacy Group
SMCI envisions a world free of ME/CFS and works steadfastly to make this disease understood, diagnosable, and treatable. SMCI seeks to actively engage the entire ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding toward a cure.
ME Association
Advocacy Group
The ME Association aims to support people with ME/CFS through all stages of their illness.
Mass CFIDS
Advocacy Group
The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones.
MEAction
Advocacy Group
We focus our efforts in three main areas: Supporting and connecting people with ME and their caretakers, educating and advocating with and for people with ME, and organizing for long-term research, policy, and cultural change around ME.
Health Rising
Advocacy Group
Health Rising is dedicated to providing timely, accurate information to people with chronic fatigue syndrome (ME/CFS) and fibromyalgia.
Science for ME
Patient Forum
Our goal is to provide a platform to discuss all aspects of this disease, with a special focus on science, support, and advocacy.
Microbe Minded
Patient Advocate Resource
Amy Proal graduated from Georgetown University in 2005 with a degree in biology. While at Georgetown she wrote her senior thesis on the role of infectious agents in the disease Chronic Fatigue Syndrome.
The Chronic Fatigue Initiative
Mounted the first scientifically-rigorous and statistically-significant wide-scale research into the underlying infectious, immunological and toxicological causes of Chronic Fatigue Syndrome ("CFS"), which had previously attracted little to no resources for basic research. As the causes of the illness are deciphered, CFI's goal is to disseminate its findings in order to equip the broader research community to work on mechanisms of the disease as well as diagnostics, treatment and prevention. CFI, which is located in New York City, was created and funded by the Hutchins Family Foundation.
The American ME and CFS Society (AMMES)
Patient NonProfit
Seeking to channel patient perspectives to government agencies, committees and initiatives, and to unify the ME and CFS community by pursuing the common goals of expanding research, increasing knowledge about treating the disease, and educating health care professionals to help them make a timely diagnosis and alleviate the suffering of patients.
Occupy M.E.
Patient Advocate Resource
Jennie Spotila fell ill with ME/CFS in 1994 and has been active in writing about ME/CFS and advocating for more research funding since the late 1990s. Occupy ME is a blog about the politics, research, medicine, and personal experience of life with ME.
National Organization for Rare Disorders
For many years, people with rare diseases walked alone. Patients and their families coped with daunting medical and financial issues with few resources and no one to guide the way. Then, a small group of patient advocates formed a coalition to unify this community and mobilize support to pass the Orphan Drug Act. In 1983, the coalition became NORD, the National Organization for Rare Disorders. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community, driving supportive policies, advancing medical research, and providing patient and family services for those who need them most.
Unrest
ME/CFS Documentary by Jen Brea
Jennifer Brea is about to marry the love of her life when she’s struck down by a fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself and her community as she looks for answers and fights for a cure.
Most with this disease feel victimized by the attached stigma it brings. Escalated by a total ignorance, neglect, and arrogance of the medical, insurance and legal fields. They have failed to recognize the disease despite the latest, numerous scientific medical findings.
#MillionsMissing is a global movement calling for action for M.E., an under- funded and ignored disease.
INTERNATIONAL AWARENESS DAY | May 12
May 12 was chosen as International Awareness Day for Complex Immunological and Neurological Diseases (C.I.N.D.) since 1992.
The diseases included in C.I.N.D., such as myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS), chronic Lyme disease (CLD), fibromyalgia (FM), Gulf War illness (GWI), mold/biotoxin illness, multiple chemical sensitivity (MCS) and now includes post-sepsis syndrome.
