CHRONIC FATIGUE SYNDROME
www.vitality101.com/about-dr-teitelbaumsolvecfs.org/cfsunravelled.com/ans-rewire/www.medicalmedium.com/www.nbcnews.com/health/health-news/nih-study-takes-deepest-dive-yet-baffling-condition-n754271Scientists Edge Closer To Elusive Lab Test For 'Chronic Fatigue Syndrome'July 31, 2017·3:07 PM ET
Miriam E. Tucker
In addition to profound exhaustion that isn't relieved with sleep, the illness now called ME/CFS includes flu-like symptoms, muscle pain, "brain fog" and various other physical symptoms, all of which typically worsen with even minor exertion.
Malte Mueller/Getty Images
Imagine feeling horribly sick, day after day, yet doctors repeatedly tell you they can't find anything wrong. That typically happens to people with the mysterious illness commonly known as "chronic fatigue syndrome." Research findings from Stanford University released Monday could point the way to a long-sought diagnostic laboratory test for the condition, and possibly a first-ever treatment.
Believed to affect at least a million people in the U.S., the condition is now increasingly termed myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS for short.
Many patients see the name "chronic fatigue syndrome" as trivializing and misleading, giving the impression that they're simply tired or depressed. In fact, they're actually experiencing profound exhaustion that isn't relieved with sleep, flu-like symptoms, muscle pain, "brain fog" and various other physical symptoms, all of which characteristically worsen with even minor exertion. (A 2015 Institute of Medicine report proposed the name "systemic exertion intolerance disease," but it hasn't really stuck.)
Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It
Shots - Health News
Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It
The symptoms can range from mild to extremely severe, with about a quarter of patients so ill they're mostly or completely confined to bed. Now, the Stanford researchers have linked ME/CFS to variations in certain cytokines, immune-signaling proteins, that track with illness severity. The study results were published online Monday in the the Proceedings of the National Academy of Sciences.
The link to gradation in severity, rather than simply seeking a positive versus negative result, represents a new approach to the search for biological markers for the illness. The study involved 192 ME/CFS patients and 392 healthy controls matched for age and sex. Out of 51 cytokines investigated via sophisticated fluorescence-based testing, only two of the cytokines differed, in their total concentrations, between the ME/CFS and control groups.
But, levels of 17 of the cytokines varied dramatically between the patients with mild versus severe ME/CFS symptoms. Of those 17 cytokines, 13 were types that promote inflammation. This is significant because symptoms in these patients and findings from other studies also suggest that chronic inflammation plays a major role in the illness.
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Jennifer Brea: What Happens When You Have A Disease Doctors Can't Diagnose?
"This is a field that has been full of skepticism and misconception, where patients have been viewed to have invented their disease. These data clearly show the contrary, and demonstrate what can be achieved when we couple good research design with new technology," lead author Dr. Jose Montoya, professor of infectious diseases at Stanford, tells Shots.
According to Dr. Anthony L. Komaroff, a Harvard internist and epidemiologist who has written a commentary to accompany the study, "For many years medical scientists have speculated that the symptoms of ME/CFS might be caused by cytokines, molecules that the immune system use to wage war against foreign invaders of the body. Past studies have shown high levels of many cytokines but it was not clear that these high levels were causing symptoms."
What the latest research shows, Komaroff tells Shots, is that "levels of many cytokines do correlate with symptoms: The higher the blood level, the worse the symptoms. That supports the theory that the cytokines are a cause of the symptoms."
So why do routine lab tests that doctors order often come back negative or not informative in ME/CFS patients? Simply put, Montoya says, those tests aren't measuring the right things.
Two classic laboratory measures of inflammation are sedimentation rate — the ability of red blood cells to clump together, which isn't a factor in ME/CFS — and C-reactive protein, which reflects levels of a single cytokine that wasn't one of those linked to severity in this study.
"Inflammation is much more complicated than two imperfect old measures," Montoya says. "We're showing an inflammation that has not been seen before."
The multidisciplinary Stanford team is now working on developing a panel that could be used commercially, that would test for around five of the 17 cytokines and would likely involve the doctor first classifying patients by severity in order to interpret the results. Such a test could both establish the diagnosis and serve to monitor patients' responses to treatment.
What's more, the findings also point to possible treatment with immune-modifying or anti-inflammatory therapy. Montoya hopes that by publishing these findings "a team of researchers somewhere in the world will see these cytokines and say they have the drug for that inflammation. We hope drug companies will pursue it."
Indeed, a major drug trial is now being conducted in Norway investigating whether the immune-modifying drug rituximab alleviates ME/CFS symptoms, after preliminary studies suggested that it did in some patients. Interestingly, the drug is approved to treat certain autoimmune diseases and also non-Hodgkin lymphoma, a cancer that one study found uniquely occurs at a higher rate among older people with ME/CFS.
Chronic Fatigue Syndrome Research Gains Funding, And Controversy
Shots - Health News
Chronic Fatigue Syndrome Research Gains Funding, And Controversy
Komaroff also notes a recent increase in research funding by the National Institutes of Health, which has included a comprehensive in-house study aimed at unraveling the underlying causes of the condition.
And in an ongoing privately-funded study, Stanford geneticist Ron Davis and a team including three Nobel laureates is taking a similar "big data" approach to investigate a group of ME/CFS patients who are all severely ill, including Davis' own adult son.
"There is much to learn," Komaroff writes, in the journal. "Hopefully, a decade from now, "doctors will know better what to measure and, more importantly, what to do to ease the suffering caused by this illness."
Miriam E. Tucker is a freelance journalist specializing in medicine and health. You can follow her on Twitter @miriametucker.
Panel Says Chronic Fatigue Syndrome Is A Disease, And Renames It
February 11, 2015·11:41 AM ET
Miriam E. Tucker
Chronic fatigue syndrome has been a controversial name and a controversial diagnosis.
Erica Shires/Corbis
The mysterious and complicated illness that has been called chronic fatigue syndrome has a new definition and a new name: systemic exertion intolerance disease, or SEID for short.
The name change is big news because many patients and experts in the field hate the name chronic fatigue syndrome; they feel that it trivializes the condition. Another name, myalgic encephalomyelitis, has been used in Canada, the United Kingdom and elsewhere, but it doesn't accurately describe the illness, either.“
"It is not appropriate to dismiss these patients by saying 'I am chronically fatigued, too.' "
IOM report
The condition, which can render people housebound or bedridden and unable to work or go to school, is believed to affect between 860,000 and 2.5 million Americans. Because there is no specific test for SEID, many people who have it haven't been diagnosed, and health care professionals often have viewed patients as complainers whose symptoms are psychological, not physical.
But a 15-member panel of the Institute of Medicine, an independent government advisory body with a lot of clout, says otherwise. In a report released Tuesday, the panel writes that the condition "is real" and admonishes clinicians, "It is not appropriate to dismiss these patients by saying 'I am chronically fatigued, too.' "
The new definition, for use in adults and children, focuses on the disease's core symptoms:
◾Profound fatigue lasting at least six months;
◾Total exhaustion after even minor physical or mental exertion that patients sometimes describe as a "crash" and is known medically as post-exertional malaise;
◾Unrefreshing sleep;
◾Cognitive impairment (aka "brain fog") or a worsening of symptoms upon standing.
This definition is much simpler than some previous ones for chronic fatigue syndrome and myalgic encephalomyelitis. And it doesn't require doctors to run a bunch of expensive and time-consuming tests to rule out other causes for the patient's symptoms before making the diagnosis.
In the 235-page report, the panel summarizes the scientific evidence it used to come up with the new definition, as well as for other aspects of the condition, including links to viruses such as Epstein-Barr (the cause of mononucleosis), and studies showing that people with the disorder have abnormal immune systems.
The condition has had all sorts of other names in the past, including epidemic neuromyasthenia, myalgia nervosa, and Royal Free Disease, after the British hospital where an outbreak reportedly occurred in 1955.
Systemic exertion intolerance disease might not roll off the tongue, but the panel chose it very purposefully, says Dr. Lucinda Bateman, a panel member who runs a fatigue specialty clinic in Salt Lake City.
"For years, nobody has been able to come up with an alternate name. We struggled, but we tried to pack each word with meaning," she said.
“
The panel chose "disease" rather than "disorder" because "it's a stronger word."
Dr. Lucinda Bateman
Rather than use a name that presumes a cause, the IOM committee decided to name the disease by focusing on post-exertional malaise, the core symptom. "Systemic" indicates that the reaction to exertion involves the entire body, while "intolerance" implies impairment. "Glucose intolerance," for example, is a medical term used in relation to diabetes.
And, Bateman told Shots, the panel chose "disease" rather than "disorder" because "it's a stronger word."
Beyond encouraging physicians to take the condition seriously, diagnose patients and treat their symptoms, the panel also intends for the document to spur more research funding. As more information becomes available, both the diagnostic criteria and the name are expected to evolve. The goal is to identify markers in the patient's blood or body tissues that can be used both to diagnose the illness and as targets for treatment. Indeed, the report calls for a re-evaluation of both the definition and the name in "no more than five years."
Does Chronic Fatigue Syndrome Need A New Name?
"Change is not easy in any system, especially complex systems," Bateman says. "But I think we have about as good a foundation as we possibly could have to jump-start this process."
Patient advocates — some of whom were concerned about the IOM endeavor when it began over a year ago — are now cautiously optimistic. Jennie Spotila, a patient and former attorney who writes a widely read blog about the illness, tells Shots, "I think the IOM panel got a lot of things right with the new criteria. They focused on the central feature of the disease, post-exertional malaise, and limited the required symptoms to a short list."
Spotila praised the new name both for focusing on post-exertional malaise and for using the word "disease," although she also predicted that "SEID will be controversial, especially for the advocates like myself who argued for use of the term myalgic encephalomyelitis. ... I would like to see data that support SEID as a better name."
Asked whether she believes the IOM report will help patients, she responded, "That all depends on how widely and how accurately the criteria are implemented."
www.npr.org/sections/health-shots/2015/02/11/385465667/panel-says-chronic-fatigue-syndrome-is-a-disease-and-renames-itInvisible Illness - Stories of Chronic Fatigue Syndrome
Unrest (documentary about ME/CFS) premiere on Sundance Film Festival – 19-01-2017
By nicolas -
January 20, 2017
Unrest has been selected as one of the highly anticipated narrative documentaries to receive a world premiere at The Sundance Film Festival at the Sundance resort in Utah, USA in January 19-29th 2017, it was announced today.
Director Jennifer Brea was a journalist and academic studying for a PhD at Harvard. Months before her wedding, she became progressively ill, losing the ability to even sit in a wheelchair. When told by her doctor it was “all in her head,” her response was to start filming from her bed, gradually deploying crews globally to document the world inhabited by millions of patients that medicine forgot.
Unrest tells the story of Jen and Omar, newlyweds facing the unexpected, and the four extraordinary M.E. patients that Jen meets throughout her journey, in the United States, UK and Denmark. Together, they explore how to make a life of meaning when everything changes. The film is a feat of disability filmmaking, made with an international team and using innovative technologies to allow the bedbound, disabled director to travel the world and film as if she’s in the room.
Unrest is a story of resilience in the face of life-changing loss, of how we treat people with illnesses we don’t fully understand yet, about how confronting the fragility of life can teach us its value, and ultimately, about the need we all have to connect.
Director & Producer Jennifer Brea said, “I am thrilled and honored that this documentary film is launching at Sundance, one of the most prestigious international film festivals in the world. M.E. upended my life and I battle with its debilitating symptoms everyday. Still, it has been the privilege of my life to make this film. It is with thanks to the collaboration of an amazing team and a host of wonderful supporters that we have been able to share unheard stories of what it is to fight against a life-long, invisible illness.”
Myalgic Encephalomyelitis (M.E.) is a systemic neuroimmune condition characterised by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of M.E. are devastating enough to leave 25% of patients housebound or bedbound. In many parts of the world, it is commonly known as Chronic Fatigue Syndrome.
It is estimated that at least 1,000,000 Americans, 250,000 British people, 100,000 Australians, and 100,000 Canadians have M.E. An estimated 75-85% of them are women and 80-90% of them are undiagnosed. *Estimates vary depending on the diagnostic criteria used.
Unrest is made with the generous support of:
Impact Partners, the William F. Harnisch Foundation, Chicken & Egg Pictures, BRITDOC’s Good Pitch, the Tribeca Film Institute, the Fledgling Fund, IFP, Women in Film Los Angeles, the Sundance Institute, and over 2,500 backers from a Kickstarter campaign in 2015.
What happens when you have a disease doctors can't diagnose | Jennifer Brea
Published on Jan 17, 2017
Five years ago, TED Fellow Jen 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.
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