CFS/ME

Shining A Light On Chronic Fatigue Syndrome, A Little Understood Disease Among Doctors

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  By Jennie Spotila, For the Inquirer.   I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]

Humans of ME/CFS – Camille C.

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  From Solve ME/CFS Initiative.   I was an elementary school music teacher, community volunteer, church pianist, wife, and young mother when I became ill in March, 2000. My doctor said I had mono and I was totally bed bound. The sickness wiped away my memory and I lost memories of my children as babies, […]

Open Medicine Foundation Sponsors Second Annual Community Symposium On The Molecular Basis Of ME/CFS At Stanford University

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    From Market Insider.   LOS ANGELES, Sept. 20, 2018 /PRNewswire/ — Open Medicine Foundation (OMF), the premier nonprofit organization investing in research to cure myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sponsors the Second Annual Community Symposium on the Molecular Basis of ME/CFS on September 29, 2018, at Stanford University. This event is expected to draw more than 300 scientists, […]

Investigating The Causes Of Chronic Fatigue Syndrome

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    By James Moore in Patient Worthy.   According to a story from Medical Xpress, chronic fatigue syndrome is one of the most poorly understood diseases. Although the name chronic fatigue syndrome seems to merely suggest that patients are just run down or overly stressed, the reality is that the disorder can lead to severe […]

Stagnant Hypoxia – Where Chronic Fatigue Syndrome And Hyperadrenergic POTS Meet ?

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  By Cort Johnson in Health Rising.   Despite the current lack of consensus as to the underlying biological basis of CFS, there is considerable evidence … to highlight an abnormality of the autonomic nervous system as a unifying pathological factor. Newton et. al. 2013 A fascinating case of research confluence took place a couple of […]

It Seems Impossible That People Don’t Believe Having ME Is A Serious Illness

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  By Skye Wheeler in HUFFPOST.   Myalgic Encephalomyelitis, chronic fatigue syndrome, CFS/ME. These are just a few terms to describe one of the most destructive illnesses known to man. Manifesting as unrelenting fatigue and profound pain, ME/CFS is destroying the lives of 250,000 people in the UK. One in four are so severely affected […]

The Chronically Ill Student

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  By Jo Hadler in ME Support.   I was 14 when I began to notice that I was different from my school friends. I had what I thought were growing pains in my legs, stomach problems, felt sick, had frequent headaches and worst of all, I had no energy. After many blood tests and […]

Chronic Fatigue Syndrome Is A PHYSICAL Condition Not A Mental Illness, Says Ellen Wiles

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  By Ellen Wiles in The Express.   Before I fell ill life was sweet and full of promise. Fresh out of Oxford University, where I had somehow come top in the year, I was working in consultancy while I figured out what I really wanted to do. Then just before Christmas I got flu. I spent […]

My Promised Saline IV Update. How Did It Go ?

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  By Anil van der Zee, from his Blog, Capture, Dance, Words.   This year I’ve arranged for saline IV’s. As I have a hard time tolerating any medication, and I’m not improving enough because of it. Saline IV’s seemed to be the best solution to help with my orthostatic intolerance or rather my postural […]

What Acceptance Looks Like After My Chronic Fatigue Syndrome Relapsed

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  By Gemma Cresswell in The Mighty.   Years ago, I was able to confidently see the positive sides of how myalgic encephalomyelitis (ME) had affected my adolescence and made me the person I’d become. Yes, it had been tough, isolating and upsetting, but being seemingly on the other side of it, I could see how […]

Could This Documentary Change The Way We Perceive Chronic Fatigue Syndrome ?

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    By Guy Kelly in The Telegraph.   It has been more than 60 years since a bewildering epidemic swept through the Royal Free Hospital in north London, rendering almost 300 members of staff incapacitated and forcing the place to close for three months. At the time, in 1955, the mysterious, polio-like outbreak (called […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

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    From the CDC (Centers for Disease Control and Prevention) Website.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and […]

Trial By Error: Another Letter to NICE’s Sir Andrew Dillon

David Tuller

  By David Tuller.   First, for those who might have missed it, here’s a conversation from This Week in Virology (TWiV), posted a few days ago. Dr. Racaniello and I discuss the CDC, NICE, Esther Crawley’s ethically challenged behavior, the CMRC, and other stuff. Second, earlier today, I sent the following e-mail to Sir Andrew Dillon, […]

The Ambiguous Term “ME/CFS”: Why ME And CFS Cannot Be Combined

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    By Jerrold Spinhirne on his Facebook Page.   Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality, however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research […]

The York ME Community Links With Disability Employment Company evenbreak

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    The York ME Community has linked up with The Disability Employment Company evenbreak. This is a company run by disabled folk who believe that disabled people deserve an ‘even break’. Evenbreak, a not-for-profit social enterprise, was formed to achieve three aims: • To help inclusive employers attract more talented disabled people; • To […]

My Life As ‘Little Miss Brain Fog’

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    By Jane Shaw in The Mighty.   Like its name, myalgic encephalomyelitis is also rather complicated and extraordinary. The illness made Little Miss Brain Fog feel like Little Miss Dotty, Little Miss Scatterbrain, Little Miss Fickle, Little Miss Whoops, Mr. Bump, Mr. Topsy Turvey, Mr. Forgetful, Mr. Lazy, Mr. Muddle, Mr. Dizzy, Mr. […]

Precise.ly Chosen As Patient-Tracking Platform In ME/CFS Study

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By Linda Avey in prweb.   Precise.ly, Inc. has been selected to be the patient portal in a $40 million, five-year NIH-funded, multi-center study focused on the study of chronic fatigue syndrome (ME/CFS). It represents the first major research support for a condition that affects millions of Americans.   SAN FRANCISCO, (CALIF.) (PRWEB) OCTOBER 09, 2017 […]

Myth: ME Is A Mental Illness

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  By Riki Janssen in Observant.   Mythbusters Patients are not just a little bit tired, but are permanently exhausted. Sleeping doesn’t help much – if they can sleep properly at all – and they usually pay a high price for any physical exertion: remaining even more tired than they were, for days on end. According to […]

Bottom Of The Ramp

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  From The Occupy ME Blog.   In aggregate, 2017 turned out to be the biggest year of ME/CFS funding at NIH ever. But when I scratched the surface, I found bad news buried within the superficially good news. We are still at the bottom of the funding ramp that Dr. Collins promised us, and […]

RituxME

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    From Helse Bergen.   ​RituxME is a multicentre study conducted in five study centres in Norway: the Oncology Department at Haukeland University Hospital, the ME/CFS Centre at Oslo University Hospital (Aker), the Dept of Medicine at Notodden Hospital, the Dept. of Pain and Complex Disorders at St. Olav’s Hospital in Trondheim, and the […]

The SMILE Trial Lightning Process For Children With CFS: Results Too Good To Be True ?

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    A guest post by Dr. Keith Geraghty Honorary Research Fellow at the University of Manchester, Centre for Primary Care, Division of Population Health and Health Services Research in James C Coyne’s website, Coyne of the Realm.   The Advertising Standards Authority previously ruled that the Lightning Process (LP) should not be advertised as […]

For People With Chronic Fatigue Syndrome, More Exercise Isn’t Better

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  By Michaeleen Doucleff in npr.org. Health organizations are emphasizing that myalgic encephalomyelitis/chronic fatigue syndrome is a serious long-term illness, not a psychological disorder, and that standard forms of exercise do not help. Instead, they’re acknowledging that exercise can make the disease much worse unless doctors and patients are very careful. The Centers for Disease Control and […]

Science Media Centre Concedes Negative Reaction From Scientific Community To Coverage Of Esther Crawley’s SMILE Trial

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  By James C Coyne.   Those of us who are accustomed to the Science Media Centre UK (SMC) highly slanted coverage of select topics  can detect a familiar defensive, yet self-congratulatory tone to an editorial put out by the SMC in reaction to its broad coverage of Esther Crawley’s SMILE trial of the quack treatment, Phil Parker’s […]

Counting The Cost – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Julia Manning

    By Julia Manning, Founding Director 2020health.   About this report.   It is hoped that policy makers and commissioners will use this information to make decisions on the planning and funding of CFS/ME services and research. For the sake of clarity and relevance to UK public health, we adopt the nomenclature of ‘CFS/ME’ throughout this […]

Why Did It Take The CDC So Long To Reverse Course On Debunked Treatments For Chronic Fatigue Syndrome ?

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  By Julie Rehmeyer and David Tuller in statnews.com.   For years, people with chronic fatigue syndrome have wrangled with the Centers for Disease Control and Prevention over information on the agency’s website about this debilitating illness. The website highlighted two treatments that became the de facto standards of care: a gradual increase in exercise and a form of psychotherapy […]

I Live With Disabling Illness And Chronic Fatigue. It Has Taught Me To Ask For Help.

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    By Litsa Dremousis in The Washington Post. Remember the last time your WiFi went out? How you felt alone in an empty world? You tried to restart it yourself, to no avail. Then you called tech support, which was as helpful as pouring glue down a clogged drain. You were baffled that no one […]

Changing Hearts And Minds: A Review Of Unrest

Jen Unrest

  By Cort Johnson in Health Rising.   Unrest is about to spring into action. Scheduled to go into widespread theatrical release in dozens of theaters over the next couple of months: on Sept 22nd in the U.S. and Oct. in the U.K., Unrest is about to really make its mark. Jen Brea and her […]

Magnesium: Is Deficiency The Root Cause of Fibromyalgia, CFS/ME & More?

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  In Blog by Alyssa Reid.   According to USDA guidelines, it is believed that up to 80% of Americans are  deficient in magnesium.  When you read through the symptoms of magnesium deficiency, many of them ring true in regards to fibromyalgia and CFS/ME/SEID symptoms…So, I have to ask, is magnesium deficiency possibly the root […]

What Is ME/CFS? (From an American Viewpoint)

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      From the Solve CFS/ME Initiative.   Myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS), also known chronic fatigue and immune dysfunction syndrome (CFIDS), is a complex and debilitating chronic disease with a serious impact on one’s quality of life. What are the symptoms of ME/CFS? The most common symptoms of ME/CFS include post-exertional malaise (PEM), […]

PACE Trial’s ‘Sister’ Study Overlooked

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  Sasha Nimmo reports on David Tuller’s blog in #MEAction.   In his Virology blog post, David Tuller examines results of ‘sister’ to the PACE trial In 2003, when the United Kingdom (UK) Medical Research Council announced the PACE trial, they also announced the Fatigue Intervention by Nurses Evaluation (FINE) trial. Why haven’t we heard […]

Renowned Scientists Condemn PACE Study

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By Russell Logan in shoutaboutme.com   An international group of scientists has added to the growing condemnation of the PACE trial study, published in the Lancet in 2011, which has propped up poor government and clinical care policies for those with the serious neurological illness myalgic encephalomyelitis (ME), sometimes called chronic fatigue syndrome. An open letter from […]

Is There A Way Forward For CFS/ME?

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A story from Medical News Today. In 1988, a group of scientists reviewed a set of mysterious symptoms appearing in previously healthy young adults who succumbed to an unexplained, ongoing fatigue so severe that it disrupted their ordinary life. They named it chronic fatigue syndrome. Although it was not named until 1988, 19th-century physicians were already […]

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