List of news articles on ME and CFS

Funding
'''I'm disabled. Can NIH spare a few dimes?'''

Washington Post: To Your Health section reprints Open Letter By: Brian Vastag.

"Three years ago, a sudden fever struck me on a blue-sky Wisconsin morning. I've been sick ever since. On my third “illiversary,” I presented an opportunity to Francis Collins, the head of the NIH:"

PACE trial
Hope For Chronic Fatigue Syndrome

SLATE: Health and Science Section By: Julie Rehmeyer

"The debate over this mysterious disease is suddenly shifting."

Illness
Huddersfield woman Nathalie Wright talks about the misery of living with ME

The Huddersfield Daily Examiner By: Nathalie Wright

"In this thought provoking first person feature Huddersfield 22-year-old Nathalie Wright reveals how her life has been devastated by the crippling illness ME. Nathalie grew up in Pole Moor above Slaithwaite, went to Wilberlee Primary School, Crossley Heath School in Halifax and then Greenhead College. Day and night became indistinguishable"

'No one chooses to have ME - everything changed when I became ill'

Independent.IE: Life Health Features Section By: Tom Kindlon

"As a new study suggests that ME can be beaten through therapy and exercise, long-term sufferer Tom Kindlon says it's not that simple"

What it's like to live with severe ME

The Telegraph By: Naomi Whittingham

"Ordinarily, illness is measured in days or weeks; and for the unfortunate months or even years. Then there are those of us for whom illness, pain and suffering is measured in decades. This is my twenty-fifth year of being ill: a quarter of a century spent mostly in housebound, bed-bound isolation."

Viewpoint: Telling the hidden story of chronic fatigue syndrome

USA Today: College By: Ryan Prior

"Seven months ago I wrote a story for USA TODAY College that changed the direction of my life.

I wrote of my six-year struggle with a little-known illness called Chronic Fatigue Syndrome (also called Myalgic Encephalomyelitis)."

Favourite place: Reminder never to take health for granted

Leamington Observer By: Laura Kearns

"MY FAVOURITE place isn’t particularly awe-inspiring, or even beautiful, but to me it is a reminder never to take your health for granted.

It is a small field behind my house on the outskirts of Nuneaton, not much bigger than half a football pitch.

But after months of being stuck in the house – which felt more like a prison – this field was the first place I visited, and where I felt my health was turning for the better."

A disease that causes debilitating exhaustion affects more than a million Americans, and no one's addressing it

Business Insider STAT By: Rivka Solomon

"It started with a bout of mononucleosis. Two college roommates and I got it at the same time. They felt better after a month. I didn’t."

'My life got taken away from me' - what it's really like to suffer from Chronic Fatigue Syndrome

The Telegraph By: Hannah Radenkova

"On hearing the news that Chronic Fatigue Syndrome (CFS) is finally being recognised by doctors as a 'real' illness, my first desire was to run around shouting 'I told you so!' at the top of my voice."

Funding
A job for a lone Congress member: Speak up for a forgotten disease

The Hill Congress Blog By: Llewellyn King

"The cause is research on Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome -- and often known by both sets of initials as ME/CFS. It's a disease I know quite a lot about because I've been writing and broadcasting about it for the last five years."

PACE trial
Reporter Excoriates Chronic Fatigue Syndrome Study: I Stopped at 14,000 Words-Enough Was Enough

California Magazine: By: David Tuller

"Years ago, I never thought to myself, ‘Hey, I’ve gotta be the guy who writes about chronic fatigue syndrome.’ I mean, why would I? It just sort of happened. When research suggested in 2010 that the illness might be linked to a mouse retrovirus, I wrote a piece about it for The New York Times.

After that I wrote another story, and then more stories, and then a few more—probably a dozen or so in all. But within a couple of years the mouse retrovirus hypothesis fell apart. And media interest in the illness vanished."

GET and CBT
ME – the truth about exercise and therapy

The Guardian: By: Jane Colby "However, in the latest study of GET and Cbt for people with chronic fatigue syndrome, researchers concluded that the treatment resulted in worse physical function and bodily pain scores (Clinical Rheumatology, 15 January 2011)."

Funding
Chronic fatigue syndrome recognized at last

San Francisco Chronicle By: Rivka Solomon

"After 30 years of neglect, the federal government promised late last month to bolster research on myalgic encephalomyelitis/chronic fatigue syndrome — the equivalent of promising to help multiple sclerosis or Parkinson’s, two other important neurological diseases with no known cause or cure."

Rethinking chronic fatigue syndrome

The Saturday Paper By: Sylvia Rowley

"Despite world-class research into chronic fatigue syndrome being undertaken nationally, government funding and support for sufferers is grossly lacking." (Note: This article was also in the Aug. 6, 2016 hard copy edition with the title "What about ME?"; online non-subscriber readers are allowed one free article per week.)

ME is often dismissed – but sufferers like Emily Collingridge are dying

The Guardian: Opinion By: Scott Jordan Harris

"How many young people have to die before 'chronic fatigue syndrome' merits properly funded biomedical research?"

The Tragic Neglect of Chronic Fatigue Syndrome

The Atlantic By: Olga Khazan

"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."

Stigmatized Chronic Fatigue Syndrome sufferers seek recognition

"As many as 400,000 Canadians suffer from Chronic Fatigue Syndrome, or Myalgic Encephalomyelitis. But according to a federal review, their condition is all in their minds.

Canada's largest scientific funding agency recently decided that ME/CFS is not deserving of research funding because it is not a legitimate disease, and more likely made up by patients."

PACE trial
'''Do you suffer from Chronic Fatigue Syndrome? There's some good news for you'''

Special Broadcasting Services Source: The Feed By: Naomi Chaney

"The Queen Mary University of London (QMUL) has been ordered to release previously withheld data from a treatment trial under the UK Freedom of Information Act. Patients and advocates hope the ruling will lead to more rigorous critique of the trial’s controversial treatment recommendations."

Illness
Jennifer Brea ’05: Shooting Pain - Struggling to capture life with chronic fatigue [sic] on film in Canary in a Coal Mine

Princeton Alumni Weekly By: Dorian Rolston '10

"One warm day last March, Jennifer Brea ’05 rose from her bed, walked out onto her deck, and lay down. It was a modest outing for someone who had been confined indoors for five months. Brea suffers from Myalgic Encephalomyelitis, a form of chronic fatigue that is inexplicably crippling and easily exacerbated. To capture what life is like for those with the disease, she is directing Canary in a Coal Mine, a feature-length documentary that is scheduled to be released in 2017."

Why it will take more than exercise and a positive attitude to help people with Chronic Fatigue Syndrome

Belfast Telegraph: By Kerry McKittrick

"After a psychiatrist sparked controversy by suggesting exercise and a positive attitude could help people recover from this chronic condition, two sufferers explain why it will take more than that."

Laura Hillenbrand releases new book while fighting chronic fatigue syndrome

The Washington Post By: Monica Hesse

"Then there are the more recent wins. The time she managed to take an entire shower standing up. The time she and her husband, Borden Flanagan, drove to the alley at the end of their block so she could see something other than the cemetery behind their yard, and the time, a few weeks later, that they drove all the way to Starbucks. Sat in the parking lot. Drove home."

The Unbreakable Laura Hillenbrand

The New York Times By: Wil S. Hylton

"Since 1987, Hillenbrand has been sick with chronic fatigue syndrome, which has mostly confined her indoors for the last quarter century."

I've gone from a super-fit party girl to being almost bedridden at 33

Liverpool Echo News By: Dawn Collinson

"Just 18 months ago, Faye Dempsey had a career, ran up to eight miles a day and loved a night out with friends. Now, she says, she's like a prisoner in her own body, wracked with pain so badly there are days when she is virtually bedridden."

ME/CFS is 'poor relation' of other neurological conditions say Worcestershire campaigners

Worcester News By: James Connell

"A DEBILITATING condition which feels like 'permanent flu' is being treated as 'the poor relation' of other neurological conditions say frustrated sufferers in Worcestershire."

‘Chronic Fatigue Syndrome isn’t What You Think it is, it’s Much Worse’

Huffpost Healthy Living By: Stephanie Land

"I found out recently an old friend of mine, Whitney Dafoe, has a severe disease. He’d posted on his website that he was sick, but when he’d said “Chronic Fatigue Syndrome,” I thought that meant normal or mundane tasks overly exhausted him and that was the end of his affliction. I thought he’d get over it, eventually. The last message I’d received from him said, “Can’t type,” and from that point he sent little red hearts and links to songs by John Prine. That was Thanksgiving of 2014."

Is chronic fatigue syndrome finally being taken seriously?

The Guardian By: David Cox

"CFS is believed to affect around 1 million Americans and approximately 250,000 people in the UK. The effects can be devastating."

Fatigue illness inspires documentary by filmmaker from Warner Robins

The Telegraph By: Michael W. Pannell

"While some still imagine the disease is "all in your head," Prior and others know otherwise. He said some cope with a measure of their former lives intact, but others enter a hidden existence of desperation and suffering."

Chronic Fatigue Syndrome (ME/CFS): Uncovering a Mystery

Healthy Magazine - Lifestyle - Wellness By: Michael Richardson

"When the media talks about a mystery illness, it’s often in reference to some obscure disease with a horrific symptom. But there is an elusive, misunderstood illness that affects more than a million Americans of all ages, and researchers are hustling to get a grip on it, to create better pathways of care."

Be Aware and Beware: Chronic Fatigue Syndrome Is an Equal Opportunity Disease

HuffPost - Healthy Living By: Maureen Hanson

"Two notorious outbreaks in the mid-1980s each affected hundreds of people. One was in a prosperous community at the edge of Lake Tahoe and another in a less affluent farming community near Lake Ontario. Most victims near Lake Tahoe were adults; most near Lake Ontario were children. Today, while some of the children have recovered to some degree, many of the adults remain very ill 30 years later."

Declan Vallance’s desperate search for a cure to mystery illness

Geelong Advertiser By: Bethany Tyler

"A MISUNDERSTOOD illness has progressively crippled a young Barwon Heads man who has spent the past four years searching for a cure.

The extreme pain and fatigue started when Declan Vallance was at university, and has gradually robbed movement from the 24-year-old by sapping energy from his arms, legs and now his vocal chords."

Research
With his son terribly ill, a top scientist takes on chronic fatigue syndrome

The Washington Post Health & Science By: Miriam E. Tucker

"Before he got sick, Whitney Dafoe was an award-winning photographer and a world traveler. He’d helped build a nunnery in India, ridden a motorcycle in the Himalayas and visited all 50 American states.

He also worked on Barack Obama’s 2008 presidential campaign, and although he was already ill by January 2009, pushed himself to travel to Washington from his California home to photograph the inauguration."

The puzzle solver - A researcher changes course to help his son

Stanford Medicine By: Tracie White

"For three years, Whitney Dafoe’s world has been a darkened room at the end of a hallway in the back of his childhood home. An insidious disease, one with no known cause or cure, has slowly stolen his life from him, turning his body into a prison."

Psychiatric paradigm
It's time for doctors to apologize to their ME patients - For too long the medical community has dismissed 'Chronic Fatigue Syndrome' as a mental illness which can be cured with therapy and exercise

The Telegraph By: Dr. Charles Shepherd

"The mud from the BMJ stuck. Like most doctors at the time, I left medical school believing that ME was not a real disease and I would probably never see a case. I was wrong."

Living life
Dear Graham Norton: I have M.E. and can't stop being jealous of friends

The Telegraph By: Graham Norton

"I’m sure you are getting the medical treatment you need but depression can often be associated with conditions such as yours, so make sure you are talking to someone about that alongside your M.E."

Financial hardships
Finanacial hardships of chronic illness

The Dominion Post By: Caitlin Slater

"In 1983, when Coddington was a high-achieving university student, she was struck down by a sudden flu-like illness. Years later she is still suffering. Her condition is called myalgic encephalomyelitis (ME) which followed a viral infection. Like Fibromyalgia, there is no cure for ME and no universally effective treatment."

Drug therapy success
Is This Why You're Still So Tired?

"O" Magazine By: Cheryl Platzman Weinstock

"Chronic Fatigue Syndrome finally gets its due."

PACE trial
Patients, Scientists Fight Over Research-Data Access

Wall Street Journal By: Amy Dockser Marcus

Article is paywalled.

"A controversy surrounding a study of chronic fatigue syndrome is prompting some scientists to push back against demands that they make medical research data more widely available to other researchers and patients."

The Misleading Research at the Heart of Disability Cuts

Huff Post - Politics - UK By: Dr. Simon Duffy

"Unfortunately it turns out that this research is often deeply flawed. For instance, the Centre for Welfare Reform has just published a report by George Faulkner which suggests that, on the basis of its published results, many of its claims cannot be validated."

Research
NIH announces new effort to tackle chronic fatigue syndrome

The Washington Post To Your Health By: Lenny Bernstein

"The National Institutes of Health announced a new initiative Thursday to find the cause and a treatment for chronic fatigue syndrome, the mysterious, debilitating condition that disables many of its more than 1 million Americans who have it."

Chronic fatigue syndrome: new diagnostic tool to speed up treatment and reduce stigma

ABC Gold Coast - Australia By: Damien Larkins

"Griffith University has developed a tool to diagnose CFS faster and hopes it will reduce the stigma around the disorder. Professor of Immunology Sonja Marshall-Gradisnik headed the research to develop the new screening tool."

Gut Bacteria Are Different in People With Chronic Fatigue Syndrome

The New York Times - Well By: Nicholas Bakalar

"A new study has identified a bacterial blueprint for chronic fatigue syndrome, offering further evidence that it is a physical disease with biological causes and not a psychological condition."

Brain images
Brains of People With Chronic Fatigue Syndrome Offer Clues About Disorder

New York Times: Well Section By: David Tuller

Brain Scans by Dr. Jose Montoya, Dr. Michael Zeineh and colleagues at Stanford University.

Unraveling the mystery of chronic fatigue syndrome

Palo Alto Online By: Sue Dremann

"Researchers are making headway toward finding evidence of chronic fatigue syndrome and how it may change the brain."

Chemical signature in blood
'Chronic fatigue IS a real condition': People with the debilitating illness have 'telltale signs in their blood'

Daily Mail.com

"It is often dismissed as being all in the mind. But chronic fatigue syndrome is real, doctors said today. They have shown that people with symptoms of the debilitating condition have a specific chemical signature in their blood."

Scientists find signature of Chronic Fatigue Syndrome in blood which suggests disease is the body going into hibernation

The Telegraph By: Telegraph Reporters

"A chemical signature of Chronic Fatigue Syndrome suggests the disease may be caused by the body going into a semi-hibernation state, a study has said."

Chronic fatigue syndrome could be the body trying to hibernate

The Times By: Tom Whipple

This article is pay-walled.

"Chronic fatigue syndrome may be caused by the body mistakenly going into a semi-hibernation state, a study has suggested."

Chronic Fatigue Syndrome could be identified from your blood

iNews Health By: Jem Collins

"It can take years to get a diagnosis for Chronic Fatigue Syndrome (CFS). However, a team of researchers from America claim to have found a unique “chemical signature” for the condition. If confirmed, it could pave the way for simple diagnosis tests, as well as better treatments."

How Chronic Fatigue Syndrome Affects Your Metabolism

Pacific Standard By: Nathan Collins

"There are somewhere around one or two million Americans with chronic fatigue syndrome (CFS), a disease that often leaves sufferers barely able to move or think. But after decades in the dark, researchers have finally taken a step toward better understanding CFS: Among other things, the disease is correlated with a substantial decline in metabolites, the waste products our cells produce as part of their normal function."

Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome

News Wise Source Newsroom: University of California San Diego Health Sciences

Dauer is the German word for persistence or long-lived. It is a type of stasis in the development in some invertebrates that is prompted by harsh environmental conditions. The findings are published online in the August 29 issue of PNAS.

‘Chronic fatigue syndrome could be the body trying to hibernate’

ME Association Source: The Times

From The Times, 30 August 2016. Story by Tom Whipple, Science Editor. Online link to full story not available.

"An estimated 250,000 people have CFS, also known as ME, in Britain. The mysterious disease, which is difficult to diagnose, causes people to suffer from persistent exhaustion and can strike with no obvious cause. Theories about the cause have ranged from a bacterial or viral infection to psychiatric issues, and there are few effective treatments."

Chronic-fatigue syndrome - Blood simple?

The Economist

"CHRONIC-FATIGUE SYNDROME, or CFS, which afflicts over 1m people in America and 250,000 in Britain, is certainly chronic and surely fatiguing. But is it truly a syndrome, a set of symptoms reliably associated together and thought to have a single underlying cause—in other words, a definable disease?"

Chronic Fatigue Syndrome May Leave A 'Chemical Signature' In The Blood

The Huffington Post Sleep+Wellness (Original article on Live Science)

People with chronic fatigue syndrome (CFS) can wait years before being diagnosed with the condition, and there is no singe test for it. But a new study may have found a "chemical signature" for the condition - a set of molecules in the blood that's unique to people with CFS.

Chronic fatigue syndrome may be a human version of ‘hibernation’

The Washington Post

"A new study raises the extraordinary possibility that humans may be able to put themselves into a kind of hibernation state as well — but in a way that hurts us rather than helps us."

Chronic fatigue resembles hibernation

NZ Herald By: Ariana Eunjung Cha

"A new study has raised the extraordinary possibility that humans may be able to put themselves into a kind of hibernation state - but in a way that hurts us rather than helps us."

Funding
Update: New, if Belated, Gov't Interest in CFS Encourages Patients

MedPage Today Neurology By: Shannon Firth

"In February, the National Academy of Medicine published a report attempting to better define the condition known as chronic fatigue syndrome, also called myalgic encephalomyelitis; in September, we reported that advisers to the Department of Health and Human Services recommended increasing funding for research into the condition.The following is a look at what has happened since that story."

Research
2015 Recap: Call for Real Answers to Chronic Fatigue Syndrome

MedPage Today Neurology By: Shannon Firth

"In 1996, Judith Curren, 42, took her own life with help from Jack Kevorkian, MD.

Curren was thought to have chronic fatigue syndrome (CFS), an illness associated with immune and neurologic symptoms that remains difficult to diagnose. A medical examiner questioned whether Curren was ever sick, according to The New York Times."

"The New York Times1 on July 7, 2016 featured an article about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) published on June 23, 2016. The Times heralds that this article “proves” that ME/CFS is not a psychological illness as it has long been scornfully conceptualized by doctors and the medical world. This is a good thing, I suppose…because it once again emphasizes that ME/CFS is a biological condition and once again emphasizes that infectious agents cause ME/CFS.

Chronic Fatigue Syndrome is Not Merely Dysbiosis

Psychiatry Advisor

Unfortunately, it takes the medical care of ME/CFS in the wrong direction."


 * The article continues...

"Moreover, the Giloteaux article puts undue causal value on the gut bacteria for the symptoms of ME/CFS. What they label as a precipitant may, in fact, be a consequence. Let me explain… Some studies have shown Human Herpes 6 and Epstein-Barr virus can impair the function of the human immune system. If one or both of these viruses indeed cause ME/CFS, and they invade the entire body, including the gut, then they could also disrupt the immune function of the gut. So, conceivably, the viral infection created a favorable environment for the pro-inflammatory bacteria. As a result, all of the disruption in the microbiome could stem from the underlying viral infection."

NIH Gears Up for First-Ever Chronic Fatigue Study - Patients' advocates share concerns about trial protocol, bias

MedPage Today Neurology By: Shannon Firth

"The National Institutes of Health gave the green light for a novel study of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), but the news elicited mixed reactions from patient advocates."

Brain imaging
Chronic Fatigue Patients Suffer 3 Major Brain Abnormalities; Findings May Lead To Clearer Diagnosis.

Private Health Care

"The incessant fatigue characterized by chronic fatigue syndrome (CFS) that affects between one and four million Americans is often quite difficult to diagnose. But a new study, which found three distinct differences between the brains of patients with CFS and those of healthy people, promises to revolutionize diagnosis and provide insight into the underlying mechanisms of the condition."

Chemical signature in blood
Researchers identify characteristic chemical signature for chronic fatigue syndrome

Eureka Alert

"Chronic fatigue syndrome (CFS) is a mysterious and maddening condition, with no cure or known cause. But researchers at the University of California San Diego School of Medicine, using a variety of techniques to identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation."

Chronic Fatigue Syndrome: Characteristic Chemical Signature Identified For Debilitating Ailment

Medical Daily By: Suman Varandani

"Chronic fatigue syndrome (CFS) is a debilitating and complex disorder that causes severe fatigue that is worsened by physical or mental activity and not improved by bed rest. While there is no cure or known cause for the debilitating ailment, researchers at the University of California San Diego School of Medicine have identified a characteristic chemical signature."

Chronic Fatigue Syndrome May Leave a 'Chemical Signature' in the Blood

Live Science Health By: Rachael Rettner

"People with chronic fatigue syndrome (CFS) can wait years before being diagnosed with the condition, and there is no single test for it. But a new study may have found a "chemical signature" for the condition — a set of molecules in the blood that's unique to people with CFS."

Characteristic chemical signature for chronic fatigue syndrome identified

Science Daily Source: University of California - San Diego

"Chronic fatigue syndrome (CFS) is a mysterious and maddening condition, with no cure or known cause. But researchers, using a variety of techniques to identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation."

Association of biomarkers with health-related quality of life and history of stressors in myalgic encephalomyelitis/chronic fatigue syndrome patients

Journal of Translational Medicine

"Conclusion: In ME/CFS patients, severe alterations of the muscle excitability, the redox status, as well as the CD26-expression level are correlated with a marked impairment of the quality-of-life. They are particularly significant when infectious stressors are reported in the medical history."

Chronic fatigue syndrome appears to leave a 'chemical signature' in the blood - And it's similar to that of hibernating species.

Science Alert By: Josh Hrala

"Researchers have uncovered a chemical signature for chronic fatigue syndrome (CFS), and found that the condition shares certain hallmarks with a type of hibernation that certain species undergo to survive environmental stress."

Biological evidence of chronic fatigue syndrome found in sufferers’ blood

Science AAAS

"Chronic fatigue syndrome (CFS) affects 2.5 million Americans, often leaving them unable to think or move."

Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome

UC Sandiego Health By: Scott LaFee

"Chronic fatigue syndrome (CFS) is a mysterious and maddening condition, with no cure or known cause. But researchers at the University of California San Diego School of Medicine, using a variety of techniques to identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation."

Advocacy
Chronic Fatigue Patients Take to the Streets - Global protest highlights demands for more research, physician education

MedPage Today Neurology By: Shannon Firth

"The chronic fatigue syndrome community demanded stronger investment in scientific research, and greater accountability from public agencies to address their illness, at the recent "Millions Missing: A Global Day of Protest for ME/CFS."'