List of news articles on ME and CFS

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

The Washington Post: To Your Health By: Brian Vastag. (20 Jul 2015)

"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 By: Julie Rehmeyer. (13 Nov 2015)

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

Worse Than the Disease

Undark By: David Tuller. (27 Oct 2016)

"After living in Oklahoma for 40 years, Nita and Doug Thatcher retired in 2009 to the Rust Belt city of Lorain, Ohio, a Cleveland suburb that hugs Lake Erie. When Nita needed to find a new primary care doctor, a friend recommended someone from the Cleveland Clinic. Nita knew the institution’s reputation for cutting-edge research and superior medical services. But as a longtime patient grappling with chronic fatigue syndrome, a debilitating disorder that scientists still don’t fully understand, she was wary when she learned that the clinic was promoting a common but potentially dangerous treatment for the illness: a steady increase in activity known as graded exercise therapy."

New Science Mag: Misguided Therapy For Fatigue Syndrome 'Worse Than The Disease'

WBUR: Common Health By: Carey Goldberg. (27 Oct 2016)

"There's a new science magazine on the block: Undark, named for a century-old radium paint that seemed wondrous at first but later turned out to be deadly.

Troubling indeed is the major story just out in Undark on what was once called Chronic Fatigue Syndrome — the preferred term now is myalgic encephalomyelitis, or ME. Reporter David Tuller has chronicled for years how flawed research led to faulty recommendations for patients that hurt rather than helped many of them."

A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)

Undark By: David Tuller. (19 Dec 2016)

"Two widely prescribed treatments for chronic fatigue syndrome — cognitive behavior therapy, and a steady increase in activity known as “graded exercise therapy” — provide no benefit to patients. That’s the stark conclusion of a new reanalysis of data from the so-called PACE trial, the largest study of treatments for the illness, also known as myalgic encephalomyelitis, or ME/CFS."

Getting It Wrong on Chronic Fatigue Syndrome

New York Times By: Julie Rehmeyer and David Tuller

"What are some of the treatment regimens that sufferers of chronic fatigue syndrome should follow? Many major medical organizations cite two: psychotherapy and a steady increase in exercise. There’s just one problem. The main study that has been cited as proof that patients can recover with those treatments overstated some of its results. In reality, the claim that patients can recover from these treatments is not justified by the data."

PACE trial data release
How millions of patients with a crippling, misunderstood disease were misled by bad science

STAT: First Opinion and Business Insider: Science By: Julie Rehmeyer. (21 Sep 2016)

"If your doctor diagnoses you with chronic fatigue syndrome, you’ll probably get two pieces of advice: Go to a psychotherapist and get some exercise. Your doctor might tell you that either of those treatments will give you a 60 percent chance of getting better and a 20 percent chance of recovering outright. After all, that’s what researchers concluded in a 2011 study published in the prestigious medical journal the Lancet, along with later analyses.

Problem is, the study was bad science.

And we’re now finding out exactly how bad."

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

The Huddersfield Daily Examiner By: Nathalie Wright. (26 Nov 2015)

"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"

The harsh reality of living with ME

The Telegraph By: Nathalie Wright. (31 Oct 2015)

"Every ME sufferer has a date etched into their memory: the day they realise they have fallen ill with a potentially life-long disease that leaves its sufferers paralysed by extreme exhaustion, bed-bound and in constant pain. On November 1, 2013, I became one of them."

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

Irish Independent: Life Health Features Section By: Tom Kindlon. (30 Oct 2015)

"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. (08 Aug 2014)

"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. (10 Jun 2013)

"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)."

Viewpoint: The real story of chronic fatigue syndrome

USA Today: College By: Ryan Prior. (02 Oct 2012)

"Understanding diseases from a different perspective can shed new light on the cause and cure.

Researchers published a study two weeks ago discrediting the link between the retrovirus XMRV and chronic fatigue syndrome (CFS), a little-known illness that the FDA says is as devastating as cancer, heart disease and epilepsy."

Viewpoint: Moving forward on chronic fatigue syndrome

USA Today: College By: Ryan Prior. (30 Oct 2012)

"Courtney Miller asked President Obama what his administration was doing to address chronic fatigue syndrome (CFS), an autoimmune disorder akin to multiple sclerosis (MS), on April 21, 2011."

Favourite place: Reminder never to take health for granted

Leamington Observer By: Laura Kearns. (31 Dec 2015)

"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. (27 May 2016)

"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. (05 Sep 2016)

"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."

My final year at Oxford, when I felt punished for having ME

The Guardian By: Nathalie Wright. (18 Oct 2016)

"This life shuddered to a halt when I suddenly became ill in the first term of my final year. I had glandular fever which, unbeknown to me then, had triggered ME – a chronic, extremely debilitating disease. As there was no way I could continue with my coursework, with the support of my GP I applied for a week’s extension. It was denied by the university."

What it's like to have Chronic Fatigue Syndrome, an illness that makes you feel exhausted all the time

Business Insider Science By: Alison Millington. (15 Nov 2016)

"After months of struggling both mentally and physically to do simple tasks, dealing with a constantly foggy brain and serious exhaustion that wouldn’t go away no matter how much I slept, a doctor told me I had Chronic Fatigue Syndrome (CFS)."

'''Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?'''

openDemocracy By: Naomi Whittingham. (19 Dec 2016)

"I live in a world largely hidden from view. Most of my neighbours do not even know that I exist. I was last seen as a child walking home from school 26 years ago. In the decades since, I have rarely left my house; when I do, it is in a wheelchair."

A psychosomatic diagnosis is a doctor’s way of saying, “I don’t have a clue”

Quartz By: Jamison Hill. (13 Jan 2017)

"For the last six years, I have fought to legitimize an illness widely—and erroneously—believed to be “all in your head.”

I have myalgic encephalomyelitis, a debilitating multi-system disease that the Centers for Disease Control and Prevention conservatively estimates afflicts more than one million Americans. It is commonly known as chronic fatigue syndrome, a truly trivializing name that belittles what I and other sufferers live with. (Though it is preferable to the condescending term “yuppie flu.”) Doctors have told many people with the disease—including myself—that there is no treatment, and more often, that what we are experiencing is merely a manifestation of the mind."

GET/CBT
CBT won’t cure my chronic fatigue, any more than it would cancer – it’s a physical illness

iNews By: Scott Jordan Harris. (01 Nov 2016)

"The announcement of a new initiative to offer online Cognitive Behavioural Therapy to teenage suffers of ME, also known as Chronic Fatigue Syndrome, has re-opened debate about whether ME is a mental illness."

Children with ME need relevant science, not pressure to do more, more, more

The Bristol Cable By: Jenny Horner. (24 Jan 2017)

"In November, Bristol University made national headlines for a £1m trial attempting to treat child ME sufferers using a specific form of cognitive behaviour therapy (CBT) over the internet. In chronic conditions, talking therapies can be useful support for the uncertainty and loss caused by illness. However, CBT is being used differently in ME with a strong agenda to increase activity, without treating the underlying disease. Bristol is also trialling a controversial ‘graded exercise therapy’ (MAGENTA trial). As an ME sufferer myself, I am deeply troubled to see the continued use of approaches to treat ME that can harm sick children instead of helping them."

Advocacy and awareness
‘No-one can give me answers to if I will get better’ – student who gave up dancing and sport through illness plans 4ft horse jump

The Weston & Somerset Mercury By: Sarah Robinson. (02 Nov 2016)

"Makayla Nunn, aged 13, was diagnosed with myalgic encephalomyelitis (ME) when she was eight years old.

Because of her illness, she has had to cut down her hours at school, and give up dancing and sport."

Dear anti-Trump protesters: don’t forget those of us with disabilities

VOX By: Jamison Hill. (10 Feb 2017)

"Between 3 million and 5 million people took to the streets as part of the Women's March the day after Donald Trump's inauguration. And on January 28 and 29, thousands of people descended on airports throughout the nation to protest Trump's "Muslim ban".

I was not one of the protesters. I have myalgic encephalomyelitis (or chronic fatigue syndrome), a disease that has left me bedridden and unable to speak full sentences for the past two years, more than a year of which I was unable to eat, tolerate light, elevate my head, or laterally move my limbs. I am one of the disabled who cannot march. I can't even attend a demonstration in a wheelchair."

Millions Missing
'''ME affects four times as many women as men. Is that why we’re still disbelieved?'''

The Guardian By: Nathalie Wright. (27 Sep 2016)

"Today friends and families of people with myalgic encephalopathy (ME) are taking to the streets of cities around the world to call for more funding for medical research and education about ME. I am joining them at the London demonstration of the Millions Missing campaign, outside the Department of Health."

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

The Hill Congress Blog By: Llewellyn King. (02 Jun 2015)

"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. (18 Nov 2015)

"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."

“No scientific ground to stand on”

Observant By: David Tuller. (27 Mar 2017)

"The PACE investigators continue in their refusal to actually address the key concerns raised about their study. First, they continue to refer to this as a "secondary" paper. While it is true that the PACE authors for reasons only they know designated "recovery" as a secondary outcome in the PACE protocol, "recovery" is surely not of secondary importance to patients, so dismissing the paper's significance in this way is unwarranted."

GET and CBT
ME – the truth about exercise and therapy

The Guardian: By: Jane Colby. (24 Feb 2011) "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)."

This Is Why I Quit Exercise Therapy When it comes to my illness, I've learned to listen to my symptoms, trust my body, and give it the one thing it really needs: rest.

Buzzfeed By: Camilla Maxted

"Weirdly, I was OK while doing the actual walk itself; it would hit me afterwards and I'd have to lie down, and I'd wake the next day feeling as though I'd run a marathon."

"After the worst phase of physical punishment for my efforts had passed, I also found that I'd lost the little function that I'd had before starting the exercise program."

"Am I angry that I was given the wrong advice? Of course. And my heart breaks every time I read another story of how graded exercise put another person with ME/CFS in bed. More than this, though, I'm angry at how needlessly we have suffered. Why was biomedical research not begun earlier? Why were psychiatrists allowed to squash exploration in this field, by taking it and calling it their own? Why, even now, are people being told to undertake exercise programmes without being informed of the risks?"

Funding
Chronic fatigue syndrome recognized at last

San Francisco Chronicle By: Rivka Solomon. (09 Nov 2015)

"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. (06 Aug 2016)

"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. (30 Mar 2012)

"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. (08 Oct 2015)

"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

CTV News. (10 Sep 2016)

"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."

Treatment guidelines and recommendations
Stop prescribing exercise to ME sufferers, doctors told

The Telegraph By: Emma Baines. (Oct 29, 2021)

"Campaigners hail ‘huge step’ towards better care as clinicians will instead work with patients to establish their energy limits."

Updated ME/CFS guidance finally published following controversy

Nursing Times By: Emma Baines. (Oct 29, 2021)

Graded exercise therapy (GET) should not be used to treat patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CSF) because it can worsen the condition, according to updated guidance from the National Institute for Health and Care Excellence (NICE).

The NICE guidance published today also states that cognitive behavioural therapy (CBT) should not be considered a cure for ME/CFS, although it may sometimes be beneficial in managing mental health consequences of living with the condition, as with any chronic illness.

Instead of being encouraged to push themselves to be more active, patients with ME/CSF should receive individually tailored support from a multidisciplinary team to help them manage their symptoms, and stay within their energy limit, the guidance recommends.

This recommendation reflects a shift towards considering ME/CFS as a complex, multi-system disorder instead of as a psychosomatic condition that can be treated or cured with psychological and/or behavioural interventions.

The NICE guideline includes clarifications to the diagnostic criteria that should be used to identify ME/CFS. It is characterised by four key symptoms: debilitating fatigue that gets worse following activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties known as “brain fog”. Anyone with all four of these symptoms lasting three months or more should be assessed by a ME/CFS specialist team.

“During my many years as a nurse, I have rarely encountered individuals who are as ill as people with the most severe ME/CFS. Even when people with mild disease consider themselves fully recovered, they have often simply adjusted their lives to manage its effects.

“The new ME/CFS guideline promises to treat people with ME/CFS with compassion, ensuring that the care they receive is safe and of the highest standard, and is delivered appropriately according to the needs of the individual.” &mdash;Caroline Kingdon

In draft guidance published earlier this year NICE said that based on the “low to very low” quality of the evidence supporting GET for ME/CSF, and because of the worsened symptoms reported by people with ME/CSF who have been treated with GET, it should no longer be used in this patient group.

This decision has been welcomed by ME charities and patient advocacy groups as a “step in the right direction”.

Dr Charles Shepherd, medical advisor to charity the ME Association, who was on the NICE committee that prepared the new guideline until he stood down in August this year, said: “People with ME have had to live with a NICE guideline for almost 15 years that was unfit for purpose – because it recommended treatments that were either ineffective or harmful.

'Don't exercise' doctors tell chronic fatigue patients

Birmingham Mail By: Robbie Purves. (Oct 29, 2021)

A controversial new report recommends patients with chronic fatigue syndrome should not exercise.

A highly anticipated final update on chronic fatigue syndrome treatment (CFS) has been published the National Institute of Health and Care Excellence (NICE).

Controversy on how to treat patients with myalgic encephalomyelitis (ME) or CFS, has raged by decades. Some patients find therapy, which encourages patients to slowly increase their levels of activity, makes their condition worse.

In the newly released report, NICE recommends people judge their own "energy limit" when undertaking any physically exertive movements.

It warns doctors: "Do not advise people with ME/CFS to undertake exercise that is not part of a programme overseen by an ME/CFS specialist team, such as telling them to go to the gym or exercise more, because this may worsen their symptoms."

'''ME exercise therapy guidance scrapped by health watchdog Nice

Victory for campaigners as therapy they rated ‘harmful’ is taken off list of recommended treatments'''

The Guardian By: Sarah Marsh. (Oct 29, 2021)

Graded exercise therapy has been removed as treatment from the guidance for managing chronic fatigue syndrome.

A disputed therapy that encourages people with ME to gradually increase physical activity will no longer be officially recommended, a health watchdog said, marking a victory for campaigners.

The controversial treatment, called graded exercise therapy, has been removed from guidance given by the National Institute for Health and Care Excellence (Nice) for diagnosing and managing myalgic encephalomyelitis, which is also known as chronic fatigue syndrome.

The long-awaited landmark guidance had been due in August but was put on hold following concerns from some groups over its contents. It is thought some health professionals had been unhappy with some of the recommendations made by Nice.

Illnesses
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. (04 Feb 2015)

"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. (10 Nov 2015)

"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. (28 Nov 2010)

"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. (18 Dec 2014)

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

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

Worcester News By: James Connell. (11 Mar 2016)

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

Is chronic fatigue syndrome finally being taken seriously?

The Guardian By: David Cox. (04 Apr 2016)

"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 and Dublin

The Telegraph (Macon) By: Michael W. Pannell. (05 Apr 2016)

"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 By: Michael Richardson. (06 May 2016)

"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

The Huffington Post By: Maureen Hanson. (20 May 2016)

"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."

The Real Story About Chronic Fatigue Syndrome – A devastating illness that needs a better name

Garnet News By: Maureen Hanson. (19 Oct 2016)

"Chronic Fatigue Syndrome is an illness that many may have heard of, but few, in reality, know much about.

The misconception of the seriousness of the disease is in part caused by the use of the name Chronic Fatigue Syndrome (CFS), coined in 1988 by a committee convened at the Centers for Disease Control. Prior to that recommendation, the disease was known by the more intimidating name Myalgic Encephalomyelitis (ME), which is favored by many patients and still used in many countries overseas. Chronic Fatigue Syndrome trivializes the nature of the disease and its impact on the lives of the people who suffer with it."

"Chronic fatigue is not a condition of the mind"

The York Press By: Kate Liptrot. (10 Nov 2016)

"Reports that Chronic Fatigue Syndrome, also known as myalgic encephalomyelitis (ME), can be treated with psychological therapies have frustrated those living with a very physical condition

For Bill Clayton, there has been little progress in understanding ME since it was first derided as “yuppie flu”."

Woman sleeps for up to 22 HOURS a day - but rare condition means she STILL feels tired

The Daily Express By: Katrina Turrill. (12 Nov 2016)

"Heather has been battling two debilitating conditions - myalgic encephalomyelitis (ME) and Kleine-Levin Syndrome, also known as Sleeping Beauty syndrome - for more than seven years.

Shockingly, her illnesses, which are not believed to be related, developed virtually overnight."

Finding new life at a snail’s pace

The Spectrum By: Al Cooper. (17 Nov 2016)

"Elizabeth Tova Bailey a hard-working professional gardener in Maine went on a short well-earned vacation to Europe where she encountered a mysterious and invisible pathogen that struck her down, leaving her totally devitalized and bedridden, unable even to sign her own name to a document. At the age of 34 she leaves her beloved Maine home and dog Brandy for a room in a convalescent studio where she lacks even the sight of the outdoors from a window she can’t raise her head to look out of."

ME cluster bomb

Private Eye: Medicine Balls By: Dr. Phil Hammond. (25 Nov 2016)

"MD's greatest regret as a junior doctor was not to take the time to understand ME (myalgic encephalopathy). As a result, MD was infected with the same prejudices as many of his peers, namely that ME was largely psychological, and an illness of the middle classes ("Yuppie Flu")."

Despite the number of Americans living with ME/CFS, little is known about the debilitating illness

Pittsburgh City Paper By: Rebecca Addison. (30 Nov 2016)

"Open eyes, wiggle toes, sit up, sink down, back up again. It’s 10 a.m. and Stefanie is just waking up. As part of her usual routine, she’d usually stay under the covers for only another hour before gingerly climbing out of bed.

But two days ago she overexerted herself. Add that to her usual brain fog, gastrointestinal issues and the not-so-usual muscle aches she’s been feeling and it equals another day spent in bed. It will be her second day in a row, just one of a handful of days this month, and of a few dozen days this year — her third year living with myalgic encephalomyelitis/chronic fatigue syndrome."

Sapped of strength and stricken with pain and confusion those with chronic fatigue syndrome seek help with an elusive illness

Daily Hampshire Gazette By: Lisa Spear. (19 Dec 2016)

"Erica Verrillo of Whately rarely leaves her house. She is exhausted much of the time and spends many days in her bathrobe, not venturing far from her bed. At her worst moments, a toothbrush or hair comb might feel as heavy to lift as an anvil."

Coroner questions bed-blocking at Maelor Hospital after woman accidentally killed herself in A&E

Daily Post By: Ann Tyler. (12 Jan 2017)

"Mrs Smith was giving evidence at an inquest into the death of mother-of-four Sarah Ann Tyler, who accidentally killed herself in the hospital’s emergency department where she had been on a trolley for about eight hours, having been admitted after taking an overdose of paracetamol.

Miss Tyler, of Ffordd y Gaer, Bradley, was found unconscious with a ligature made of an ECG cable around her neck in the early hours of February 9, 2015.

The hearing was told that she had been suffering from depression and severe ME (myalgic encephalomyelitis) which had left her bed-bound."

People say ‘Oh, I think I had that last week’ – Lisa battles illness and stigma

Ipswich Star By: Tom Potter. (9 Feb 2017)

"'I’ve heard it all,' says the 53-year-old former funeral arranger, who has been out of work for six years.

'Because there is no disability to see – unless someone is using walking sticks – it tends to not be taken seriously.'"

Severe ME
‘Chronic Fatigue Syndrome Isn’t What You Think It Is — It’s Much Worse’

The Huffington Post By: Stephanie Land. (28 Mar 2016)

"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."

'''Anna spends 22 hours a day in bed. But experts hope they're close to a cure.'''

The Sydney Morning Herald By: Melissa Cunningham (14 Aug 2019)

"Physical exertion is my kryptonite," she said. "I know now that the more I exert, the sicker and sicker I get."

Kara Jane Spencer: Severely ill singer seeks help finishing album.

BBC News, Derby By: Gavin Bevis (16 May 2020)

"A singer seriously ill with a severe form of ME has asked musicians and studio technicians to help finish her debut album.

Kara Jane Spencer, 29, from Shirebrook in Derbyshire, was diagnosed with the condition 13 years ago after suddenly losing the ability to walk.

She now has severely restricted movement and requires full-time nursing care.

Despite this, writing and singing songs has remained her passion."

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

Geelong Advertiser By: Bethany Tyler. (01 Jun 2016)

Soft paywall.

"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."

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

Liverpool Echo News By: Dawn Collinson. (29 Feb 2016)

"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."

Research
'''UK to launch world's largest genetic study into chronic fatigue syndrome. Research aims to shine a light on condition that is believed to affect 250,000 people in UK'''

The Guardian By: Haroon Siddique. (23-Jun-2020)

Chronic fatigue syndrome: ‘It felt like I’d been in a car crash

The Times By: Sean O'Neil. (23-Jun-2020)

'''Anna spends 22 hours a day in bed. But experts hope they're close to a cure.'''

'''Anna spends 22 hours a day in bed. But experts hope they're close to a cure.'''

The Sydney Morning Herald By: Melissa Cunningham (14 Aug 2019)

"There has just been so little research into this condition in the past and almost no money put into biomedical research," Professor Fisher said.

"For first time in the world we have the opportunity to start to examine the cause and effect to try to understand the biomedical basis."

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

The Washington Post: Health & Science By: Miriam E. Tucker. (05 Oct 2015)

"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. (Spring 2016)

"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."

Time to swot up on chronic fatigue

New Statesman By: Michael Brooks. (12 Nov 2015)

"Future general practitioners need to be made aware that “psychosomatic” should not be the default suspicion."

Chronic Fatigue Syndrome: Diagnostic Tests, Treatment, and Prevention Urgently Needed

The Huffington Post - Blog By: Clarissa K. Wittenberg. (15 Feb 2017)

"This blog was inspired by the good news that the National Institutes of Health (NIH) has doubled its research budget for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). However, it was shocking to see that the increase was from $7.6 million last year to $15 million this year. This is a very small research budget given that hundreds of thousands, even as high as 2.5 million men, women, and children suffer from this syndrome. Several studies use different criteria for diagnosis making for a wide variance in prevalence. The economic cost of ME/CFS is estimated at $17 to $24 billion annually [1]. NIH is the nation’s premiere biomedical research agency and as such, whatever budget is allotted, its influence adds credibility to the importance of studying ME/CFS."

Lack of specialized medical care and suicidality
Chronic fatigue syndrome sufferer considered euthanasia after lack of NHS help

DAILY RECORD By: Marcello Mega. (28-Dec-2019)

"Given the number of people whose lives are ruined by this condition, you’d think there would be greater urgency to provide support and that the NHS would fund research and effective treatment."

“I just want the right to be able to access safe housing, medical support and security without having to live under a stress cloud all my life.” "Sufferers have been offered a ray of hope by Scotland’s chief medical officer, Dr Catherine Calderwood."

"At a recent meeting of the public petitions committee at Holyrood, she pledged to ask experts to analyse trials."

'“Earlier this month, the Scottish Government published a five-year action plan to support people with a neurological condition backed by £4.5million of funding.“'

Social services and healthcare abuses
Chronic fatigue syndrome: ME families accused of child abuse

Blamed for wasting doctors' time, branded attention-seekers and told their ailment doesn't even exist: Three ME patients reveal the accusations they "have endured during their battle with the crippling condition

Mail Online By: Stephen Matthews Health Editor For Mailonline and Sam Blanchard. "Ms Chittick claims to have heard cruel nurses mutter the phrase 'attention-seeker' under their breath when they walked past her laying helplessly in bed.

And before she discharged with no answers to her ailment, medics allegedly refused to help her sit up in bed, give her water or even let her shower.

'Despite my condition deteriorating drastically, I was repeatedly told that I'd be better after a good sleep and be back at work within a fortnight,' Ms Chittick said."

"The 50-year-old said: ‘There is now more than enough biomedical evidence out there proving ME is not hysteria or deconditioning.

‘To argue otherwise is similar to climate change deniers.

‘It is time for egos to be put aside, for the science to be listened to, for patients to be listened to and the Hippocratic Oath to be remembered – do no harm.’"

ME parents’ fury at child abuse claims

The Express By: Caroline Wheeler

"HUNDREDS of parents whose children suffer from a crippling illness that leaves them permanently exhausted have been falsely accused of child abuse."

Longer article available on AYME website

"They took Karina and made her sick"

Lokalavisen By: Peter Friis Autzen (Google Translated)

"'They came with eight officers,' said Ketty Hansen and remembers back and 12 February 2013.

It was the day when she and Per Hansen saw their daughter for the last time in several years. She was forcibly removed. Carried out the front door, while her parents were detained in the backyard and could not say goodbye."

ME sufferer Eirik (30) denied the help of paramedics: - I was ridiculed and forced to crawl on the ground

TV2 By: Trine Hvamb (Google Translated)

"Harassed, discriminated against and discredited. How Eirik Aksnes (30) experienced Norwegian health care when he was diagnosed with ME.

- I felt ridiculed and not believed in, he says."

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. (07 Dec 2015)

"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."

Chronic Fatigue Syndrome Is Not All In Your Head

Elle UK By: Rebecca Newman. (03 Nov 2016)

"One morning when I was 15, I ran out of energy as I walked to a lesson at school.

I sank down to rest my face on a frosty path, and couldn't get back up. I had been ill with glandular fever the previous summer and returned to school a week late but life was busy: it was the summer of 1995, I was an A-grade student, taking extra subjects and fencing at a national level."

I Sometimes Feel Defeated by My Chronic Illness

The Huffington Post By: Pippa Stacey. (01 Oct 2019)

"Do people really think that the idea of exercising or getting more active simply hasn't occurred to disabled people?"

"We unfortunately live in a society that continually splits the disabled community into two camps: the inspirational superheroes, 'overcoming' their 'limitations' to climb mountains and win Paralympic medals, and The Rest: the ones seen as benefits scroungers, as the ones 'who don’t help themselves', the ones who are a drain on society."

ME sufferers demand end to exercise treatment

The Sunday Times By: Mark Macaskill. (10 May 2020)

Paywalled.

Scottish ministers are being urged to withdraw a controversial treatment that is prescribed on the NHS to treat myalgic encephalomyelitis (ME) but is blamed for leaving many victims housebound or crippled.

More than 21,000 Scots suffer from ME, also known as chronic fatigue syndrome, and coronavirus is expected to trigger more cases.

There are concerns that GPs will prescribe graded exercise therapy (GET), a treatment offered on the NHS that asks patients to continually increase their levels of activity and “push through” symptoms. Campaigners claim many patients have been harmed by the therapy, and they are pressing for it to be dropped in the UK.

Illness and disbelief
Marcel Robert's view is a darkened room in a rest home: Life with chronic illness ME

NEW ZEALAND HERALD By: Natalie Akoorie. (02-Nov-2019)

"It didn't work. In fact Robert grew sicker." "Marcel Robert now lives in a quiet, darkened room in a rest home." '"Following medical advice I paid for meals to be delivered and home help as Southern Health refused to believe he had a physical illness, saying they didn't recognise ME," Ron says.' As his son grew sicker, he watched on helpless, and says apart from Rosamund Vallings, other doctors did not believe he had a physical illness. There's another code within DNA which responds to environment and things that are happening to you and can change in diseases, called the epigenetic code... We've looked at 30 million sites across their whole genome, to look for changes in these little chemical tags, and they change the function of the DNA in terms of whether information gets out or not."

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

The Telegraph By: Graham Norton. (30 Jan 2016)

"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 Salter. (18 Feb 2016)

"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."

Tipp teacher taking action against Zurich Life Assurance claims she was followed by investigators

BreakingNews.ie. (14 Sep 2016)

"A retired secondary school teacher claims she was followed by private investigators after taking legal action against Zurich Life Assurance.

Bridget Majella Daly from The Chase, Clonmel in Co. Tipperary is suing them for withdrawing payments under a salary protection scheme.

In 1999, Bridget Majella Daly was diagnosed with Chronic Fatigue Syndrome and was forced to stop teaching a few years later."

As eviction nears, LO mother and son wait for a miracle

KOIN 6 (Reprint from Portland Tribune) (28 Dec 2016)

"If the past decade has taught Cynthia Johnson anything, it’s that poor health and financial hardships can hit anyone at any time. But the Lake Oswego resident never imagined that the struggles would leave her and her son without a home this winter."

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

O, The Oprah Magazine By: Cheryl Platzman Weinstock. (12 Nov 2015)

"Chronic Fatigue Syndrome finally gets its due."

Hemispherx BioPharma CEO Explains Chronic Fatigue Syndrome And How The Company Is Treating It

Benzinga By: Javier Hasse. (30 December 2016)

"Hemispherx BioPharma, Inc (HEB 0.72%) is a nano-cap biopharmaceutical research and development company that focuses on the treatment of seriously debilitating disorders. Benzinga recently had the chance to speak with CEO Tom Equels, who explained what chronic fatigue syndrome is and how one of the company’s drugs is used to treat it."

Advocacy and awareness
Cool customer Tom hopes to race into record books

Sussex Express By: Susan King. (16 Sep 2016)

A superfit Crowborough teenager is running from Lands End to John O'Groats to say thank you to an inspirational teacher.

Carol Head Receives Prestigious Honor from Oprah Magazine, Is Named 2017 Health Hero

O, The Oprah Magazine By: C. P. (Jan 2017)

Print Only [LINK Reprint available via Solve ME/CFS] "Chronic fatigue syndrome (CFS) is the Rodney Dangerfi eld of diseases: It gets next to no respect. “We’re all fatigued” is the response Carol Head sometimes hears when she tells people she’s fundraising on behalf of CFS. “They don’t realize it’s a debilitating condition affecting up to two and a half million Americans,” she says."

Millions Missing
Chronic Fatigue Patients Fight for Research, Funding, and Recognition

Boston Magazine By: Jamie Ducharme. (27 Sep 2016)

"On Tuesday, in 25 cities around the world, myalgic encephalomyelitis (ME) patients and allies will raise the voices they feel they’ve been denied for decades.

Under the name Millions Missing, the ME community is protesting the neglect it says it’s felt from the government and the medical field—a neglect spokespeople say has left millions of people undiagnosed, untreated, and unnoticed."

Life-draining disease needs research

Green Bay Press-Gazette  By: Bonnie Vastag. (23 Sep 2016)

"Myalgic encephalomyelitis (ME) — It’s the difficult to spell, hard to pronounce illness that afflicts our son, Brian Vastag, and millions of sufferers in the U.S. and around the world. On Sept. 27, the second Millions Missing protest is scheduled for Washington, D.C., and worldwide. I have mailed a pair of shoes to D.C. representing Brian — missing from the job he loves, missing from socializing with his friends, missing health care professionals who understand his disease. They’ll be displayed with thousands of other pairs as advocates work for adequate research dollars to help solve this scourge."

Rows of empty shoes outside the Radcliffe Camera, Oxford will represent Chronic Fatigue Syndrome sufferers at Millions Missing

The Oxford Times and Oxford Mail By: Pete Hughes. (27 Sep 2016)

"MORE than a hundred pairs of shoes will be lined up outside the Radcliffe Camera in Oxford tomorrow to represent sufferers unable to attend a demonstration to raise awareness for one of the most debilitating and least understood conditions of our time."

Commentary: A day of action for a hidden epidemic

Courier-Post By: Rivka Solomon. (26 Sep 2016)

"A hidden epidemic has swept the globe — and your neighborhood is not immune. In its wake are millions of lives ruined. Its silent victims are all ages and backgrounds, in every state across America: Up to 99,000 in Illinois, 152,000 in New York and 211,000 in Texas. There is no prevention, no treatment and no cure for this barely acknowledged disease that gets barely any government funding."

Dozens Rally To Bring Attention To Incurable Disease

CBS Chicago By: Lisa Fielding. (27 September 2016)

"It’s called Myalgic Encephalomyelitis or Chronic Fatigue Syndrome and it affects 17 million people worldwide.

“This particular illness is more functionally debilitating than chronic congestive heart disease and cancer. The quality of life is significantly less. There’s over a million people in this country with this illness, 25% are homebound or bedbound,” said Leonard Jason, DePaul University, who’s been studying the disease for 25 years."

Silent shoe protest at lack of funding for ME

ITV News. (27 Sep 2016)

"More than a hundred pairs of shoes have been laid out on College Green in Bristol in a silent protest at the lack of funding for research into ME, also known as Chronic Fatigue Syndrome.

The empty shoes represent people who couldn't be at the protest because of the condition."

Shoes for a syndrome

Sandton Chronicle By: Pascale Michael. (?)

"On 27 September, residents are encouraged to put out a pair of shoes to remember the sufferers of myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS)."

100 pairs of shoes used to make poignant protest on ME research in Bristol city centre

Bristol Post By: David Clensy. (27 Sep 2016)

"A hundred pairs of shoes were laid out on College Green in a poignant silent protest against the lack of funding for research into the causes of ME, also known as Chronic Fatigue Syndrome (CFS).

Each pair of shoes represented a sufferer of ME who was unable to attend the rally in Bristol city centre, but was too exhausted as a result of their condition to attend in person."

Demonstrators at Stormont urge more research into chronic disease ME

The Irish News By: Claire Simpson. (28 September 2016)

"A major demonstration urging more research into M.E. was held at Stormont on Tuesday as part of a global day of action.

Protests took part in 25 cities across the world, including Belfast, Melbourne, London and New York."

Protesters Demand Increased Funding or ME/CFS Research

U.S. News & World Report By: Fallon Schlossman and Rishika Dugyala. (28 Sep 2016)

"Protesters placed dozens of pairs shoes in front of the Department of Health and Human Services Tuesday, symbolizing people so affected by Myalgic Encephalomyelitis, or Chronic Fatigue Syndrome, that they're unable to fully live their lives."

MillionsMissing: A Hidden Epidemic and a Day of Action

The Huffington Post By: Rivka Solomon. (28 Sep 2016)

"A hidden epidemic has swept the globe — and your neighborhood is not immune. In its wake are millions of lives ruined. Its silent victims are all ages, from all backgrounds and in every state across America: Up to 99,000 in Illinois, 152,000 in New York and 211,000 in Texas. There is no prevention, no treatment and no cure for this barely acknowledged disease that gets barely any government funding."

More than a million Americans are suffering from a debilitating disease that makes simple tasks impossible — and they're sick and tired of being ignored

Business Insider By: Rafi Letzter. (29 Sep 2016)

"Imagine living with a disease that renders you disabled and exhausted, unable to meet the physical demands of daily living. Now imagine that much of the medical establishment refused to believe your disease was "real" in the sense of a physical illness, and failed to fund research into its true causes and treatment."

Millions Are Missing: Will The World Finally Notice?

The Huffington Post By: Maureen Hanson. (30 Sep 2016)

"This week, demonstrations occurred in 25 global cities world-wide to focus attention on a neglected, devastating disease — Myalgic Encephalomyelitis (ME), an illness that also goes by the misleading name Chronic Fatigue Syndrome (CFS). At this event, the most powerful demonstrators were those who could not attend — the bedridden and housebound patients."

Brock's Banter: Beyond “Sick and Tired”

The Auroran By: Brock Weir. (02 Nov 2016)

"The predicament in question was finding the wherewithal to get through a peaceful demonstration in Toronto to help facilitate a solution. But, when you’re mad as hell and you’re not going to take things lying down, how are you going to make a difference if the thing you feel like most in the world is lying down?"

Unrest film
‘Unrest’ documents lives of ME patients

Park Record By: Frances Moody. (17 Jan 2017)

"Trying to ignore bouts of excruciating muscle pain, Jennifer Brea forced herself to walk home after a doctor diagnosed her with myalgic encephalomyelitis, commonly called chronic fatigue syndrome."

Sundance 2017: ‘Unrest’ Is An Emotional Look At Human Strength

Bleeding Cool By: Kaitlyn Booth. (23 Jan 2017)

"Unrest takes a very frank look at the often misunderstood illness known as ‘chronic fatigue syndrome’ that is both informative and hard to watch."

'Unrest': Film Review | Sundance 2017

'The Hollywood Reporter By: John DeFore. (23 Jan 2017)

"Late in Jennifer Brea's Unrest, a doctor informs us that Multiple Sclerosis, the devastating nervous system disorder, was viewed by doctors as a "hysterical" illness — one essentially invented in the sufferer's own mind — right up until the CAT scan was introduced, allowing previously dismissive doctors to see what was going on inside their patients' bodies. Unrest finds a similar difficulty facing people with Chronic Fatigue Syndrome, a debilitating but controversial disorder that is barely understood and in some quarters denied entirely. Using her own experience with the syndrome as a springboard, Brea offers an affecting film that, when made available on video, will be embraced by the millions suffering CFS worldwide."

Sundance Film Review: ‘Unrest’

Variety By: Dennis Harvey. (23 Jan 2017)

"A largely mysterious condition that reportedly afflicts as many as 17 million people worldwide, Chronic Fatigue Syndrome still flummoxes most physicians, and remains frequently dismissed as a psychosomatic “illness” — including by some nations. Still, it’s hard to buy the “all in your head” diagnosis when seeing the long-term, sometimes entirely bedridden victims of CFS in “Unrest.” Director Jennifer Brea is one of them herself, and this first-feature documentary chronicles her own struggles while taking in the perspectives of other patients and experts around the globe. Though the “Patient, film thyself” concept is starting to risk overexposure — Sundance alone premieres two such features this year, the other being ALS-themed “It’s Not Dark Yet” — “Unrest” is a high-grade example of the form that’s consistently involving, with content diverse enough to avoid the tunnel-visioned pitfalls of diarist cinema."

Jennifer Brea Filmed Her Sundance Premiere Without Leaving Bed — And it Saved Her Life

No Film School By: Emily Buder. (23 Jan 2017)

"One day, Jennifer Brea woke up to find that her life had been stolen from her. The newly engaged Harvard PhD student couldn't write her own name. She couldn't get out of bed; when she tried, she would collapse on the ground in pain and utter exhaustion. She could barely talk. She couldn't even draw a circle."

How Great Human Beings Find Their Purpose

LinkedIn - What Inspires Me By: Bruce Kasanoff. (Jan 22 2017)

"It's probably a mistake to think you were "born to be" an entrepreneur, cure cancer, or become an actor. Your purpose is not just a function of your inherent talents, but rather the product of how those talents interact with what life throws in your path."

Entrepreneur Needed To Cure Anti-Initiative Disease

Forbes - Leadersip By: Bruce Kasanoff. (Jan 26 2017)

"Perhaps 20 million people worldwide have had their lives curtailed by what I'm calling the Anti-Initiative disease. (In a moment, I'll tell you its more traditional names.)

This disease is horrific in that it literally punishes its victims when they display initiative. For example, if a patient who can't get out of bed for weeks then has a good day and decides to go sit in her backyard, she may then be dramatically worse for months."

‘Unrest’ Review: A Personal Look at Chronic Fatigue Syndrome, With Powerful Results — Sundance 2017

Indie Wire By: Erik Kohn. (27 Jan 2017)

"Chronic Fatigue Syndrome — otherwise known as Myalgic Encephalomyelitis — receives little exposure in the media and often goes misdiagnosed, even as it afflicts tens of thousands of people worldwide. Jennifer Brea’s stirring documentary “Unrest” goes a long way toward explaining the nature of the disease and the devastating impact it can have on family life, deriving much of its power from her own encounter with it."

Sundance review: ‘Unrest’

The Salt Lake Tribune By: Sean P. Means. (26 Jan 2017)

"Filmmaker Jennifer Brea gets deeply personal in her documentary "Unrest," as she chronicles her debilitating illness and meets other sufferers around the world — all without leaving her bed."

10 Kick-Ass Women Filmmakers to Know from Sundance 2017

Paper By: Shelly Farmer. (25 Jan 2017)

"Princeton alum Jennifer Brea was pursuing a PhD in political science at Harvard when she was suddenly struck with a mysterious, debilitating illness. Left bedridden and only able to shoot two days a month, Brea – a Sundance Institute Fellow – turned the camera on herself in Unrest, chronicling her struggles with the little-understood myalgic encephalomyelitis (better known as Chronic Fatigue Syndrome) and her connection with four other families grappling with similar health issues."

Sundance: Medical Mystery Doc 'Unrest' Nabbed by PBS (Exclusive)

The Hollywood Reporter By: Tatiana Siegel. (31 Jan 2017)

"The medical mystery doc Unrest has been solved by PBS. The network has acquired U.S. broadcast rights for its Emmy Award-winning series Independent Lens."

Sind Vorurteile gegen kranke Menschen geschlechtsspezifisch?

German Language

The Huffington Post - Germany By: Melanie Schickendanz. (2 Jan 2017)

"Im Oktober 2013 startete Jennifer Brea eine Kampagne über Kickstarter, bei der es darum ging, Geld für eine Dokumentation namens Unrest (damals Canary in a Coal Mine) über die Krankheit ME (Myalgische Enzephalomyelitis, auch bekannt als chronisches Erschöpfungssyndrom bzw. CFS) zu sammeln. Nach drei Tagen waren schon 50.000 US-Dollar zusammengekommen. Am Ende hatten über 2.500 Unterstützer eine Summe von 212.692 US-Dollar gespendet."

If you have to shoot your own illness to show that you are not crazy?

Information By: Meete-Kine Thorup (16 Mar 2017)

Google Translated

"A woman moans tormented in a gritty dark. She is lying on a wooden floor and trying to rise by supporting arms against the ground, but fail back. She pushes instead toward the bed under the great effort and with a camera turned against itself in one hand."

New film about chronically tired: their cells are sick - doctors and friends say they just need to get their act together

Politiken By: Lars Igum Rasmussen (17 Mar 2017)

Google Translated

"The American graduate student at Harvard University Jennifer Brea could everything."

Immune system and infections
Gut Bacteria Are Different in People With Chronic Fatigue Syndrome

The New York Times: Well By: Nicholas Bakalar. (07 Jul 2016)

"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."

Chronic fatigue and the microbiome

The Point Reyes Light By: Sadja Greenwood, M.D. (1 Dec 2016)

"There is tremendous interest in the relationship between the microbes in and on our bodies and our state of health and disease. The origins of chronic fatigue syndrome have remained mysterious, though studied, for years, but it is now believed to be related in some ways to the bacteria in our gut."

Chronic fatigue syndrome a kick in the guts

The University of Melbourne - Pursuit By: Florienne Loder. (9 Jan 2017)

"This is what people with chronic fatigue syndrome (CFS), or myalgic encephalomyelitis (ME), experience. As the name implies, ME/CFS is a chronic, often severely disabling disease that comes with a myriad of symptoms rooted from the autonomic nervous system, immune system, endocrine system and gut. A good night’s sleep is not going to fix this severely debilitating disorder and treatments are hard to come by."

How Gut Bacteria Is Helping To Unpack Chronic Fatigue Syndrome

The Huffington Post - Australia By: Emma Brancatisano. (3 Feb 2017)

"It is a debilitating condition that you may have heard of once or twice. And, contrary to popular conception, it goes beyond fatigue.

Chronic Fatigue Syndrome (also known as Myalgic Encephalomyetlitis) is a flu-like medical condition characterised not only by long-term fatigue but a whole host of other symptoms that limit a person's ability to carry out daily life."

Queensland scientists make chronic fatigue breakthrough

Special Broadcasting Service (21 Feb 2017)

"Chronic fatigue syndrome sufferers have been given new hope after Queensland researchers found strong evidence it is caused by a dysfunctional immune system."

Queensland Scientists Make Chronic Fatigue Syndrome Research Breakthrough

The Huffington Post - Australia By: Luke Cooper. (21 Feb 2017)

"Queensland scientists have linked Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), to a dysfunctional immune system -- proving for the first time that the condition does stem from the body rather than the mind."

Chronic fatigue syndrome linked to immune system deficiency in breakthrough

Herald Sun By: Janelle Miles. (20 Feb 2017)

"QUEENSLAND scientists have linked chronic fatigue syndrome to a dysfunctional immune system, providing more evidence the disorder is physiological rather than psychological."

One of the Biggest Myths About Chronic Fatigue Syndrome Just Got Debunked

Science Alert By: Fiona MacDonald. (22 Feb 2017)

"Chronic fatigue syndrome (CFS) or Myalgic Encephalomyelitis (ME) is one of the most perplexing conditions out there. It affects up to 1 million Americans and 2.6 percent of the global population, often triggering exhaustion so severe that patients can't work or study."

Chronisches Erschöpfungssyndrom: schwierige Forschungsumstände, komplett neue Technologien und neue Erkenntnisse German (Chronic fatigue syndrome: difficult research conditions, completely new technologies and new findings)

The Huffington Post Germany By: Melanie Schickedanz (3 Jan 2017)

"Der Forscher Prof. Ron Davis (u.a. Genetiker und Direktor der Open Medicine Foundation) hat ein neues Video veröffentlicht, in dem er über seine neuesten Entdeckungen bezüglich der Erkrankung Myalgische Enzephalomyelitis (wird oft mit dem verharmlosenden Namen CFS bzw. chronisches Erschöpfungssyndrom betitelt) spricht. Er und sein Forscherteam des Stanford Genome Technology Centers konnten signifikante Durchbrüche bezüglich des Verstehens der molekularen Mechanismen der Erkrankung erzielen, sodass es nun möglich ist, nach einer Behandlungsmöglichkeit zu forschen. Zudem berichtet er über neu entwickelte Technologien, die nötig sind, da sich die Forschung mit schwer an ME erkrankten Menschen als sehr schwierig gestaltet."

'''Yet more research shows chronic fatigue syndrome is real. When will health services catch up?'''

The Guardian By: Naomi Chainey (21 Mar 2017)

"When the New York Times publishes a piece on the glaring flaws in a large study conducted on the effectiveness of recommended treatments for chronically ill people, saying claims of recovery are “overstated” and “not justified by the data”, I can’t imagine that’s a good thing. However, as someone who has been ill with chronic fatigue syndrome (also called myalgic encephalomyelitis or ME/CFS) for over a decade, the article represents hope."

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

The New York Times: Well By: David Tuller. (24 Nov 2014)

"Many patients are still told to seek psychiatric help. But two recent studies — one from investigators at Stanford a few weeks ago and another from a Japanese research team published earlier this year — have found that the brains of people with chronic fatigue syndrome differ from those of healthy people, strengthening the argument that serious physiological dysfunctions are at the root of the condition."

Unraveling the mystery of chronic fatigue syndrome

Palo Alto Online By: Sue Dremann. (10 Jul 2015)

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

Diagnostic tests, biomarkers and blood
Chronic fatigue syndrome: new diagnostic tool to speed up treatment and reduce stigma

ABC Gold Coast By: Damien Larkins. (10 Mar 2016)

"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."

Gold Coast team getting closer to discovering test for chronic fatigue syndrome

Gold Coast Bulletin. (30 Nov 2016)

"A team of Gold Coast scientists is behind world-first research that will enable doctors to diagnose chronic fatigue syndrome in a matter of days rather than years."

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

Daily Mail By: Fiona Macrae. (29 Aug 2016)

"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. (30 Aug 2016)

"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. (30 Aug 2016)

Paywalled. Reprint available via The ME Association

"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. (31 Aug 2016)

"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."

Researchers Identify Characteristic Chemical Signature for Chronic Fatigue Syndrome

NewsWise – UC San Diego: Health Sciences. (25 Aug 2016)

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 – Blood simple?

The Economist. (03 Sep 2016)

"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

Live Science and The Huffington Post By: Rachael Rettner. (30 Aug 2016)

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.

Metabolism, energy and endocrine hormones
How Chronic Fatigue Syndrome Affects Your Metabolism

Pacific Standard By: Nathan Collins. (30 Aug 2016)

"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."

Metabolite abnormalities pinpointed in chronic fatigue syndrome

Chemical & Engineering News By: Stu Borman. (12 Sep 2016)

Paywalled.

"Chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis, is a complex disorder characterized by malaise, sleep problems, and pain. The cause of the condition is unclear and difficult to diagnose and treat."

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

The Washington Post: To Your Health By: Ariana Eunjung Cha. (06 Sep 2016)

"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

The New Zealand Herald By: Ariana Eunjung Cha. (14 Sep 2016)

"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."

Santa Rosa doctor’s study offers new insight into chronic fatigue syndrome

The Press Democrat By: Guy Kovner. (21 Sep 2016)

"Brittany Harrison of Santa Rosa was an A-student, valedictorian of her eighth-grade class and a promising ballerina when the symptoms of chronic fatigue syndrome set in at age 13.

By 17, she was bedridden all day in a dark room, unable to stand or walk and in constant pain from a severe migraine.

Unable to eat anything but soft food and occasionally fruit, she lost weight and stopped going to school. An associated symptom known as “brain fog” prohibited her from reading, doing school work and even having conversations because she couldn’t understand what she was reading or what someone was saying to her."

“I could crawl to the bathroom,” she said.

Drugs and treatments
Exercise and therapy cure for ME is ‘seriously flawed’

The Times By: Tom Whipple. (28 Sep 2016)

Paywalled. Reprint available via The ME Assocation

"A landmark study suggesting that ME could be treated with exercise and psychological intervention is seriously flawed, scientists have claimed.

If correct, it would mean that treatments recommended on the NHS, which have proved hugely controversial among Britain’s 250,000 sufferers of ME, are ineffective."

Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study

What Doctors Don't Tell You By: Bryan Hubbard. (12 Sep 2016)

"Sufferers of chronic fatigue syndrome (CFS) are not getting the proper treatment. The standard approach these days is cognitive behavioural therapy (CBT)—known as the ‘talking therapy’, which implies the problem is mainly in the sufferer’s head—but this is based on a landmark study whose results were falsified, it has been revealed this week.

The PACE study had concluded in 2011 that 61 percent of sufferers were getting well on CBT and exercise—but the numbers who really benefited had been inflated three-fold by researchers."

ME sufferers demand end to exercise treatment

The Sunday Times By: Mark Macaskill. (10 May 2020)

Paywalled.

Scottish ministers are being urged to withdraw a controversial treatment that is prescribed on the NHS to treat myalgic encephalomyelitis (ME) but is blamed for leaving many victims housebound or crippled.

More than 21,000 Scots suffer from ME, also known as chronic fatigue syndrome, and coronavirus is expected to trigger more cases.

There are concerns that GPs will prescribe graded exercise therapy (GET), a treatment offered on the NHS that asks patients to continually increase their levels of activity and “push through” symptoms. Campaigners claim many patients have been harmed by the therapy, and they are pressing for it to be dropped in the UK.

Immune-Modulating Agents Eyed for 'Chronic Fatigue Syndrome'

Medscape By: Miriam E. Tucker. (11 Nov 2016)

"The illness known as "chronic fatigue syndrome" isn't typically considered within the purview of oncology, but a chance finding in 2004 led two Norwegian oncologists on a career-consuming mission to shed light on the controversial condition."

PACE trial
Patients, Scientists Fight Over Research-Data Access

The Wall Street Journal By: Amy Dockser Marcus. (07 Mar 2016)

Paywalled. Reprint available via The ME Association

"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

The Huffington Post UK By: Dr. Simon Duffy. (20 Apr 2016)

"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."

Doctor's Diary: Gove was right, we have had enough of experts

The Telegraph By: James LeFanu. (17 Oct 2016)

"Michael Gove’s remark amid the referendum campaign that “people have had enough of experts” resonated widely – reflecting a well-founded suspicion that informed opinion, buttressed by jargon and statistics, can be much less trustworthy than it appears. This has become an endemic problem in medicine, and the recent unmasking of a widely endorsed treatment for Myalgic Encephalomyalitis – better known as ME, or chronic fatigue syndrome (CFS) – is highly instructive."

PACE Trial data release
Chronic fatigue sufferers getting the wrong treatment—thanks to a falsified study

What Doctors Don't Tell You By: Bryan Hubbard. (12 Sep 2016)

"Sufferers of chronic fatigue syndrome (CFS) are not getting the proper treatment. The standard approach these days is cognitive behavioural therapy (CBT)—known as the ‘talking therapy’, which implies the problem is mainly in the sufferer’s head—but this is based on a landmark study whose results were falsified, it has been revealed this week.

The PACE study had concluded in 2011 that 61 percent of sufferers were getting well on CBT and exercise—but the numbers who really benefited had been inflated three-fold by researchers."

The Implosion of a Breakthrough Study on Chronic Fatigue Syndrome

New York Magazine: Science of Us By: Cari Romm. (21 Sep 2016)

"And now, definitive proof has emerged that the latter camp was correct. In a column published in Stat today, writer Julie Rehmeyer — herself a CFS patient — explained how a supposed breakthrough blew up so spectacularly."

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

SBS By: Naomi Chainey. (30 Aug 2016)

"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."

The results they really didn’t want you to see: key ME/CFS trial data released

The Canary By: Conrad Bower. (02 Oct 2016)

"Researchers at Queen Mary University of London (QMUL), have been ordered to release a full data from a controversial ME/CFS (myalgic encaphalomyelitis/ chronic fatigue syndrome) study known as the PACE trial. A preliminary analysis of the data reveals a shocking difference to the original published results, if the trials original data analysis method had been followed. The new analysis suggests that the therapies tested in the DWP funded trial are not nearly as effective as the published results claimed them to be."

PACE Trial Data Released

The Print (Newspaper of Queen Mary Students' Union) By: Anna Savage and Poppy Thompson. (14 Nov 2016)

"PACE was a five year trial conducted by researchers from Queen Mary University of London and King’s College London to investigate the effectiveness of treatments for ME and Chronic Fatigue Syndrome (CFS)."

How Alem Matthees’ letter helped solve Chronic Fatigue Syndrome mystery

news.com.au By: Jason Murphy (8 January 2017)

"ON A hot dry Perth day in March 2014, Alem Matthees finished writing a letter.

It was a very polite letter, from a very polite young man. Alem wanted an answer to a simple question."

Research funding
UK to launch genetic study of Chronic Fatigue Syndrome Jun 2020,

The Guardian: Society By: Haroon Siddique. (23 Jun 2020)

"Research aims to shine a light on condition that is believed to affect 250,000 people in UK

The world’s largest genetic study into chronic fatigue syndrome is to be launched in the UK after receiving £3.2m of funding from the Medical Research Council and National Institute for Health Research.

The research aims to shine a light on the debilitating long-term condition, about which little is known, by collecting DNA samples from 20,000 people who have CFS, also known as myalgic encephalomyelitis (ME)."

NIH announces new effort to tackle chronic fatigue syndrome

The Washington Post: To Your Health By: Lenny Bernstein. (29 Oct 2015)

"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."

ME/CFS, long COVID, and COVID-19
Have We Been Thinking About Long-Haul Coronavirus All Wrong?

Time By: Jamie Ducharme. (16 October 2020)

"A few years ago, Jaime Seltzer was helping coordinate research projects, grant applications and funding for a Stanford research group studying a condition called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Up to 2.5 million Americans, including Seltzer, have ME/CFS, and yet it felt like almost no one paid attention to her group’s research. “What is it going to take for researchers to take ME seriously?” she and her colleagues often wondered aloud.

The morbid answer, they hypothesized, was a pandemic. Since ME/CFS often follows viral infections, they feared it would take something as destructive as mass illness for the larger scientific community to take notice.

Unfortunately, this year they were proven right."

Coronavirus may cause fatigue syndrome, Fauci says

CNN By: Maggie Fox. (9 July 2020)

There is evidence that some people develop a long-term fatigue syndrome from coronavirus infections, Dr. Anthony Fauci said Thursday.

“There may well be a post-viral syndrome associated with Covid-19,” Fauci told a news conference organized by the International AIDS Society. The group is holding a Covid-19 conference as an add-on to its every-other-year AIDS meeting.

Fauci said the symptoms resemble those seen in patients with myalgic encephalomyelitis, or ME, once known as chronic fatigue syndrome.

Coronavirus and heart inflammation in athletes: What we know about myocarditis

The Inquirer By: Marie McCullough (13 August 2020)

"A small but growing body of evidence shows that COVID-19 can damage the heart, sometimes fatally, even in a previously healthy young athlete."

CORONAVIRUS: Infectious diseases expert warns of spike in ME cases

The Times: Coronavirus By: Sean O'Neill. (24 Jun 2020)

"The NHS is facing a “post-viral tsunami” with thousands of people struggling to recover from Covid-19 and experiencing symptoms of the debilitating condition ME, a leading medical researcher said yesterday.

Paul Garner, an expert in infectious diseases at the Liverpool School of Tropical Medicine, said he remained exhausted and lacking energy 14 weeks after having had the virus.

Professor Garner said he is “unable to be out of bed for more than three hours at a stretch, my arms and legs are permanently fizzing as if injected with Szechuan peppercorns, I have ringing in the ears, intermittent brain fog, palpitations and dramatic mood swings”."

Could the coronavirus trigger post-viral fatigue syndromes?

New Scientist By: Clare Wilson. (15 April 2020)

Conditions like chronic fatigue syndrome have been linked to viral infections, so it’s possible that the covid-19 virus may go on to trigger similar conditions.

Coronavirus could cause secondary illnesses including chronic fatigue syndrome, experts warn

The Telegraph By: Sarah Newey. (2 May 2020)

Covid-19 may trigger post-viral fatigue syndrome in some patients, experts have warned, amid growing evidence that an infection could have significant long term health repercussions.

While initial reports focused on the impact that the coronavirus has on the respiratory system, a stream of medical papers published over the last few weeks suggest that the contagion can get deep into our vascular system and even our brains.

“Based on my experience with Sars, I am deeply concerned that our definition of ‘recovered’ is far too narrow. It’s likely that some patients will experience chronic fatigue syndromes for months or even years after an initial infection,” Dr Moldofsky told The Telegraph.

Chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME), triggers symptoms including extreme fatigue, unexplained muscle or joint pain, heachaches and unrefreshing sleep.

A study led by Dr Moldofsky following the Sars outbreak in Canada in 2002 to 2003 also found that some patients continued to have symptoms similar to CFS/ME for years after they were diagnosed with the coronavirus, which is closely related to Sars-Cov-2.

The research, published in 2011, concluded that “chronic post-Sars is characterised by persistent fatigue, diffuse myalgia, weakness, depression, and nonrestorative sleep”.

The paper studied 22 post-Sars patients with ongoing health problems that prevented them from returning to work, though these people represent only about eight per cent of the 273 people diagnosed with Sars in Toronto.

But another study published in the Journal of the American Medical Association in 2009 found that 40 per cent of 369 Sars survivors studied in China reported a “chronic fatigue problem”, while 27 per cent met the US Centers for Disease Control and Prevention definition for CFS/ME.

Coronavirus Is Leaving People With Serious Fatigue – What Can You Do About It

Huffington Post By: Natasha Hinde. (11 May 2020)

"While it’s possible some people with the virus will go on to have post-viral fatigue syndrome, it’s too early to be sure of a link. However, studies have suggested this has happened before in past outbreaks.

One study from 2011 looked at 22 people who had ongoing health problems after the SARS outbreak in Toronto, Canada, and couldn’t return to work. The participants tended to have disturbed sleep, daytime fatigue, pain and weakness in the muscles, and depression, which researchers concluded were symptoms of a chronic post SARS infection syndrome.

“These symptoms were very reminiscent of CFS/ME,” one of the lead researchers, Dr Harvey Moldofsky, told New Scientist. Another study of 233 SARS survivors, a year after the outbreak in Hong Kong, found 40% reported some degree of chronic fatigue and 27% met diagnostic criteria for chronic fatigue syndrome.

While we don’t know for sure the causes of CFS/ME, there are a number of theories about what might trigger it – one of which is viral infections."

"What experts do agree on is that people experiencing fatigue after suspected coronavirus need to listen to their bodies – if you push yourself too hard too soon, this may slow your recovery. Key to all this, says Dr Shepherd, is activity management. This doesn’t mean going to bed and staying there, nor does it mean going on a 5k run. It’s about not doing too much or too little, but instead small chunks of physical activity – a five minute walk around the garden, a rest, some mental activity, and a rest. “You certainly can’t exercise your way out of this,” he adds."

Long COVID
The lasting misery of coronavirus long-haulers Months after infection with SARS-CoV-2, some people are still battling crushing fatigue, lung damage and other symptoms of ‘long COVID’.'''

Nature By: Clare Wilson. (17 September 2020)

Conditions like chronic fatigue syndrome have been linked to viral infections, so it’s possible that the covid-19 virus may go on to trigger similar conditions.

Women aged 50-60 at greatest risk of ‘long Covid’, experts suggest

Study links age and number of symptoms to lasting health problems from coronavirus

The Guardian By: Linda Geddes. (21 October 2020) 21 Oct 2020

"Women aged 50-60 are at greatest risk of developing “long Covid”, analysis suggests. Older age and experiencing five or more symptoms within the first week of illness were also associated with a heightened risk of lasting health problems."

"For women in the 50-60 age bracket, these two risk factors appeared to combine: They were eight times more likely to experience lasting symptoms of Covid-19 compared with 18- to 30-year-olds. However, the greatest difference between men and women was seen among those aged between 40 and 50, where women’s risk of developing long Covid was double that of men’s.

“This is a similar pattern to what you see in autoimmune diseases,” said Spector. “Things like rheumatoid arthritis, thyroid disease and lupus are two to three times more common in women until just before menopause, and then it becomes more similar.” His guess is that gender differences in the way the immune system responds to coronavirus may account for this difference."

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

MedPage Today: Neurology By: Shannon Firth. (02 Jan 2016)

"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."

NIH to double funding for chronic fatigue syndrome, but patient distrust remains

Science magazine By: Meredith Wadman. (10 Nov 2016)

"The most anticipated speaker late last month at an international conference devoted to the mysterious malady commonly known as chronic fatigue syndrome (CFS) was not a scientist with a hot new finding—although there was excitement about new research in the air. Rather, it was a National Institutes of Health (NIH) official bearing good news to a community that has long existed on the margins of the biomedical research establishment. Vicky Whittemore, the agency's CFS point person in Bethesda, Maryland, delivered on a promise that NIH Director Francis Collins made last year by announcing that NIH spending for research on the poorly understood disease should rise to roughly $15 million in 2017, doubling the estimated $7.6 million handed out in 2016."

Biological underpinnings of chronic fatigue syndrome begin to emerge

Nature By: Amy Maxmen. (28 Mar 2017)

"Before his 33-year-old son became bedridden with chronic fatigue syndrome, biochemist Ronald Davis created technologies to analyse genes and proteins faster, better and more cheaply. Now he aims his inventions at a different target: the elusive inner workings of his son’s malady."

PACE trial
How a study about Chronic Fatigue Syndrome was doctored, adding to pain and stigma

The Conversation By: Steven Lubet (22 Mar 2017)

"The public relies on scientists to report their findings accurately and completely, but that does not always happen. Too often, researchers announce only their most favorable outcomes, while keeping more disappointing results well out of sight."

PACE trial data release
Virology blog by Vincent Racaniello has covered the PACE trial extensively. David Tuller has written most of these articles. A list of links can be found on Virology Blog here.

The article that has a link to the RAW DATA at Reference 10.

No ‘Recovery’ in PACE Trial, New Analysis Finds

Virology blog By: Vincent Racaniello

"Last October, Virology Blog posted David Tuller’s 14,000-word investigation of the many flaws of the PACE trial (link to article), which had reported that cognitive behavior therapy and graded exercise therapy could lead to “improvement” and “recovery” from ME/CFS. The first results, on “improvement,” were published in The Lancet in 2011; a follow-up study, on “recovery,” was published in the journal Psychological Medicine in 2013.

The investigation by Dr. Tuller, a lecturer in public health and journalism at UC Berkeley, built on the impressive analyses already done by ME/CFS patients; his work helped demolish the credibility of the PACE trial as a piece of scientific research. In February, Virology Blog posted an open letter (link) to The Lancet and its editor, Richard Horton, stating that the trial’s flaws “have no place in published research.” Surprisingly, the PACE authors, The Lancet, and others in the U.K. medical and academic establishment have continued their vigorous defense of the study, despite its glaring methodological and ethical deficiencies."

Bad science has misled millions with chronic fatigue, court order reveals

ScienceAlert By: Bec Crew. (23 Sep 2016)

"Up to 1 million Americans and 2.6 percent of the global population are estimated to have chronic fatigue syndrome, and for decades, the illness has been trivialised due to a lack of scientific evidence supporting its diagnosis.

But for those living with the disorder, the effects can be profound, and now an investigation into the two most commonly prescribed treatments - psychotherapy and exercise (seriously) - has found that they’re being recommended based on some seriously shoddy science."

Independent investigation reveals NICE approved treatment only a fraction as effective as experts claim it is.

HealthInsightUK By: Jerome Burne. (29 Sep 2016)

"Would any doctor continue to prescribe a drug which they had been told would benefit 20 percent of patients with a specific illness, once the truth was revealed to be around 7 percent, only one percent better than no treatment at all? You’d have to hope not and that concerned and angry doctors would then shout loudly that they had been lied to and that patients had endured years of pointless treatment."

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

MedPage Today: Neurology By: Shannon Firth. (02 Jan 2016)

"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."

Chronic Fatigue Syndrome is Not Merely Dysbiosis

Psychiatry Advisor By: Theodore Henderson. (02 Sep 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.

Unfortunately, it takes the medical care of ME/CFS in the wrong direction. The cited article by Giloteaux and colleagues, Reduced diversity and altered composition of the gut microbiome in individuals with myalgic encephalomyelitis/chronic fatigue syndrome,2 seems to ignore the extensive research demonstrating a viral etiology for ME/CFS."

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

MedPage Today: Neurology By: Shannon Firth. (17 Mar 2016)

"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."

Biomarker Research Advances in 'Chronic Fatigue Syndrome'

Medscape By: Miriam E. Tucker. (08 Nov 2016)

"New research adds to growing evidence that the illness commonly known as chronic fatigue syndrome is biologically based, researchers report here at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME) research and clinical conference. Some of the abnormalities identified suggest potential clinical diagnostic tests and targeted treatments."

NIH Program Director Talks Team Work to Tackle ME-CFS

MedPage Today: Neurology By: Shannon Firth. (15 Nov 2016)

"For decades, those in the myalgic encephalomyelitis-chronic fatigue syndrome (ME-CFS) community have faced an uphill battle, getting the government, and the medical community in general, to take their condition seriously."

Metabolic switch may bring on chronic fatigue syndrome

New Scientist By: Andy Coghlan. (13 Feb 2017)

"It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy."

Moving Toward Answers in ME/CFS

NIH Director's Blog By: Dr. Walter Koroshetz and Dr. Francis Collins. (21 Mar 2017)

"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."

Biological evidence of 'atypical' chronic fatigue syndrome discovered by scientists

Science Daily (4 Apr 2017)

"Scientists at the Center for Infection and Immunity (CII) at Columbia University's Mailman School of Public Health are the first to report immune signatures differentiating two subgroups of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS): "classical" and "atypical." This complex, debilitating disease is characterized by symptoms ranging from extreme fatigue after exertion to difficulty concentrating, headaches, and muscle pain."

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

UC San Diego Health and EurekAlert! and Science Daily By: Scott LaFee. (29 August 2016)

"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: The Grapevine By: Suman Varandani. (29 Aug 2016)

"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. (30 Aug 2016)

"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."

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.

ScienceAlert By: Josh Hrala. (31 Aug 2016)

"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 magazine. (30 Aug 2016)

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

Metabolomic Deficiencies Characteristic of Chronic Fatigue Syndrome

Clinical Pain Advisor By: Cindy Lampner. (10 Nov 2016)

"In a study designed to test the utility of targeted metabolomics in the diagnosis of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), researchers identified a unique chemical signature that differentiates affected patients from healthy individuals."

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

MedPage Today: Neurology By: Shannon Firth. (31 May 2016)

"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."'

Post-exertional Malaise
Postexertion 'Crash,' not Fatigue per se, Marks Syndrome

Medscape By: Miriam Tucker. (04 Nov 2016)

"New research focused on the phenomenon of post-exertional malaise (PEM) is shedding light on the etiology of the illness that has been known as chronic fatigue syndrome, but is now increasingly termed myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)."

Advances in understanding ME
Chronic fatigue syndrome: Gradually figuring out what’s wrong

HARVARD HERALD LETTER By: Anthony Komaroff, Editor in Chief. (14-Nov-2019)

Media spin
The Science Media Centre and the PACE Trial – a deceptive partnership Spinning the Results to the Media

Peter Kemp Blog

This blog post has screen shots of a collection of media articles that reported on the PACE trial as spun by the Science Media Centre.

"On Feb 17th 2011, the Science Media Centre (ScMC) hosted a press conference for the publication of the PACE Trial in the Lancet. The ScMC state: “The overall goal of the Centre is to help renew public trust in science by working to promote more balanced, accurate and rational coverage of the controversial science stories that now regularly hit the headlines”, and; “…the Centre will be free of any particular agenda within science and will always strive to promote a broad spectrum of scientific opinion – especially where there are clear divisions within science. It will not shy away from promoting voices that are critical of particular aspects of science.”[i]"

Millions Missing

 * Press coverage and participant videos and photos of Millions Missing protests from around the world collected by #MEAction.


 * Press coverage of Millions Missing from around the world collected by #MEAction.

By: Psychiatric paradigm supporters
If my team’s research on ME is rejected, the patients will suffer

The Guardian By: Peter White. (30 September 2016)

"Chronic fatigue syndrome – sometimes called ME (myalgic encephalomyelitis) – is a sad tale for everyone involved. It is a debilitating illness that affects about 250,000 children and adults in the UK alone, wrecking lives as people are unable to hold down a job and are sometimes left bed-bound for years on end."

Time to end the damaging battle over chronic fatigue syndrome

New Scientist By: Esther Crawley. (04 Nov 2016)

Soft paywall (Free subscription required)

"We know almost nothing about chronic fatigue syndrome (CFS), also known as myalgic encephalomyelitis (ME). And yet it causes misery and suffering for hundreds of thousands of people, including many children.

One in a hundred teenagers in the UK miss a day a week or more of school because of it, and 2 percent are probably missing out on the normal stuff that teenagers do. Those I see in my clinic are sick with disabling fatigue, memory and concentration problems, and terrible pain. On average, they miss a year of school, on top of which mothers give up work and siblings suffer."

FITNET
Children with chronic fatigue get therapy online

The Times By: Tom Whipple. (02 Nov 2016)

Paywalled. Reprint available via The ME Association

"Children suffering from ME will receive online therapy at home in a trial of an intervention previously shown to help two thirds of patients."

Controversial online therapy to be used in childhood chronic fatigue syndrome trial

The Canary By: Conrad Bower. (01 Nov 2016)

"A clinical trial will use an online version of cognitive behavioural therapy (CBT) to treat children with chronic fatigue syndrome (CFS). CBT has proved controversial in the treatment of adult CFS due to its use in the heavily criticised PACE trial. The results of that trial proved highly contentious and are still at the centre of a heated debate."

Young people to get ME treatment in trial after success in Netherlands

The Guardian By: Sarah Boseley. (01 Nov 2016)

"Hundreds of children and young people are to get treatment for chronic fatigue syndrome for the first time, to see whether methods that have proved highly successful in the Netherlands can be adopted by the NHS."

CBT won’t cure my chronic fatigue, any more than it would cancer – it’s a physical illness

iNews By: Scott Jordan Harris. (01 Nov 2016)

"The announcement of a new initiative to offer online Cognitive Behavioural Therapy to teenage suffers of ME, also known as Chronic Fatigue Syndrome, has re-opened debate about whether ME is a mental illness."

Landmark chronic fatigue trial could treat two-thirds

BBC News By: James Gallagher. (01 Nov 2016)

"A therapy that successfully treats two-thirds of children with chronic fatigue syndrome is being trialled for NHS use."

New chronic fatigue syndrome treatment trialled

The Scotsman. (01 Nov 2016)

"A disabling disease which drains energy out of sufferers is to be tackled with a new online treatment trial of more than 700 children and teenagers."

#MEAction Denounces Use of CBT in Treatment for Chronic Fatigue Syndrome

Positive Health Online. (Jan 2017)

"According to reports in The Guardian and BBC yesterday, hundreds of young patients in the UK suffering from myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) are set to receive online psychological therapy. FITNET will cost £1million, to be funded by British taxpayers - yet the Dutch study on which the trial is based found no difference in patients at long-term follow-up."

More news articles

 * ME in the news - selected articles by #MEAction