Anonymous
Not logged in
Talk
Contributions
Create account
Log in
Search
Editing
List of news articles on ME and CFS
(section)
From MEpedia, a crowd-sourced encyclopedia of ME and CFS science and history
Namespaces
Page
Discussion
More
More
Page actions
Read
Edit
Edit source
History
Warning:
You are not logged in. Your IP address will be publicly visible if you make any edits. If you
log in
or
create an account
, your edits will be attributed to your username, along with other benefits.
Anti-spam check. Do
not
fill this in!
== By: Patients and Patient Advocates == [[File:Newspapers.jpg|alt=newspapers |thumb|right|180x180px]] === Funding === '''I'm disabled. Can NIH spare a few dimes?'''<ref>{{citation |last = Vastag|first = Brian | date = July 20, 2015 | title = I’m disabled. Can NIH spare a few dimes?|url= https://www.washingtonpost.com/news/to-your-health/wp/2015/07/20/dear-dr-collins-im-disabled-can-nih-spare-a-few-dimes/|newspaper= The Washington Post|location= |access-date= }}</ref> ''The Washington Post: To Your Health'' By: [[Brian Vastag]]. (Jul 20, 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 [[National Institutes of Health|NIH]." === PACE trial === '''Hope For Chronic Fatigue Syndrome'''<ref>{{citation |last = Rehmeyer | first = Julie | date = November 13, 2015 | title = Hope For Chronic Fatigue Syndrome|url= http://www.slate.com/articles/health_and_science/medical_examiner/2015/11/chronic_fatigue_pace_trial_is_flawed_should_be_reanalyzed.html|newspaper= Slate|location= New York|access-date= }}</ref> ''SLATE: Health and Science'' By: [[Julie Rehmeyer]]. (Nov 13, 2015) "The debate over this mysterious disease is suddenly shifting." '''Worse Than the Disease'''<ref>{{citation |last = Tuller | first = David | date = 27 October 2016 | title = Worse Than the Disease|url= http://undark.org/article/chronic-fatigue-graded-exercise-pace/|newspaper= Undark|location= Cambridge, MA|access-date= }}</ref> ''Undark'' By: [[David Tuller]]. (Oct 27, 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''''<ref>{{citation |last = Goldberg|first = Carey | date = 27 October 2016 | title = New Science Mag: Misguided Therapy For Fatigue Syndrome 'Worse Than The Disease'|url= http://www.wbur.org/commonhealth/2016/10/27/chronic-fatigue-misguided-therapy-undark|newspaper= WBUR|location= Boston|access-date= }}</ref> ''WBUR: Common Health'' By: Carey Goldberg. (Oct 27, 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)'''<ref>{{citation |last = Tuller | first = David | date = 19 December 2016 | title = A Study of Chronic Fatigue Syndrome Therapies Is Debunked (Again)|url= http://undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/|newspaper= Undark|location= Cambridge, MA|access-date= }}</ref> ''Undark'' By: David Tuller. (Dec 19, 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'''<ref>{{Cite news | last1 = Rehmeyer | first1 = Julie | last2 = Tuller | first2 = David | date = March 18, 2017 | title = Getting It Wrong on Chronic Fatigue Syndrome|url= https://www.nytimes.com/2017/03/18/opinion/sunday/getting-it-wrong-on-chronic-fatigue-syndrome.html|newspaper= New York Times |access-date= }}</ref> ''New York Times'' By: Julie Rehmeyer and David Tuller (March 18, 2017) "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'''<ref>{{citation |last = Rehmeyer | first = Julie | date = Sep 21, 2016 | title = Bad science misled millions with chronic fatigue syndrome. Here’s how we fought back | url = https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/|newspaper= STAT|location= Boston|access-date= }}</ref><ref>{{citation |last = Rehmeyer | first = Julie | date = Sep 21, 2016 | title = How millions of patients with a crippling, misunderstood disease were misled by bad science|url= http://uk.businessinsider.com/flawed-lancet-study-me-cfs-chronic-fatigue-2016-9|newspaper= Business Insider|location= New York|access-date= }}</ref> ''STAT: First Opinion'' and ''Business Insider: Science'' By: Julie Rehmeyer. (Sep 21, 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'''<ref>{{citation |last = Wright | first = Nathalie | date = 26 November 2015 | title = Huddersfield woman Nathalie Wright talks about the misery of living with ME|url= http://www.examiner.co.uk/lifestyle/huddersfield-woman-nathalie-wright-talks-10496026|newspaper= The Huddersfield Daily Examiner|location= |access-date= }}</ref> ''The Huddersfield Daily Examiner'' By: [[Nathalie Wright]]. (Nov 26, 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 [[myalgic encephalomyelitis|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'''<ref>{{citation |last = Wright | first = Nathalie | date = 31 October 2015 | title = The harsh reality of living with ME|url= http://www.telegraph.co.uk/wellbeing/health-advice/me-and-me/|newspaper= The Telegraph|location= London|access-date= }}</ref> ''The Telegraph'' By: [[Nathalie Wright]]. (Oct 31, 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." '<nowiki/>'''No one chooses to have ME - everything changed when I became ill''''<ref>{{Cite news | last = Kindlon | first = Tom | date = October 30, 2015 | title = No one chooses to have ME - everything changed when I became ill|url= http://www.independent.ie/life/health-wellbeing/health-features/no-one-chooses-to-have-me-everything-changed-when-i-became-ill-34153140.html|newspaper= Irish Independent|access-date= }}</ref> ''Irish Independent: Life Health Features Section'' By: [[Tom Kindlon]]. (Oct 30, 2015) "As a new study suggests that [[myalgic encephalomyelitis|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'''<ref>{{citation |last = Whittingham|first = Naomi | date = 8 August 2014 | title = What it's like to live with severe ME|url= http://www.telegraph.co.uk/women/womens-health/11018709/What-its-like-to-live-with-severe-ME.html|newspaper= The Telegraph|location= London|access-date= }}</ref> ''The Telegraph'' By: [[Naomi Whittingham]]. (Aug 8, 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'''<ref>{{citation |last = Prior | first = Ryan | date = 10 June 2013 | title = Viewpoint: Telling the hidden story of chronic fatigue syndrome|url= http://college.usatoday.com/2013/06/10/opinion-telling-the-hidden-story-of-chronic-fatigue-syndrome/|newspaper= USA Today|location= McLean, VA|access-date= }}</ref> ''USA Today: College'' By: [[Ryan Prior]]. (Jun 10, 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|Chronic Fatigue Syndrome]] (also called [[myalgic encephalomyelitis|Myalgic Encephalomyelitis]])." '''Viewpoint: The real story of chronic fatigue syndrome'''<ref>{{citation |last = Prior | first = Ryan | date = 2 October 2012 | title = Viewpoint: The real story of chronic fatigue syndrome|url= http://college.usatoday.com/2012/10/02/opinion-the-real-story-of-chronic-fatigue-syndrome/|newspaper= USA Today|location= McLean, VA|access-date= }}</ref> ''USA Today: College'' By: [[Ryan Prior]]. (Oct 2, 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'''<ref>{{citation |last = Prior | first = Ryan | date = October 30, 2012 | title = Viewpoint: Moving forward on chronic fatigue syndrome|url= http://college.usatoday.com/2012/10/30/opinion-moving-forward-on-chronic-fatigue-syndrome/|newspaper= USA Today|location= McLean, VA|access-date= }}</ref> ''USA Today: College'' By: [[Ryan Prior]]. (Oct 30, 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'''<ref>{{citation |last = Kearns | first = Laura | date = 31 December 2015 | title = Favourite place: Reminder never to take health for granted | url = https://leamingtonobserver.co.uk/news/favourite-place-reminder-never-take-health-granted/|newspaper= Leamington Observer|location= |access-date= }}</ref> ''Leamington Observer'' By: Laura Kearns. (Dec 31, 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'''<ref>{{citation |last = Solomon | first = Rivka | date = 27 May 2016 | title = A disease that causes debilitating exhaustion affects more than a million Americans, and no one's addressing it|url= http://www.businessinsider.com/chronic-fatigue-syndrome-or-myalgic-encephalomyelitis-2016-5|newspaper= Business Insider|location= New York|access-date= }}</ref> ''Business Insider: STAT'' By: [[Rivka Solomon]]. (May 27, 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'''<ref>{{citation |last = Radenkova | first = Hannah | date = 5 September 2016 | title = 'My life got taken away from me' - what it's really like to suffer from Chronic Fatigue Syndrome|url= http://www.telegraph.co.uk/women/health/my-life-got-taken-away-from-me---what-its-really-like-to-suffer/|newspaper= The Telegraph|location= London|access-date= }}</ref> ''The Telegraph'' By: Hannah Radenkova. (Sep 5, 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'''<ref>{{citation |last = Wright | first = Nathalie | date = 18 October 2016 | title = My final year at Oxford, when I felt punished for having ME|url= https://www.theguardian.com/education/2016/oct/18/oxford-university-punished-me-students-expelled-ill|newspaper= The Guardian|location= London|access-date= }}</ref> ''The Guardian'' By: [[Nathalie Wright]]. (Oct 18, 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'''<ref>{{citation |last = Millington | first = Alison | date = 15 November 2016 | title = What it's like to have Chronic Fatigue Syndrome, an illness that makes you feel exhausted all the time|url= http://www.businessinsider.com/chronic-fatigue-syndrome-symptoms-what-its-like-2016-11|newspaper= Business Insider|location= New York|access-date= }}</ref> ''Business Insider'' Science By: Alison Millington. (Nov 15, 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?'''<ref>{{citation |last = Whittingham | first = Naomi | date = December 19, 2016 | title = Severe ME left me in a world of pain and darkness. 26 years on, why is it still so poorly understood?|url= https://www.opendemocracy.net/naomi-whittingham/severe-me-left-me-in-world-of-pain-and-darkness-26-years-on-why-is-it-still-poorly-understood|newspaper= openDemocracy|location= UK|access-date= }}</ref> '''openDemocracy''' By: Naomi Whittingham. (Dec 19, 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”'''<ref>{{citation |last = Hill | first = Jamison | date = 13 Jan 2017 | title = A psychosomatic diagnosis is a doctor’s way of saying, “I don’t have a clue”|url= https://qz.com/884658/are-chronic-fatigue-syndrome-ibs-and-crohns-disease-really-all-in-the-mind-a-psychosomatic-disease-diagnosis-is-a-doctors-way-of-saying-i-dont-have-a-clue/|newspaper= Quartz|location= Washington, DC|access-date= }}</ref> ''Quartz'' By: Jamison Hill. (Jan 13, 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'''<ref>{{Cite news |last = Harris | first = Scott Jordan | date = November 1, 2016 | title = CBT won't cure my chronic fatigue, any more than it would cancer – it’s a physical illness|url= https://inews.co.uk/opinion/comment/cbt-wont-cure-my-chronic-fatigue-me-any-more-than-it-would-cancer-its-a-physical-illness/|newspaper= iNews|access-date= }}</ref> ''iNews'' By: Scott Jordan Harris. (Nov 1, 2016) "The announcement of a new initiative to offer online [[cognitive behavioral therapy |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'''<ref>{{citation |last = Horner | first = Scott Jenny | date = 24 January 2017 | title = Children with ME need relevant science, not pressure to do more, more, more|url= https://thebristolcable.org/2017/01/children-with-me-need-relevant-science-not-pressure-to-do-more-more-more/|newspaper= The Bristol Cable|location= London|access-date= }}</ref> ''The Bristol Cable'' By: Jenny Horner. (Jan 24, 2017) "In November, Bristol University made national headlines for a £1m trial attempting to treat child ME sufferers using a specific form of [[cognitive behavioral therapy|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'''<ref>{{citation |last = Robinson | first = Sarah | date = 2 November 2016 | title = '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 | url = http://www.thewestonmercury.co.uk/news/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_1_4760067|newspaper= The Weston & Somerset Mercury|location= |access-date= }}</ref> ''The Weston & Somerset Mercury'' By: Sarah Robinson. (Nov 2, 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'''<ref>{{citation |last = Hill|first = Jamison | date = Feb 10, 2017 | title = Dear anti-Trump protesters: don’t forget those of us with disabilities |url= http://www.vox.com/first-person/2017/2/10/14567112/trump-protest-disabilities-inclusivity?utm_campaign=vox|newspaper= VOX |location= Washington, DC and New York, NY|access-date= }}</ref> ''VOX'' By: [[Jamison Hill]]. (Feb 10, 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?'''<ref>{{citation |last = Wright | first = Nathalie | date = 27 September 2016 | title = ME affects four times as many women as men. Is that why we’re still disbelieved?|url= https://www.theguardian.com/commentisfree/2016/sep/27/me-affects-four-times-women-men-chronic-fatigue-syndrome|newspaper= The Guardian|location= London|access-date= }}</ref> ''The Guardian'' By: [[Nathalie Wright]]. (Sep 27, 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."
Summary:
Please make sure your edits are consistent with
MEpedia's guidelines
.
By saving changes, you agree to the
Terms of use
, and you irrevocably agree to release your contribution under the
CC BY-SA 3.0 License
and the
GFDL
. You agree that a hyperlink or URL is sufficient attribution under the Creative Commons license.
Cancel
Editing help
(opens in new window)
Navigation
Navigation
Skip to content
Main page
Browse
Become an editor
Random page
Popular pages
Abbreviations
Glossary
About MEpedia
Links for editors
Contents
Guidelines
Recent changes
Pages in need
Search
Help
Wiki tools
Wiki tools
Special pages
Page tools
Page tools
User page tools
More
What links here
Related changes
Page information
Page logs