chronic fatigue syndrome

My Life As ‘Little Miss Brain Fog’

Brain Fog

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

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

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

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

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

Too Fatigued To Do Anything – Director Jennifer Brea Exposes The Personal Pain Of A Rare Disorder In The Doc ‘Unrest.’

Jen Unrest

  By Amy Kaufman   Jennifer Brea was a PhD candidate at Harvard University when her mind started to fail her. At age 28, she was already an accomplished academic, a graduate of Princeton who’d moved to Massachusetts to delve into the world of political economy and statistics. But in the midst of her studies, […]

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

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

Trial By Error: NIH Grants $2.1 Million To UK Biobank !

David Tuller

  By David Tuller, DrPH   The National Institutes of Health is making a $2.1 million grant to the UK ME/CFS Biobank–a huge endorsement of this important project run by CureME and housed at the London School of Hygiene and Tropical Medicine. Here’s what the ME Association wrote on its website: “The funding represents the biggest ever single […]

For Patients With CFS, Going To The Bathroom Is Similar To Running A Marathon.

Chronic

    By: Ellen de Visser.   Patient and doctor Mark Vink about Chronic Fatigue Syndrome. Having so little energy that you can only leave your bed twice a day: that’s what CFS can be like. Researchers suggest it’s a mental disease. Nonsense, says doctor and CFS-patient Mark Vink. Mark Vink’s whole world consists of […]

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

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

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

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

Leaky Gut: What Is It, And What Does It Mean For You ?

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    By Marcelo Campos, MD  in Harvard Health Publishing.   Before the medical community had better understanding of the mechanisms that cause disease, doctors believed certain ailments could originate from imbalances in the stomach. This was called hypochondriasis. (In Ancient Greek, hypochondrium refers to the upper part of the abdomen, the region between the breastbone and the navel.) […]

Three NIH Funded ME/CFS Research Centers….And (What Else ?) A Controversy

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  By Cort Johnson in Health Rising.   Almost two years after Dr. Collins announced that the NIH would reinvigorate ME/CFS, the NIH has finally provided funding for three research centers and one data center. Earlier this year the ME/CFS research community surprised by submitting no less than 10 applications, including one from a research […]

‘Unrest’ Puts Spotlight On Disease That Affects Millions, Including Riverside Girl, 12

Jen Unrest

      By Darcel Rockett in The Chicago Tribune If you had to live your life knowing that you have only 20 percent of your energy to expend on any given day, how would you ration out your days? How would you make your decisions if hours and days of pain followed, while trying to recharge? […]

Filmmaker Opens Up About Illness That Doctors Told Her Was ‘All In Her Head’

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  From www.today.com   Jennifer Brea was on her way to earning a doctorate from Harvard when she was stricken with an illness that doctors said was “all in her head.” She is joined live on Megyn Kelly TODAY by her husband, Omar Wasow, and NBC News medical contributor Dr. Natalie Azar to talk about […]

The Mystery Illness That Plagued This Writer For Years

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    By Julie Rehmeyer in Oprah.com.   On Saturday, November 4, 2006, I woke up semiparalyzed. My legs felt lead-plated; the signals instructing them to move seemed to get scrambled on the way down. It was as if someone had sloppily replaced my limbs with those of an elephant and connected only 10 percent of […]

Trial By Error: NICE Rejects Current Guidance, Plans “Full Update”

David Tuller

  By David Tuller, DrPH.   Let’s give credit where it’s due. Apparently someone with decision-making authority at the National Institute for Health and Care Excellence (NICE) has a grasp on reality and is willing to challenge the claims of the biopsychosocial ideological brigades. That’s the only logical explanation for last Wednesday’s welcome but unexpected announcement that […]

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

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

The SMILE Trial And Its Not-So-Happy Aftermath – A Statement From Invest In ME Research

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  From Invest in ME Research.   Invest in ME Research has never approved of the Lightning Process (LP) business and its model of operation where former ‘recovered’ patients pay a lot of money to become practitioners of this Trade Mark training programme. We view this as a pyramid business – unregulated, unaccountable and unscientific. […]

Unrest: The Hero’s Journey Of Jennifer Brea

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      By Don Schwartz in From The Heart Productions.   As documentary films go, it doesn’t get more powerful than this. A young woman—healthy, happy, intelligent, talented, Hollywood beautiful, married to a loving man, living an adventurous, exciting life—is struck down by a debilitating, apparently incurable disease. This young woman fights back. The disease […]

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

Help

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

Do You Have Chronic Fatigue Syndrome ?

Chronic

    By Edmund O. Lawler in Next Avenue.   Despite a profound and persistent fatigue that struck when he was 40 and lasted through his 50s and into his 60s, Leonard Jason, a psychology professor at DePaul University in Chicago, is a remarkably productive scholar at 68. He has published 700 scientific articles and has written or […]

Changing Hearts And Minds: A Review Of Unrest

Jen Unrest

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

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