ME Research And Researchers

Mike’s EU Marathons – Amsterdam Report

Mike Amsterdam

    From Mike Harley’s EU Marathons Website.   Ahead of my trip to Amsterdam I’d made contact with a number of Dutch patient groups and associations who had all been very interested in supporting my challenge.  I interviewed M.E patients Anil and Frank along with campaigner and carer Rob, click here to read what they had […]

Is It Just ME Or Is This A Real Disease ?

Lost

  By George Winter in The Medical Independent. George Winter examines the evolution of recognition for myalgic encephalomyelitis (ME). In 1926, TS Eliot, then editor of The Criterion, published Virginia Woolf’s essay On Being Ill, where she bemoans the “poverty of language” with which to describe illness: “Let a sufferer try to describe a pain in his […]

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

David Tuller

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

How Physical Therapists Are Getting It About Chronic Fatigue Syndrome (ME/CFS)

Cort_Johnson

    By Cort Johnson in health Rising.   Immunologists aren’t interested. Neurologists, in general, are to be avoided. Endocrinologists can’t be bothered. Except for primary care physicians specializing in chronic fatigue syndrome (ME/CFS), the outlook in the medical field for ME/CFS patients is pretty bleak. If a chronic fatigue syndrome (ME/CFS) patient doesn’t encounter […]

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

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

Myth: ME Is A Mental Illness

ME

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

Ian Lipkin & Simmaron To Collaborate In New NIH ME/CFS Research Center

Dr Ian Lipkin

  By Cort Johnson and Courtney Miller in Simmaron Research. (Dr Ian Lipkin pictured) “These important grants will provide a strong foundation for expanding research in ME/CFS, and lead to knowledge about the causes and ways to treat people affected by this mysterious, heartbreaking, and debilitating disease,” Dr. Francis S. Collins, Director of the NIH Simmaron […]

Bottom Of The Ramp

Research Funding

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

RituxME

9-18-2010-rituximab

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

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

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

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, […]

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

Exercise

  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

Coyne

  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 ?

Gut

    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 […]

Counting The Cost – Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Julia Manning

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

‘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’

Jen

  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

Julie

    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 […]

NIH Awards $10.6m Research Center Grant To The Jackson Laboratory For Study Of Chronic Fatigue Syndrome

Funding

    By Joyce Dall’Acqua Peterson in The Jackson Laboratory website.   As part of a major, multi-institutional, multidisciplinary assault against myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), a highly debilitating and poorly understood chronic disease, Jackson Laboratory (JAX) Professor Derya Unutmaz, M.D., has received a five-year grant totalling $10,553,732 from the National Institutes of Health. This Center will be […]

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