ME World Perspective

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

CDC

    From the CDC (Centers for Disease Control and Prevention) Website.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a serious, long-term illness that affects many body systems. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have severe fatigue and […]

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 […]

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, […]

Humans of ME/CFS

ME Drained

  By Laura O, in Solve ME/CFS Initiative.   I stared feeling run down and not quite myself nearly four years ago. I had all these strange things happen to my body. I just couldn’t get my head around it. The symptoms I had/have scared me and at times I actually thought, “I’m dying.” Who gets this […]

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

nih_logo

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 ?

lightning-e1422445255450

    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

ME

    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

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 […]

Hurricane Maria’s Next Victims May Be U.S. Patients Who Rely On Drugs Manufactured In Puerto Rico

Painkillers

    By DocDawg in Daily Kos.   Puerto Rico’s single largest and most important export isn’t rum or sugar cane. It’s pharmaceuticals — the prescription drugs we all count on being there when we need them. Spurred by a favorable U.S. tax code provision, the 1970s witnessed nearly all of America’s largest pharmaceutical companies investing billions of dollars […]

Stanford Medicine X Ignite Talk

ryan_prior

    By Ryan Prior in rtprior.com.   Below is the text of a speech I delivered on the main stage of Stanford Medicine X on September 16, 2017. Giving the speech was a highlight of 2017, and I used the occasion to talk personally about my disease and how it affects my outlook on […]

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

research

  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? […]

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