ME/CFS Information

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, […]

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

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    By Jerrold Spinhirne on his Facebook Page.   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 […]

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 […]

WATCH: Schoolgirl’s Illness Message Goes Viral

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  From Pirate FM News.   A video by a 10-year-old schoolgirl girl who has been battling an illness for seven years is going viral. Shannon Tiday, from Plymouth, has M.E. – Myalgic Encephalomyelitis. It is a chronic condition which sees her suffer from things like vomiting, extreme fatigue and crushing headaches. But now she […]

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 […]

Are PIP And ESA Assessments Working Well ?

Parliament

    From www.parliament.uk.   The Work and Pensions Committee launches a new inquiry on how the assessment processes for Employment Support Allowance (ESA) and Personal Independence Payments (PIP) are handled by Department for Work and Pensions contractors ATOS, Capita and Maximus, and how the application, assessment and appeals processes for these two benefits are working. Disparity between […]

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 […]

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 […]

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 […]

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 […]

5 Unrealistic Expectations About Pacing That Can Hurt Our Health

Pacing

    By Kels Invisible-Warrior in The Mighty.   They say the key to happiness, sustaining our lifestyle and managing pain is to simply pace ourselves. We have all been in a place in our lives where pacing our actions would benefit us. Whether it be because we had the flu, were pregnant, broke a leg or we were just too stressed […]

Trial By Error: The NICE “Topic Expert”

David Tuller

    By David Tuller, DrPH.   My first recent freedom of information request to the National Institute for Health and Care Excellence (NICE) was for information about the experts consulted in the current process of reviewing CG53, the 2007 guidance for the illness the agency calls chronic fatigue syndrome/myalgic encephalomyelitis. In its response, the agency explained […]

The Real Story About Chronic Fatigue Syndrome

Chronic

  By Eric Ries in PTinMotion.   Chronic fatigue syndrome (CFS) has come a long way since the 1980s, when it was widely dismissed as “yuppie flu” and was suspected by many health care providers of being a psychological rather than a physiological condition. (A note on terminology: CFS goes by at least 3 names, […]

Graded Exercise Therapy Causes Harm In ME/CFS. Everyone Knows That, Right ?

GET

    From The Self Taught Author Blog by Clark Ellis.   What is patently obvious to the majority of ME/CFS sufferers is not at all obvious to most others. It is not obvious to NHS staff. It not obvious to academics and politicians. It is not obvious to the public. There are many reports […]

17 Apps That Can Make Life Easier When Brain Fog Takes Over

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  By Paige Wyant in The Mighty.   If you struggle with brain fog due to chronic illnessor medication, it can be difficult to keep track of all your doctor appointments, medications and symptoms – not to mention all your other responsibilities, such as work, chores or taking care of your family. Staying organized and remembering […]

Humans Of ME/CFS

Mighty

  By Lori J. In The Mighty.   When I developed ME/CFS (chronic fatigue syndrome), I had never heard of it. I went to a doctor, hoping to get a prescription, and I expected to be back up to full speed in a few days. But, that didn’t happen. So, over the course of the […]

My Bike And M.E – Am I A Cheat, A Fraud Or Reckless ?!

Sarah

  By SarahatSaje.   I don’t think I’m unusual in wanting to celebrate the good things in life. I don’t think I’m unusual in preferring to showcase the things I can do on social media rather than what I can’t. Tuesday 29th August 2017 was a perfect example. It was our silver wedding anniversary. We celebrated with a […]

Antibodies To Adrenergic And Muscarinic Receptors In ME/CFS

Symposium

  Latest news During the Community Symposium on the molecular basis of ME/CFS (R) two different groups of researchers reported on the increased level of antibodies to beta adrenergic and muscarinic receptors in sera from ME/CFS patients vs healthy controls (Figure 1). These new data have been collected independently by Alan Light (University of Utah) and Jonas Bergquist (Uppsala […]

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