Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

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, […]

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 […]

The York ME Community Links With Disability Employment Company evenbreak

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    The York ME Community has linked up with The Disability Employment Company evenbreak. This is a company run by disabled folk who believe that disabled people deserve an ‘even break’. Evenbreak, a not-for-profit social enterprise, was formed to achieve three aims: • To help inclusive employers attract more talented disabled people; • To […]

Can Positivity Cure Any Disease ?

Anil

    By Anil van der Zee, in his Capture, Dance, Words Blog.   As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark […]

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 […]

The York ME Community Coffee Club

ME Coffee Mornings

  Our Coffee Club meets on the third Wednesday of each month for a cuppa and a natter at The Novotel York. Our next get together is on Wednesday 18 October at 2 pm.  The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand. Due […]

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. […]

Concerns over criteria for ‘fitness for work’ reassessment exemptions

DWP Caxton House

    By John Pring in Disability News Service.   Disabled campaigners have criticised new Department for Work and Pensions (DWP) rules that explain which benefit claimants will no longer have to be repeatedly put through the much-criticised “fitness for work” test. DWP announced last month, on the eve of the Conservative party conference in […]

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 […]

Pacing By Numbers: Using Your Heart Rate To Stay Inside The Energy Envelope

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    By Bruce Campbell in CFIDS & Fibromyalgia Self Help. If you have CFS, you are probably familiar with post-exertional malaise, the severe fatigue that results from doing too much. You can avoid or at least reduce malaise by staying within your limits or energy envelope. This article describes a strategy for staying within one […]

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 Psychological Impact Of Having To Ask For Help

Help

    By Debbie Deboo in The Mighty.   I was diagnosed with ME 15 years ago. Before that I was a confident professional in charge of my own life and completely autonomous. When I got ill I found myself in the difficult position of having to rely on others. I could no longer go anywhere […]

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

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    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 […]

Raising Funds For Invest In ME Research – At No Cost To You !

GoRaise

An easy way to raise funds for Invest in ME Research without it costing you a penny. Who says you don’t get owt for nowt ? There are over 3,000 retailers at GoRaise who will donate to Invest in ME Research every time you shop with them via our link at the top of this […]

What It’s Like To Transition On To Universal Credit

Universal Credit

By Peter Dwyer and Sharon Wright in The Conversation.   Originally designed with the intention of “making work pay” by smoothing out transitions between paid work and welfare, Universal Credit is now being widely criticised for failing to deliver on its promises. Despite calls by a group of Conservative MPs for the next phase of the welfare […]

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 […]

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