Disability

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 […]

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 […]

Motability’s Tyre Policy ‘Risks Safety Of Customers’

Motability Logo

  By John Pring in Disability News Service.   The Motability car scheme has been accused of risking the safety of its disabled customers, by refusing to replace their tyres until they are only just above the legal minimum tread depth. Disabled campaigner Ian Jones, one of the founders of the WOW petition, said that the […]

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 […]

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 […]

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 […]

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 […]

The Little Known Nutrient That’s Growing My Daughter New Mitochondria | PQQ

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    By Rebecca Ferguson in the Recovering Kids Blog.   Mitochondria. We all have them. We all need them. We need them especially in order to digest some of the biology textbook reminiscent explanations of what they do! But we’ve got even the most mito-challenged, fatigued among you covered with a two-minute, easy-to-follow video that explains […]

What To Remember On Days Your Illness Makes You Feel Like Giving Up

Lost

  By Sarah Waisler in The Mighty.   Dear You, You are absolutely right. This does suck, it’s not fair, you do deserve better. This is not what you had planned and you would have done more if you had been given the chance. But you weren’t given that chance and my heart breaks for you. I […]

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 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 […]

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 […]

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