ME Support and Awareness in York

How Medical Guidelines Become Suffering

ME2

  By Melanie Schickedanz in Huffingtonpost.de.   At the end of January, DEGAM (German Society for General Medicine and Family Medicine ) published the newly revised guideline “Tiredness” , although it is still “in progress” on the homepage of the AWMF (as of 15.02.2018). DEGAM is a German non-profit professional association that represents the professional and scientific interests of general medicine in Germany. The disease […]

Having A Chronic Illness Is Not Romantic

Frustration Chronic Illness

  By Becca in Confessions of a Spoonie, as published by Scope.   Becca writes the blog Confessions of a Spoonie and today is talking about the romanticism of chronic illness in books and films and how she feels about it. I  worry about certain things; how clean is my house, all the books on my bookshelf […]

‘Muddle’ And ‘Confusion’ Over DWP’s 1.6 Million PIP Reviews

DWP Caxton House

  From My Disability Matters.   The Department for Work and Pensions (DWP) is causing “muddle” and “confusion” by refusing to clarify which disabled people will have their claims re-examined through its mammoth programme of disability benefit reviews. Sarah Newton, the minister for disabled people, announced last week that DWP would review 1.6 million personal independence payment […]

Finally – An Objective Measure of Fatigue ? An ME/CFS And Fibromyalgia Inquiry

Eye

  By Cort Johnson in Health Rising.   Making Fatigue Real Fatigue is like the Rodney Dangerfield of symptoms – it just gets no respect. The problem is the poor descriptive power of the word. It readily describes the everyday, manageable fatigue that most of the population regularly feels. That fatigue, though, has little relation […]

PACE Trial: People With ME

Parliament

  From The House of Commons Hansard. [Mr Philip Hollobone in the Chair]  11.00 am Carol Monaghan (Glasgow North West) (SNP) I  beg to move, That this House has considered the PACE trial and its effect on people with ME. It is a pleasure to serve under your chairmanship, Mr Hollobone. “The doctor doesn’t see me crawl […]

The Choices You Have As A Chronic Illness Warrior

ME3

  By Lisa Alioto in The Mighty.   Life is full of constant choices. Some are small and meaningless and others are life-changing. The key and beauty of it all is that there is an abundance of daily choices. Every day presents a fresh set of choices and it is up to each one of us to choose […]

Trial By Error: A Letter To BMJ Open

David Tuller

  By David Tuller, DrPH.   Three weeks ago, Professor Racaniello e-mailed a letter of concern to Archives of Disease in Childhood about its recent study of the Lightning Process as a treatment for ME/CFS in kids. The journal’s editor, Dr. Nick Brown, answered within an hour, assuring Professor Racaniello that he took the matter seriously and that the […]

The Fight That Follows Pain And Prejudice

Carol Head

  From MS Blog Magazine.   More than four decades ago, while a high school junior in Columbus, Indiana, I decided I wanted to run track. But I was told that girls were not allowed to compete in sports. Angry and confused—why can’t girls do sports?—I fought for and eventually won the right to start […]

ME/CFS: Thiamine Is Key; Coffee & Tea Inhibit It

Vitamins

  By Tracy Duvall.   As I’ve noted elsewhere, thiamine forms part of a suite of supplements that might counteract energy problems in ME/CFS. In any case, thiamine (or thiamin) is vital to energy production and other biological processes. A lot of people think that coffee or tea is vital to getting enough energy, too. For years […]

‘I Am A Hard Worker’

Disability

    By Terrence McCoy in The Washington Post.   Roanoke, Ala. — She wanted her clients to look to her for inspiration, so Teresa Boullemet stamped out her cigarette, popped a peppermint, sprayed herself with perfume and applied fresh lipstick. “Are you going to the farthest corners of the world today?” her assistant asked […]

NICE Announces Next Steps In Updating Its Guideline On ME/CFS

NICE

From www.nice.org.uk   A workshop last month with stakeholders marked the formal start of NICE’s collaborative work to update its 2010 guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The workshop was held so that stakeholders, including patient groups for people with ME/CFS and their carers, could help NICE identify at […]

Cortene II: A New Drug & A New Hypothesis For Chronic Fatigue Syndrome (ME/CFS)

HPA Axis

  By Cort Johnson in Health Rising.   Stress “Stress” is an unfortunate term. Usually we think of stress as emotional; in biology, though, stress means anythreat that disrupts the balance (or homeostasis) of the body. The stress response or HPA axis, prepares the body to respond to the threat. Any threat then, whether infectious, emotional, physical, chemical, […]

Robin, A Free Kiwi-Made Game About Chronic Fatigue Syndrome, Is Out Now

Gaming

  By Matt Maguire in Game Planet.   A Kiwi game about chronic fatigue syndrome is available now on Steam for the princely sum of zero dollars and zero cents. Robin is described by developer Group Pug as a short slice of life game that was made to give some visibility to an invisible illness – “a quick, relatable […]

Boyzone To Play York Racecourse This Summer

Boyzone

  From YorkMix.   Chart-busters Boyzone are to play York this summer. The four surviving members of the multi-million selling band are the latest signings to the popular Music Showcase days at York Racecourse. It will mean a return to York for Shane Lynch who starred in the Barbican panto Robin Hood and the Babes In […]

Exercise Elevates Blood Signature Difference Between People With, Without Chronic Fatigue Syndrome

Exercise

  By Bruce Goldman in SCOPE.   A bout of exercise is about the last thing you’d imagine a person with chronic fatigue syndrome – also known as myalgic encephalomyelitis and often designated by the acronym ME/CFS – would want to endure. And you’d probably be right. But a new study suggests that a blood test following exercise may be a […]

Mike Harley’s 28 EU Marathons For ME Awareness

Mike Barcelona

  My name is Mike Harley, I’m 35 and live in Bristol, UK and I’m running Malta Marathon as part of my challenge to run a marathon in every country in the EU (28 in total) to help raise money and awareness for biomedical research to find a cure for Myalgic Encephalomyelitis (M.E.) One of […]

Prescribing Mindfulness Allows Doctors To Ignore Legitimate Female Pain

Mindfulness

  By Sarah Yahm in SLATE.   A few years ago, after a series of cascading injuries and illnesses that rendered me unable to type, drive, or sleep, I briefly became a professional patient. Like all of my professions, I took it seriously. I went to appointments armed with lists of well-researched questions written down neatly […]

Worldwide ME Talent Search !

Talent

  Hi Everyone.  I’m on the lookout for anyone in the ME Community, anywhere in the world who would like to lend their talents to raising ME Awareness. We are working on putting together an album consisting of Music, Poetry Readings and the like, so are on the lookout for singers, writers and musicians to […]

ME Gets A Mention On BBC Radio Scotland – Listen Here…..

Radio

  From BBC Radio Scotland.   A piece on ME on BBC Radio Scotland on 14 Feb worth a listen.  It starts around the 36 minute mark.   Please let others know where to find it !   To listen in, click on the link below:   Link to ME Broadcast

Help From Your Pharmacy Team

Pharmacy

  From NHS Choices.   Your local pharmacy is the place to go to get any prescription medicines and clinical advice for minor health concerns. But they do a lot more than that. As well as helping with common illnesses – like sore throats, coughs, colds, tummy troubles and aches and pains – pharmacy teams can also help […]

Why The Annual Winter Health Crisis Could Be Solved In Homes, Not Hospitals

NHS

  By Richard Morris in The Conversation.   As winter continues, so does the usual soul searching about the state of the UK’s National Health Service (NHS). Images of ambulances backing up outside emergency departments and patients lying on trolleys in corridors haunt politicians and the public alike. Demand on the NHS, which is always […]

Rituximab Trial And Research

9-18-2010-rituximab

  From Invest In ME Research.   Statement Following Preliminary Phase III Rituximab Clinical trial Results from Norway Following the preliminary results which Professor Olav Mella recently publicly released from the Phase III multi-centre double-blinded placebo-controlled Rituximab Clinical Trial (see statement 21st November 2017) the charity has had discussions with advisors and researchers and has now […]

Care And Support For Older People

Age

If you’re looking for advice about how you can get care and support for yourself or someone else, our guides can provide the answers. If you need more help or your situation is urgent, call our Freephone Helpline on 0800 319 6789 to arrange to speak to an adviser. As you get older, your care and support […]

The Failure Of Clinical Guidance For People With ME

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  From #MEAction.   ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for people with Myalgic Encephalomyelitis.  The patient community has long reported these treatments to be ineffective and harmful, and, yet, health societies and […]

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