Charity

Purpleman Plans 22-Hour Marathon For Manchester Bomb Victims

Purple Man

  From Minster FM News.   The York street entertainer Purpleman is planning a tribute the victims of the Manchester Arena bombing which claimed the lives of a Mum and Dad from the city. He will stay out all night as part of a 22-hour marathon on Stonegate in their honour. It comes as York Minster […]

Why I Started A ‘Knitathon’ To Raise Awareness And Funds For ME/CFS

Knitting

  From The Mighty.   My name is Lauren Childs and I am the founder and organizer of the “All About M.E. Knitathon.” I live in the west midlands in England, UK. I wanted to create an awareness project which was going to be eye-catching and a way in which the ME/CFS forgotten individuals from […]

Invest In ME Research Biomedical Research Into ME (BRMEC) Colloquiums

invest

The Invest in ME Research Biomedical Research into ME (BRMEC) Colloquiums are research meetings organised by the charity to encourage biomedical research into ME and international collaboration amongst researchers. This has been one of the main objectives of the charity. Invest in ME Research began arranging biomedical research conferences in our first year and have continued them […]

A New Research Landscape Emerges In America

Research

    By Simon McGrath in ME/CFS Research Review.   Things are changing in the US for ME/CFS research as four new collaboratives set up and get to work. In September last year, the National Institutes of Health (NIH) announced $35 million of funding to establish three new ME/CFS research collaboratives and a supporting data […]

York Carers Centre News

York Carers Centre

May Bank holiday We will not be open on Monday 7 or Monday 28 May. We will not be checking our answer machine or emails on these days. If you need urgent help when we are closed please contact the Emergency Duty Team on 01609 780780.   Job opportunity We are recruiting for a Sessional Carer […]

Music4ME Newsletter Number 3

Music4ME - Copy

  From Music4ME.   With just under three weeks to go until the Album is released things are moving along very quickly and this week we are releasing two powerful videos that highlight the courage and strength of people with M.E. Since we started this project we have seen highlighted, more than ever, how brilliantly […]

The Great Get Together 2018

Great Get Together

  In June 2017, we organised the biggest neighbourhood celebrations since the Jubilee street parties. We’ve heard from all quarters that we should do The Great Get Together again, so we’re beginning to plan another, for 22nd – 24th June 2018. We’re inviting people to get together with their neighbours to share food and celebrate […]

Trial By Error: Two Interview Podcasts, and “Conflicts of Interest”

David Tuller

  By David Tuller, DrPH.   For those not yet sick of my voice, here are two more chances to hear me reiterate variations of my message: On Monday morning, I was interviewed in Perth for the radio show Mornings with Gareth Parker, on the 6PR882 Talk Radio network. (Never mind that the description in the link […]

Trial By Error: My Australian Tour, Continued

David Tuller

    By David Tuller, DrPH.   Last week, I spent three days in Hobart, on the island of Tasmania. Besides strolling around looking for cafes where I could drink decent coffee and write, my main work-related activity was giving a talk at Menzies Institute for Medical Research, part of the University of Tasmania. About 40 people attended, […]

The Music4ME Project

Music4ME - Copy

  An album of original songs and poetry composed and performed by people with M.E. from all over the world, will be released on ME Awareness Day, 12 May 2018. They may have been singers, performers, writers or musicians before they became ill and still have so much to give but are now too ill […]

Trial By Error: A Post About Andrew Lloyd

David Tuller

  By David Tuller, DrPH.   I know folks are eager to hear more about what I’m learning in Australia. I’m finding it challenging to have meetings, prepare for talks, conduct interviews, promote the crowdfunding, keep up with my BMJ Open correspondence, and also write posts about what’s happening here. It will take a bit of time […]

York Carers Centre

York Carers Centre

Vacancies Over the next couple of weeks we will be advertising various job opportunities. Please keep an eye out on our website www.yorkcarerscentre.co.uk for details.   Carers Action Group and Homecare Focus Group The next Carers Action Group (CAG) is on Tuesday 10 April, 10am to 12noon in the Penn Room at Friends Meeting House, […]

Mike’s EU Marathons For Invest In ME Research – Austria

Austria

  AUSTRIA I’ve interviewed 3 people with ME in Austria who have given me their account of life there with the illness. How did you get ill and how were you diagnosed? Sebastian:  Probably following an EBV infection at elementary school age. Sonja:  I had neuroborreliosis from 2011-2014, after which I was fine for 1 year. When […]

Trial By Error: My Time In Canberra

David Tuller

  By David Tuller, DrPH.   I’m in Sydney now, but last week I had a busy few days in Canberra. My hosts were the wonderful duo of Libby Steeper and Eleanor Flowers. They treated me like royalty and shepherded me around town to the various appointments they and others had organized. As a representative […]

A Consensus-Driven ME/CFS Clinician Coalition Takes Shape

Bateman Horne Center

    By Stephanie Griffin.   On March 2-3, 2018, the Bateman Horne Center hosted an exciting summit of leading U.S. ME/CFS clinicians who came together to share their pearls of wisdom on diagnosis and treatment in order to improve ME/CFS clinical care and refine more precise research targets. The meeting was remarkable for the ambitious nature […]

Much Can Be Done To Ease ‘Chronic Fatigue Syndrome’ Symptoms

Doctor

    By Miriam E Tucker in Medscape.   SALT LAKE CITY, UT — The illness commonly known as chronic fatigue syndrome is complex and currently incurable, but clinicians can still do a great deal to manage symptoms and improve patients’ quality of life, experts agree. In a 2-day meeting held March 2 and 3, […]

Trial By Error: News About My Plans

David Tuller

  By David Tuller, DrPH.   So I’ve been asked about my plans after June 30th, which is the end of the period covered by last year’s crowdfunding campaign. There’s been significant progress since I launched that effort. Among other developments, the CDC dropped its recommendations for CBT and GET, NICE decided to withdraw its preliminary […]

Raising Awareness Of ME In The Heart Of London – The Royal Parks Half Marathon

Run

  From Invest in ME Research.   Invest in ME Research have secured FIFTEEN places in the Royal Parks Half Marathon on Sunday 14th October 2018. This will be another great opportunity for the charity to raise awareness of its strategy of funding high-quality biomedical research and the development of a UK/European Centre of Excellence for ME – […]

York Carers Centre – March Update

York Carers Centre

  York Carers Centre news Vacancy – Office Manager We are seeking to recruit a highly organised and experienced Office Manager to join our friendly dedicated team to oversee the day to day running of our busy city centre office alongside taking an active role in the development of systems and procedures. The post-holder will […]

Mike’s EU Marathons For Invest In ME Research – Malta

Mike Malta

    By Mike Harley.   I made contact with the Malta ME, CFS and Fibromyalgia Alliance before flying out for number 15 of 28, here’s what they told me about life in Malta with ME.  I had lots of great support from the group and they managed to get the challenge featured in Lovin Malta alongside the coverage I managed […]

Ben Runs 4 ME – The Malta Marathon

Ben in Malta

    Marathon number 11 done at the beautiful Malta Marathon 2018! We started up in ancient Mdina and ran an overlapping first half of the course through the amazing countryside before turning towards the coast. After passing through a few small villages we arrived at the walled city of Valetta, the European Capital of […]

This Is Why Three Top Telly Presenters Were Sitting On A Sofa By The River In York

Look North

From YorkMix.   It might be the most famous sofa in Yorkshire. And now the red BBC Look North couch is going on tour across the county – hauled, pushed and rolled by the presenters themselves. Anchors Harry Gration and Amy Garcia, along with weatherman Paul Hudson, are leaving their Leeds studio to go on […]

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 […]

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 […]

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 […]

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 […]

ME/Chronic Fatigue Syndrome

quadram-logo

  From The Quadram Institute.   Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a severely debilitating condition that is thought to affect up to 250,000 people in the UK. Symptoms include widespread pain, extreme tiredness and an inability to concentrate. The causes of ME/CFS aren’t known, and there are no effective […]

‘Urgent Request’ To Investigate Motability Scheme Put To National Audit Office

Motability Logo

  By Joe Peskett in Access and Mobility Professional.   An urgent request has been put to the National Audit Office by Work and Pensions Secretary Esther McVey to look into the Motability charity after a row erupted this week exposing the scheme’s alleged £2.4 bn of cash reserves and the £1.7 m salary it […]

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