ME Conferences & Seminars

Did A Pivotal Moment For ME/CFS Just Happen ?

NIH

      By Cort Johnson in Health Rising.   The National Institutes of Health (NIH), with its pitiful funding, has been a thorn in the ME/CFS community’s side for decades. For decades advocates have thrown everything they could – heartbreaking stories, demonstrations, insults – at the NIH in vain.  Even the much acclaimed 2015 […]

Emerging Insights #1: McGregor’s Grand Conception Of ME/CFS

Australia

  By Cort Johnson in Health Rising.   This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor […]

International Expert On Myalgic Encephalomyelitis Delivering Talk On Misunderstood Condition

Conference

    By Briain Kelly in Galway Daily.   International expert on Myalgic Encephalomyelitis Dr Ros Vallings is giving a talk in Galway on the often misunderstood condition next month. Around 14,000 people in Ireland are thought to suffer from Myalgic Encephalomyelitis (ME), now often diagnosed under the name Chronic Fatigue Syndrome (CFS). Symptoms include […]

IIMEC14 – The Anne Örtegren Memorial Lecture 2019

Anne Ortegren

    From Invest in ME Research.   IIMEC14 is the fourteenth annual international ME conference that the charity has organised in London. For many of those years the charity often communicated with a patient/advocate in Sweden – someone we are proud to have called our friend.   Anne Örtegren passed away in January 2018. […]

ME News In Brief – March 2019

Science

  From Science For ME.   News – events this coming week ME/CFS International Research Symposium 12th – 15th March, Australia. Many well known ME researchers will be speaking. Emerge has announced that most of the program will be available to watch live and will be available afterwards. No pre-registration is required to watch online. […]

Amy Carlson – An Ally To The ME Community

MEAction_WebLogo-50_

    By Adriane Tillman in #MEAction.   Allies are critical to the success of any movement and even more so in the case of people with myalgic encephalomyelitis (ME). So many people with ME are bedridden or housebound and unable to participate in some advocacy and activist actions. While we at #MEAction work hard to […]

Chronic Fatigue Syndrome: Medical Treatments: Written question – 218214

Parliament

  Question by Frank Field MP. Chronic Fatigue Syndrome: Medical Treatments. 218214 To ask the Secretary of State for Health and Social Care, what steps his Department is taking in response to the resolution of the House of 24 January 2019 on appropriate ME treatment. Answer by Steve Brine: The Government is investing over £1.7 […]

Huge ME/CFS Event Held In Boston

Conference

      By Rivka Solomon in ProHealth. Every now and then something happens in our global ME (Myalgic Encephalomyelitis) community that is both noteworthy and hopeful. Something that makes us believe things may actually change for the better. That’s what happened on January 15, 2019, in Boston, Massachusetts, a city known as a medical […]

Parliamentary Debate on ME

Parliament

Am I the only one left a bit disappointed at the end of the ME debate in Parliament today  ?  Many impassioned speeches, which by their nature took a lot of time as they repeated much information given by previous speakers, but all well intentioned and good to see them representing their constituents. I then […]

ME Debate In Parliament – Thursday 24th Of January 2019

Parliament

  Today is a huge day for those of us dealing with ME.  Carol Monaghan MP will be making our case for improved medical education and research funding in this illness.   Although these figures are now probably out of date and on the low side, it’s estimated that there are 250,000 in the UK, […]

Stuart Murdoch’s Open Letter Ahead Of The ME Debate

Stuart

  By Stuart Murdoch in #MEAction.   Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he has kindly shared with us this open letter to the UK government ahead of the ME debate on Thursday, 24th January. Dear UK Government, I am one of the […]

Trial By Error: The Psychosomatic Conference’s Pathetic Response

David Tuller

  By David Tuller.   By David Tuller, DrPH After I posted yesterday’s blog about Per Fink’s upcoming appearance at the fourth annual Columbia Psychosomatic Conference being held this weekend, I received the following e-mail from Columbia’s Alla Landa. She is an assistant professor of “clinical psychology in psychiatry”–whatever that means–and director of the conference. I found […]

Invest In ME Resarch International Conference Week London 2019

invest

  Invest in ME Research has announced dates for events taking place in London for their International Conference Week in May 2019 on biomedical research into ME (Myalgic Encephalomyelitis). The second Thinking the Future conference for young or early career researchers will be on 28th May 2019. The ninth Biomedical Research into ME Colloquium (BRMEC9) […]

Open Medicine Foundation Sponsors Second Annual Community Symposium On The Molecular Basis Of ME/CFS At Stanford University

Conference

    From Market Insider.   LOS ANGELES, Sept. 20, 2018 /PRNewswire/ — Open Medicine Foundation (OMF), the premier nonprofit organization investing in research to cure myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sponsors the Second Annual Community Symposium on the Molecular Basis of ME/CFS on September 29, 2018, at Stanford University. This event is expected to draw more than 300 scientists, […]

Building Allies For M.E. At Women’s Rights Conference

MEAction_WebLogo-50_

  By By Adriane Tillman in #ME Action.   The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in which sexism has played a role in the disbelief, misdiagnosing and mistreatment of patients. (ME affects men, women and children but 75 percent are women.) The National Organization for Women (NOW) held […]

Health Rising: Montreal ME/CFS I: Metabolism The Main Matter? Exercise Issues Expand & A Bad Brain Motor ?

Cort_Johnson

  By Cort Johnson in Open Medicine Foundation.   I thought I was in Paris, so much French was being spoken. The conversations in the cafes, on the streets, in the subways – everywhere – were in French. It turns out that with its 4,000,000 plus residents, Montreal is the second largest French speaking city […]

People With M.E. Must Be Heard, Says NICE Committee

NICE

  From Action For ME News.   Action for M.E. joined stakeholders from patient groups, charities, and professional bodies to take part in Friday’s workshop on the scope of the National Institute of Health and Care Excellence (NICE) guideline on M.E/CFS. The event was part of NICE’s ongoing process to revise its M.E./CFS guideline, with a focus […]

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 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 […]

Trial By Error: The Australian Situation, And Professor Crawley’s New Position

David Tuller

  By David Tuller, DrPH.   So I arrived in Melbourne on Wednesday afternoon. I’ll be in Australia for several weeks for meetings, interviews and general information-gathering. I’ll post occasionally, but some of the information might be for future blogs and stories. I’ve conducted a Q-and-A about the general situation in the country with Penelope […]

Trial By Error: The Dutch Review; My Trip; Bristol’s Silence

DavidTuler-265x300

  By David Tuller, DrPH.   And now some potentially good news from the Netherlands. Two years ago, the Dutch parliament asked the Health Council—an independent scientific advisory body—to review the state of evidence related to the illness generally called chronic fatigue syndrome in the Netherlands. That review was to include the evidence for rehabilitative […]

“Doctors, Please Learn How To Correctly Diagnose Me…” Presentation By Joan Byrne

ME

  This is Joan Byrne’s presentation given during the “Call For Change” Awareness and Educational event at Leinster House, Dublin  on the 24th January 2018.   What is Myalgic Encephalomyelitis? M.E. is an acquired complex neurological disorder affecting multiple systems of the body. Many cases are preceded by a viral infection with onset being usually rapid (acute). Affected individuals do […]

Westminster Hall Debate On The PACE Trial And Its Effects On People With ME: An Analysis Of The Response From Caroline Dinenage MP, Minster Of State For Care

Parliament

  By Robert Saunders in #MEAction.   On the 20 February 2018 a debate was held in the Palace of Westminster (UK) on the PACE trial and its effects on people with ME. (See #MEAction summary.) Carol Monaghan MP, who secured the debate, raised many valid and important concerns, as did several MPs who intervened during […]

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 […]

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 Being Discussed On BBC Radio Scotland On 14 February

Radio

  Tomorrow, 14th February, at 12 noon, BBC Radio Scotland’s John Beattie programme will be interviewing several people about issues around ME. Those being interviewed we have been told, include: – MP Carol Monaghan – who has secured next week’s Parliament debate on the Pace Trial – Janet Sylvester – organiser of the recent Scottish […]

Trial By Error: My Six-Month Review

David Tuller

  By David Tuller, DrPH.   This month is the start of the second half of my one-year crowdfunding commitment to keep reporting on ME/CFS, so I figured I should review what I’ve done so far, what I still hope to do, and what changes have taken place during the last six months. So, here […]

Linda Tannenbaum Worldwide Tour Talk

Open Medicine Foundation

  From The Open Medicine Foundation.   As a part of the 2017 End ME/CFS Worldwide Tour, Linda Tannenbaum, CEO/President, spoke in six European countries and seven U.S. cities. Each visit included a presentation, Q & A session, and personal meet and greet. On the tour, Linda had the honor of meeting hundreds of patients, parents […]

Sheringham Film And Panel Event Exposes Hidden Struggle Of Patients Living With Chronic Fatigue

Norman Lamb MP

  By Eleanor Pringle in North Norfolk News.   The hidden struggles of life with Chronic Fatigue Syndrome (CFS) will be highlighted this month as the Sheringham Little Theatre and Norman Lamb back an inspiring North Norfolk organisation. The Sheringham CFS group is the only support group in North Norfolk which focuses specifically on the disease. Now, […]

Trial By Error: The School Absence Study, Revisited

David Tuller

  By David Tuller, DrPH.   This post is about a serious issue–ethical approval for research studies involving children. It is also about how powerful institutions, like leading medical journals, respond to concerns. But the story is really too long and complicated. I recommend it only for those following things pretty closely or who for […]

Review Of Wellbeing And Prevention Services

Partnership

  From North Yorkshire Partnerships.   Wellbeing and Prevention consultation – Proposals for future investment into support North Yorkshire County Council’s Health and Adult Services is currently holding a consultation on proposals for best use of the available investment in community-based support, to help adults in North Yorkshire stay well and independent in their local […]

Carly Maryhew’s Open Letter To TEDxBristol Regarding Esther Crawley’s “Disrupting Your View Of ME” Presentation

TED Talks

  By James C Coyne in the Coyne Of The Realm Blog.   Carly Maryhew’s recent open letter to TEDxBristol concerning the failure of Esther Crawley’s recent talk to adhere  to TEDx’s explicit content guidelines is a gem, well worth a read by a general audience. At one level, her letter is a contribution to the ongoing […]

A Young Hero

Truls

  From ME-foreldrene.  The ME Parents Group.   Truls, a young boy of 12 years, has ME. Because of his ME, Truls is rarely able to leave home.  But when his doctor Kristian Sommerfelt asked for his help in educating medical students, Truls didn’t hesitate at all. He agreed to join Sommerfelt’s lecture. «We need more […]

Trial By Error: My Brief Encounter With Professor Crawley

David Tuller

  By David Tuller, DrPH.   At noon last Friday, at the University of Exeter’s Mood Disorders Centre, Professor Esther Crawley gave a talk called “What is new in paediatric CFS/ME research.” When I saw a notice about the event the day before, I felt it might be my one chance to ask her directly […]

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