ME World Perspective

Trial By Error: Psych Issues Do Not Predict ME/CFS, New Chicago Study Shows

David Tuller

    By David Tuller, DrPH. For decades, investigators have argued over the causes of the illness or cluster of illnesses variously called myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS),  ME/CFS, CFS/ME and other names. In the absence of an adequate explanation for the debilitating symptoms, a flawed approach to intervention based on the perceived […]

A Geneticist’s Quest To Understand His Son’s Mysterious Disease

Ron Davis

By Tracie White in The Scientist. Ronald Davis of Stanford University changed his focus to research on ME/CFS, the disease formerly known as chronic fatigue syndrome, in a bid to help his son and others like him.   About 10 years ago, Stanford University genomicist Ronald W. Davis began a new investigation into a mysterious […]

Ivabradine – Could A “Wonder Drug” For POTS Work In ME/CFS ?

johnson_cort

By Cort Johnson in Health Rising.   Ivabradine appears to work quite well in POTS  – but should we stop there? Ivabradine was approved for use in the European Union in 2005, but it’s pretty new to the scene in the U.S. It was FDA approved in only 2015. That means it doesn’t have much […]

History Made ! Department Of Defense Funds Its First-Ever ME/CFS Research Projects

Funding

  From Solve M.E. Since 2017, unleashing the potential research funds from the Department of Defense (DOD) for ME/CFS has been one of our highest priorities. After more than three years of hard work, the first ME/CFS awards *ever* funded by Peer Reviewed Medical Research Program (PRMRP) have been announced! This has been a really hard year […]

Trial By Error: GP Group Removes Online GET/CBT Medical Training Program

David-Tuller-906x1024

    By David Tuller, DrPH In early 2019, I wrote about an awful online training course for general practitioners on recognizing and caring for patients diagnosed with what was referred to as CFS/ME. The module, called METRIC, promised to provide “GPs and other primary care practitioners with an overview of the presentation, diagnosis, assessment and ongoing […]

Study Suggests Energy Production Problems May Be Everywhere In Chronic Fatigue Syndrome (ME/CFS)

Fatigue

By Cort Johnson in Health Rising.   As time has gone on, the energy production issue in chronic fatigue syndrome (ME/CFS) has become better and better documented as researchers take different slants on it. Take the whole body energy production tests. Workwell’s two day cardiopulmonary exercise tests (CPETs) have documented the damaging effects that exercise one day […]

Deep phenotyping of myalgic encephalomyelitis/chronic fatigue syndrome in Japanese population

Research

  By Toshimori Kitami et al in Nature.   Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating disease with no molecular diagnostics and no treatment options. To identify potential markers of this illness, we profiled 48 patients and 52 controls for standard laboratory tests, plasma metabolomics, blood immuno-phenotyping and transcriptomics, and fecal microbiome analysis. […]

First In Our Superhero Series : The Whitney

Whitnet Dafoe

    Written by Di in Stanford Wood Studio.   Di has had a fascination with beautiful handmade items all her life and always had a yen to try making some herself, yet forever found herself putting it off. She got to the stage where she thought, if not now; when? And that’s how she […]

Controversial Study On ME-Patients Receives Ethical Approval

Lightning

By MElivit.   On November 10th 2020, English health authorities published a draft of a new set of guidelines for ME/CFS. It is confirmed that ME is a physiological disease, and it is advised against therapy and exercise as treatment. It is especially warned against the Lightning Process (LP). Read more here: English health authorities reject […]

News In Brief – November 2020

News

  From Science For ME.   This thread has a Science for ME ‘News in Brief’ post for each week in November 2020 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week’s news. Week beginning 2nd November 2020 News, articles, videos UK NICE ME/CFS guideline The draft guideline is due to be published on […]

Montreal Researchers Make Chronic Fatigue Syndrome Discovery

Blood Test

  By Jean-Benoit Legault  The Canadian Press. A discovery by Montreal researchers is expected to improve the diagnosis and treatment of patients with myalgic encephalomyelitis (ME), better known as chronic fatigue syndrome. In most instances, ME is currently diagnosed by elimination, as doctors put aside other possible causes of the patient’s symptoms. But researchers from the University […]

Important News From Jennifer Brea

MEAction_WebLogo-50_

  From #MEAction.   Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a […]

Could This Actually Be Happening ?

mecfs-tagcloud

      By Brian Hughes In The Science Bit.   Mark this day in your calendar. We could be observing the beginning of the end of a decades-long medical scandal. In the UK, the National Institute for Health and Care Excellence (NICE) have published new draft guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome”. […]

A Never-Ending Immune Battle In ME/CFS ? The Regulatory T-cell / Herpesvirus Hypothesis

Blood Cells

By Cort Johnson in Simmaron Research. The failed Rituximab trial might seem like the death knell for autoimmunity in chronic fatigue syndrome (ME/CFS) but it’s not – not by a long shot. While the B-cells that Rituximab targeted are at the heart of much autoimmunity, T-cells can also cause autoimmune diseases. They also play a […]

Starving for Energy ? And The Immune Hole That Produced ME/CFS ?- The IACFS/ME Conference Reports Pt. II

Nervous System

By Cort Johnson in Health Rising.   The Immune Hole That Produced ME/CFS? (and who knows – maybe long-hauling as well) Somehow Lenny Jason got a hold of some recovery data from the 1918 flu! The data suggested that 20% of those affected may not have fully recovered, and fatigue was one of the most […]

Open Medicine Foundation Australia

Emerge

From Emerge Australia.   Established in October 2020, Open Medicine Foundation Australia (OMF Australia) is an Australian foundation set up to support biomedical research through the establishment of a new ME/CFS collaborative research centre in Australia. OMF Australia was founded by Emerge Australia in partnership with the Open Medicine Foundation, meaning that Australia is now […]

‘I Very Quickly Went Downhill’: Casey Stoner Opens Up On Chronic Fatigue Syndrome Battle

OIP (7)

  By Marc Churches from Australian Motor Sports.   Australian MotoGP legend Casey Stoner has opened up on his health issues as he continues to battle with Chronic Fatigue Syndrome (ME/CFS). The two-time MotoGP World Champion revealed last year that he had been diagnosed with the debilitating illness, which impacts on sleep, causes profound fatigue […]

I Have A Chronic Illness. I Know What The COVID-19 Long-Haulers Are Going Through

Lost

Nadine Sander-Green in The Globe and Mail. By the time I reached my early thirties, I had climbed one of the world’s highest volcanoes in Ecuador, won an arm-wrestling contest in Dawson City and trekked through the Himalayas for a month straight. All I had to do was ask my body to do something, and […]

The Art & Science Of Pacing For M.E.

Pacing

  From M.E. Awareness New Zealand.   PACING “to avoid doing something too quickly or doing too much at one time, so that you have enough energy left to complete an activity” — PACING – MACMILLAN DICTIONARY This dictionary definition is a good starting point for understanding Pacing for ME. In a nutshell, Pacing for […]

NHMRC Grant Boosts ME/CFS Research

Funding

  By Deborah Marshall in Griffith News. The National Centre for Neuroimmunology and Emerging Diseases (NCNED) has been awarded $1.46 million in National Health and Medical Research Council funding for research into myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Part of Griffith University’s Menzies Health Institute Queensland , the centre’s researchers will investigate potential diagnostic tests as well as suitable […]

Trial By Error: NICE Draft Guidance On ME/CFS Coming Next Month

NICE logo

By David Tuller, DrPH *October is crowdfunding month at Berkeley. I conduct this project as a senior fellow in public health and journalism and the university’s Center for Global Public Health. If you would like to support the project, here’s the place: https://crowdfund.berkeley.edu/project/22602 The pandemic has played havoc with everything, including the timeline of the development […]

Celebrating Whitney Dafoe And His “Awakening” On His 37th Birthday

Whitney-birthday

By Cort Johnson in Health Rising.   It’s Whitney Dafoe’s 37th birthday. He’s had chronic fatigue syndrome (ME/CFS) since 2004 and has been severely ill since about 2012. Fed by feeding tubes, eyes and ears covered, too weak to move, unable to speak or tolerate almost any stimuli. Whitney has hovered in a kind of […]

Health And Wellbeing Survey 2019

Emerge

    From Emerge Australia.   Emerge Australia conducted a second Health and Wellbeing Survey of people living with myalgic encephalomyelitis/ chronic fatigue syndrome (ME/CFS) in 2019. An impressive 1,055 participants from around Australia answered 60 questions covering demographics, caring responsibilities, ME/CFS onset and symptom experience, access to healthcare and other services, and the effect […]

The York ME Community © 2015
Powered by Live Score & Live Score App