ME Symptoms

Learning To Rest – We’ll Talk About Pacing Next Time

restless-leg-syndrome

From Lifechangeswithme. What is Pacing? Rest? Unfortunately with ME there isn’t one magic pill or treatment to help us get better – less ethical individuals may claim there is.  Such is the nature of an illness where individuals with similar symptoms yet unknown causes are grouped together with the term “Chronic Fatigue Syndrome, Post-Viral Fatigue and ME.”  […]

The Guilt Of ME

Writing Poetry

  The Guilt of ME When the beast descends we know the score Strength and hope go through the floor We’ve all been on this road before Another day of guilt Want to take my part in life Want to spend some time with wife Want to cause no further strife Another day of guilt […]

Trial By Error: FITNET-NHS Falls Short In Recruitment Drive

David Tuller

  By David Tuller, DrPH Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and star researcher, has weighed in with an interim analysis of FITNET-NHS, her trial of online cognitive behavior therapy for adolescents with what she calls CFS/ME. Poor Professor Crawley! Despite her ambitious goal of enrolling a whopping 734 participants, early […]

Meet The Scientist: Professor Chris Ponting – DecodeME

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By Dylan Murphy, Guest Blogger, ME Association. Professor Chris Ponting is Chair of Medical Bioinformatics at Edinburgh University and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine. His research group has made substantial contributions to protein science, evolutionary biology, genetics, and genomics. He has served on the editorial boards of […]

Are COVID-19 Studies Already Providing Clues For ME/CFS And The Long Haulers ?

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By Cort Johnson in Health Rising.   Could COVID-19  studies already be providing clues about what went wrong with the long haulers and people with post-infectious chronic fatigue syndrome (ME/CFS), fibromyalgia and other diseases? Two articles in the New York Times – a feature length one, “How Covid Sends Some Bodies to War With Themselves“, […]

Leaving Frailty Behind – A Conversation With Laura Hillenbrand

Laura Hillenbrand

  From Stanford Medicine.   She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, published in 2010, […]

Infographic: What Is ME/CFS ?

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By Katarina Zimmer in The Scientist.   The COVID-19 pandemic is sparking renewed efforts to study the underlying causes of this complex, debilitating disease, which might be triggered by the novel coronavirus.   People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a chronic, debilitating fatigue that can leave them unable to maintain a job or […]

Trial By Error: More CBT Research From Sir Simon And Professor Chalder

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  By David Tuller, DrPH (*Thanks to the the very informed discussion–and discussants–on the Science For ME forum for alerting me to this study and its many problems!) In 2011, Professor Trudie Chalder declared at a press conference for the high-profile PACE trial that twice as many chronic fatigue syndrome patients who received cognitive behavior therapy and […]

Bedbound Midlands Singer Releases Debut Album – And Is Forward Of Taylor Swift In Chart

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  By  Ryan Holmes in Matza Review. A singer who has ME has launched her debut album, after spending two years recording it whereas bedbound, with it presently quantity two within the Amazon Best Sellers chart forward of Taylor Swift. Kara Jane Spencer, 29, from Shirebrook, Derbs., was recognized with the debilitating situation when she was simply […]

Purely Pacing

Jacques

By  Jennie Jaques. This is an article to assist patients with the long-haul symptoms following COVID-19. My article is likely most relevant to Long Covid sufferers in their ‘post-viral’ stage – i.e those who find themselves still battling the symptoms after 4 months. But the sooner the advice can be understood the better. We will […]

Welcome To Law And Health

Valerie Eliot-Smith

  By Valerie Eliot Smith in Law and Health.   “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019  ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]

The Roles Of Autoimmunity And Inflammation In Chronic Fatigue Syndrome

Chronic Pain

  By Adrienne Dellwo in Very Well Health.  You still hear that chronic fatigue syndrome (ME/CFS) is a “mystery illness,” but that viewpoint is becoming dated. The nature and mechanisms of the disease are beginning to take shape, thanks to the ongoing efforts of researchers. Over the years, especially recent ones, we’ve learned a huge amount. Some of that […]

Graded Exercise Therapy Dangers

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  From ME International.   Some of these links refer to ME/CFS as per the IOM which is a broad criteria encompassing many patients who may not have ME as defined by the ICC.  For choosing proper research candidates, the IC Primer states on page ii: “…the ICC [International Consensus Criteria] select patients who exhibit explicit multi-systemic […]

The Netherlands Is Set To Make A Huge Investment In Biomedical Research

Research

  By Simon McGrath in ME/CFS Research Review.   A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a €25m biomedical research programme. Patients are playing a central role in the process. The Dutch national health […]

Millions Missing

Millions Missing

  To help highlight those missing from their lives, this being Severe ME Awareness Week.   Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t […]

Post-Covid Syndrome, Myalgic Encephalomyelitis, And The Recurring Pseudoscience Of Mass Hysteria

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By Brian Hughes in The Science Bit. The people who want you to think that everything is “all in your mind” are back, their schtick now revised and updated for a COVID-19 world. Here’s the Daily Telegraph: Some local coronavirus outbreaks could be ‘mass hysteria’, Joint Biosecurity Centre warns Some local coronavirus outbreaks may just be mass […]

Covid-19 Could Lead To ‘Explosion’ In Tapanui Flu Cases

News

  From Star News.   In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied.Emeritus Prof Warren Tate (73), of the University of Otago biochemistry department, officially retired recently but is continuing his molecular-level research into […]

Drug Delivery Nanoparticles Given Neurotransmitter “Passports” To Cross Blood-Brain Barrier

brain-power

  From Genetic Engineering & Biotechnology News.   Biomedical engineers at Tufts University School of Engineering have developed tiny lipid-based nanoparticles that incorporate neurotransmitters, which can help to carry drugs, large molecules, and even gene editing proteins across the blood-brain barrier (BBB) and into the brain in mice. The researchers believe the new neurotransmitter-derived lipidoids—or […]

OMF Announces New “Brain Fog” Study

Brain Fog

  From the Open Medicine Foundation. Open Medicine Foundation (OMF) is excited to announce a new collaborative study between the ME/CFS Collaborative Research Center at Uppsala, Sweden and the Harvard ME/CFS Collaboration. This study focuses on biomarkers for long-term neurocognitive outcomes. It provides an excellent opportunity to understand the mechanism of long-lasting viral-induced cognitive complications, commonly referred to […]

Helen Salisbury: When Will We Be Well Again ?

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  By Helen Salisbury, GP in BMJ. Author affiliations helen.salisbury@phc.ox.ac.uk Follow Helen on Twitter: @HelenRSalisbury In the heat of the pandemic, news reports focused on patients who were severely ill, in hospital and on ventilators. Fortunately, this was a minority of patients, and most people with covid-19 remained at home—some of them horribly unwell but not […]

Coronavirus And ME: Doctors Fear Wave Of Chronic Fatigue Syndrome

COVID-19-Pandemic-min

  From The Week.   As the UK’s daily death tolls fall and the immediate threat of Covid-19 recedes, doctors are warning that the outbreak may lead to a long-term surge in cases of a debilitating and untreatable disease. Chronic fatigue syndrome, also known as myalgic encephalomyelitis or CFS/ME, is an “illness with a wide […]

Trial By Error: Disinformation About Treatments For Post-Covid Syndrome

David Tuller

    By David Tuller, DrPH Professor Trudie Chalder is a lead investigator of a series of studies of rehabilitative interventions for so-called “medically unexplained symptoms” that have failed to meet expectations but have nevertheless been promoted as demonstrating treatment success. The piece of crap known as the PACE trial is a prime example. Most famously, Professor […]

A Proteomics Study From The Center: Searching For The Criminal

research

By Dr. Anthony Komaroff in Center For Solutions For ME/CFS. On July 21, 2020, the results of a proteomics study by the Center for Solutions for ME/CFS was published by the journal PLoS ONE. Proteomics uses new technologies—that have become available in the last two decades—to precisely identify large numbers of proteins and measure their levels. The measurement […]

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