Invisible / Chronic Illness

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 […]

The York ME TGA Inter-Company Fantasy Football League

Football

The York ME TGA Inter-Company Fantasy Football League   The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility.  This is to help raise awareness of the illness that affects around 250,00 people in the UK, and 800 to 1,000 people of all ages in the York area alone. Companies enjoyed […]

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 […]

Ritalin (Methylphenidate) For Chronic Fatigue Syndrome And Fibromyalgia

OIP (3)

  From Health Rising.   Ritalin Is… a central nervous system stimulant. Created in 1954, Ritalin has been in use for over sixty years. (Check out a History of Ritalin here). It was first FDA approved in 1955 to treat ‘hyperactivity’ and later was approved to treat attention deficit hyperactivity disorder (ADHD). Ritalin increases extracellular levels […]

Coronavirus: ‘Scandalous’ Silence Of Government’s Disability Unit As Thousands Die

Disability Parking

By John Pring in Disability News Service.   The government has been accused of a “totally reprehensible failure” after its new Disability Unit failed to make a single announcement in more than three months, while more than 20,000 disabled people were dying from COVID-19. The unit was set up last year to “break down the […]

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

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  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

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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 […]

Update: Post-Covid Fatigue, Post/Long-Covid Syndromes, And ME/CFS

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  By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. I am aware that some people with ME/CFS have a number of concerns about the amount of time and effort we are devoting to people with Post-COVID Fatigue and Post/Long-COVID Syndromes. In particular: — the possibility that people with post-COVID fatigue and post/long-COVID syndromes are […]

We’re 20 Percent Of America, And We’re Still Invisible

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  By Judith Heumann and John Wodatch in the New York Times. Ms. Heumann is a disability rights activist. Mr. Wodatch is a civil rights lawyer.   This month as the 30th anniversary of the Americans With Disabilities Act approached, we asked two prominent figures in the disability rights movement, Judy Heumann and John Wodatch, where they thought […]

The ME Association End Of Week Research Round-Up

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  By Charlotte Stephens, Research Correspondent, ME Association. We show below brief summaries of the research studies about ME/CFS that have been published in the last week, followed by the abstracts from those studies. All research relating to ME/CFS can be located in the Index of ME/CFS Published Research which is correct to the end of June […]

Covid And Chronic Fatigue: We Must Learn From ME Patients’ Suffering

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  By Danni Watts, Journalist. Content warning: Contains an image of an ME patient, at her request, which readers may find distressing. There are growing numbers of Covid-19 patients reporting ongoing symptoms, for some lasting months after the initial infection. The cluster of post-viral symptoms commonly includes extreme fatigue, brain fog and widespread pain. For ME patients this […]

An Open Letter To The COVID-19 Long Hauler Community From A Person With ME/CFS

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  By Cort Johnson in Health Rising. “If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the […]

Chronic Fatigue Syndrome May Hold Keys To Understanding Post-Covid Syndrome

Virus

By DAVID TULLER and STEVEN LUBET in Stat News. Some survivors of acute bouts of Covid-19 experience a range of persistent medical issues — some lasting for weeks, or even months — that include profound exhaustion, trouble thinking or remembering, muscle pain, headaches, and more. One survivor described it as feeling like she was “hit by a truck.” Anthony Fauci, the […]

Trial By Error: Joan McParland’s Lightning Process Experience

Lightning

  by David Tuller, DrPH Aura-reader and Tarot expert Phil Parker, also known as the founder of the Lightning Process, has posted a video on YouTube of an “ME/CFS success story.” Without knowing anything about Amy’s situation or medical history beyond what she shares, I have no reason to disbelieve her testimony of recovery from […]

For ME/CFS Patients, Viral Immunities Come At A Devastating, Lifelong Cost

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by University of California – San Diego   Mylagic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. Affected persons often cannot pursue ordinary activities—physical or mental—because of an incapacitating loss of energy and other symptoms, and may find themselves confined to bed or house-bound for years. Anyone can develop ME/CFS, though it most commonly […]

COVID-19 Patients Could Be At Risk For Chronic Fatigue Syndrome: ‘Your Whole Life Can Change If You Get This’

Chronic

By Darcel Rockett in The Chicago Tribune. As the world continues to watch the number of COVID-19 cases increase (and daily records being broken), patients with myalgic encephalomyelitis, aka chronic fatigue syndrome, want to tell those recovering from coronavirus to listen up. COVID-19 patients may be at risk of developing the neuroimmune condition ME/CFS that depletes one’s energy. ME/CFS, […]

A Picture Of ME

Writing Poetry

  A Picture Of ME In my mind there is a picture That fades some more each day It shows how my life used to be Before M.E. came to stay A picture full of colour Of fun, of laughs, of life Not of where I am today Of worries, pain, of strife My picture […]

Changing Places Toilets For Disabled People To Be Compulsory

Changing Places

  From BBC News. Large accessible toilets for severely disabled people – known as Changing Places – will be made compulsory for new buildings in England from 2021. Shopping centres, supermarkets, sports and arts venues will be required to include at least one Changing Place, a government spokesman said. The facilities include hoists, changing benches […]

ME/CFS And Covid-19 Congressional Bill

ME Research UK

From ME Research UK.   In May, a Bill was introduced into the US Congress (H.R. 5057) by Representative Jaime Raskin calling for “the expansion, intensification, and coordination of the programs and activities of the National Institutes of Health with respect to post-viral chronic neuroimmune diseases, specifically myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), to support the […]

Could COVID-19 Trigger Chronic Disease In Some People ?

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  By Katarina Zimmer in The Scientist.   A handful of viruses have been associated with long-term, debilitating symptoms in a subset of those who become infected. Early signs hint that SARS-CoV-2 may do the same. When 32-year-old artist Hannah Davis fell sick in late March this year, her symptoms were so severe that even watching […]

Raising Awareness Of Severe ME – A Call For Your Case Studies

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      By Katie Meehan, Social Media Manager, The ME Association.  In the run-up to Severe M.E. Week (3rd August), we’re looking for people with Severe M.E. who would like to tell their stories. We want to talk about the key issues that affect arguably the most neglected section of our community, and plan on […]

Trial By Error: NICE On Exercise And Post-Covid Syndrome

David Tuller

  By David Tuller, DrPH. As post-covid syndrome has emerged as a major public health concern, so has the likelihood that members of the biopsychosocial ideological brigades will roll out their typical interventions for the “long-haulers”–patients suffering from profound exhaustion and other symptoms for many weeks and months after getting infected with the coronavirus. The […]

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