What Freedom Day Means To The Disabled

Helen Jones explains what ‘Freedom Day’ means for disabled people On so called ‘Freedom Day’, instead of celebratory dancing and drinking, many disabled people were reacting with horror and retreating back into a state of isolation. In fact, one in seven disabled people plan to keep shielding despite the lack of support available from the government to do […]

Long Covid Has Shed New Light On ME (Chronic Fatigue Syndrome), Once Disparagingly Dismissed As ‘Yuppie Flu’ – Professor Eleanor Riley

By Eleanor Riley in the Scotsman. Given the slim pickings of the last year, I am tempted to grasp at one wee sliver of silver in suggesting that the pandemic – specifically some aspects of “long Covid” – has shone a welcome light on the long misunderstood condition known as myalgic encephalitis/chronic fatigue syndrome (ME/CFS). Disparagingly […]

Honorary Fellows And DwME Leadership Cited, Highlighting The Medical Profession’s Move Towards Belief And Support

Doctors With ME in The Guardian. Doctors with M.E. Honorary Fellows and Leadership were quoted extensively in a recent article article about post-viral disease by Christina Frangou. Published in the Guardian, the article has been well received by experts in the field and is entitled“‘I felt betrayed’: how Covid research could help patients living with chronic fatigue […]

The York Access Hub

There’s a new website launching in York soon called the York Access Hub.  It will offer free advertising to York businesses including text, photos and a little information as to how accessible your business is to the disabled community. The idea is that it will be the one stop shop for visitors to York, either […]

The Importance Of Listening In Treating Invisible Illness And Long-Haul COVID-19

By Dorothy Wall MA in AMA Journal of Ethics. Abstract Primary and specialty care clinicians strive to base diagnoses and treatment on specific, measurable abnormalities. Yet those with invisible, controversial illnesses such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) often have symptoms not explained by standard laboratory values. For instance, one of the cardinal features of […]

‘I Felt Betrayed’: How Covid Research Could Help Patients Living With Chronic Fatigue Syndrome

By Christina Frangou in The Guardian. In the fall of 2016, Ashanti Daniel, a nurse in Beverly Hills, California, went to an infectious disease physician looking for answers about a weird illness she couldn’t shake. After falling sick with a virus four months earlier, she still felt too tired to stand up in the shower. The appointment […]

Chronically Ill And Disabled Workers Endure Regular Discrimination In UK Workplaces, Study Finds

By Natalie Morris in Metro. A new report has revealed the discrimination experienced by chronically ill and disabled people – who comprise 1 in 4 of the UK workforce. Around one in four people of working age are chronically ill or disabled, more than a third (38%) of these people say their health needs were […]

Is Long COVID Leading To A Tipping Point In Attitudes Toward Chronic Illness ?

By Sunshine Mugrabi in Rooted in Rights. Could long COVID spell the end of medical gaslighting? Let’s hope so. When Kathy Flaherty, a 53-year-old attorney and nonprofit executive director, got COVID-19 in March 2020, her friends said, “see you in two weeks.” Two weeks came and went, but she was no better. A former marathon runner, […]

MEA Letter Published By The Times Re: Why Is Britain The Long Covid Capital Of The World ?

From The ME Association. Following a disappointing article from Josh Glancy that appeared in The Times on 14 June, the ME Association and Dr Charles Shepherd have now had an edited version of their letter published this morning. We show both versions of the letter below: Published Letter to The Times 16 June 2021 Re: Why is […]

Problems In Defining Post-Exertional Malaise

By Leonard A. Jason, Meredyth Evans, […], and Abigail Brown in Journal of prevention & intervention in the community. Abstract Post-Exertional Malaise (PEM) is a cardinal symptom of the illnesses referred to as Myalgic Encephalomyelitis (ME), Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), and chronic fatigue syndrome (CFS). PEM is reported to occur in many of these […]

Experts Assert Insights From ME/CFS Needed To Understand Long COVID

By Cort Johnson in Health Rising. This is a journal article we’ve been needing. That long COVID is a real and serious problem has been established. Media articles frequently note the similarity between chronic fatigue syndrome (ME/CFS) and long COVID. Plus, Avindra Nath and the Long COVID Alliance have been beating the drum about ME/CFS and long […]

Department Of Health And Social Care – Must Do Better

By Sally Callow in mefoggydog.org Despite being extra unwell with Covid19/Long Covid myself, I have been beavering away in the background (as much as my weary M.E-slammed body would allow) to try and make ‘the powers that be’ as aware as possible that Covid19 had the potential to cause chronic illness in many people during […]

Can Long-Covid Be Cured With The Mind: Expert Patient Or Nutty Professor ?

By Dr Keith Geraghty on David F Marks site. I am a research fellow working from the University of Manchester Centre for Primary Care. A major focus of my work is on medically unexplained symptoms and illness. I promote evidence-based medicine and psychology, so like a detective, I spend a lot of my time discerning […]

Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To Chronic Fatigue Syndrome

By Brian Hughes, Steven Lubet and David Tuller in Health Affairs Blog. For decades, patients with chronic fatigue syndrome, the poorly understood illness also known as myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, have experienced neglect from the medical establishment and dismissal from society at large. In recent months, however, the condition has gained remarkable visibility, […]

Trial By Error: Journal Editorial Calls For Caution In Exercise-Based Rehab Programs For Long COVID

By David Tuller, DrPH The Journal of Orthopaedic & Sports Physical Therapy recently published an editorial called  “Humility and Acceptance: Working Within Our Limits With Long COVID and Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome.” The editorial emerged from a collaboration between rehabilitation specialists and patients, mostly from Canada. It confronts the conundrum of whether those experiencing what is called […]

Long COVID – We’ve Been Here Before

by Jennifer Trueland in BMA. Long COVID is a new condition, but those who have endured years of ME/CFS can share their common experience – and a long history of being misunderstood. When it was becoming clear that COVID-19 was a serious issue early last year, Nina Muirhead (pictured) had a strong suspicion about what […]

The Similarities Between Long Covid And Chronic Fatigue Syndrome

By Dr John Cillinan in RTE Brainstorm. Analysis: Myalgic encephalomyelitis (ME) has been routinely dismissed and misdiagnosed by medical professionals, and the similarities between it and long Covid could lead to a similar situation. May is ME awareness month, an international initiative to raise awareness of a much misunderstood, and often maligned, illness. ME, which […]

Symptoms Of Long-Covid “Like ME” Find Researchers

By Maja Grantham in Deadline. RESEARCHERS have discovered strong links between long Covid symptoms and those experience by Myalgic Encephalomyelitis (ME). sufferers. The effects of long Covid are now being realised around the world as around 10% of people who have covid 19 suffer from it. Some of those have ongoing organ problems, such as lung and heart […]

Adolescent And Young Adult ME/CFS After Confirmed Or Probable COVID-19

By Lindsay S. Petracek et al in Frontiers in Medicine. Introduction: Fatigue is a common acute symptom following SARS-CoV-2 infection (COVID-19). The presence of persistent fatigue and impaired daily physical and cognitive function has led to speculation that like SARS-CoV-1 infection, COVID-19 will be followed by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Methods and Results: We describe three […]

A Brief But Spectacular Take On Chronic Illness

The emergence of long COVID has drawn attention to poorly understood chronic illnesses. This week, over a thousand people living with those diseases signed up to meet virtually with members of Congress to push for more funding for chronic illnesses. Disability advocate Rivka Solomon gives us her Brief But Spectacular take on advocating for those […]

Open Letter To The NIH

From Body Politic. We write to you on behalf of Body Politic – a grassroots health justice organization at the forefront of the patient-led movement for Long COVID – with regards to the NIH’s funding for research into Long COVID. We were thrilled to learn of the NIH’s plan to investigate Long COVID and other […]

The Ending Suffering Project for ME/CFS, Fibromyalgia, Long COVID, and Allied Disorders

By Cort Johnson in Health Rising. Something new has become possible with the long-COVID funding. Long sought answers to ME/CFS are not a pipe dream anymore but appear achievable. They will, however, take some time to emerge. Yet many people are suffering now, and some may not make it until those answers emerge. What a […]

ME Association Statement on Exercise in ME/CFS and Long Covid

Russell Fleming, Content Manager, ME Association  The ME Association decided to issue this position statement on exercise and activity management in ME/CFS (and Long Covid) in light of recent discussions which have appeared on, for example, BBC Newsnight, and in the Guardian newspaper and that are continuing online. Please also read: ME Association Statement re: BBC […]

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