Invisible / Chronic Illness

I Already Have A Job… Getting Through The Day

From Chronic Illness Inclusion. Our latest Report The ‘I already have a job…’ report, by Chronic Illness Inclusion and Leeds University Business School, sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs). Although one-in-three disabled people of working age experiences problems […]

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 […]

Living With ME/CFS: The Debilitating, Invisible Illness Stealing Women’s Energy

By Lauren Clark in Women’s Health. Gym at 6.30am followed by a G&T 12 hours later. For women who want to live life at their optimum, energy is currency. So, when an illness strikes that robs you of it, you’re left feeling not only devastated, but invisible, too. Here, one writer shares how witnessing up […]

My M.E. Storm

MY M.E. STORM I can feel the storm clouds formingAll around my headI should have stopped my ‘doing’And rested more instead. The soft patter of the raindropsThat turn into a thudMy mind then slows as the downpour growsTurning every thought to mud. My scrambled brainIs like thundering rainI cower from the merest lightLike a laser […]

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 […]

News In Brief – May 2021

From Science For ME. This thread has a Science for ME ‘News in Brief’ post for each week in May 2021 written by a team including @Trish and @Kalliope. Scroll down to see this week’s news. To read all, click on the link below:

Millions Missing

Millions Missing Tommy missing from the five a sidesA different postman todayJenny not out, not seen her aboutMaybe she’s just gone away No Mary at the BingoCharlie, where is that guy?Rang the teacher, couldn’t reach herDidn’t think to wonder why Jack from the pubHayley down at the clubMy barber’s missing tooWhat’s going on, where have […]

Damaged Small Nerve Fibers May Be Causing Energy Problems In Chronic Fatigue Syndrome (ME/CFS)

By Cort Johnson in Health Rising. David Systrom, the Harvard pulmonologist, is digging ever deeper into his ME/CFS patients. Systrom and his invasive exercise tests have broke open our understanding of what’s going on during exercise. Through Systrom’s work, we now know much more about what’s going on, metabolically, during exercise. In “Insights From Invasive […]

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 […]

Trial By Error: My Letters To Psychosomatics Journal About Prof White’s Misleading GETSET Paper

By David Tuller, DrPH In early April, I wrote about a study published in the Journal of Psychosomatic Research—a one-year follow-up of the GETSET trial of self-help graded exercise therapy for ME/CFS. The investigators had previously reported short-term benefits for the intervention. In this new paper, despite no benefits of the intervention over regular care, the team reported success […]

Continuing Pressure On NHS To Vaccinate People With ME In Light Of Survey Results

From #MEAction. As reported last week, the preliminary findings from the joint survey between #MEAction and Action for M.E demonstrated that most respondents with ME experienced an exacerbation of their underlying disease and  prolonged illness from Covid-19 itself. The survey is still live for people who with ME who have had Covid-19 to take part. To read the rest […]

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 […]

Behind The Scenes At NICE: The Justification For Further Delay To The ME/CFS Guideline Publication Date

By Dom Salisbury. On March 29, the National Institute for Health and Care Excellence (NICE) announced that the expected publication date for the revised guideline for ME/CFS had been pushed back from 21 April 2021 to 18 August 2021 “because of the large number of comments received during consultation on the ME/CFS guideline, and the additional work […]

In The Balance. Immune-System Research In ME/CFS Part 2

Here is the second part of Dr Eleanor Roberts’ article looking at ways in which the immune system may be disrupted in ME/CFS. Click here for part 1, and click here for Eleanor’s introduction to the immune system. ‘Leaky gut’ For some people with ME/CFS, their symptoms may be due to changes in the different species of […]

Help The Millions Missing

Help The Millions Missing Have you heard of the Millions MissingHave you heard the newsSurely they’ve been on the radioLooking for any clues Have you heard of the Millions MissingPeople just gone amissNo longer turning up for workGone down some abyss Have you heard of the Millions MissingIt’s not something they’d suppressYou can’t have people […]

Understanding Muscle Dysfunction In Chronic Fatigue Syndrome

By Gina Rutherford, Philip Manning, and Julia L. Newton. Abstract Introduction. Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a debilitating disorder of unknown aetiology, characterised by severe disabling fatigue in the absence of alternative diagnosis. Historically, there has been a tendency to draw psychological explanations for the origin of fatigue; however, this model is at odds […]

Trial By Error: In Guardian Column, Professor Pariante Parrots Standard Biopsychosocial Nonsense

By David Tuller, DrPH On Tuesday (four days ago), The Guardian published an opinion piece from Professor Carmine Pariante titled “Long Covid is very far from ‘all in the mind’–but psychology can still help us to treat it.” The article is the latest from a member of the biopsychosocial ideological brigades to demonstrate what has long been […]

Slow-Onset ME

From Gwenfar’s Garden and other musings. This article was first published in the ME Association’s ME Essential magazine, Spring 2021, pages 32-33. Slow onset ME. You’ve probably never heard of it. It’s mentioned here and there, and on the ME Association website, but there are no explanatory leaflets or research articles. This isn’t anybody’s fault. It’s just that this […]

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 […]

It’s Not Your Fault

By Whitney Dafoe. think at some level we all blame ourselves for the symptoms and consequences of ME/CFS. Even if you truly know and believe it is a real physical illness I think in the back of all our minds there’s a little voice that tells us we could be doing better if we tried […]

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