Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

Department Of Health And Social Care – Must Do Better

By Sally Callow in 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 […]

Deconditioning Does Not Explain Orthostatic Intolerance In ME/CFS (Myalgic Encephalomyelitis/Ehronic Fatigue Syndrome)

From the Journal of Translational Medicine. Abstract Background Orthostatic intolerance (OI) is a frequent finding in individuals with myalgic encephalomyelitis /chronic fatigue syndrome (ME/CFS). Published studies have proposed that deconditioning is an important pathophysiological mechanism in various forms of OI, including postural orthostatic tachycardia syndrome (POTS), however conflicting opinions exist. Deconditioning can be classified objectively […]

Chronic Fatigue Syndrome Classified Under Neurological Disorder In SNOMED CT International Edition

from DX Revision Watch. SNOMED CT is a standardized electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings. Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read […]

Research: Medical School Education On Myalgic Encephalomyelitis By Dr Nina Muirhead

From The ME Association. Overview Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex multi-system disease with a significant impact on the quality of life of patients and their families, yet the majority of ME/CFS patients go unrecognised or undiagnosed. For two decades, the medical education establishment in the UK has been challenged to remedy these […]

Trial By Error: Norway Rejects New Clinical Trial Of Woo-Woo Lightning Process

By David Tuller, DrPH In a welcome display of scientific acumen, Norwegian research ethics authorities have rejected a proposed study of the woo-woo called the Lightning Process as a treatment for ME/CFS. Since Norway generally appears to be a hotbed of biopsychosocial thinking, this excellent decision is a bit of a surprise. It follows a heated public […]

What Long-Term Follow-Up Data Tell Us About The Evidence On GET And CBT

From ME/CFS Skeptic. After years of waiting, the long-term follow-up results of the GETSET study have finally been published. The control group that received no intervention did just as well as the group that received guided graded exercise self-help. This isn’t the first time that the control group catches up over time. A similar pattern […]

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 […]

CDC Releases Flawed Review Of ME/CFS Treatments For Public Comment

From #MEAction. On May 16th the U.S. Centers for Disease Control and Prevention (CDC) published a notice of request for public comments on its systematic review draft report for diagnosis and treatment of ME/CFS which will remain open until August 16, 2021.  You might not realize it from the above description, but this is the latest milestone in […]

CHROME Study Seeks Diagnostic Biomarkers For ME/CFS

By Cort Johnson in Health Rising. A study seeking to uncover a diagnostic biomarker for chronic fatigue syndrome (ME/CFS) that you can participate in from your home?  That was unexpected. I had never heard of Dxterity or the CHROME (CHRonic fatigue syndrOME) study until a couple of days ago. The company – a biological diagnostic company based in Los […]

Open Letters To Healthcare Professionals From People With ME/CFS – Part 4 Lianne

From The ME Association. Against the background of a new NICE Clinical Guideline for ME/CFS (18 August 2021), which has the potential to improve healthcare provision for people with this condition, we have been focusing on health and social care and asking about your recent experiences, what it is you want from the NHS and […]

‘My Daughter, 21, Who Died Weighing Five-And-A-Half Stone, Had ME On Her Death Certificate – Yet Some Still Say It’s Not Real’

By Claudia Tanner in iNews. Clare Norton struggles to talk about the day her “beautiful” and “energetic” daughter took her last breaths just days after her 21st birthday. As a mother, she’d felt helpless as she watched Merryn’s agonising six-year fight with severe myalgic encephalomyelitis, known as ME. The disease had left her bed-bound for the […]

Time For Change In ME Research ?

I’m reading in social media that those with ME are being asked what research they would like to see done. Really ? What’s researched should be left to the experts, but with coordination so that there’s no duplication of research effort and waste of precious funds. What we need is a proactive, combined national ME […]

Hand Grip Strength And Fatigability: Correlation With Clinical Parameters And Diagnostic Suitability In ME/CFS

By Bianka Jäkel et al in Journal of Transational Medicine. Abstract Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a complex and debilitating disease accompanied by muscular fatigue and pain. A functional measure to assess muscle fatigability of ME/CFS patients is, however, not established in clinical routine. The aim of this study is to evaluate by […]

It’s Not You, It’s M.E.

It’s Not You, It’s M.E. When we first started outWide eyed at the coming yearsWe were so strongWe just bowled alongNo worries, no cares, no fears. Now times have changedWe’re growing apartBody and soulIt’s breaking my heart It’s such a sad fact,You no longer reactTo what I want to doYou don’t hear my wordsIt’s just […]

M.E. And My List

M.E. And My List The eyes they slowly openA restless night behindSleep didn’t want to come my wayTo rest my buzzing mind I gently rise to find my feetHope the strength is there to greetMy legs like stilts, … feelingI fall,…… to stare up at the ceiling It’s gonna be another dayWhere M.E. has its […]

Promising New Low-Cost Treatment For CFS & Fibromyalgia

By: JACOB TEITELBAUM, MD in Vitality 101. A recent study by the Stanford University ME/CFS clinical practice is showing remarkable promise in treating chronic fatigue syndrome using the medication Abilify. At high doses, Abilify blocks the brain transmitter dopamine, and is used as an antipsychotic. But at extremely low doses it actually augments dopamine function. It’s reminiscent of […]

Viruses And M.E. – Research Call

From ME Research UK. To coincide with International ME Awareness Day 2021 (12th May), ME Research UK with the financial support of The Gordon Parish Charitable Trust (SCIO Charity no SC045752) announced a £400,000 joint initiative to fund biomedical research into the role of viruses in ME/CFS globally. The reserach Call has been highlighted in the press with […]

For Faster Progress In ME/CFS Research, Funders And Researchers Need To Treat Patients As Partners, Not Subjects

By Simon McGrath in ME/CFS Research Review. Publicly funded research aims to benefit patients and the best way to make sure it does is for researchers and funders to partner with patients. This will ensure research prioritises what matters to patients. It will lead to more effective research. And it will help ensure that research […]

The Guilt Of M.E.

The Guilt of M.E. When the beast descends we know the scoreStrength and hope go through the floorWe’ve all been on this road beforeAnother day of guilt Want to take my part in lifeWant to spend some time with wifeWant to cause no further strifeAnother day of guilt Said I’d try and meet with friendsMissed […]

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, […]

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 […]

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