Invisible / Chronic Illness

Yet Another Global Health Crisis Awaits the World After The Coronavirus Pandemic

Health

  From Yahoo! News.   There is no end to the coronavirus pandemic in sight yet and the world is already staring at another health crisis: the Covid-19 aftermath. They call it the “post-Covid syndrome”. Post-Covid-19 analysis by top American scientific bodies the National Center for Biotechnology Information and the Centers for Disease Control and […]

‘Lockdown Is Basically What Having M.E/C.F.S Is Like’: An Interview With Sally Callow, Pt 1

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  By Paris Ali-Pilling inThe Star and Crescent.   Paris Ali-Pilling talks to Sally Callow in a two part series. In part one, Sally explains about the impact of the pandemic on her social enterprise. Sally is the founder of Stripy Lightbulb CIC and ME Foggy Dog, which offer training and aim to raise awareness about M.E/C.F.S. Interview transcribed by […]

Leeds Disabled Activist Campaigning Against Proposed Changes To Chronic Pain Treatment

Chronic Pain

  By Mark Lavery in the Yorkshire Evening Post.   A disabled activist  from Leeds who suffers from a  chronic pain condition is campaigning against major changes to the way patients like them are treated. Saba Mir, 28, of Woodhouse – who is non-binary – has suffered from ME for two years and is in severe and […]

Long-Term Effects Of Virus Shine A Light On Chronic Fatigue Sufferers

Australia

    By Sue Green in The Sydney Morning Herald. It would be utterly perverse to say I’m glad COVID-19 leaves some sufferers with long-term symptoms, including crippling fatigue. I wouldn’t wish that on anyone. But as one who has coped with that very thing along with chronic pain for more than a decade, I […]

The Government Has Failed ‘Spectacularly’ To Support Disabled People Returning To Work

Disability

  By Vicky Foxcroft MP in The House.   Two thirds of all Covid-19 deaths so far have been disabled people. The Government needs to ensure those who were shielding are not forced to go back to an unsafe workplace. Since the national shielding programme ended on the 1st of August, lots of people have […]

The Brain Fog In Chronic Fatigue Syndrome (ME/CFS) Plus Even Mini Tilt Table Tests Wrack The Severely Ill

Brain Fog

By Cort Johnson in Health Rising.   The two Dutch researchers, C. Linda van Campen and Frans Visser, and Peter Rowe from the U.S., have been on a tear recently. The Van Campen/Visser team (mostly with Peter Rowe) have published 6 ME/CFS studies thus far in 2020, one in 2019 and three in 2018. This […]

Makayla And Her Av1

Makayla

  From noisolation. Due to her ME, Makayla is not able to attend school full time. She was forced to give up her favourite sports and hobbies, which included dancing and swimming. Makayla has tried to combat the social isolation and loneliness she feels through interfaces such as Instagram, where she can make friends who […]

ME/CFS Economic Cost: $14.5B Each Year

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  By Eddie Ngaluafe in Griffith News.   Griffith University research has calculated the cost of the debilitating illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) at $14.5 billion each year in Australia. Professor Sonya Marshall-Gradisnik, co-director of the National Centre for Neuroimmunology and Emerging Diseases (NCNED), says the figure shows the significant economic toll on patients and the broader […]

Trial By Error: The Lightning Process Strikes Again

Lightning

  By David Tuller, DrPH The Lightning Process was founded more than two decades ago by Phil Parker, a British Tarot reader and specialist in auras and spiritual guides. The LP, as it is often called, could be described as “a neuro-physiological training programme based on self-coaching, concepts from Positive Psychology, Osteopathy and Neuro Linguistic Programming,” as […]

Low Brain Blood Flows And Orthostatic Intolerance Ubiquitous In Chronic Fatigue Syndrome (ME/CFS)

brain-power

By Cort Johnson in Health Rising.   Every once in a while a study comes along for which terms like “seminal” or “groundbreaking” seems appropriate. The 2020 Van Campen/Rowe/Visser study, “Cerebral blood flow is reduced in ME/CFS during head-up tilt testing even in the absence of hypotension or tachycardia: A quantitative, controlled study using Doppler […]

Forward ME Letter Re: Post-Covid/ME/CFS Management With Caution About Exercise

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  By Russell Fleming, Content Manager, ME Association The following letter has been produced by the Countess of Mar and members of Forward ME which is a collaboration of M.E. charities that includes the ME Association. It has been used by, for example, Physios 4 ME, when encountering guidance from other organisations that has raised […]

Celtic Great Davie Provan On Struggling To Cope When ME Ended His Career At 29

OIP (4)

  By Aidan Smith in the Scotsman. Some good things have come out of Covid. Bluer skies, clearer waters, families round the dinner table, a deeper appreciation of the NHS and also schoolteachers. Doubtless you’ll be able to think of 
others and today Davie Provan nominates one that’s close to his heart. “There’s a whole lot more […]

OMF Scientist Receives Grant Funding For ME/CFS Study

research

  From The Open Medicine Foundation.   Open Medicine Foundation (OMF) is thrilled to share that our staff science liaison, Christopher W. Armstrong, PhD, has been awarded a grant to further his research into the relationship between the altered metabolism of nitrogen and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The research will be completed at the ME/CFS Collaborative […]

Signs Of Intracranial Hypertension, Hypermobility, And Craniocervical Obstructions In Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Brain anatomy  - cross section

By Bjorn Bragee et al in Frontiers in Neurology.   The pathophysiology of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is unknown. In this study, we test the hypothesis that hyper-mobility, signs of intracranial hypertension (IH), and craniocervical obstructions may be over represented in patients with ME/CFS and thereby explain many of the symptoms.   Our study […]

How COVID-19 Could Reveal The Secrets Of Chronic Fatigue Syndrome

Fatigue

By David J Craig in Columbia Magazine.   Physicians have seen it before: in the aftermath of a viral epidemic, survivors complain of a crushing lethargy, mental fogginess, sleep difficulty, and muscle pain. Many are eventually diagnosed with myalgic encephalomyelitis, also called chronic fatigue syndrome (ME/CFS), a poorly understood condition that has no FDA-approved treatment and […]

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 York Disability Rights Forum

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  At the request of York Independent Living Network, we’re supporting the development of a disabled person-led forum for anyone living or working in York who identifies as disabled or as having a disability. We aim to ensure that the Forum is led by, and open to, people and allies from right across a range of […]

Why We Need More Diversity At The Top

Disability Dice

  From Disability Horizons. Diversity and inclusion are as important today – and often lacking – as they have ever been. The recent Black Lives Matter campaign and annual LGBT Pride month were a reminder that many people from different walks of life still don’t have a voice. Disability Horizons was created with this in mind, […]

Dr Tedros (WHO) To Contact Dr Ron Davis On M.E.

Ron Davis

  The Director General of the World Health Organisation is aiming to contact Dr Ron Davis, a Scientist and ME Researcher who really knows about ME as his son’s life has been totally destroyed by it. Maybe we’re getting somewhere at long last.

UK Charity Invest In ME Research Pledges £625,000 For Research Into ME In Norwich Research Park

invest

From Norwich Research Park. UK Charity Invest in ME Research is awarding £625,000 for continued research into the disease myalgic encephalomyelitis (ME or ME/CFS), including a clinicial trial at the Quadram Institute. This major investment is an increase of the charity’s previous pledge of £500,000 that was announced in late 2019. This research builds on […]

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 […]

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