The York ME Community

Trial By Error: The CDC’s Stakeholder Meeting

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    By David Tuller, DrPH The US Centers for Disease Control held one of its occasional briefings for ME/CFS stakeholders last week. I was unfortunately busy during that time, but #MEAction has posted a useful account of what was discussed, which you can read here. The #MEAction account includes short, helpful descriptions of a number […]

DWP ‘Performs Partial U-turn’ Over DNS ‘Ban’ After Criticism From Campaigners

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  By John Pring in Disability News Service.   The Department for Work and Pensions (DWP) appears to have performed a partial U-turn after disabled campaigners reacted angrily to an apparent ban on media requests from Disability News Service (DNS). Last week, DNS reported how DWP’s press office had failed to provide a meaningful response […]

Is Ron Davis’s ME/CFS Collaborative Research Center At Stanford Poised For A Breakthrough ?

Ron Davis

    By Cort Johnson in Health Rising.   Ron Davis’s Stanford ME/CFS Collaborative Research Center is itching to get back to full-time lab work. It’s not that Davis and his group haven’t been working. Janet Dafoe described constant Zoom calls with ME/CFS researchers, a bevy of grant applications have been completed, put some researchers – with […]

Researchers Explore Clinical And Biological Aspects Of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Research Study

  Reviewed by Emily Henderson, B.Sc in News Medical Life Sciences.   One of the major symptoms of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is post-exertional malaise (PEM), the worsening of symptoms after physical or mental activities. Using their own words and experiences, people with ME/CFS described how debilitating PEM can be in a study in Frontiers in […]

The ME Association Flu Vaccine Information And Guidance For 2020 – 2021

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By Dr Charles Shepherd, Hon. Medical Adviser, ME Association. Each year we fully update the ME Association information and guidance on flu vaccination in relation to ME/CFS. We hope to publish the free 2020-2021 leaflet by early October – once flu vaccination programmes begin, and we have all the relevant information about the new vaccine. […]

Balancing Hope And Acceptance With A Chronic Illness

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  By Caroline Elizabeth in the Frozen Amber Blog.   Finding acceptance while holding on to hope with a chronic illness is like walking a tightrope, especially as the years grind on. Hope is a vital life force that propels us, whereas acceptance allows us to discover new ways of living within the moment. Clearly […]

Covid 19 Coronavirus: Kiwi Expert On Covid Survivors Affected By ME

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  By: John Gibb in the Otago Daily Times.   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 […]

Mestinon Trial Update

Research

  By Ronald G. Tompkins, MD, ScD Co-Director, The Harvard ME/CFS Collaboration in Open Medicine Foundation. In May, 2020, Open Medicine Foundation (OMF) announced the Mestinon Clinical Trial for ME / CFS, conducted at the Brigham & Women’s Hospital by Dr. David Systrom in association with the Harvard ME / CFS Collaboration at the Harvard Affiliated Hospitals. Background This study was […]

A Reminder To You

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  By Anna Redshaw in M.E. Myself and I.   No amount of willpower or positive thinking will rectify the faulty ATP production within your body. No amount of wishful thinking will suddenly see your likely-mitochondria-failure reversed. Please don’t let flippant remarks by others, or by articles written by those outside this community, about how […]

Understanding Long Covid: A Shortcut To Solving ME/CFS ?

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  By Simon McGrath in ME/CFS Research Review. Large numbers of people, around one in 10, don’t make a normal recovery from coronavirus but continue to be ill with “long covid”. The illness is likely to have several different causes, probably including ME/CFS. Post-exertional malaise appears to be a common symptom. Long covid patients have […]

Craniocervical Instability, Neurosurgery And M.E.: Just The Facts, Please – An Editorial By Jeff Wood

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  By Jeff Wood in Health Rising.   Jeff Wood’s remarkable recovery from severe ME/CFS following spinal surgery to correct craniocervical instability (CCI) and other problems shocked the ME/CFS community. It’s safe to say that almost no one saw that coming. Since then, others, including Jen Brea and Julie Rehmeyer, have been diagnosed and undergone […]

How The Modern World Was Shaped By Epidemics 500 Years Ago

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    By Matthew Ward in The Conversation.   The coronavirus pandemic has been compared with many previous contagions, including the great plague and the 1918 Spanish flu pandemic. However, there has been little consideration of probably the most significant historical episode of disease. The modern world as we know it would not have existed without the epidemics that […]

Disabled Peers Call On Government To Scrap Care Act Coronavirus Powers

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  By John Pring in Disability News Service.   Two disabled peers have called on the health and social care secretary to scrap powers given to local authorities that allow them to suspend some of their social care duties during the coronavirus pandemic. Crossbench peers Baroness [Jane] Campbell and Baroness [Tanni] Grey-Thompson have written to […]

DWP Silent As It Stops Answering Questions From Disability News Service

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  By John Pring in Disability News Service.   The Department for Work and Pensions (DWP) has stopped answering questions from Disability News Service (DNS), and is refusing to explain why it has taken the “totally unacceptable” step. Since early July, DWP’s press office has failed to provide a meaningful response to questions submitted by […]

Blue Badge Eligibility – Update September 2020

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  From Independent Living.   If you are a Blue Badge holder, and you have been struggling to find an unoccupied disabled parking bay, it is probably not surprising. According to data obtained from Freedom of Information requests made by confused.com, there are 38 badge holders per parking space… Since the welcome extension of Blue […]

The ME Association 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 ME Association: Index  Charlotte Stephens, Research Correspondent, ME Association We show […]

Long-Term Saline Use Improves Cardiovascular Functioning In ME/CFS: A Workwell Case Report

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    By Cort Johnson in Health Rising.   The exercise physiologists at the Workwell Foundation are pretty darn good at providing thought provoking case reports. A couple of years ago, a Workwell case report indicated that a very ill ME/CFS patient was able, using Workwell’s heart rate-based exercise program, to not just halt the steady decline […]

Dublin Mum Shares Warning Signs Of ME In Children After Daughter’s Diagnosis Aged Just 7

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  By Blathin De Paor in RSVP Live. (Should you wish to contact Paul O’Connell directly about this story, you can find him on Twitter: @PaulEOC). Chronic Fatigue Syndrome, is a condition many consider to be rare, but the reality is, it’s simply massively underdiagnosed. However, experts are seeing a huge spike in the number […]

Trial By Error: Some Stuff About Long-Covid, BMJ And ME

David Tuller

    By David Tuller, DrPH It is clear that there will be much grappling going forward over the similarities and differences between long-Covid and ME (or CFS, or ME/CFS, or whatever this illness or cluster of illnesses is being called). The two entities overlap in some ways, but no one should conflate them. We […]

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

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  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 […]

Stick With It…….

Writing Poetry

    STICK WITH IT….. In life we like to fit right in To mix in with the crowd Not to shout, not stand out Not to be too loud But sometimes things just come along That force us into change I’m talking Chronic Illness Making life so strange When M.E. hits, it hits you […]

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

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  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 […]

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