The York ME Community

‘Full-Up’ Signs In Place As Medical Students Let Us Unpack The Mysteries Of ME/CFS

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  From The ME Association. This is a recording of a virtual educational meeting called ‘Demystifying ME/CFS’ which was held on Thursday, 14 January 2021. It was organised for doctors, other health professionals and medical students by students who run the Cambridge University General Practice Society. People with ME/CFS were also invited to attend.   To watch […]

Trial By Error: New Study Reports First-Hand Accounts Of 1955 Hospital Outbreak

David Tuller

  By David Tuller, DrPH The name myalgic encephalomyelitis is inextricably linked with an outbreak of what appeared by all accounts to be a viral illness at London’s Royal Free Hospital in the second half of 1955. More than 200 people, most of them female staff and students, fell ill. Some reported long-term complications. Although no pathogen […]

M.E. Referenced In House Of Commons Long Covid Debate

Parliament

  From Action For M.E. January 15, 2021 A Long Covid debate was held yesterday in the House of Commons during which MPs highlighted M.E. and called for lessons to be learned from the illness when treating Long Covid patients. We’ve summarised some key points from the debate below: Layla Moran MP highlighted that there are an […]

Chronic Fatigue Syndrome (Myalgic encephalomyelitis)

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  From The British Medical Journal.   Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) can be distinguished from medical and psychiatric conditions in the differential diagnosis of fatigue by the presence of debilitating fatigue for more than 6 months; combinations of cognitive dysfunction, total body pain, and unrefreshing sleep that does not restore normal function; and postexertional […]

Accessibility And Disability: Changes I’d Like To See In 2021 And Beyond

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  From the Life Of A Blind Girl Blog. My first blog post of the new year would usually consist of me sharing some of my goals for the upcoming year.  like many others, I’m taking this year one step at a time; I’m not setting myself any strict goals, I’m focusing on myself and […]

Solve M.E. Covid-19 And ME/CFS Information Center

SolveMECFS

  Welcome to Solve M.E.’s COVID-19 information hub. This information center is designed to provide the most current COVID-19 information for people with ME/CFS, health care providers, and people with questions about the emerging connections between COVID-19 and ME/CFS. New data is published frequently. Please check back for updates.   To read more, click on […]

M.E. Charity Statement On The Covid Vaccine, 12th January 2021

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  “ M.E. charity statement on the Covid vaccine, 12th January 2021 We are receiving a very high number of enquiries from people with M.E. asking if they should have the Covid-19 vaccine, and when they should expect to be offered it. The 25% M.E. Group, Action for M.E. and the ME Association have collaborated […]

Inspirational Holly Moscrop Whose Life Was “Knocked Off” Her Planned Path Finds A New Way To Follow Her Dreams Of Farming

News

  By Sophie McCandlish in The Yorkshire Post. Over the past five years Lincoln Red cows have become a feature at Stockheld Grange Farm in Scholes. The move to this particular breed which saw Roger Moscrop buy three heifers and then a further five within a week was inspired by his 24-year-old daughter Holly. Holly, who suffers […]

New Clinical Trial To Test Whether Structured Exercise Benefits ‘Long Covid’ Patients

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  TO ALL WITH AN INTEREST IN LONG-COVID AND M.E. Warwick University have been given a £5m research grant from The National Institute of Health to undertake a: “New clinical trial to test whether structured exercise benefits ‘long Covid’ patients.” The link to the details are below. I have emailed their media centre with my […]

2020: Looking Back At A Year Of ME/CFS Research

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  By ME/CFS Skeptic. 2020 was an exceptional year in many ways. The coronavirus pandemic swept across the world causing more than a million deaths and forcing most developed nations into lockdown. Although COVID-19 brought havoc and despair, it also renewed scientific interest in postviral syndromes and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Hopefully, this will […]

Disabled People Highlight Scores Of Lockdown Concerns

Disability

  By John Pring in Disability News Service. Disabled people have highlighted gaps in social security support, flaws in the shielding system and worries about access to vaccines, after they were asked to describe their concerns as England entered its third national coronavirus lockdown*. They raised scores of different issues, ranging from worries about the accessibility […]

ME Association Writes To Chief Medical Officer About Vaccine

Vaccination

From The ME Association. The ME Association has written to Professor Chris Whitty, Chief Medical Officer, and the Joint Committee on Vaccination and Immunisation, to seek clarification on COVID-19 vaccine priority for people with ME/CFS Dear Professor Whitty and the Joint Committee on Vaccination and Immunisation, The ME Association is starting to hear from people […]

New Disability And Access Ambassadors To Support Rights Of Disabled Consumers

Parliament

From: Disability Unit and Justin Tomlinson MP in Gov.uk. The Cabinet Office, on behalf of the Minister for Disabled People, Health and Work, is seeking fourteen new Disability  and Access Ambassadors to help to ensure businesses are doing all they can to support their disabled customers. They will join existing Ambassadors who have been helping industry and the Government […]

A Doctor With Long-Covid Finds Out The Downside Of Graded Exercise Therapy

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  By Jerome Burne for the Daily Mail.   As they’re told to exercise despite crippling fatigue, and advised they should banish ‘negative thoughts’…No wonder doctors think their long Covid treatment is misguided. Professor Brendan Delaney developed a mild case of Covid just before the first lockdown in March, suffering the now- familiar symptoms of a cough, […]

The Evidence Base For Physiotherapy In Myalgic Encephalomyelitis/Chronic Fatigue Syndrome When Considering Post-Exertional Malaise: A Systematic Review And Narrative Synthesis

Research

  By Marjon E. A. Wormgoor and Sanne C. Rodenburg in the Journal of Translational Medicine. Abstract Background Due to the inconsistent use of diagnostic criteria in myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), it is unsure whether physiotherapeutic management regarded effective in ME/CFS is appropriate for patients diagnosed with criteria that consider post-exertional malaise (PEM) as a hallmark feature. […]

Trial By Error: Psych Issues Do Not Predict ME/CFS, New Chicago Study Shows

David Tuller

    By David Tuller, DrPH. For decades, investigators have argued over the causes of the illness or cluster of illnesses variously called myalgic encephalomyelitis (ME), chronic fatigue syndrome (CFS),  ME/CFS, CFS/ME and other names. In the absence of an adequate explanation for the debilitating symptoms, a flawed approach to intervention based on the perceived […]

A Geneticist’s Quest To Understand His Son’s Mysterious Disease

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By Tracie White in The Scientist. Ronald Davis of Stanford University changed his focus to research on ME/CFS, the disease formerly known as chronic fatigue syndrome, in a bid to help his son and others like him.   About 10 years ago, Stanford University genomicist Ronald W. Davis began a new investigation into a mysterious […]

A Literature Review Of GP Knowledge And Understanding Of ME/CFS: A Report From The Socioeconomic Working Group Of The European Network On ME/CFS (EUROMENE)

Pub Med

  By Derek F H Pheby et al in Pubmed. Abstract Background and Objectives: The socioeconomic working group of the European myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Research Network (EUROMENE) has conducted a review of the literature pertaining to GPs’ knowledge and understanding of ME/CFS; Materials and Methods: A MEDLINE search was carried out.   The papers identified were reviewed […]

When Dr. Peter Rowe Speaks – We Should Listen: Dr. Rowe On ME/CFS At The Dysautonomia International Zoom Conference

Cort Johnson

  By Cort Johnson in Health Rising. A riff on Dr. Peter Rowe’s presentation at the 2020 Dysautonomia International Conference (note that I expand on many of Rowe’s points; i.e. not all the words are his.) Lauren Stiles, the founder of Dysautonomia International, has long believed that the chronic fatigue syndrome (ME/CFS) and dysautonomia fields […]

COVID-19 Vaccine Eligibility, Safety And ME/CFS – What We Know So Far

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Dr Charles Shepherd, Medical Adviser, ME Association With the start of vaccination against COVID-19 occurring this week, we are receiving queries about where people with ME/CFS will be on the priority list. The Joint Committee on Vaccination and Immunisation (JCVI) has produced a list of different groups of people in the order that they are […]

Why We Need To Get Creative When It Comes To Talking About Pain

Chronic Pain

  By Jasmine Hearn and Stella Bullo in The Conversation.   What [do] I mean by sitting in a pit of fire? You’ve got every nerve ending that’s just going hellfire, and you just don’t know what to do with yourself. Forty-two year old Emma has experienced chronic pain from a spinal cord injury for […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Organic Disease Or Psychosomatic Illness ? A Re-Examination Of The Royal Free Epidemic Of 1955

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  By Rosemary Underhill and Rosemarie Baillod in MDPI.   Abstract Background and Objectives: Controversy exists over whether myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is an organic disease or a psychosomatic illness. ME/CFS usually occurs as sporadic cases, but epidemics (outbreaks) have occurred worldwide. Myalgic encephalomyelitis was named to describe an outbreak affecting the lymphatic, muscular, and nervous systems that closed […]

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