Firstly, let me just say that The York ME Community is not a charity. I will not be asking you to put your hands in your pockets for cash. What I believe we need so much more at the moment is awareness of the illness and for that we need people who are learning about ME and therefore able to tell others. There are ME charities, and if in the future you or your business wish to do a charity run or whatever in aid of ME, I will happily help and support that aim.
Dropping The Curtain On CFSAC
BY MEADVOCACY ADVISORY-COMMITTEE. The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002. Its purpose included advising and providing recommendations to the Secretary of Health and Human Services, through the […]
Cardiopulmonary Exercise Test Methodology For Assessing Exertion Intolerance In ME/CFS
By Staci Stevens et al. in ProHealth.com. Background: Concise methodological directions for administration of serial cardiopulmonary exercise testing (CPET) are needed for testing of patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Maximal CPET is used to evaluate the coordinated metabolic, muscular, respiratory and cardiac contributions to energy production in patients with ME/CFS. […]
I Am Not Alone With Myalgic Encephalomyelitis, But It Is Still Lonely
By Ali Kirby in The Mighty. There are many ways that chronic fatigue syndrome/myalgic encephalomyelitis(CFS/ME) has affected my life. I often find myself grieving for the life I used to have. I miss hiking and kayaking and basketball and diving under the waves at the beach. But, the thing I grieve most for is my […]
For Your Tomorrow – A Book Of Great War Poetry
To mark the Centenary of Armistice, Forgotten Veterans UK have produced this stunning publication which contains 25 of the Great War poems alongside modern pieces by FVUK members and supporters. This isn’t just a book of poems, from the start to finish the historical pieces along with the poems take the reader on […]
Why Going From Doctor To Doctor Isn’t What I Need Right Now
By Annie Fields in The Mighty. I thought there would be a time when I would be done with doctors. I was tired – tired of the appointments, the endless blood work, the scheduling, the MRIs, explaining everything over and over. I told myself that before I came back to school I would […]
ME/CFS and Freeze: A Metabolic State Of Hibernation That Is Not In Your Head
By Veronique Mead in Chronic Illness Trauma Studies. This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation. It draws from a 2016 study showing statistically significant objective metabolic changes in ME/CFS and how it is a very real physiological state that is not psychological. […]
Pop Megastar Ed Sheeran Confirms Two Concerts In Roundhay Park, Leeds Next Summer
By Grace Newton in The Yorkshire Evening Post. It’s official – Ed Sheeran will play two outdoor gigs in Leeds next summer. The pop superstar has announced two dates in Roundhay Park on Friday August 16 and Saturday August 17. Tickets will go on sale on Thursday September 27 at 10 am from […]
Curious Kids: Why Does English Have So Many Different Spelling Rules ?
By Kate Burridge in The Conversation. A bad start It was a rocky beginning for English spelling. Quite simply, the 23-letter Roman alphabet has never been adequate — even Old English (spoken 450-1150) had 35 or so sounds, and our sound system is now even bigger. More spelling problems came in when French […]
23 Ways To Help Yourself When You Live On Your Own With ME/CFS
By Laura Denman in The Mighty. Living with chronic illness, especially one involving chronic fatigue, is hard. Often we rely on others for help to do those every day tasks that most people take for granted. We need to take care of ourselves to minimize the effects of our illness and yet, even these […]
Open Medicine Foundation Sponsors Second Annual Community Symposium On The Molecular Basis Of ME/CFS At Stanford University
From Market Insider. LOS ANGELES, Sept. 20, 2018 /PRNewswire/ — Open Medicine Foundation (OMF), the premier nonprofit organization investing in research to cure myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), sponsors the Second Annual Community Symposium on the Molecular Basis of ME/CFS on September 29, 2018, at Stanford University. This event is expected to draw more than 300 scientists, […]
York’s Little Festival Of Live Music Returns To The City Today.
By Cat Soave in Minster FM. The multi-award-winning festival will run from 21-29 September (excluding 24 and 25) on Parliament Street, York and will feature 28 musicians and bands from across the north of England. The biannual event which hosts a small festival in the spring and a large festival alongside the York […]
Why It’s Frustrating To Be Told, ‘You Don’t Look Sick!’ When You Have An Invisible Illness
By Jo Moss in The Mighty. When you live with an invisible chronic illness there’s a phrase you hear a lot: “You don’t look sick!” It’s so common that many of us don’t even bat an eyelid when these words are uttered. But whether it’s from a well-meaning friend, a doctor or a complete stranger, it’s […]
Jen Brea’s ME Film ‘Unrest’ To Be Shown In Otley
Hi everyone. I’m sure you will all know of the Jen Brea ME film, ‘Unrest’, and may well have seen it in York or Selby. This is just to let you know that there is to be a further showing in Otley Courthouse Arts Centre on Fri 5 Oct at 7.30 pm. Tickets at […]
Ten Things You Must Do At York Food Festival 2018
From YorkMix. Food, drink, music and family fun are back on the menu as the York Food & Drink Festival returns. The ten days of the festival are packed with fabulous flavours, delicious demonstrations, tasty trails and lots of free samples! Festival director Michael Hjort said: We’re delighted to offer a rather different […]
The Question No One Ever Asks About Life With Chronic Fatigue Syndrome
By Hannah Deal in The Mighty. Have you ever felt unable to put an experience into words? As if the only way to truly get your thoughts across was to write about it? That’s sort of how I’m feeling about life right now. My life looks pretty good from the outside. In the […]
Sorry, Netflix: We Don’t Need Another Freak Show
By Frances Ryan in The Guardian. Afflicted has enraged its participants, but it wouldn’t be the first TV show to use people with disabilities as entertainment fodder. An open letter to Netflix was published on Tuesday criticising its recent docu-series, Afflicted, which chronicles the lives of seven people with chronic illnesses. The letter highlighted what it called the […]
A Wing, A Prayer And Vicky Whittemore: The NIH And Chronic Fatigue Syndrome In 2018
By Cort Johnson in Health Rising. “I think some people are angry for good reason. This disease hasn’t gotten enough attention.” Vicky Whittemore My partner and I made our way to Vicky Whittemore’s office in a building off the NIH campus. Security was tight as always. We signed in and were […]
Trial By Error: So What’s Happening With The MAGENTA Trial ?
By David Tuller, DrPH. I’ll be in Bristol later this week for the CFS/ME Research Collaborative’s annual conference. I was not welcome last year, since I was at that point engaged in harshly criticizing the organization for its unwillingness to acknowledge that its deputy chair had falsely accused me of libel. This year, things […]
Man Finds Uncle’s Lost WW2 Voice Diaries… On Ebay
From Forces Network. A man whose uncle died in one of the greatest tragedies of the Second World War has found his voice diaries on eBay. Robert Terence Grogan, aka Terry, died when HMS Hood was sunk by the German battleship Bismarck during the Battle of the Denmark Strait in 1941. Only three men out […]
What My Husband Shared When I Interviewed Him About Marriage And CFS
By Kendall Kuzma in The Mighty. I have been unwell for three years now and unable to work for the bulk of that time. Having a chronic illness can create a complex range of challenges for relationships. Everything from guilt and resentment to feeling like one partner is contributing more than the other. Although my husband and […]
ME/CFS And Freeze: A Metabolic State Of Hibernation That Is Not In Your Head
By VERONIQUE MEAD, MD, MA in Chronic Illness Trauma Studies. This post introduces the relationship between chronic fatigue syndrome aka ME/CFS and freeze and similar death-like states such as hibernation. You’ll learn how recently identified metabolic changes are regulated by the autonomic nervous system to cause symptoms. And why they are real and not psychological. […]
The Case For IVIG Treatment In Chronic Fatigue Syndrome (ME/CFS), Fibromyalgia, Small Fiber Neuropathy, And POTS : IVIG#3
By Cort Johnson in Health Rising. “The bottom line is that we should rethink this whole area and encourage proper clinical trials.” Dr. Nancy Klimas This article is the last of a three-part series on IVIG which came out of my attending the 2018 Dysautonomia Conference in Nashville, Tennessee. An IVIG Chronic Fatigue […]
Chronic Diseases Driven By Metabolic Dysfunction
Editor’s note: Although this article does not specifically address ME/CFS, Naviaux’s metabolomics study on ME/CFS is clearly related to this theory. Press Release: University of California – San Diego, September 9, 2018. Much of modern Western medicine is based upon the treatment of acute, immediate harm, from physical injury to infections, from broken bones and the common […]
13 Pictures As The Stars Descend On York To Film ITV Drama Victoria
![Jenna_Coleman,_SDCC_2015_by_Gage_Skidmore[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/Jenna_Coleman_SDCC_2015_by_Gage_Skidmore1-150x150.jpg)
From YorkMix. The stars were out in York last weekend as scenes were shot for the smash ITV drama Victoria. Jenna Coleman, playing Queen Victoria, and Laurence Fox as her Foreign Secretary Lord Palmerston, were among a cast dozens strong who took over the Eye of York. York Crown Court was standing in for Dublin […]
Scottish Lib Dems Pass Motion For ME, With Amendment
By Susan Cole in #MEAcion. ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats autumn conference voted to support conference motion SC5: Investing in ME – Recognition, Research, and Education. So it’s official, the motion, drawn up in consultation with #MEAction Scotland, is […]
Music Legend Rod Stewart To Play Concert In York
From YorkMix. Music superstar Sir Rod Stewart is to play his first ever gig in York. The rock and roll legend will be live in concert at York Racecourse on Saturday June 1 2019. A temporary concert arena will be built specially for for the event next to York Racecourse’s Clocktower Enclosure. It is […]
Stuart Murdoch – OMF Ambassador
From The Open Medicine Foundation. OMF Ambassadors support our research efforts and are helping build awareness of ME/CFS and chronic complex diseases worldwide. OMF Ambassadors are promoting our work through videos and messaging on their social media and websites, personal appearances, and face-to-face interactions with their communities and fans. In addition, they are invited […]
Flu Vaccination And M.E. (2018-19)
By Dr Charles Shepherd – 12 September 2018 Seasonal flu (also known as influenza) is a highly infectious illness caused by several types of flu virus. It spreads rapidly through small infected droplets that are coughed or sneezed into the air by an infected person. Even people with mild or no symptoms can infect other people. […]
Myth: Healthy Food Is More Expensive Than Unhealthy Food
By Charlie Middleton in The Conversation. The idea that healthy food costs more than junk food is something I hear a lot. Students tell me they’d like to eat better but can’t afford to. There is a strong belief that cooking from scratch costs a fortune, and with takeaway meals priced as low as […]
Prevalence And Incidence Of ME/CFS In Europe
By F. Estévez-López et al. • ProHealth.com. Prevalence and incidence of myalgic encephalomyelitis/chronic fatigue syndrome in Europe-the Euro-epiME study from the European network EUROMENE: a protocol for a systematic review Abstract INTRODUCTION: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic disease involving central nervous system and immune system disorders, as well as cardiovascular […]
ME And CFS Medical Abnormalities
From Paradigmchange.com. More than 1,000 peer-reviewed articles have been published demonstrating a wide variety of physiological abnormalities in patients with myalgic encephalomyelitis, chronic fatigue syndrome and ME/CFS. To read the citations and a brief description of each article, please click on the topic links below. The full abstract for each article can […]
10 Feelings That Alternate in My Mind As I Live With ME/CFS
By Kendall Kuzma in The Mighty. For someone in reasonable health, it can be hard to understand what a loved one is going through if they are struggling with some kind of ongoing health issue. It’s especially tough for everyone if the illness is one which is unseen, as in, no obvious signs of the […]
Mission Accomplished! (????) Feds Terminate the Federal Advisory Committee on Chronic Fatigue Syndrome (ME/CFS)
By Cort Johnson in Health Rising. Without any warning the NIH, in a letter sent to current Chronic Fatigue Syndrome Advisory Committee (CFSAC) members, told them their services were no longer needed. The 15-year experiment that was CFSAC – a panel of ME/CFS experts brought together to advise the federal government on […]
Guidelines For ME/CFS Outdated And Dangerous
By Felicity Nelson in Medical Republic. NICE’s clinical guidelines still recommend potentially damaging treatments for chronic fatigue syndrome, but they won’t be updated until 2020. The 2007 NICE guidelines currently recommend the use of graded exercise therapy (GET), a treatment that only helps a minority of patients and can cause significant harm in some […]
Time For Unrest: Why Patients With ME Are Demanding Justice.
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