The York ME Community

The Blood Vessel Crunch: A Unifying Hypothesis For ME/CFS

Research

  By Cort Johnson in Simmaron Research.   This is another hypothesis paper that gives one hope – and makes one wonder if the authors might have a handle on what’s happening with chronic fatigue syndrome (ME/CFS). The paper proposes that a tantalizingly simple problem – an autoimmune attack on just one receptor – out […]

Millions Missing

Millions Missing

  Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t reach her Didn’t think to wonder why Jack from the pub Hayley down at the […]

SEID Is Killing ME

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  From ME Advocacy. Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, using […]

Coronavirus: MPs And Peers Ask PM For A ‘Disability Inclusive’ Response To Pandemic

Disability Dice

By John Pring in Disability News Service. At least 10 disabled MPs and peers have signed a letter calling on the prime minister to ensure that the government improves its support for disabled people in its response to the coronavirus pandemic. The letter, sent to Boris Johnson by the all-party parliamentary group for disability and […]

Study Of The Possible Conversion Of COVID-19 Patients To ME / CFS

Research

  From The Open Medicine Foundation.   Open Medicine Foundation is excited to announce the initiation of a study of patients with COVID-19 to monitor the course of their disease and its sequelae to ascertain whether they convert to ME / CFS and to study the molecular transformation if it occurs. This will involve  collection of body […]

Trial By Error: Merck Manual Still Disseminates GET/CBT Advice

David Tuller

  By David Tuller, DrPH The graded exercise therapy/cognitive behavior therapy treatment paradigm for chronic fatigue syndrome—also imposed on those diagnosed with myalgic encephalomyelitis, CFS/ME, ME/CFS, and other variants–is like the undead. This concept keeps reemerging from the fetid intellectual swamplands that spawned it, no matter how many times it is revealed as nonsense. Although […]

COVID-19, NICE And ME: Towards Litigation ?

Valerie Eliot-Smith

  By Valerie Eliot Smith   On 18 March 2020, I tweeted this: “#coronavirus is ongoing international emergency. #MyalgicEncephalomyelitis has been international crisis/scandal for decades. In US #ME continues to be marginalised by @CDCgov  & @NIH. Nevertheless #ME advocacy must continue as #ME patients everywhere remain vulnerable + invisible.”    Since that tweet, the COVID-19 crisis has continued to escalate worldwide. Given that the disease myalgic encephalomyelitis (ME) often has an […]

What Have Tea And Cake Got To Do With M.E. ?

tea_cup

    By Anna Redshaw in her M.E. Myself and I Blog.   In my experience it can be difficult to get non-sufferers to properly engage with M.E. advocacy efforts. There can be many reasons for this. Perhaps they find it upsetting to think of the depths of their loved one’s suffering. Or they don’t […]

Coronavirus: Disabled Benefit Claimants Tell MPs How Crisis Has Hit Them Hard

Benefits

    By John Pring in Disability News Service.   Disabled people have told MPs how they have been hit particularly hard by the impact of the COVID-19 crisis on the benefits system. The Commons work and pensions committee carried out a survey of benefit claimants as part of an inquiry into the response of the Department […]

Coronavirus Could Cause Secondary Illnesses Including Chronic Fatigue Syndrome, Experts Warn

chronic

By Sarah Newey in The Telegraph.   Covid-19 may trigger post-viral fatigue syndrome in some patients, experts have warned, amid growing evidence that an infection could have significant long term health repercussions. While initial reports focused on the impact that the coronavirus has on the respiratory system, a stream of medical papers published over the last few weeks […]

Stalwart Champion Of The ME Community Retires After Distinguished Parliamentary Career

Margaret_of_Mar

By Dr Charles Shepherd, Hon. Medical Adviser, ME Association.   ME advocate and parliamentary champion, the Countess of Mar, retires from The House of Lords after 45 years. Earlier in the week the Countess of Mar wrote to members of Forward-ME to say that she would be retiring from the House of Lords as from today. […]

Coronavirus Has Made It Even Easier To Forget About Disabled People

Disability Parking

  By Frances Ryan in The Guardian.   As the weeks go on, it is becoming clear coronavirus is not an equal opportunity pandemic. Guardian analysis last week found ethnic minorities in England are dying in disproportionately high numbers compared with white people. And now research from the Office for National Statistics (ONS) shows the pandemic is having a […]

7 Signs That You’re Running Out Of Spoons

DessertSpoons

    By ME/CFS Self-Help Guru.   One frustrating thing about energy limiting chronic illnesses like ME/CFS, Fibromyalgia and Lyme disease, is that energy levels can fluctuate from one day to the next. Christine Miserandino’s Spoon Theory has helped many people understand the concept of rationing out your energy by relating an energy unit to a spoon, […]

For ME/CFS Patients, Viral Immunities Come At A Devastating, Lifelong Cost

Scientist using a microscope

  By Scott LaFee in USC San Diego Health.   Mylagic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. Affected persons often cannot pursue ordinary activities — physical or mental — because of an incapacitating loss of energy and other symptoms, and may find themselves confined to bed or house-bound for years. Anyone […]

Explaining ME/CFS ? Prusty / Naviaux Study Ties Infections To Energy Breakdowns

Research Study

  By Cort Johnson in Health Rising. Unexpected synchronies are always a good sign. Many, of course, are familiar with Bob Naviaux, MD, PhD from the University of California, San Diego (UCSD). Naviaux’s metabolomic work and his Cell Danger Response (CDR) hypothesis have opened up new possible ways of understanding ME/CFS, autism and other diseases. […]

The Bank Of ME

Piggy Bank

  THE BANK OF ME In life you live within your means You save to manage all your dreams Paying back any debts you owe Trying to keep your spending low Then life hits us with ME It sets our fogged minds racing How to cope, our only hope To save our strength through pacing […]

Endometriosis & ME

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  By Vivien Steeles in M.E. Support.   My Experience I’m in contact with many people with M.E., both by e-mail and letter, and it is such a lonely disease with many people not being diagnosed properly or given any help even today. I had to give up my job of teaching and lecturing in […]

Disabled People Deserve Equal Access To Critical Care – Judicial Review

Disability-symbol-2

By Doug Paulley in his kingqueen Blog.   Many disabled people may be left to die so that others can be saved. That’s the impact of likely coming increased demand for hospital treatment, intensive care beds and ventilators, according to multiple reports in the Press. Guidance by the National Institute for Clinical Excellence, from the British Medical Association, […]

Fulford Flowers Brightens York Homes With Rainbow Bouquets During Covid-19 Crisis

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  By Nadia Jefferson-Brown in The Press.   A florist to the stars has returned to her roots to serve the York community during the Covid-19 crisis. Fulford Flowers, known for its big-budget commissions, from celebrity weddings to film premieres, is now brightening people’s days by delivering rainbow bouquets locally. Pictures of rainbows have been popping up in people’s […]

ME/CFS Research During The Time Of The Coronavirus: Shutdowns And Opportunities

Research

By Cort Johnson in Health Rising.   As we enter a second month of a more or less complete shutdown of the economy, a burning question arose – what the heck was going on with our precious chronic fatigue syndrome (ME/CFS) research?  Was it stuck in neutral or proceeding? Had our researchers, like so many […]

Dear Diary: How Will We Remember The Year The World Paused ?

OIP

By Katie Strick in MSN MSN Lifestyle.   Calories consumed: 2,250 (mostly rosé). Minutes spent queueing for the supermarket: 28. Kilometres run in hour of state-mandated exercise: 5.3 (so I could tell Instagram I’d donated to the NHS). Zoom calls completed: seven (if we include the school-mates quiz on Houseparty). It’s funny, trying to summarise […]

Trial By Error: Oxford Health Blinks, Removes Pamphlet On Post-COVID Illness

David Tuller

  By David Tuller, DrPH. In this traumatic time, small victories should be savored. Last week, I noticed a tweet from patient and advocate Tom Kindlon about a pamphlet from the Oxford Health NHS Foundation Trust, the entity that oversees NHS services in the Oxford region. Other patients and advocates also flagged it on social media and sent […]

“A Little Slice Of Normality In A Very Crazy World” – How Off-Road Dog Walking Is Providing Solace In Lockdown

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    From TGA Mobility.   On a morning, one thing is as cyclical as the sunrise – cocker spaniels Tyler and Maya will be roaming the outdoors on their daily walk, followed by Lisa Vesty on her trusty TGA Vita S. Lisa isn’t alone of course. Indeed when the lockdown started, the other dog walkers […]

Will COVID-19 Leave An Explosion Of ME/CFS Cases In Its Wake ?

johnson_cort

  By Cort Johnson in Simmaron Health.   The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same […]

Volunteering From Home – Flexible, Inclusive Opportunities For All

Life of Pippa

From The Life of Pippa Blog.   I firmly believe that there’s no such thing as too many acts of kindness. In light of our current circumstances, it’s been so heartwarming to see that a decent proportion of the general public are shining bright and coming forward to volunteer, doing all they can to help […]

Scientists Warn COVID-19 Could Lead To Neurological Complications In Some Patients

Research Study

By NATHAN DENETTE/THE CANADIAN PRESS. While the new coronavirus is known to cause respiratory illness, some scientists suggest it can also potentially lead to brain and nerve damage in certain patients. Beyond the typical symptoms of COVID-19, including fever, cough and difficulty breathing, doctors around the world have reported cases of infected patients with an […]

Why the Big Bang Produced Something Rather Than Nothing

Space

By Dennis Overbye in The New York Times.   Scientists on Wednesday announced that they were perhaps one step closer to understanding why the universe contains something rather than nothing. Part of the blame, or the glory, they say, may belong to the flimsiest, quirkiest and most elusive elements of nature: neutrinos. These ghostly subatomic […]

Labour’s New Leader Faces Pressure To Follow Through On Campaign Rights Pledges

disability

By John Pring in Disability News Service.   Keir Starmer is set to face pressure from the disabled people’s movement to commit his party to keep a series of pledges he made during his successful campaign to replace Jeremy Corbyn as Labour leader. Among the most striking of those pledges was to back calls by […]

The ME Association End Of Week Research Round-Up | 10 April 2020

Research

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. This information will be included in the monthly update to the central Research Index which is made freely available as a download at the […]

10 Things People Don’t Realize You’re Doing Because You Have An Invisible Illness

invisible inlless

  By Kim Quindlen in Thought Catalog.    Often, the hardest part of having an invisible illness is not the chronic pain or the constant discomfort or any of the other symptoms – it’s the fact that other people cannot really see or understand what you’re going through. Although the disability causes endless problems and challenges for […]

Mourning The End Of An Era, And #NotEnough4ME

Blog

  From dSavannah Rambles blog.   Five years ago yesterday was the last day of my last job, the end of my professional life, and the start of my life as a disabled person (although I didn’t know at the time that it was the end, and it took me a long time to call myself […]

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