Myalgic Encephalomyelitis

Myalgic Encephalomyelitis

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

mecfs-tagcloud

  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, […]

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 […]

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 […]

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 […]

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 […]

Life In Lockdown: What Matters When All Is Lost

Lost

  By Naomi Whittingham in A Life Hidden.   On the eve of 2020, in New Year Reflections, I looked back on a difficult 2019 and asked: “What might I be called upon to face this year?”  I could not have imagined what lay ahead – not only for me, but for the entire world. Living […]

Coronavirus And Chronic Illness

chronic

  What does Covid-19 mean for the chronic illness community? A guest blog by Catherine Hale with Alison Allam, Victoria Clutton and Leonora Gunn in Disability Wales. The Covid-19 crisis has us all in shock. But it has also shone a light on our social exclusion as a group of disabled people, as well as our […]

Meet The Businesswomen Whose Chronic Conditions Mean They Have To Sneak In Sleep In Toilets

Ebusiness Concept

By Dayna McAlpine in the Metro.   It’s 8am on a Monday morning. I’ve had ten hours of sleep, a strong coffee to kick start the day and a cold shower to get my blood pumping before heading to the office. It’s 12pm on a Monday afternoon. I’ve been staring at my screen for three […]

Hello, Is It Me You’re Looking For ?

friendship

  HELLO, IS IT ME YOU’RE LOOKING FOR ? I’m sure you know the feeling I’m sure you know the score Hit with ME, you soon get to see How things are not as before I hoped my friends would stay with me I seriously thought they would I thought that they’d care And would […]

The Distant Corona Connection

Anil

  By Anil van der Zee.   Adjusting. We are in a crisis! A pandemic! The coronavirus is spreading. It’s frightening. Will I be infected? My friends? And most importantly how will it affect us? The uncertainty of the unknown is probably the most unsettling of the whole situation. As we are dealing with a […]

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

Coronavirus Generic 1

By Cort Johnson in Simmaron Research.   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 sentence. […]

A Letter To My Nearest And Dearest

Blog

  From the Mummying and M.E. Blog.   To my wonderful friends and family (you know who you are), I want to attempt to say thank you to you all but also sorry at the same time by writing this open letter. I’m not entirely sure I’ll manage but here goes. For those who haven’t […]

Benefit Assessment Companies ‘Have Made Almost No Progress’ On Safeguarding

benefits

  By John Pring in Disability News Service.   The three companies that carry out disability benefit assessments for the government have made almost no progress in the last year on alerting local authorities to concerns about claimants whose safety is at risk, according to a disabled campaigner. Last year, freedom of information responses from […]

Coronavirus V: Lipkin, Bateman And Klimas Talk Plus Treatment Updates

USA

  By Cort Johnson in Health Rising.   My, how things change. Less than a month ago, only 70 coronavirus cases had been reported in the country. Our president had just recently announced that the virus was under control. The sun was shining brightly. How naïve we all were. Just a month later, the U.S. leads the […]

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