ME/CFS Information

ME Awareness: Failure To Accurately Diagnose Can Lead To Lifetime Of Misery And Suffering

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  By Debbie Mckno in the ME Awareness website. My name is Debbie. Here is the story of my long, exhausting, and difficult battle to get diagnosed with Fibromyalgia and Myalgic Encephalomyelitis. From 17 years old, I was told by doctors, “You are just run down.” I had constant infections, viruses, and chronic tonsillitis. Feeling […]

Living Life ‘Light’ With ME

Writing Poetry

  LIVING LIFE ‘LIGHT’ WITH ME When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight […]

Beyond Tired : ME/CFS Life – Awareness Week 2020

Invisible Illness Graphic

From the Invisibly ME Blog.   The 11th to 17th May 2020 marks ME/CFS Awareness Week. It was also Fibromyalgia Awareness Day on 12th May, which I posted about recently with debunking 6 fibro myths. The colour blue is recognised as the colour of ME awareness and many charities, groups and individuals are doing their bit […]

Sadly, COVID-19 Could Just Be The Start Of Your Problems..

DessertSpoons

  By Spoonseeker.   I know you have enough to worry about already with the pandemic situation the way it is, but there is something else important that you should know. The sad truth is that if you get COVID – 19 and survive, it could just be the start of your problems. Ever since […]

‘Leave No One Behind’ – ME Awareness Day 2020

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  There has been a sense of confusion in my heart since the Covid-19 Lockdown. Maybe by writing I can unravel the unease. Thoughts on ME & Covid-19 by Corina Duyn. For the past seven weeks – 55 days – life as we knew it has changed forever. A virus which nobody can see, but […]

Welcome To Law And Health

Valerie Eliot-Smith

  By Valerie Eliot Smith in Law And Health.   “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019  ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]

Trial By Error: Today Is May 12th And Everyone’s Missing

David Tuller

  By David Tuller, DrPH Today, May 12th, is International Awareness Day for Chronic Immunological and Neurological Diseases (CIND)—often shortened to International ME (or ME/CFS) and Fibromyalgia Awareness Day. Besides ME, other diseases included in the CIND group, per the May 12th International Awareness Day site, are chronic fatigue syndrome, Gulf War Syndrome and multiple chemical sensitivity. […]

ME And The Pain Of Looking Forward

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By talmandan in The Low Side Blog.   I’ve spent the last six weeks with some strange form of writer’s block. I don’t know if it has just coincidentally been parallel to a global pandemic, or due to some debilitating levels of ME related exhaustion, or a combination of both. I’ve watched while chronic illness bloggers […]

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 […]

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. ?

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    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 […]

Stalwart Champion Of The ME Community Retires After Distinguished Parliamentary Career

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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. […]

7 Signs That You’re Running Out Of Spoons

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    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 […]

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 ?

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  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 […]

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

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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 […]

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

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  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

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  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

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  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 […]

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. […]

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