myalgic encephalomyelitis

What My Chronic Fatigue Syndrome Actually Feels Like

Vagus Nerve

    By Aanchal Chopra in The Mighty.   I have moderate chronic fatigue syndrome (CFS), and this is my own experience. Others may have different symptoms or manifestations because every individual is different. But this is a glimpse into what my life with CFS actually feels like. Living with CFS — or myalgic encephalomyelitis (ME) — is like swimming […]

A Self-Help Guide To Managing Myalgic Encephalomyelitis

ME

  From ME Support.   Introduction I have had Myalgic Encephalomyelitis of varying degrees for the majority of my life, including periods of being housebound and bedridden. Conventional medicine offers us few options, and we’re faced with conflicting advice on living with M.E.; therefore, it’s difficult to know which way to turn. One thing that […]

Don’t Judge Appearances For Accessible Parking And Other Needs

Invisible Illness

  From Invisible Disabilities Association.   Don’t judge appearances. People with invisible disabilities don’t LOOK Disabled. Don’t judge appearances when you think you see someone abusing privileges or rights reserved for the disabled because you might be making a common mistake based on perception. Have you ever seen someone get out of a car parked […]

If You’re Constantly Exhausted, Take 3 Minutes To Read Up On Why

Blog-11-Signs-of-Adrenal-Exhaustion

    By Emma Pritchard in Women’s Health.    If you’re barely holding your heavy eyes open as you crawl into the long weekend, then what you’re experiencing might be beyond mere tiredness. And you wouldn’t be alone. According to the Royal College of Psychiatrists, one in five people experiences unusual tiredness at any given time, […]

Migraine & M.E.

Migraine

    From M.E. Support.   Migraine: isn’t that just a bad headache? Migraine is a condition which affects people of any age, gender and ethnic group. Far more than ‘just a headache’, migraine affects the whole body and can result in many symptoms. Often people experience an intense throbbing headache which may affect one […]

A Ketamine Revolution For Depression And Pain ? Spravato, Fibromyalgia And ME/CFS

Ketamine

  By Cort Johnson in Health Rising.   For years, ketamine was known for its use as an anesthetic or as a recreational drug. It had the nice benefit of being able to knock one out without impacting heart rate or breathing.  Its ability to provide quick and safe sedation saved many lives during the Vietnam […]

David Tuller On Exposing The Bad Science Behind The Biopsychosocial Effort To Define ME/CFS

Tuller-Tears-UP-Pace-Trial

  By Cort Johnson in Health Rising. David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and writer for the New York Times, the policy journal Health Affairs, and other publications, Tuller became outraged at the long history of neglect and abuse directed toward ME/CFS. His publications […]

Airline Forced To Apologise After Charging Woman For Carer’s Seat Reservation

Disability Travel

    By John Pring in Disability News Service.   An airline has been forced to apologise to a disabled woman after it charged her extra to reserve a seat next to her for her carer, and then refused to refund the charge. Helen Jenkins had informed Flybe when she was booking her return flights […]

Travelling Abroad With M.E.

Air Travel

  By Jane Shaw in M.E. Support.   Introduction I am writing this in October 2018, and most people have had their holidays for this year and might be thinking of where to go next year, if they haven’t been put off by Brexit scares and uncertainties. Travelling abroad is fun for most people, but […]

The York ME TGA Shield – Inter Company Fantasy Football League

FreeGreatPicture.com-19724-football

  The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility.  This is to help raise awareness of the illness that affects around 250,00 people in the UK, and 800 in the York area alone. The B Team of Bransby Wilson are looking strong favourites to win the league this season, […]

Inside I’m Dancing

Dancing in the Rain

    By Chloe Leanne Brooks in ME Support.   I used to live by the motto “Don’t wait for the storm to pass, learn to dance in the rain” – but unfortunately, in my life this is no longer the case. My life is stormy. I can’t dance through this pain and heartache any more because […]

Trial By Error: Crowdfunding, Week 2; And More Sharpe And Chalder

David Tuller

    By David Tuller, DrPH As of this post, I have achieved 57% of my goal, with 542 donations and 15 days left to go. I think that’s pretty good! I’m optimistic about getting reasonably close to the amount I’m trying to raise. Folks at Berkeley certainly notice the success of my crowdfunding. It […]

12 Things That Happen When You Have A Chronic Illness

chronic

  By Ally Teixeira in The Mighty.   Having a chronic illness isn’t easy. All of us chronically ill warriors may feel alone, but we all have a lot in common! Here are 12 things that happen when you’re chronically ill. You know you have a chronic illness when… 1. Doing your hair feels like some serious […]

The Never-Ending Challenge Of Dealing With Post-Exertional Malaise (PEM)

435px-Cfs_woman_sketch

  From Not Just Tired.   After a good day, or a spell of feeling pretty ok, it’s always a kick in the teeth when Post-Exertional Malaise (PEM) catches up with you. As I’m sure those of you living with ME/CFS, will be all too familiar with. For those not familiar, PEM is the worsening […]

Care For Someone With Severe Myalgic Encephalomyelitis

Severe ME

  By Greg Crowhurst in M.E. Support.   Linda, my wife, collapsed over two decades ago and very quickly became bed bound. In the months leading up to her collapse, she had had several operations and a long chest infection. For almost two years prior to that she was in constant pain, experiencing severe pins […]

Toxic Masculinity Made My ME Much More Punishing

MEAction_WebLogo-50_

    By Jack Croxall in #MEAction.   I came to on the floor of a supermarket in an affluent London borough. I was staring up at a paneled ceiling, half-blinded by piercing white lights. After a groggy moment of confusion, panic set in. I leapt up, finding myself in the middle of a queue […]

Do You Really Believe In ME ?

Dr Nina Muirhead_0

      From The Royal College Of Physicians.   With many in the medical profession misunderstanding ME, Dr Nina Muirhead recounts her own experience with the illness and how it reshaped her understanding of it. Many doctors can find themselves in the position of the patient, and being informed of one’s own diagnosis can be […]

Reeducating Doctors About ME/CFS

Doctor

  By Dr David Tuller.   Steven Olson, MD, a 1984 graduate of the UC Davis School of Medicine, practices family medicine at Kaiser Permanente in Santa Rosa, Calif. He also serves as the Permanente Medical Group’s regional physician director for Northern California, an area that includes some 4.5 million members. Among his responsibilities is to oversee […]

Return On Investment II: David Tuller

David Tuller

By Jennie Spotila in Occupy M.E.   Last year, I fully endorsed Dr. David Tuller’s crowdfunding appeal in support of his investigative reporting on ME. This year, I am happy to endorse Tuller’s fundraising once again. The progress report that accompanies Dr. Tuller’s fundraising request (and also posted on Virology blog) details his research, writing and publications during the last year. […]

ME Affects Four Times More Women Than Men – Dismissing This Terrifying Illness Is Sexist

ME !

    By Josie Richardson in Huffpost.   Like Victorian women being branded ‘hysterical’, women like my best friend are being silenced.   “ME, that’s the one where you don’t feel like going to work today,” Ricky Gervais once quipped on-stage. He voices a common feeling. I have heard someone casually proclaim that they must have […]

IIMEC14 – The Anne Örtegren Memorial Lecture 2019

Anne Ortegren

    From Invest in ME Research.   IIMEC14 is the fourteenth annual international ME conference that the charity has organised in London. For many of those years the charity often communicated with a patient/advocate in Sweden – someone we are proud to have called our friend.   Anne Örtegren passed away in January 2018. […]

Cutting Disability Services Doesn’t Save Money. But It Does Damage Lives

Frances-Ryan,-L

By Frances Ryan in The Guardian.   In times of deep inequality and shrinking services, politics is often framed like a David and Goliath battle. You see it in the mothers who this week challenged the London developers trying to stop their “social housing kids” playing in segregated play areas. Or the teachers and parents in Cambridge marching against […]

About Ian Rudd

18d15f10-537d-4cb4-b983-a770cb6e1ca7_1522775067859

  From All About M.E.   My cousin Ian Rudd died in April 2018. Paramedics were called in the early morning and were unable to resuscitate him. This is an edited version of a blog I wrote for severe ME Day in 2015 while Ian was still alive. He suffered from a cruel disease called […]

When Children Don’t Get Well

childcare

From Utting-Wolff Spouts.   When children don’t get well, when there is no adequate treatment, and they remain ill, we need to step in and fight for their right to be part of society. When children don’t get well, time passes by, sometimes like treacle, sometimes quickly,  with the realisation that another school year has whipped […]

When Chronic Fatigue Syndrome Feels Like An Energy-Sucking Vampire

Lost

    By Caitlin Phillips-Peddlesden in The Mighty.   Chronic fatigue syndrome (CFS) fatigue. The invisible illness vampire. The blood- (or energy-) sucking beast ever at your shoulder, teeth in your neck. CFS fatigue is invisible. Many people with CFS have no visibly discernible symptoms. Only the bags under our eyes point to the constant torture people […]

Hidden Disabilities – Heathrow’s Sunflower Lanyard

Air Travel

    From Heathrow.com.   At Heathrow we understand all passengers are unique and we offer different levels of support tailored to your needs. For a hidden disability such as autism, dementia or anxiety, help is always at hand at the airport. If you would like to book assistance just let your airline know 48 […]

GET And CBT Are Not Safe For ME – Summary Of Survey Results

MEAction_WebLogo-50_

    By ME Action Network UK.   Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report that cognitive behavioural therapy (CBT) led to no change in their […]

Mitochondrial Complex Activity

2-mitochondria

  From ME Research UK. Cara Tomas and colleagues from Newcastle University have recently published a report on mitochondrial function in ME/CFS, and this study is related to research on muscle fatigue they are currently pursuing with support from ME Research UK. The mitochondria are considered the power plants of the body, generating the energy needed to […]

To People With Invisible Illnesses, From A Paramedic Who Didn’t Believe You

Invisible Illness

  By Ashley in The Mighty.   I’ve been a paramedic on and off for 10 years now. I’ve seen the good and the bad — probably more bad than good, but I’ve opened my eyes to something different. I’ve seen people in Facebook groups post about how health care professionals treat people with invisible illnesses poorly because they […]

Naidex 45

31890933_1663231880380899_3878209701392941056_n

  From the Two Doughnts blog. on tuesday i travelled to birmingham nec for naidex. it’s a yearly convention for all things disabled. or as i like to call it – all things i can’t afford. i felt right at home of course with all my wheelchair homie’s rocking up for the occasion. it was […]

Medscape’s Chronic Fatigue Syndrome (ME/CFS) Program Reaches Deep Into The Medical Community

johnson_cort

By Cort Johnson in Health Rising.   With its regular news updates, information on drugs and diseases, quizzes, conference overviews, and educational courses, Medscape, which just turned 20 years old, strives to be a kind of one-stop shop for medical professionals (and consumers). It appears to be succeeding. Producing dozens of news stories a day, […]

Chronic Illness: Aren’t You Glad It Isn’t Worse ?

chronic-illness

  From The Brainless Blogger.   Okay, so stop telling people it could be worse. Yeah. It could be worse. It can always be worse. But it sure as hell could be better. We are aware it could be worse. We tell ourselves this sometimes to get through. Hell, sometimes worse happens and we are […]

The Difference Between ‘Rest’ And ‘Bad’ Days For My Chronic Illness

restless-leg-syndrome

    By Amy Saunders in The Mighty.   Living with an illness is hard. It means being ill. It means constant worry that you’re going to be ill. And it means your life is spent managing your illness to avoid being ill. You can have days when you feel on top of the world […]

Things I Wish I Knew Before I Bought My First Powerchair For Chronic Illness

Natasha Lipman

    By Natasha Lipman.   It took me a long time to come to terms with deciding to become a wheelchair user, but when I knew that I was ready it was like a switch flicked in my brain. For the first time in years, I had a ‘real job’, and even the few […]

If Your Chronic Illness Is Making You Want to Give Up

Frustration Chronic Illness

  By Candida Reece in The Mighty. Having a chronic illness can mean life can be rough. It means going to the store with only one sock on because you didn’t want to go through the pain to find the other one; or maybe your shirt is inside out, or you have two different shoes, or clothes […]

The York ME Community © 2015
Powered by Live Score & Live Score App