ME/CFS Information

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

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    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.

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    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 […]

Travelling Abroad With M.E.

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  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 […]

Inside I’m Dancing

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    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

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  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)

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  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

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  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

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    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 […]

Broken Mitochondria Use ‘Eat Me’ Proteins To Summon Their Executioners

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    From Eureka Alert. When mitochondria become damaged, they avoid causing further problems by signaling cellular proteins to degrade them. In a paper publishing April 11, 2019, in the journal Developmental Cell, scientists in Norway report that they have discovered how the cells trigger this process, which is called mitophagy. In cells with broken mitochondria, […]

East African Disease Informs Nath’s Search For The Cause Of ME/CFS

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    By Cort Johnson in Simmaron Research.   Could a disease found in the remote villages of East Africa end up being a model for chronic fatigue syndrome (ME/CFS)? Dr. Avindra Nath – the leader of the NIH Intramural study on ME/CFS –  thinks perhaps so. He’s not daunted by mysterious diseases and nor […]

Do You Really Believe In ME ?

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      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

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  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

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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

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    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

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    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. […]

About Ian Rudd

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  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

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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

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    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

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    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

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  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 […]

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

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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 ?

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  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

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    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 […]

Migraines And Other Headaches In Fibromyalgia And Chronic Fatigue Syndrome (ME/CFS)

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  By Brent Wells in Health Rising.   If you’ve ever suffered from any type of headache, you know that there is nothing funny about them. However, because migraines and headaches are not fatal and often do not result in permanent disability for most, their importance to public health has long been understated. This is […]

Trial By Error: The CDC’s Pathetic Response To Reuters

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    By David Tuller, DrPH The recent Reuters article about the illness, or cluster of illnesses, variously called CFS, ME, CFS/ME and ME/CFS was problematic for many reasons. One of them was the information included from the US Centers for Disease Control and Prevention. In explaining why the CDC dropped its longstanding recommendations for […]

CDC The Puppeteer And The UK BPS Connection To Bury ME

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By Gabby Klein in Relating to ME.   Fake Media Attacks on #PwME In the past week, there has been a media onslaught of biased and stinging articles maligning 17 million disabled men, women and children worldwide who suffer from the acquired neurological and immunological disease myalgic encephalomyelitis (ME).  The false media stories about the […]

Mike’s EU Marathons- Cyprus (17.03.19)

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  By Mike Harley. After 6 months since Sofia, I arrived in Cyprus for number 20 after 60 training runs and 400 miles of winter training to kick off year 5 and the first of six marathons in 2019.  Heading into the race I’d run my fastest ever Half Marathon (1 hr 40 in Gloucester) and raised […]

15 Things People With Chronic Illness Mean When They Say ‘I Don’t Feel Good’

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  By Veronica Vivona in The Mighty.   Many of those with chronic illness may be used to saying they’re “good” or “fine” when it comes to how they’re feeling. It doesn’t always mean they’re actually good or fine though. It might just be what they’re portraying to the world. They may do this for a variety of […]

Hull Mum: ‘Horror Illness Has Left My Body Feeling Like An 80-Year-Old’s – But No-One Believed Me’

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  By Anna Riley in Hull Live. A Hull mum has spoken of her battle with a health condition people believed she did not have. Nicola Meekin, 39, from Hull, became ill nine years ago when she started suffering from a bad chest infection. But instead of getting better, her sickness worsened. To Mrs Meekin, it felt like […]

Experimental Blood Test Accurately Spots Fibromyalgia

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  By Misti Crane in Ohio Stae News.   For the first time, researchers have evidence that fibromyalgia can be reliably detected in blood samples – work they hope will pave the way for a simple, fast diagnosis. In a study that appears in the Journal of Biological Chemistry, researchers from The Ohio State University report success […]

Why ME, Or Yuppie Flu, Is Like Aids Was Once – Misunderstood Or Dismissed As Not Real, And Ignored By Most Doctors

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By Anthea Rowan  in The South China Morning Post.   Twenty million people suffer from myalgic encephalomyelitis, yet there is still no test for it, nor any approved treatment. We talk to a mother whose daughter has the illness, and who has consulted dozens of doctors in search of help. Until my friend Caroline introduced me […]

Children With Chronic Fatigue Syndrome Often Wait More Than A Year For Diagnosis

Australia

  by Sasha Nimmo Researchers at the Murdoch Children’s Research Institute in Melbourne confirmed that paediatric chronic fatigue syndrome (Fukuda criteria) causes significant disability and little is known about how common the condition is or how it is currently managed in Australia. More than half of children have to wait a year or longer before […]

ME Isn’t Just ‘Exercise Phobia’: it’s A Physical Illness

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By Tanya Marlow in The Spectator.   Imagine you’re diagnosed with epilepsy: what would you think if you weren’t referred to a specialist but taken to a psychiatrist to treat you for your ‘false illness beliefs’? This is what happens to Myalgic Encephalomyelitis (ME) patients in the UK. They are told to ignore their symptoms, […]

The Myth Of “It’s All In Your Head”

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  By Abby Pickus in DEPAUL Magazine.  In 1980, a high school English teacher from Wisconsin named Pat Fero went on a trip to England. Healthy and in her 30s, she noticed something was very wrong toward the end of the trip. “We were in this beautiful countryside, and we went to climb a hill […]

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