ME Symptoms

Thank You + More To Come

Jennifer Brea

    By Jennifer Brea.   On Monday, I shared that after three neurosurgeries, my ME is in remission. I have to admit , it was scared to “come out” about my improvements. I wasn’t sure what the reaction would be. Skepticism? Grief? Anger? My own feelings about my remission are complex. And I don’t know how […]

This Chronic Syndrome Affects Mainly Women & Is Really Hard To Diagnose

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By Katy Fallon in Refinery 29.   When I was a teenager, my mother fell ill with M.E. and I saw her struggle to get her symptoms recognised – even though she was a doctor herself. Myalgic encephalomyelitis (M.E.) is a chronic condition which affects 250,000 people in the UK and around 17 million people […]

Falkirk Girl Shares ME Experience On 16th Birthday

Lonely

    By Charlene Wilson in The Falkirk Herald.   A Falkirk ME patient who claims she was labelled a ‘lazy teenager’ by her GP has chosen to celebrate her 16th birthday by raising awareness about her condition. Hannah Sweeney was diagnosed with Myalgic Encephalomyelitis, more commonly known as ME, when she was just 14. […]

Louisa’s Fight For NDIS Chronic Fatigue Syndrome Support

Australia

    By Dixie Sulda in The Advertiser.   Louisa Stocco is almost too exhausted to fight her own battle. The 21 year old was diagnosed with Chronic Fatigue Syndrome (CFS) three years ago, after she collapsed from exhaustion while touring with a performing arts company. Since then, her physical and mental fatigue has stopped […]

Mattie’s CCI Journey – After 3 Years With ME

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  From Mechanical Basis.   An interview between Jeff and Mattie who has undergone a CCI Fusion operation in the hope of reversing ME.   Mattie is a 47 year old web developer. He lives in a small town in the Netherlands with his wife, his 17 year old son, and their two golden retrievers. Mattie […]

Health Update #3: My ME Is In Remission

Jennifer Brea

  By Jen Brea. This is a hard post to write because there are no words that can do this justice. I can hardly believe it myself. My ME is in remission. For the first few years that I was ill, I dreamt of being able to say this. I fantasized about what recovery would […]

Blood Test May Detect Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Blood Test

    From The National Institutes Of Health.   At a Glance Researchers developed a blood test that, in a pilot study, accurately identified people with myalgic encephalomyelitis/chronic fatigue syndrome. If validated in larger studies, the assay could one day help diagnose the disease and enable researchers to test potential treatments.   Myalgic encephalomyelitis/chronic fatigue […]

Mast Cell Activation Syndrome & Low Blood Volume

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    From Syndrome A.   Summary Two symptoms occur frequently in people with ME/CFS: Mast Cell Activation Syndrome (MCAS) and low blood volume. What if these are not coincidental? Reading time: 4 minutes 27 seconds People with ME/CFS have less blood than we should. We have low blood volume. We also tend to have a condition […]

The International Consensus Criteria For ME

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      From ME Advocacy.   Revised November 14, 2016 to include steps to evaluate for atypical ME as defined by ICC. MEadvocacy.org understands there is a great deal of confusion about the various criteria for myalgic encephalomyelitis, so we created an easy to follow questionnaire to help patients see if they may fit […]

Trial By Error: A Plea To Fiona Godlee On A Familiar Topic

David Tuller

  By David Tuller, DrPH On Wednesday, I sent the following to Dr Fiona Godlee, editorial director of BMJ. The topic, once again, was the ethically and methodologically challenged Lightning Process study, which was published two years ago in Archives of Disease in Childhood, a BMJ journal. My letter was prompted by the recent appearance […]

Severe ME: I Had To Fight The People Supposed To Help Me

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    by Sam* In ME Australia.    Sam (*not her real name) is a teenager living in Australia’s largest city without access to treatment to help her. Sam was prescribed graded exercise therapy (GET) and cognitive behavioural therapy (CBT) repeatedly. After doing GET, Sam became housebound. Sam now has very severe ME and says […]

Better Treatment Needed For 77,000 British Columbians With ME

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  By Sue Khazaie in The Province.   Imagine you are living the life of your dreams. You have a great job, a happy marriage and love traveling. And then you get sick. Really sick. Soon you can’t work, go out, or perform basic household chores. Within weeks, you are bedridden and totally dependent on […]

We Cannot Continue To Let Doctors ‘Gaslight’ Chronic Illness Patients

Gaslighting

    By Siobhan Simper in The Mighty.   Author’s warning: This post contains experiences of gaslighting and abuse. Recently, I saw an all-too-common meme on social media: the inspirational disabled person. The image was of a Paralympic horse rider, with the caption, “no excuses.” Much has been written about the problematic nature of disability “inspiration porn.” What shocked me was when I […]

Opera And Disability

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  Q&A with Jacqueline Ko.   May 12th is the International Awareness Day for chronic neuroimmune diseases. To shine a light on these extremely prevalent yet little-known conditions, I caught up with performer, producer and disability advocate Jacqueline Ko, an award-winning Canadian soprano and co-founder of Opera Mariposa who has lived with the neuroimmune disease […]

He Pioneered Technology That Fueled The Human Genome Project. Now His Greatest Challenge Is Curing His Own Son

Ron Davis

    By Ryan Prior CNN.   (CNN)Multiple times a day, every day, Ron Davis sits with his head bowed, waiting outside his son’s bedroom for a subtle signal that it’s all right to come in. He opens the door to the space where Whitney has spent most of the last decade. Whitney lies motionless […]

Adelaide Oval Lights Up In Blue For ME Awareness Week

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    By Jac Creedon in ME Australia.    Since 2015, Adelaide Oval in South Australia has been lit up in blue in recognition of ME Awareness. This year, it will be illuminated on Thursday May 9. It has been organised every year by Jac Creedon, who has had ME for 28 years. Jac lives […]

Why ME And CFS Instead Of ME/CFS ?

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    by Sasha Nimmo in ME Australia.  Why is it important to use ME and CFS? It’s time, Australia needs to leave behind ME/CFS and CFS/ME and adopt the International Consensus Criteria for ME. ‘ME and CFS’ captures an audience who have been diagnosed with chronic fatigue syndrome, as some patients who have been diagnosed with CFS […]

19 Things People With ME/CFS Wish Others Understood

Lonely

      By Paige Wyant in The Mighty.   Have you ever told someone about your ME/CFS, only for them to respond, “I understand, I’m always tired, too”? Though friends and loved ones may be well-intentioned, it can be frustrating and hurtful when they just don’t “get it.” The reality is that ME/CFS is […]

Understanding ME And Chronic Fatigue Syndrome In Children

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  By Claire Tripp in teachwire.   Longterm and little-understood illnesses like ME, or chronic fatigue syndrome, can leave pupils misdiagnosed, isolated and forgotten, so it pays to spot the signs, says Claire Tripp…   You leave work with “Miss! Miss!” still echoing in your ears, an armful of marking, and thinking of Ellie. Once […]

The £4.2 Million Worth PACE Trial – High Hopes, Deep Fall

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    From #FindME.   Do you trust your GP to give you the right diagnosis and treatment you need whenever you feel ill? Yes, most people do! But what if your GP fails to give an accurate diagnosis and worse, prescribes the wrong therapy? This is exactly what happened in the UK based on […]

‘Hard To Cope’ Mum-Of-Two With Chronic Fatigue Says Condition Is Triggered By Her Noisy Kids

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  By John Siddle and Gemma Mullin, Digital Health Reporter in The Sun.   Katy Beardsworth has ME and has to lie down in a dark room when her kids start being loud. Katy Beardsworth, 38, has ME – a cruel illness which presents as unrelenting exhaustion and profound pain. The deeply misunderstood neurological condition […]

You Don’t Look Sick: ‘People Say ME Isn’t Real But Trust Me – I Deal With It Everyday’

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    By Laura Abernethy in The Metro.   Over 13.9 million people living in the UK are disabled, but many people live with conditions that you can’t always see. They struggle with symptoms every day but when you see them in the street, you would have no idea that anything is wrong. You Don’t […]

7 Things All Chronically Ill Dancers Can Relate To

Pippa

  From Life Of Pippa.   Since being diagnosed with my long-term condition, I’ve realised that there’s a huge correlation between professional dance and chronic illness. For me, it was ballet. I trained intensively all throughout my childhood and early teens and was lucky to enjoy some ultimate highs and accomplishments, until (in a nutshell) […]

Test Can Spot Whether You Have Chronic Fatigue Syndrome, Stanford And UC Scientists Say

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  By Cathie Anderson in The Tribune.   Researchers at Stanford University and UC Irvine appear close to giving people with chronic fatigue syndrome something they have wanted for decades: a biological test that diagnoses their disease, according to a research paper published Monday in the Proceedings of the National Academy of Sciences. Those who suffer from […]

Interview Part 1 – What Does ME Feel Like ?

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  From Find Millions Missing.   Esme and Millie learned over the years how to cope with ME. Esme (21) is a medical student who was diagnosed with ME when she was in school. Millie (23) was diagnosed with 17, right before her final school exams before she headed off to University in England. Both […]

M.E. – Just Cut And Paste…..

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  M.E. – JUST CUT AND PASTE…..   Hair’s a mess, can’t get dressed Can I shower, that’s the test Done ok, the shoes are on Now where the hell’s my energy gone? Another day has been a waste Another day just cut and paste.   Can’t get the hang of doing nowt Want to […]

8 Common Myths About ME/CFS Debunked

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  By Jo Moss in A Journey Through The Fog.   For ME Awareness month I want to tackle some of the common misconceptions surrounding this debilitating illness. The lack of belief and ignorance surrounding ME is deep-rooted and causes significant harm to patients worldwide. Due to the disbelief, misconceptions, and stigma that are attached […]

‘My Daughter, 21, Who Died Weighing Five-And-A-Half Stone, Had ME On Her Death Certificate – Yet Some Still Say It’s Not Real’

Merryn Crofts

    By Claudia Tanner, in iNews.   The mother of Merryn Crofts believes attitudes about the disease haven’t changed since her daughter’s death two years ago. Clare Norton struggles to talk about the day her “beautiful” and “energetic” daughter took her last breaths just days after her 21st birthday. As a mother, she’d felt helpless […]

Probing The Holes In MUS

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    By Spoonseeker in spoonseeker.com.   This is the second in a new series of posts about medically unexplained symptoms (MUS). The first of these, A Morass of MUS, appeared last time. However, I first looked at medically unexplained symptoms over two years ago in a post called Medically Unexplained Assumptions. In this, I travelled all […]

Myalgic Encephalomyelitis Or Chronic Fatigue Syndrome: How Could The Illness Develop ?

Research

  By Gerwyn Morris, Michael Maes, Michael Berk and Basant K. Puri in Springer Link.   Abstract. A model of the development and progression of chronic fatigue syndrome (myalgic encephalomyelitis), the aetiology of which is currently unknown, is put forward, starting with a consideration of the post-infection role of damage-associated molecular patterns and the development of chronic inflammatory, oxidative and […]

Who Gets CFS/ME And How Does It Start ?

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    From #FindME.   Chronic Fatigue Syndrome (CFS), also known as Myalgic Encephalomyelitis (ME), can affect anyone, even children. Fibromyalgia is a related disease that affects the joins in the body, causing excruciating pain. CFS/ME is most common in women and tends to develop between your mid-20s and mid-40s. Famous celebrities, such as 71-year-old […]

Boost For People With ME And Chronic Fatigue Syndrome Thanks To Australian Parliament

Australia

    by Sasha Nimmo The Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) patient and research communities are delighted the Australian parliament officially recognise the urgent need for biomedical research in the field. Senator Anne Urquhart, a Tasmanian Labor senator, (on behalf of her colleague Senator Helen Polley) and Senator Stirling Griff, a Centre […]

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