myalgic encephalomyelitis

Talk To Me ….But Slowly

Talking

  TALK TO ME….BUT SLOWLY   I used to love the banter Noisy bar room chat Then when the beastly ME hit It put a stop to that   Noise is now my Kryptonite My Achilles’ heel is sound It’s not by choice That the tone of a voice Can knock me to the ground […]

The Severe ME Bedbound Activity Masterlist: Part 1

Severe ME

  By Sarah Stanton in Medium.   Living with conditions like severe ME is hard. Gold standard health recommendations like sunshine and exercise simply don’t apply to us. And most of the articles out there suggesting activities for bedbound people assume a higher level of functionality than we generally have. With that in mind, here […]

ME Research Summary

Research

  From ME Action.   Myalgic encephalomyelitis is a complex chronic disease that affects multiple body systems. While funding for research and clinical care remains a serious concern, there is now a growing body of literature that identifies and explicates dysfunction in the immune, neurological, and energy metabolism systems in people with ME. What follows […]

Disney Made Me Question My Disability

Life of Pippa

  From the Life Of Pippa Blog.   This piece was originally written for Scope’s online community, but I never got around to sharing it on my blog. It was this time last year that we were in Disneyland Paris living our very best lives, so here’s something of a throwback… Something I often consider is […]

Trial by Error: A Letter To Bristol about My Recent FOI Request; Update Added

David Tuller

    By David Tuller, DrPH   UPDATE: Within an hour or two of writing to Bristol, I received a response from the university’s director of legal services. Here’s what she wrote: Dear Dr Tuller Thank you for your email. The Information Rights team is making good progress on clearing the back log, your FOI […]

18 Songs That Were Written About Chronic Illness

listen-to-free-music-online-1167

    By Paige Wyant in The Mighty.   Music is often a source of comfort and emotional healing. Many people with chronic illness in particular find that certain songs or genres can be powerful in helping distract them from symptoms and cope with all the stresses and frustrations of life with a health condition. For Mighty […]

The Crash That Follows The Push Of ME/CFS And FM Awareness Day

Feeling_Fatigued_and_Drained_Ayurvedic_tips_to_Re-energize_Yourself

  By Jodie Smith in Phoenix Rising.   It’s been about a month since the ME/CFS community pulled out all the stops for our May 12 International ME/CFS and FM Awareness Day. I think we have a great deal to be proud of, and encouraged by. With each passing year this bunch of chronically ill […]

When Illness Makes You Give Up The Commitments And Activities You Love

hero_wide_640

  By Lexie in The Mighty.   I just made one of the hardest decisions I’ve ever had to make. Many of you can relate to my story. I’ve seen countless doctors, integrative general practitioners, naturopaths, chiropractors, and specialists over the last few years. When they couldn’t explain my symptoms, they diagnosed me with chronic […]

Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia: The Spinal Series #3

johnson_cort

  By Cort Johnson in Health Rising.   The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Could […]

When People Judge Me For Not Working Because Of My Chronic Pain

ChronicPainManagement

  By Lauren in The Mighty.   A “friend” recently said to me, “I may have a guy for you.” She knows I’m single and have been looking for someone special for a while now. We spoke over the phone and she asked, “What do you do? What do you keep busy with? I just […]

As I Age With ME

ME

  By Marianne Granger in #MEAction. In my forties I was moving forward fulfilling my drive to be a community organiser/communicator/coach (my day job) and also a screenwriter (a remnant of my earlier training and work as a stage actor). Being there for my grown children and reveling in the bliss of holding my grandchildren […]

The Best Thing I’ve Ever Done: Film Maker With ME Wants To Raise Awareness Of Hidden Illness

Film

  By Lucas Hill-Paul in SW Londoner.   A Herne Hill filmmaker hopes his short film This is ME will bring awareness to those living with a common invisible disability. Josh Pickup, 29, was diagnosed with myalgic encephalomyelitis (ME), which is also known as chronic fatigue syndrome, at the age of 21. ME is among the most […]

Caring For A Son With M.E.

Reflection

  From  Health and Social Care Alliance Scotland.   “My son is too ill to fight his cause but, as his mother, I will give it everything I’ve got” “Do they think it’s all in my head, Mum?”, my son quietly asked me as we left the GP surgery. “I can assure you, son, none of […]

Fit And Active Cardiff Woman Left Bedbound After Developing ME

Darkness

  From ITV News.   For the past year, 28-year-old Natalie Price has been living in darkness and silence. In 2014, she was diagnosed with myalgic encephalomyelitis, commonly known as ME or chronic fatigue syndrome. Sufferers complain of symptoms including extreme tiredness and fatigue, constant pain, extreme headaches and sensitivity to light and sounds. Since […]

Welcome To The June 2019 News Update For York Carers Centre

York Carers Centre

York Carers Centre news Thank You Volunteers It’s National Volunteers Week and we’d like to say a huge thank you to all of our committed volunteers, who generously offer their skills and time to help carers in York. From the board of trustees and office volunteers to those who help carers at groups across the […]

A Mother’s Story: Alem Matthees

Me Australia

  by Helen Donovan in ME Australia.   May 12 is Alem Matthee’s birthday. Around the world, people with ME, their friends, families and scientists are grateful for Alem’s work in getting trial data released, showing that graded exercise therapy and cognitive behavioural therapy did not improve health the way the study’s authors claimed. In […]

Rare Gene Mutations May Be Affecting Energy Levels In ME/CFS

Genetics

  By Cort Johnson in Health Rising.   Dr. Camille Birch has a PhD in biomedical engineering and hails from the Hudson Alpha Institute for Biotechnology at Huntsville, Alabama. Hudson Alpha, only 11 years old, is one of those new biotechnology efforts that’s using sophisticated bioinformatics to understand how our genes affect our health. Dr. […]

Why Are We So Quick To Judge ME/CFS Recovery Stories ?

Recovery

  From A Journey Through The Fog By Jo Moss.   As a community we are very good at supporting each other especially when one of our own is having a particularly bad time with their health. But one thing I’ve noticed, that I find disheartening, is that we don’t give people a safe platform […]

Parents And Children Missing From Their Lives Due To M.E.

Children

  From ME Action.   Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are missing precious days and years with their children due to the disease, and parents of children with ME are fighting to provide care for their sick children in a world where there […]

Do You Have ICC-ME And Other FAQs

Jen Unrest

  By Jennifer Brea.   I just wanted to respond to a few comments and questions raised in response to recent posts in this series. If you aren’t a part of the ME community, be forewarned, much of the following will be hard to follow! The first set of questions all circle the same core question: do […]

New Regulator Of Immune Responses Discovered

Research Study

  By The University of Leeds, published in EurekAlert !   Scientists have identified a new internal regulator that helps control the body’s response to fight infection. The discovery could be a target for new drugs to tackle autoimmune diseases, such as lupus and scleroderma, where healthy tissues are attacked by the body’s own immune […]

Telford Cyclist Takes On Epic Race To Help Teen With ME

Cycling

    From The Shropshire Star.   A cyclist will take on a challenging 100-mile race through woodlands in support of a bed bound 16-year-old with chronic fatigue. Kind-hearted Arry West, who is 44, will get on his bike for the epic Mountain Mayhem challenge on June 22 and 23 in aid of research into […]

Living With Chronic Fatigue Syndrome

KT King

  By Janet Harrison in The Yorkshire Post.   Living with ME can be severely life-limiting for those affected. KT King, 46, from Hessle, explains what it is like living with myalgic encephalomyelitis, sometimes known as Chronic Fatigue Syndrome. “I first became aware of ME aged 23 when I spent six months in bed after […]

Spinal Stenosis, Chronic Fatigue Syndrome (ME/CFS) And Fibromyalgia: The Spinal Series #3

Cort_Johnson

  By Cort Johnson in Health Rising.   The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Leader in the […]

The ‘Activity Hangover’ I Experience Because of Chronic Illness

chronic

  By Heather Wallace in The Mighty.   As someone who has recently moved to a new town and is trying to figure things out and find my groove, I have been out a lot more than I usually am, and I am paying for it. Having fibromyalgia means things are different for me now. Planning on going […]

The Scandal That Should Force Us To Reconsider Wellness Advice From Influencers

Wellness

    By Chris Rojek in The Conversation.   Former social media influencer and “wellness guru” Belle Gibson first caught public attention after claiming she cured herself of terminal cancer by rejecting conventional medicine in favour of a healthy diet and lifestyle. Her story was documented on a blog and social media, which became the basis for a successful book and […]

Results Of ME/CFS Supplement Poll

Supplements

      From Stories Out Loud.   This is an on-going poll of supplements that ME/CFS sufferers have tried. If you have (or have had) ME/CFS, please tell others your experience by voting. The more people who vote, the more useful it will be. This poll is only intended for supplements you can buy over the […]

21 People Describe What Sensory Overload Feels Like

Sensory

  By Melissa McGlensey in The Mighty.   Sensory overload happens when too much sensory stimulus is occurring at once — it can be triggered by a crowded room, a TV turned up too loud, strong aromas, fluorescent lighting — or a hundred other things. It’s often associated with certain diagnoses like autism, sensory processing disorder, chronic fatigue syndrome, fibromyalgia, post-traumatic […]

Myalgic Encephalomyelitis (ME/Chronic Fatigue Dyndrome), Does It Have A Biomechanical Component ?

cerebro-neurovascular

  By Kjetil Larsen in Trening Og Rehab.   Myalgic encephalomyelitis (ME) is one of medicine’s grand mysteries. Its etiology is not known, and patients afflicted are rarely documented to recover from their ailment. Its diffuse presentation includes many symptoms, which implies that ME is actually an «umbrella diagnosis» for several underlying problems. One of the problems […]

Struggling To Accept The Days When Illness Keeps Me From Doing Anything

zmbnq7ui6mu-jesse-bowser

  By Sally Doherty in The Mighty. I’ve had some of those awful days recently (they happen now and then, and more often than I’d like). You know the type: days when instead of your bed being somewhere that you go to rest, your bed becomes a prison that you can barely get out of. […]

We Desperately Need To Be Able To Diagnose ME At Earliest Stage

manxflag

  From IOM Today. News from The Isle of Man.   Former government minister Phil Gawne has issued a plea to the Health Minister to try harder to give people with ME the service they need. Mr Gawne was speaking after Health Minister David Ashford told the House of Keys last week that money allocated […]

Concerns About Craniocervical Instability Surgery In ME/CFS

Craniocervical-Junction-CCJ-1

By Michiel Tak in Science For ME.   CCI/AAI has little in common with ME/CFS Three ME/CFS patients, Jeff, Jennifer, and Matt, have reported spectacular improvements of their ME/CFS symptoms following surgical interventions for craniocervical instability (CCI) and atlantoaxial instability (AAI). CCI refers to increased mobility and instability of the craniocervical junction, the transition between […]

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 […]

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