Invisible / Chronic Illness

Trial By Error: The Danish ME Association’s Open Letter

David Tuller

  By David Tuller in Trial By Error.   The Danish ME Association has sent and posted the following open letter to “Danish health politicians,” with a very impressive list of international signatories. It seemed important to give this letter wide circulation. (Note that footnotes 4 and 5 are linked to the names of two […]

Labour Leadership: Starmer Backs Calls For Free Social Care

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  By John Pring in Disability News Service.   The MP leading the race to be Labour’s next leader has become the first candidate to back calls by disabled people’s groups for the introduction of free social care, funded by national progressive taxation. Sir Keir Starmer, Labour’s shadow Brexit secretary, said he supported the motion passed […]

The Identity Crisis: Am I Defined By Chronic Illness ?

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      By Rhiann Johns in Brain Lesion And Me.   Often chronic illness sneaks into your life, like a thief in the night. It takes everything that once defined us; stealing our identity and imagined futures. For those, like me who have suffered from symptoms associated with illness for most of their life, […]

Changes Promised To Cut Stress Of PIP Assessments

Benefits

  By Lauren Harte in the Belfast Telegraph.   Communities Minister Deirdre Hargey has vowed to improve the process for those applying for Personal Independence Payments (PIP) following a call to make the troubled system “fair and accessible for those who genuinely need it”. When PIP was introduced in Northern Ireland in 2016, replacing Disability […]

To Those Who Find My Illness ‘Hard To Understand’ When They See Me Smiling

Chronic

    By Tiffany Early in The Mighty.   My husband and I had a conversation about how others perceive my illness the other day. It wasn’t a confrontational conversation — it was more the random musings that happen when you’re waiting for dinner to come out of the oven. Joe mentioned that a mutual friend had once […]

You Don’t Look Sick: What It’s Like Living With An Invisible Illness

Invisible Illness

By Laura Abernethy in Metro.   A year ago, we launched the You Don’t Look Series. Over the last 12 months, we’ve chatted to people from across the UK about their experiences of living with an invisible illness. Most people have symptoms almost every day but because their condition is hard to see, they are […]

Callng All York Businesses !

Business

  Do you know of a business in York that would be happy to put up an A5 poster on their premises with a bit of info about Myalgic Encephalomyelitis (ME) to help raise a bit of awareness ? This is an illness that could well be affecting their workforce today. If so please get […]

Myalgic Encephalomyelitis (ME) In The Young. Time To Repent

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  By Ola Didrik Saugstad in Wiley Online Library.   Myalgic encephalomyelitis (ME)/ Chronic fatigue syndrome (CFS) is a complex disease with symptoms from multiple organ systems. The severity of these symptoms ranges from mild to severe with the most severely affected confined to a dark room to achieve sensory deprivation. Two incidence peaks have been […]

French Researchers Discover A New Component In Blood

Blood Cells

    By Iliriana Bisha Tagani MD in Gilmore Health News.   French researchers discovered the presence of complete and functional mitochondria in the bloodstream. Ultimately, this discovery may lead to better diagnosis, monitoring, and treatment of many diseases, including some cancers.   Our blood consists of red and white blood cells and platelets bathed in […]

Miles Without Stiles Easy Routes

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    From Lake District National Park.   What are Miles without Stiles? These are 48 routes across the National Park suitable for people with limited mobility, including wheelchair users, families with pushchairs, and the visually impaired. Use the interactive map below to explore the routes available or choose from the menu on the left. Distances […]

“Left Out”: An ME/CFS Movie Of Commitment, Hope And Despair

Fluge and Mella

  By Cort Johnson in Health Rising.   It was a project birthed in hope. Pal Schaathun, a Norwegian filmmaker would document what he hoped might be the end of chronic fatigue syndrome (ME/CFS).  That, unfortunately, turned out not to be but Schaathun ended up documenting – in strikingly beautiful fashion – the next best […]

Whatever You Do Today, Let It Be Enough

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    By Jo Moss in A Journey Through The Fog.   I wrote this post especially for ProHealth Inspirational Corner and it first appeared there on the 11th March 2019. “Your worth is not measured by your productivity” We live in a society that teaches us that unless we are pushing ourselves outside our comfort zone, […]

Support For ‘Amazing’ Campaigner Whose Vital Legal Case Could Help Thousands

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By John Pring in Disability News.   Disabled campaigners travelled from across the country this week to show support for a fellow activist as she took on justice ministers in the high court over the ruinous costs disabled people can face when they take disability discrimination cases. If she wins, Esther Leighton could give hope to thousands […]

Myalgic Encephalomyelitis (ME) In The Young. Time To Repent

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 By Ola Didrik Saugstad in Wiley Online Library. Myalgic encephalomyelitis (ME)/ Chronic fatigue syndrome (CFS) is a complex disease with symptoms from multiple organ systems. The severity of these symptoms ranges from mild to severe with the most severely affected confined to a dark room to achieve sensory deprivation. Two incidence peaks have been described between […]

Meet The Researchers Behind A New Trial Into ME

Research

    The Quadram Institute on the Norwich Research Park is holding a public meeting to talk about their ongoing research into myalgic encephalomyelitis (ME or ME/CFS). The event will also be a chance to give your opinions about the planned future clinical trial into a new form of treatment that targets gut microbes for […]

What No One Tells You About Being Housebound

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    By Hannah Radenkova in Super Pooped: Adventures for the Exhausted.   Whether you’re housebound some or all of the time, here are some things you might come across. 1. Time loses all meaning. The five years I’ve been housebound feels simultaneously like no time at all, and an eternity. I regularly get my own […]

Schools Are Failing Legal Duties On Accessibility Plans, Says Report

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    By John Pring in Disability News Service.   Secondary schools across England are breaching their legal duty to publish plans showing how they will improve access for disabled pupils, according to new research published today (Thursday). The research, carried out on behalf of The Alliance for Inclusive Education (ALLFIE), says the government, the education watchdog […]

You Don’t Look Sick: ‘You Might Think I Look Better But I Still Feel Horrible Every Day’

Frustration Chronic Illness

By Laura Abernethy in The Metro. Amy Norris, 23, from Southampton has postural orthostatic tachycardia syndrome (PoTS) and chronic fatigue syndrome (also known as myalgic encephalomyelitis) (CFS/ME). As part of our, You Don’t Look Sick series about invisible illnesses, Amy chatted to Metro.co.uk about living with both conditions and how most people still don’t understand chronic […]

“The Tompkins Effect” at Harvard University: More Than Just An ME/CFS Research Center

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  By Cort Johnson in Health Rising.   The Ron Tompkins Effect Ron Tompkins had recently come back from a meeting with over a dozen MD’s and specialists from Mass General Hospital who’d evinced a strong interest in ME/CFS. Dr. Bateman has said it’s easy to get researchers, at least, interested in this disease but […]

Challenging Insensitive Comments And “Who Has It Worse” Competitions

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      By Jo Moss in A Journey Through The Fog.   “Life is not a competition. Life is about helping and inspiring others so we can each reach our potential.” Does anyone else feel like they have to bite their tongue a lot? Do you hide a lot of what you are feeling […]

Judge’s PIP Comments Suggest Thousands Have Had Claims Wrongly Stopped

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  By John Pring in Disability News Service.   Thousands of disabled people could have had their benefit claims stopped unlawfully, campaigners believe, after a judge found that letters sent out by government contractors were failing to stress the serious consequences of failing to attend a face-to-face assessment. Upper tribunal judge Nicholas Wikeley said he […]

The Illusion You Will Be Forever Able Bodied And The Limits Of Empathy

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  By James C Coyne in Medium.   This is an edit of something I wrote in 2016, which I return to read every now and then. Sometimes I tinker with it, like now. I wrote it soon after I first became a professional advocating for patients with chronic fatigue syndrome and myalgic encephalomyelitis, a set […]

Noise And ME

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    NOISE AND ME My ME sensory radar Has really taken hold It’s caused my life to change, In a way that’s strange And not just because I’m old ! Noise and sounds now cripple me In ways some won’t believe The click of a door Can get right to my core In a […]

Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Initiative

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    From Stanford Medicine   Welcome The ME/CFS Initiative conducts extensive clinical research in an effort to improve diagnosis and treatment of this debilitating illness. Stanford Medicine has had great success in engaging and collaborating with nearly 50 researchers across Stanford University and beyond. Together, they have discovered various potential biomarkers that have confirmed […]

#MEAction Scotland’s Petition: Progress Continues

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  From Meaction Scotland.   On Thursday 19th December, 2019 the Scottish Parliament’s Public Petitions Committee met to continue its consideration of  #MEAction Scotland’s petition, PE1690, which calls for a review of treatment of people with myalgic encephalomyelitis (ME) in Scotland. Appearing before the committee to give evidence were Jeane Freeman, the Scottish Government’s Cabinet Secretary for […]

The Grace Charity For ME

ME

    From The Grace Charity site.   If you have M.E., the following might help you practically: G.P. If anyone can recommend good GPs in the Maidstone area for M.E. sufferers, please let us know. Try to get a supportive G.P. They are the gateway to much needed benefits. If you can’t get a […]

Marcie Zinn Was A Force For ME

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    From Meaction. We are deeply saddened by the sudden death of Marcie Zinn, PhD, who was a dedicated researcher, advocate and person with myalgic encephalomyelitis (ME). Marcie died of sudden heart failure on Dec. 28, 2019. Marcie and her husband, Mark, founded the Neurocognitive Research Institute (NCRI), a non-profit that specializes in 3D-mapping of the […]

The Temporary ME/CFS And Fibromyalgia Recovery Stories – What Can They Tell Us ?

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  By Cort Johnson in Health Rising.   In 2015, Dean Echenberg, MD, PhD, a former public health official and Director of Disease Control in San Francisco at the height of the HIV/AIDS epidemic, had a question. His own course of ME/CFS had been anything but smooth. Echenberg had experienced years of illness punctuated sometimes […]

Scope Accused Of ‘Exploitation’ After Seeking Disabled Writer To Work For Free

Writing

    By John Pring in Disability News Service.   A disability charity has been accused of “exploitative” and “disgraceful” behaviour after asking disabled journalists to write an article for its website without payment. The charity Scope sent out a message on social media this week seeking a “disability blogger” who could write an article […]

Developing Chronic Fatigue Taught Me To Live In The Moment

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  By Chloe Cooper in Voices.   In early January 2019, I was doing what I do every year – reviewing my achievements of the past 12 months and setting my goals for the year to come. Like countless others who go through the same process, this felt like an essential step to becoming the […]

Mayo Clinic Research Discovers A Molecular Switch For Repairing Central Nervous System Disorders

Research

  From The Mayo Clinic.   ROCHESTER, Minn. — A molecular switch has the ability to turn on a substance in animals that repairs neurological damage in disorders such as multiple sclerosis (MS), Mayo Clinic researchers discovered. The early research in animal models could advance an already approved Food and Drug Administration therapy and also could lead to […]

30 Years Beyond Comprehension

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  From A Life Hidden.   Today is the 30th anniversary of the day I became ill.  How surreal those words sound, even after three decades spent adjusting to them.  My illness now accounts for three quarters of my life: a span of time so vast that it defies comprehension. When I fell ill as […]

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 do, wanna […]

The Hollow Man

Lost

  By Andrew O’Connor in ABC News.   The catastrophic collapse of Tony Wallace’s life began slowly and silently. An episode of flu. A persistent illness. A feeling of fatigue. A sense something was not so much wrong, as not quite right. Over time, his ambiguous symptoms have morphed into a condition that defies medical […]

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