Personal Stories

What Freedom Day Means To The Disabled

Helen Jones explains what ‘Freedom Day’ means for disabled people On so called ‘Freedom Day’, instead of celebratory dancing and drinking, many disabled people were reacting with horror and retreating back into a state of isolation. In fact, one in seven disabled people plan to keep shielding despite the lack of support available from the government to do […]

“Blue Badge Changes Offers Little For Severely Disabled”

From York Press. YORK council now offers consultation with Blue Badge holders on the radical changes in the plan for disabled parking in the city. Or have the decisions already been made? This new plan offers very little for those severely disabled people, who, once parked, require a wheelchair or other mobility device to continue […]

Disabled Councillors Blocked From Accessibility Vote — Because They Are Disabled

By Jasmine Andersson in iNews. A council ballot turned sour when two councillors were blocked from voting in an accessibility debate — because they are disabled. Councillors Katie Lomas and Ashley Mason were told by York City Council they had “a prejudicial interest” in vote on improving accessibility in the town centre because they are Blue Badge holders. […]

We Are Failing People With Very Severe ME/CFS

By Amber Ella in Health Rising. The point of no return. I have advocated for three people with very severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in the past few years. Each time I experience the same sense of frustration, dread, and panic over my inability to connect the dots required to pull someone back from the […]

Open Letter: Being A Carer For My Wife With ME

From the ME and Me Blog. Martin met his wife over a decade ago, he’s watched as ME attacks the person he loves. His knowledge of ME has grown over the years and he’s now Lex’s husband and carer. Read his open letter below. By Martin Bates. Hi all, I met Lex 11 years ago […]

‘I Felt Betrayed’: How Covid Research Could Help Patients Living With Chronic Fatigue Syndrome

By Christina Frangou in The Guardian. In the fall of 2016, Ashanti Daniel, a nurse in Beverly Hills, California, went to an infectious disease physician looking for answers about a weird illness she couldn’t shake. After falling sick with a virus four months earlier, she still felt too tired to stand up in the shower. The appointment […]

NHS Data Gathering: Government Plans To Collect And Share Health Records Are Hugely Concerning – Here’s Why

By Itzelle A Medina in The Conversation. The GP records of England’s 61 million NHS users are set to be gathered into a new database which third parties will be able to access. The new data-sharing scheme, called General Practice Data for Planning and Research (GPDPR), will “pseudnoymise” the patient data it collects and shares. NHS […]

The Education Of An Unlikely ME Advocate

By Art Mirin in Health Rising. Art Mirin seemed hardly the person to lead a movement.  A retired mathematician who’d been creating advanced climatological models at the famed Lawrence Livermore National Laboratory in California, Art had never done advocacy before. He had a sick daughter, though, and he wanted to contribute.  A meeting at an […]

When Disease Research Gets Personal

By Claire Concannon in RNZ. Looking for answers Warren Tate hadn’t heard of the disease that would become such a big part of his life until his 14 year-old daughter, got glandular fever. Instead of recovering normally from this viral infection, her fatigue, pain and noise sensitivity symptoms worsened, and, months later, after ruling out […]

Life With ME On The Dutch Benefits Hamster Wheel

By Rob O’Brien. Two years ago, my Dutch father-in-law dropped a casual reference to the British award-winning film I, Daniel Blake after hearing about our latest round with the Dutch government over sick pay benefits. “It sounds a lot like that British film where he gets trapped in the system,” he said. I thought about this when […]

Noise And M.E.

I think in the last couple of weeks it’s been decided that every advert on TV needs the loudest possible backtrack, just for the hell of it. It reminded me of this…. NOISE AND M.E. My M.E. sensory radarHas really taken holdIt’s caused my life to change,In a way that’s strangeAnd not just because I’m […]

Department Of Health And Social Care – Must Do Better

By Sally Callow in Despite being extra unwell with Covid19/Long Covid myself, I have been beavering away in the background (as much as my weary M.E-slammed body would allow) to try and make ‘the powers that be’ as aware as possible that Covid19 had the potential to cause chronic illness in many people during […]

Start A Ripple

Start A Ripple Taught as kids to always careIf you had a friend, to always be thereGive up your seat, without a fussCarry the lady’s shopping off the bus Add a little something to someone’s dayGive a smile as you pass their wayThe little nod or smile you shareMight be enough to show that you […]

Can Long-Covid Be Cured With The Mind: Expert Patient Or Nutty Professor ?

By Dr Keith Geraghty on David F Marks site. I am a research fellow working from the University of Manchester Centre for Primary Care. A major focus of my work is on medically unexplained symptoms and illness. I promote evidence-based medicine and psychology, so like a detective, I spend a lot of my time discerning […]

Open Letters To Healthcare Professionals From People With ME/CFS – Part 4 Lianne

From The ME Association. Against the background of a new NICE Clinical Guideline for ME/CFS (18 August 2021), which has the potential to improve healthcare provision for people with this condition, we have been focusing on health and social care and asking about your recent experiences, what it is you want from the NHS and […]

‘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’

By Claudia Tanner in iNews. 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 as she watched Merryn’s agonising six-year fight with severe myalgic encephalomyelitis, known as ME. The disease had left her bed-bound for the […]

It’s Not You, It’s M.E.

It’s Not You, It’s M.E. When we first started outWide eyed at the coming yearsWe were so strongWe just bowled alongNo worries, no cares, no fears. Now times have changedWe’re growing apartBody and soulIt’s breaking my heart It’s such a sad fact,You no longer reactTo what I want to doYou don’t hear my wordsIt’s just […]

M.E. And My List

M.E. And My List The eyes they slowly openA restless night behindSleep didn’t want to come my wayTo rest my buzzing mind I gently rise to find my feetHope the strength is there to greetMy legs like stilts, … feelingI fall,…… to stare up at the ceiling It’s gonna be another dayWhere M.E. has its […]

The Guilt Of M.E.

The Guilt of M.E. When the beast descends we know the scoreStrength and hope go through the floorWe’ve all been on this road beforeAnother day of guilt Want to take my part in lifeWant to spend some time with wifeWant to cause no further strifeAnother day of guilt Said I’d try and meet with friendsMissed […]

I Already Have A Job… Getting Through The Day

From Chronic Illness Inclusion. Our latest Report The ‘I already have a job…’ report, by Chronic Illness Inclusion and Leeds University Business School, sets out how government, employers and the benefits system are failing millions of people in the UK with Energy Limiting Chronic Illnesses – (ELCIs). Although one-in-three disabled people of working age experiences problems […]

Living With ME/CFS: The Debilitating, Invisible Illness Stealing Women’s Energy

By Lauren Clark in Women’s Health. Gym at 6.30am followed by a G&T 12 hours later. For women who want to live life at their optimum, energy is currency. So, when an illness strikes that robs you of it, you’re left feeling not only devastated, but invisible, too. Here, one writer shares how witnessing up […]

My M.E. Storm

MY M.E. STORM I can feel the storm clouds formingAll around my headI should have stopped my ‘doing’And rested more instead. The soft patter of the raindropsThat turn into a thudMy mind then slows as the downpour growsTurning every thought to mud. My scrambled brainIs like thundering rainI cower from the merest lightLike a laser […]

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