I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years.
Tag Archives: SevereME
The MEA’s Welfare Rights Adviser provides her top-tips for people with M.E. when applying or renewing ESA and PIP.
The Telegraph: Narrow doors and no hoists: why disabled women can’t have life-saving cervical cancer screening with Jo Moss | 10 August 2019
All women are invited to cervical screening, and all women should be able to have access to a test.
Anonymity is a cover for the disappointment that is only overwhelmed by the relentless exhaustion of M.E.
The Sun: TRAPPED I’ve spent six years in a dark bedroom after virus triggered ME at 16 – but docs say it’s ‘all in my head’ | 09 August 2019
Laura, now 25, has chosen to lay bare the brutal reality of life with M.E. – which affects 250,000 people in the UK.
Severe ME Day: Life in a Nursing Home, Light Sensitivity and Very Severe M.E. by Eira Stuart | 08 August 2019
The nursing home was accommodating at first. However, they didn’t have any experience caring for M.E patients and I don’t think they fully realised the extent of the situation.
Day after day this fragile hope is crushed, shattered, ground down like broken glass. Monotony, drudgery, despair! How can I escape?
The impact of these last three decades of attempts to bury the serious disease M.E. under a sea of unrelated and vague “fatigue conditions” has been catastrophic for patients.
MEA Press Release: Severe ME Day – M.E. sufferers hit out at ‘humiliating’ DWP benefit assessments | 08 August 2019
“Many only succeed in obtaining the benefits they should be entitled to after going through a long and stressful appeal process.” Dr Charles Shepherd.
Navigating the benefits system can be very challenging with M.E. We hope that this resource will improve your chance of a successful outcome.
They don’t see the days spent in tears from being in so much pain and the frustration of not being able to spend time with them.
Wales Online: The frail teenager set to spend all of her summer holidays in her bedroom by Mark Smith | 07 August 2019
“Most days she is in bed, but we try to make life as normal as it can be for her. We have to stay strong for her.”
There’s No Point in me having a Netflix subscription or an Audible account by Anna Wood | 07 August 2019
Cognitive symptoms are common for everyone who has M.E., but it is the cognitive fatigue which disables me the most.
Zoe was put under surveillance – monitors, lights on constantly, nurses watching her eat and humiliatingly insisting on escorting her to the loo…
This year marks 10 years of M.E for me. With 6 1/2 of those being severe, I wanted to write a little something that might help others cope.
It is Severe ME Day on Thursday, but we think people severely affected deserve to have a full week dedicated to raising awareness.
Severe M.E. Day is approaching in August, and we are asking you to share your stories and experiences.