Tag: Care

“It is incessant, inescapable torture. You are trapped. Completely powerless. You’re in agony with countless unbearable symptoms…”

In this introduction you will find a discussion about the need for suitable healthcare. Also background about severe and very severe M.E. and the support that is available.

Holly aged 9, has written about her mum, Chantalle, and explains what life is like being the daughter of a parent with M.E.

During the covid-19 lockdown, have you felt confident in the NHS’s ability to provide appropriate care and support as a person with ME/CFS?

The project comprises a series of highly recommended films. The latest video is about Severe and Very Severe ME/CFS.

“I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.”

I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years.

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.

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.

This ombudsman decision shines a light on the difficulty that some people with M.E. face in obtaining social care.

It is Severe ME Day on Thursday, but we think people severely affected deserve to have a full week dedicated to raising awareness.