Category Archives: News

Severe ME Day: Caring for someone with Severe M.E. by Sarah Boothby | 08 August 2019

Anonymity is a cover for the disappointment that is only overwhelmed by the relentless exhaustion of M.E.

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.

Severe ME Day: ‘LIFE’ with Very Severe M.E. – A poem by Natasha Adams | 08 August 2019

Day after day this fragile hope is crushed, shattered, ground down like broken glass. Monotony, drudgery, despair! How can I escape?

Severe ME Day: A Call to Act with Truth and Integrity by Greg Crowhurst | 08 August 2019

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.

The ME Show Special: Severe M.E. and Benefits with Gary Burgess | 08 August 2019

We are delighted that Gary Burgess has recorded a special episode that considers the Real impact of Severe M.E. with Jo Moss and Ann Innes.

Navigating Disability Benefits – Hints, Tips and Information Resources | 07 August 2019

Navigating the benefits system can be very challenging with M.E. We hope that this resource will improve your chance of a successful outcome.

We need to speak up for those who cannot by Charlotte Stephens | 07 August 2019

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.

The Care Act and M.E. – Positive Decision by the Ombudsman and Case Study| 06 August 2019

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

My daughter and the pervasive dangers of PACE in paediatric M.E. by Adam Johnson | 06 August 2019

Zoe was put under surveillance – monitors, lights on constantly, nurses watching her eat and humiliatingly insisting on escorting her to the loo…

Tips for coping with Severe M.E. by Laura Brockway | 06 August 2019

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.

Announcement: easyfundraising and Amazon Smile | 05 August 2019

Instead of using easyfundraising when buying things on Amazon, you now need to register with Amazon Smile.

Fundraising Feature: NCS Stamford are doing an incredible amount for M.E. | 05 August 2019

NCS Stamford have set themselves an ambitious 3-day target and we wish them all the best of luck.

ME Association July Summary of ME/CFS Published Research | 05 August 2019

We’ve updated the central Research Index and feature 13 ME/CFS research studies from July 2019.

MEA Website Survey: Illness Severity and Definitions | 05 August 2019

This month we’re asking about your level of illness severity and for a discussion around definitions.

Introducing Severe M.E. Week from the ME Association | 05 August 2019

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

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