ME Essential Magazine and the Christmas Supplement will be sent out to ME Association members this week. We hope there is something for everyone!
Tag: Severe ME
ME and Post-Exertional Malaise: “It is much more than fatigue and stiffness…”
We hear from someone with severe ME who describes what Post-Exertional Malaise feels like and the measures that can help when in this situation…
What do you think about the new NICE Clinical Guideline on ME/CFS?
The NICE stakeholder consultation process begins today. You can take part and help produce the new clinical guideline on ME/CFS…
ME Association New Free Leaflet – The Importance of Early & Accurate Diagnosis in ME/CFS
A new FREE 6-page leaflet that helps determine what is required to make an early and accurate diagnosis of ME/CFS.
The ME Association Pneumonia and the Pneumococcal vaccine – do you need this protection?
Dr Shepherd answers a question about the pneumonia vaccine and provides the information you need to make an informed decision.
Can you help Cornwall’s NHS ME/CFS Specialist Service find a medical consultant to join their team?
Having a consultant physician as part of a ME/CFS clinical team is essential. This is a fantastic opportunity to join one of the best NHS services in the country.
Choose a Lou Wildish painting and put colour back into your life!
Lou Wildish has put a selection of her unique art into a new online gallery and is giving a donation from each sale to the ME Association.
Sonja’s mile a day for the MEA keeps her worry at bay
“I try to walk a mile a day. There are some days that my legs and brain don’t quite connect. That’s when it becomes quite interesting!”
Merryn’s Story: Severe ME Week 2020
Caring for someone with Very Severe M.E is both an honour, a privilege and a responsibility so difficult it is similar to walking through a field of landmines, not knowing if the next step you take no matter how important and necessary is going to have devastating consequences. My name is Clare and I was […]
Severe ME Week 2020: Sophia’s Story
The 8th August is Understanding & Remembrance Day for Severe Myalgic Encephalomyelitis, also known as Severe ME Day. It is held on the birthdate of Sophia Mirza, who was the first person in the UK to have their cause of death registered as Very Severe ME. Unfortunately, she is not the only one who’s died […]
Severe ME: Why is improvement subject to such harsh judgement and not celebrated?
“Having M.E. robs us of just about everything, but not the ability to be supportive or kind. We are a community, and it should be us against the world not us against each other.”
My Severe ME by Alison Love
It all started for me in 1992, when I was 29. I got pneumonia and pleurisy, was in bed for a month and there began my nightmare. I developed skin rashes and inflammation in my ribs, spreading all over. I was diagnosed with Lupus. A year later I was suffering attacks of muscle pain, fevers […]
The Untold Stories: Severe ME Week 2020
We asked those who suffer with Severe M.E if they would like to submit their stories to be published on the ME Association website blog.
How it feels to have Very Severe M.E. by Ruth Braham
“It is incessant, inescapable torture. You are trapped. Completely powerless. You’re in agony with countless unbearable symptoms…”
Jessica Taylor-Bearman wins The People’s Book Prize!
‘A Girl Behind Dark Glasses’ has beaten 13 other books on the short list to win an award voted by readers themselves…
Raising Awareness of Severe ME – A Call for Your Case Studies|15th July 2020
Katie Meehan, Social Media Manager In the run-up to Severe M.E. Week (3rd August), we’re looking for people with Severe M.E. who would like to tell their stories. We want to talk about the key issues that affect arguably the most neglected section of our community, and plan on raising awareness throughout the week commencing Monday, […]
The ME Association End of Week Research Round-up
Severe ME features in the two studies published this week: suggestions for healthcare improvements and CPET testing that confirms poor exercise capacity.
ME Awareness: “These lost years have been a grieving process; a loss of a past life that seems so far away,” Naomi Gilchrist | 24 May 2020
“I hope that one day I will be able to use my lost years to help others by raising awareness of the plight of those living with M.E.”
ME Awareness: “I was living in a darkened room with my eyes shut for many long years,” Cheryl Russell | 23 May 2020
“It should have been the beginnings of my life instead it was the other way around. I was to lose all my 20’s and 30’s to this illness.”
ME Awareness Press Release: Mum of tragic teen with devastating illness speaks out about years lost in lockdown | 18 May 2020
“My daughter is so ill she has had to disengage with her education. She has been house-bound for three years and bed-bound for the majority of this time.”