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…
Bedbound
Bedbound Midlands singer releases debut album – and is ahead of Taylor Swift in chart!
Kara’s brilliant album, recorded from her sickbed, is performing exceptionally well in the charts. Download your copy today!
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.”
Music industry backs Kara Jane’s bid for MEA charity album chart success
The album is out on Saturday, but the single is out now! Help Kara raise funds for the Post-Mortem Tissue Bank to advance vital research into M.E.
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.
Kara Jane’s Musical Legacy – A new single and album will raise funds for vital research into ME!
Severe M.E. Week will get off to a rousing start when Kara Jane Spencer releases an album and single she recorded from bed!
“A post-viral tsunami is hitting our health services, yet in the UK it doesn’t even seem to be on the national agenda.”
Paul Garner, Professor at the Liverpool School of Tropical Medicine, talks about those who have not recovered from Covid-19.
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: The Lost Years: Missionary forced to give up vocation to do battle with ME | 18 May 2020
“I guess my Christian faith sustains me even though a lot of the time I feel like I’m just holding on with my fingertips.”
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.”
ME Awareness: “ME is a cruel illness and whether we have it mild or severe, we all still suffer,” by Naomi Gilchrist | 15 May 2020
“I’ve tried so many different methods to manage my symptoms. Medication helps to a degree alongside self-management techniques.”
ME Awareness: “My worst symptom is the physical weakness in my whole body,” by Maddy | 14 May 2020
“To be a disabled person does not mean that you must solely be a wheelchair user or someone with a physical deformity.”
ME Awareness: Let us contact your GP or other healthcare professional and keep them informed about ME | 13 May 2020
We want to increase the flow of information to GPs and other healthcare professionals about M.E.
ME Awareness: BBC News: Eastbourne mum with ME gets some life back after years lost in lockdown | 13 May 2020
Emma spent a decade in isolation at home after becoming severely ill with ME in 2004. She has been interviewed by the BBC together with Dr Shepherd.
ME Awareness: Dee’s Journey – From seizure, to brain surgery, to ME by Michael Govier | 11 May 2020
“It is incredible how strong she has been. I don’t think I would have coped with what Dee has experienced. She is my inspiration to keep on going and to support her on this journey.”
ME Awareness: Covid-19, Chronic Illness and Unacknowledged Loss by Joanne Hunt | 04 May 2020
“I suspect that the losses faced by many people with M.E. are in some ways uniquely different to almost every other patient group.”
Very Severe ME: It’s Time for Something New! By Greg Crowhurst | 16 August 2019
I have cared day and night for my wife who has lain in unspeakable torment, torture and agony, for twenty-six years.
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.
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.