Severe M.E Day - 8th of August 2020

"
A day to remember everyone who is suffering or who has ever suffered from Severe and Very Severe Myalgic Encephalomyelitis.
Severe ME Understanding & Remembrance Day : This day aims to bring public attention to the illness for the sake of all those presently suffering from Severe Myalgic Encephalomyelitis and to remember all those who have died from ME.

A day to honour the strength of spirit of all those who have endured and continue to endure decades of suffering and profound physical dysfunction and yet receive little, or no recognition or help, but rather continue to experience gross misrepresentation and misinterpretation of their illness and profound disability."

"
25% ME Group 25 year anniversary celebration to raise awareness and make people with severe ME visible
The 25% ME Group celebrates its 25th anniversary this year. As part of this, we want to feature sufferers’ short stories/pics of how the illness affects them."

https://25megroup.org/severe-me-day-2020

 

MEA

Raising Awareness of Severe ME – A Call for Your Case Studies|15th July 2020
"
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, 3rd August.

We’re particularly interested in hearing from people with Severe M.E. and their experiences of carers, and the care needed for someone with severe ME.

If you or your carer would like to be involved, you must be comfortable sharing your identity and photographs in either the news-media (newspapers) and on the ME Association website and social media platforms.

If interested, please get in touch by Wednesday 25th July, and provide the following information:

• Your name, age, where you live, and confirm that you have or have had severe M.E.
• A short summary of your story and experiences: in no more than 200 words.
• Attach good quality photographs of yourself that you feel best represents your current circumstances.
• Title your email ‘Severe ME Campaign’ and send to feedback@meassociation.org.uk

"
https://meassociation.org.uk/2020/0...e-a-call-for-your-case-studies15th-july-2020/

 

Merged thread

Severe ME day: August 8, 2020
https://twitter.com/user/status/1289546372853780481

 

I wasn't sure where to put this. Kara Jane has severe ME and she has recorded a single and an album.
The single has been released today. Baby Breathe. The album Its Still M.E. will be released on Aug 8th.
Money raised will go towards establishing a post mortem research facility for those that die with or from ME .

https://karajanesings.com


one song on the album she says belongs to the ME community - Remember Us.

 

threads
https://www.s4me.info/threads/a-life-hidden-this-is-love-an-appeal-to-musicians.15101
https://www.s4me.info/threads/kara-jane-new-website.15598/

 

A special post for severe ME week on Kara Jane’s album, which is out on Saturday.

The album “is an expression of Kara as a person, and a powerful voice on behalf of all with severe ME. It is a beautiful musical creation that stands confidently alongside the works of more established artists.

“When one considers that it originated from a place of crippling suffering, in the face of a devastating prognosis, it is nothing short of musical alchemy.”

Released on Saturday - severe ME awareness day - the album is raising money for research into severe ME. Do have a listen, if you are able. Kara’s music is absolutely beautiful.
https://alifehidden.com/2020/08/05/alchemy/

 

https://twitter.com/user/status/1290666351779078153

 

another article on Kara Jane by the BBC posted today
https://www.bbc.co.uk/news/uk-england-derbyshire-53648296

 

https://twitter.com/user/status/1292055414654341121

 

https://twitter.com/user/status/1291998710772064258

 

https://twitter.com/user/status/1292119448447483914