Severe ME Day, August 8 2023 and Severe ME week

A thread on this

 

From the ME Association:
#SevereMEWeek2023 - We need your stories, please.....

#SevereME Week is a time to raise awareness of those in the community who are often most neglected.

It is important that people understand that this condition can be extremely life-limiting – especially in the severest of cases – and it can be terribly distressing for the affected individual and their families.

Read how to contribute to #SevereMEWeek here:

https://www.meassociation.org.uk/vsme

 

One month ago to August 8, severe ME day.

I have a Pinterest board with 564 pins on severe ME/CFS here
https://www.pinterest.ie/tomkindlon/mecfs-severe-mecfs-mecfs-myalgic-encephalomyelitis/
that could be shared around. It mainly contains images but also links to videos and articles.
You don't need to be on Pinterest.

 

#MEAction has announced a "Severe ME Artists Project 2023" - more details here:

https://www.meaction.net/2023/06/30/severe-me-artists-project-2023/

 

One week to go.

Hopefully lots will use it as an opportunity to raise awareness and understanding.

Some severely affected patients may be unable to do it themselves so either carers or others in the community may need to do it

I think it's in the interest of all patients including those who aren't severely affected themselves to highlight how bad it can get.

 

Adding a link for the 25% M.E. Group, a charity in the UK:

https://25megroup.org/severe-me-day-2023/

 

Free Severe ME mini-course from Learna / Study PRN (authored by Dr Muirhead)

"Test your clinical knowledge this Severe ME Awareness Day with 5 FREE MCQs and receive a 0.5 Hour CPD Certificate on successful completion!”

Minicourse from Learna / StudyPRN
Authored by Dr Nina Muirhead.

"For Severe ME Awareness Day, we're providing all healthcare professionals with free educational content via our 'Question of the Day' Campaign to challenge and improve clinical knowledge, understanding and patient management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Complete all 5 multiple-choice assessment questions below to receive a 0.5 Hour CPD Certificate."

https://docs.google.com/forms/d/e/1FAIpQLSeaxO7NxelbWZWpNy4K38__kgSeJT3ZQNAjyvfcGbojyVxJUA/viewform

Nina says:
"To mark Severe ME Awareness 2023, this is a short case based series to improve knowledge and increase awareness. Our case is presented over 5 days and covers four years in the life of a 28 year old man, Rishi. Questions are designed to engage learners with some of the greatest challenges associated with very severe ME/CFS, including diagnosis and investigations, home visits, managing severe malnutrition and navigating hospital admission as well as recognising the impact of severe and very severe ME/CFS on the quality of life of patients and their families.”
https://docs.google.com/forms/d/e/1FAIpQLSeaxO7NxelbWZWpNy4K38__kgSeJT3ZQNAjyvfcGbojyVxJUA/viewform

 

An interview with #NIETHERSTELD/#NOTRECOVERED for #severeMEday.

It was a very special experience for me to be able to speak so extensively about severe ME. About what having severe M.E. means. How it’s affecting me on a daily basis. How I became severe. What people with severe M.E. need. What needs to be done better and how I cope with this awful disease.

I hope it may contribute to a better understanding of what ME means. That it can help others feel a little less alone. I want to thank my fellow people with ME for their contribution to this video by sharing their most vulnerable moments with this disease. Together we stand / lie stronger.
For those who can’t tolerate videos there’s a transcript on YouTube in the description although I hope people will watch the video too. The video has English and Dutch subtitles.

Many thanks to the people of Niet Hersteld for trusting me and for giving me a platform.

Warm greetings,

Anil ❤️

https://www.youtube.com/watch?v=cInSsoxM0Zg

 

From: #MEAction


Today we honor and recognize Severe ME Day, Tuesday, August 8th.
Severe ME Day is a day of remembrance when we think of those whom we
have lost to myalgic encephalomyelitis (ME), and focus on those living
with severe ME. For those of you in our community who have severe ME,
we love you and we are fighting with you.

August 8th was chosen to honor Sophia Mirza, a severe ME patient who
died of the disease. Severe ME Awareness Day was started by the 25
Percent ME Group in 2013.

In honor of this day, #MEAction is proud to share the Severe ME
Artists Project 2023! This project exists because over 150 of you
submitted photos, drawings, writing, music and videos of your work! We
debuted this project two years ago and we continue to be blown away by
the creativity in our community! Thank you!

#MEAction recognizes the difficulty of living with severe ME and hopes
that on Severe ME Day and always you feel loved and supported. This
project was created with an idea to allow those with severe ME to
share their artwork with the larger community and provide an
opportunity to be SEEN!

We also want to acknowledge the grief that happens around art for
those unable to practice their art now due to illness and those who
have had to change the way they practice their art. We are holding
space for you and keep you at the center of all we do at #MEAction all
year long.

Here is the video compilation featuring all of the wonderful art
submitted by our severe ME community! This video is over 40 minutes
long. There is sound used in this video, so please use mute if need to
while watching. Also, the video will feature captions where needed.
Feel free to pause and come back to watch the rest of the video when
you have the energy.

You can view the full video of work submitted here:

https://www.youtube.com/watch?v=bw0GvP5fp3s

To view the written work and all the art that was shared, check out
the Severe ME Artists Project Gallery. This page has a lot featured on
it, so please take your time and come back often!

Severe ME Artists Gallery 2023
https://www.meaction.net/2023/07/31/severe-me-artist-project-2023-gallery

Again, thank you so much to everyone who participated in this project!
Your work and your creativity inspire us! And on Severe ME Day and
every other day, please know that you are not alone. #MEAction’s
community is here for you. We are here to support you and we are in
this fight for you.


Enjoy!
All of us at #MEAction

 

Sophia and M.E. (sophiaandme.org.uk)

 

Thank you, Anil, for another great video.

 

I wrote up a Twitter thread to mark today

https://twitter.com/user/status/1689061877366579200

 

Thank you so much for this, @Grigor. I'm going through the worst, most sustained crash since The Great Crash of Autumn 2020 and it's been rough. Your encouragement at the end to hang on was what I really needed to hear.

And as others have said, this is a truly superb video. You are very effective at calmly showing the banal brutality of what day to day life is like for those with very severe ME/CFS. Plus, I love that you address the question "what do you do all day?" That has probably been the number one question people have asked me over the years.

Just...well done!

 

Thank you @Trish @Laurie P and @Michelle. I had filmed for other small projects I hadn't started working on yet and didn't know where to start. So when being asked for this interview I had a lot of material at hand. The answers to the questions were recorded in a week. I was not completely happy with my answers. Lacked nuance, forgot to say a lot of things etc, but I had no energy to record them again. I was happy it was well received. Also by you ❤️

 

“I have had #severeME for 26 years”

“The frustrating thing about sometimes having 30% capacity is that I can do so much more from well-rested but it is an illusion, which masks my true capacities. They are always much lower than I think”

https://meassociation.org.uk/2023/08/severe-me-week-2023-mikes-story/

 

“I'm Katie, I’m 18 and living with Very Severe ME. I live my life in one room, always in my bed. Not leaving it for months at a time. Everything, literally everything, happens from here.”

“It’s heart-breaking when the people we trust don't trust us, that we are doing our best and know what we are saying. Don't believe in us. Relationships are ripped apart by this. And they have a lasting effect on us, what we perceive as our self-worth and new relationships. And it happens a lot.”

https://meassociation.org.uk/2023/08/severe-me-week-2023-katies-story/