Only ME

15/10/2024

Seeing all these posts 👀 I for one am not looking forward to dealing with the out pouring from the latest new wave of experts of the Miranda Hart fanclub... I think so many of us have been here before... let's look at it as an opportunity to educate (some more, again...) and be kind to Miranda, we all know the hell she's been through. I am sure this book has come from a genuine desire to be helpful 💙❤️

14/10/2024

💙❤️

Help Andrew Potterton raise money to support Smile For ME

09/10/2024

In September, we launched . We have shared four new videos focused on post-exertional malaise and pacing. We have been getting wonderful feedback from you!

Find all four videos on ’s YouTube channel. Share them on social media and send them over to your medical professionals to watch if you like. We have them in a playlist: https://www.youtube.com/playlist?list=PLhO4nWkiP5QT7UwpByIztcJAjbdSU7SJD

Every Monday, we posted a new video with Chimére L. Sweeney interviewing a specific expert about PEM and pacing. Thank to our experts: Dr. Brayden Yellman, Dr. Todd Davenport, Brittany Spencer (LCPC), and Dr. Katherine Rowe. Understanding PEM is critical — especially for the person experiencing it, the clinicians treating persons living with it, and for the caregivers and allies providing support. This series was created in partnership with and Patient-Led Research Collaborative.

In the month of October we will be sharing shorter clips pulled from each video for you to easily share with people in your life! Keep following along every .

A major focus for is to increase ME medical education so that every person with ME can receive quality care. In order to do this, we need the financial support of this community. Please consider giving today to ensure more medical professionals know about ME.

09/10/2024

09/10/2024

Truth - when we dare to dream of doing extra...

06/10/2024

A must read. Please tread lightly around 💙❤️

06/10/2024

Welcome to the world of 💙❤️

06/10/2024

💙❤️

06/10/2024

On twitter? Help needed 🙏🏼

06/10/2024

16 years ago, I was first introduced to pacing. I'm still learning.

"I would suffer from overexerting myself and would be in bed for hours on end."

MeShell gradually learned that ME is a disease where pushing harder can make you sicker.

Aged 21, MeShell contracted chicken pox, strep throat, and scarlett fever all at the same time, resulting in developing Virul Meningitis. She was in ICU for 2 weeks. The lasting effect of the Meningitis was ME.

As this was back in 1985, almost no advice was provided about ME and how to manage her symptoms. MeShell was raising a young family at the time and the chronic fatigue was debilitating. "There were days I felt well and would catch up on house cleaning and laundry, batch cook as I knew the following days I would suffer from overexerting myself and would be in bed for hours on end.

"It's taken YEARS to learn to pace myself. Little and often physical activities are better for being able to support long-term physical activities. Not only is physical fatigue a factor, but so is mental fatigue."

Photo description: MeShell now lives with mild ME and can go on holiday with her husband. Management is still required though and on this occasion stress from pushing to travel too much each day flared up her symptoms. Bed rest was required.

World ME Day is Friday 12th May

Post-exertional malaise is the hallmark symptom of ME, and is experienced by the majority of those with long COVID, but what is it?

PEM is a worsening of symptoms after physical, mental, or emotional exertion that would not have caused a problem before the illness and is the hallmark symptom of ME.

ME - The disease where pushing harder can make you sicker

Learn more: https://worldmealliance.org/2023/04/new-factsheet-on-me-available-in-multiple-languages-for-world-me-day/

21/09/2024

So true. Pacing makes my brain hurt.

15/09/2024

Ha! Too many times lol, so funny but so true.

15/09/2024

When you thought the crash was over but there was more PEM in the tank just waiting to surprise you!

Good news is I am not feeling my worst and I will happily take a (an almost) flat and fragile battery over a full blown crash any day.

WINNING even when I'm losing 🙈 Looking on the bright side and hoping I dodge any more incoming bullets!

This is the thing with PEM. It can only be managed to a certain point. Life cannot be 100% prescribed or planned for, and until it can, if it's even possible, PEM will always remain the unseen, often unexpected, assassin.