Hey, it’s me your pal with ME/CFS 👋🏻
This ME Awareness Month I thought I’d share some simple and easy ways you can support someone with ME/CFS. We’re aware that it must be really rubbish when someone you care about is sick and their illness is long-term and leaves you feeling at a loss at how to help. It’s pretty crappy all around! We’d do anything to take that away from you too!
So to help, I wanted to offer some simple ways that offer support to a person with ME/CFS. You see, one of the main (and it’s sadly just one!) issues with this complex illness is the lack of understanding that surrounds it and that’s simply due to the politics that sadly engulf it and have massively slowed down biomedical research and therefore societal understanding. Therefore the only way for change is for people to truly begin to appreciate and understand the illness for what it is. By doing this, by learning more about the illness, conversations about M.E change, a chain happens from person to person, misconceptions are corrected and finally, we hope, perceptions move on.
So I simply ask this of you, pick one or two of these easy things from this list and begin that conversation with others. I will be eternally grateful.
Watch A YouTube Video
Have you got 7 minutes to spare? Adam has severe ME/CFS and compiled an excellent, short and concise 7-minute video with up to date information regarding research and issues with ME/CFS. If you keep your eyes peeled, you may just see my face pop up right at the beginning!
You can follow Adam on Twitter for more excellent information on ME/CFS here @abrokenbattery
“It’s one of the worst diseases you can have and also the least funded”Dr Ron Davis PHD
Watch A Movie
Unrest is an Oscar-nominated movie following Jennifer Brea’s journey with ME/CFS.
I’ll be honest, it struck a chord with me as my story is frightening similar to Jennifer’s. It will make you laugh and cry and show you a lot about how we fight medically and the struggles it entails.
“Jennifer Brea is working on her PhD at Harvard and about to marry the love of her life when she’s struck down by a mysterious fever that leaves her bedridden. When doctors tell her “it’s all in her head,” she turns her camera on herself to document her devastating symptoms. Searching for answers, Jennifer discovers a hidden world of millions confined to their homes and bedrooms by ME, commonly known as chronic fatigue syndrome. Together, Jen and her new husband, Omar, must find a way to build a life and fight for a cure.”
Unrest Available on Netflix and Youtube (links below), learn more about it at Unrest.film
Read A Book
Lovers of reading will find some intriguing options on offer in my latest blog post Must Read Books On ME/CFS!
I have for you five excellent books that really are page-turners and will truly enhance your knowledge of ME/CFS and leave you wanting to know more.
There are books from various points of view: A multi-award winning research scientist, patients with ME/CFS, a doctor writing of the medical and political issues that surround the illness and a children’s book, written by a parent to help explain chronic illness to a child.
Have A Cuppa And Some Cake
Ok, now I don’t know anyone who doesn’t love a cuppa and a piece of cake, come on! This one is easy!
The wonderful Anna at The Slow Lane came up with Blue Sunday – Tea Party For ME a number of years ago. The concept a simple one. Host a tea party, either in person or virtually and donate the proceeds to an ME charity. Blue Sunday happens on the last Sunday of ME Awareness Week each May.
Now, obviously, the last year or so has been a little different. However, socially distanced/virtual tea parties are still on the cards. OR, an even easier option, grab a cuppa and donate what you would spend on a cuppa and cake at a coffee shop to an ME Charity. No organisation needed. Told you it was easy!
Here are all the details! I know I can’t see anyone (cries) but please join me in slurping a cuppa on Sunday 16th May!
When donating, please reference BLUE SUNDAY so that Anna can keep a tab with the various charities.
Here is a direct link to the charities page on Anna’s site: Blue Sunday Donations 💙
Joking aside, I appreciate it has been an extra tough 12 months or so and appreciate donations are more difficult than ever.
Check Out Some Research
I love keeping up to date with the latest biomedical research. To me, each newly published paper is like a piece of the most complex jigsaw. We just need the support to be able to create the pieces in the first place.
For me, reading the research is validation, it makes sense of how I’m feeling, of what I’m feeling, of why my body acts in certain ways. The thought that one day there could be further answers, well that is but a dream.
This summary is a simple glimpse at the different systems affected, it’s fascinating. Perhaps having a browse yourself may help garner an understanding of why the person with ME/CFS struggles to do things like a healthy, able-bodied person.
Support Our Advocacy Efforts
I guess this one’s a simple yet tricky ask. It is not easy to be as honest as I feel I need to be online. All of my health advocacy, all of my posts regarding my illnesses come from a place of both a need for understanding and a desperate desire to get better. In order for that to happen, I simply need to be heard. Collectively we, the ME/CFS community need to be listened to. We need support. We have to have a change in public perception, we need funding for research, we need people to put pressures on their MP’s to make this happen. So our only way to do this is to be painfully open.
Yet, at the same time, I’m aware that my posts aren’t always the easiest to read. I do appreciate that. So I cannot thank you enough for the times that you do read them, share and engage. It truly does mean the world.
I hope this post has been helpful and shown small ways you can support someone with ME/CFS.
With love, thanks and solidarity 💙
Here’s my latest post: Why M.E Awareness Month Is Difficult For The Very People It’s Designed To Help
Myalgic Encephalomyelitis (ME) or Myalgic Encephalomyelitis/chronic fatigue syndrome (ME/CFS), is a complex chronic disease that presents with symptoms in multiple body systems. ME is a neurological disease according to the World Health Organisation.
Susceptibility may be genetic, but the disease is triggered by infection in the majority of patients. ME may be severe: 75% of those affected are unable to work and 25% are homebound or bedridden. ME is a common chronic consequence of viruses, with 10-12% of those with serious infection going on to develop the disease. An estimated 15-30 million people live with the disease worldwide. -ME ACTION.
A very interesting and thought provoking article, thanks Amy.