When I was first diagnosed with Chronic Fatigue Syndrome, I felt lost. It's a condition I had never heard of before and my doctor didn't seem to know much about it either. What got me through was the support of other patients I found online. And they continue to be my support as the years go by! For this reason I have created a community online for people with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS) and their carers.
It consists of a few places on social media where people with ME or CFS and their carers can share relevent content to help support the ME/CFS community.
My hope is that newly diagnosed patients, or anybody struggling to manage life with ME, would not struggle as much as some of us have to find the support and resources available to them.
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The ME/CFS Community Group on Facebook
The main base of our growing community is our group on Facebook. The group is public, so even those who are not members or not yet open about their condition on social media can still access everything that is shared.
We welcome ME and CFS bloggers and creatives to join and share their content too.
If you'd like to be a part of this ME/CFS community, come join the group at facebook.com/groups/MEcfsCommunity
* If you are interested in a private support group where your Facebook friends and family will not be able to see your posts, check out this group. (I'm an admin there too)
Sharing Content In The ME Community
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Main Group Feed
Members can post directly to the group's page. We'd like to create a positive and safe place to share anything you find useful or relevant as well as personal stories, and anything fun, uplifting or encouraging.
This could include anything from the latest research articles and advocacy events, relevant blog posts, pictures of your service animals, things you've created or a personal struggle or victory. The aim is to keep it kind, supportive and relevant to people with ME.
Social Share Threads
These are interactive threads where the community is encouraged to participate in conversation. Totally optional of course.
So Who Is This Community For?
Anybody with ME or CFS or any carers of people with ME or CFS can join the ME/CFS Community.
What May I Share?
Anything of interest to people with ME or chronic illness. I'd like to have relevant content, from wherever, shared to this group so that people with ME, once diagnosed and searching for information, can find people who understand them - a collection of resources by people who know what they are going through.
Lets help the ME community to unite and support each other. I believe we are stronger together and I'd hate for newly diagnosed people to feel lost and alone when there are so many of us out there trying to help them by sharing our experience.
The only thing I will not tolerate is sales pitches, although everything is monitored and any offensive content will be removed.
ME Bloggers Group Board on Pinterest
Apart from the Facebook group, there is also a Pinterest group board for ME and CFS bloggers! Feel free to pin your posts directly onto this board.
To be added as a contributor, follow me on Pinterest and send me a message asking to be added.
You can also leave your Pinterest link or username below in the comments and I'll add you.
You can find me on Pinterest at Chronically Hopeful and the ME Bloggers group board is here if you'd like to follow just that board.
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We also have a Tailwind Tribe you can join if you're using Tailwind to automate your pinning schedule and promote your blog. We can help each other grow with this great tool that makes the whole process easier and saves us time. Join the ME & CFS Bloggers Tribe on Tailwind.
Exciting Times For People With ME!
I am so excited about this new platform to share experiences and support each other on this slow and patient journey to recovery. With all the buzz in the media lately and various research projects happening, it would be great to have more people pooling their content in an easy-to-find place!
I had a hard time finding ME specific content created by people with ME and I think having them all in one place would be very helpful to patients, specially those who are suffering with cognitive issues that make navigating the internet that much harder.
Also, by sharing our experiences we can show newly diagnosed people that this doesn't have to be a life sentence. There are still ways we can contribute and experience a good life within our limits. I'd like this to be a place where we not only educate, but give support and hope.
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Hi Charlene,
I’m a fellow keto ME/CFSer and just found your lovely invitation and great idea on chronic illness bloggers. It’s good to meet you!
I’m following you on Pinterest (I’m “chrillog”), have sent you a message on FB ? and bookmarked your Google page.
I’m a former family doctor with me/cfs x 20 years now and improving.
I blog mostly about the science and research linking subtle and overt types of adverse life events with risk for chronic illness of all kinds, including but not limited to me/cfs. It’s so hard to do a lot of research when we have a disease for which no diagnostic tests yet exist, although many good things are arising.
As a result, I write about research in many other diseases such as type 1 diabetes (the autoimmune form of diabetes) to show the science, which is similar for many diseases, including my version of me/cfs.
Research is explaining the interaction between life events, our developing nervous and immune systems and other organs, and how they change the way our genes function to influence our health. It’s not psychological, which is helpful to know! That’s my focus, along with sharing the new tools this info gives us.
If you’re not familiar with Cort Johnson of the ME/CFS blog called Health Rising, it provides a lot on all the latest studies, has a very engaged community and is a great one to subscribe to.
It’s lovely to meet a new colleague and fellow journeyer!
Veronique
Hi Veronique, I am so glad to have you on board!
Thank you for sharing your experience and knowledge – I think it is so important for us to speak up and stand together to raise awareness and support each other.