Today I’m really excited to share a new thing with you, which I hope is going to bring some joy and a sense of community and friendship for those who may be feeling a little lonely and isolated like I often do. When you’re sick with an illness like M.E. or Fibromyalgia or Long Covid, which limits your energy levels and makes getting out of the house and socialising hard, it is very easy to become lost in your own world, as if everyone else has carried on without you. So I wanted to do something to change that – hence M.E. Friends – the monthly zoom call for those affected by M.E. (and other energy limiting conditions) was born.
What is it?
Well, it is exactly what I just said it is – a monthly zoom call for those affected by M.E. and other energy limiting conditions (see note about gatekeeping at the end of this post for more on that). The idea has grown out of my own feelings of isolation and frustration of not being well enough to go out and meet up with people. Earlier this year I decided to hold a party over zoom for my birthday, and I had so much fun that when Blue Sunday came around the following month it just made sense for me to host a tea party over zoom for those like me who couldn’t meet up with people in person.
Our Blue Sunday tea party was such a happy event, and everyone who came said they really enjoyed being able to talk with others like them who just understood what life is like. It made them feel less alone and was the first time some of them had even had chance to speak to other people with M.E. And so Thea whispered to me that we should make it a regular event and I suggested it to the group and everyone seemed to like the idea, and so I began thinking about how to make it a reality. And that’s how I came up with M.E. Friends.
How does it work?
I’ve been thinking about this a lot, because I needed to make it as easy to manage for me as well as as accessible as possible for everyone else. So here’s what I have come up with:
- M.E. Friends will take place on the first Saturday of each month at 2pm GMT. This makes it an easy date to put on your calendar and I believe it is a time that should work for most time zones. The only time we may make a change to the date is if the first Saturday falls on a holiday such as New Year or Easter, in which case we’ll change it.
- I’ll send out the invite link to join the zoom call via email to everyone on the email list (you can sign up at the end of this post) each month. This means that the meetings will remain safe for everyone as you will only be able to join the call if you have the invite – it won’t have been shared publicly.
- You can come to as many or as few calls as you like. I’ll need to be there as the meeting host via zoom, although I’m going to have to look into options for what to do if I’m too unwell to do it one month. I’ll let everyone know of any changes to this via the email list.
I’m nervous/shy or I find talking really draining, do I have to talk?
No, you don’t have to talk if you come to one of the M.E. Friends calls, I want you to feel as comfortable as possible. You can mute your microphone and just listen in to the conversation. All I ask is that you have you have your video on so that everyone can see who is in the meeting.
A note about gatekeeping
Now I want to make something abundantly clear before I finish this post. I have called this M.E. Friends, because the idea was sparked by hosting an online Zoom Party for Blue Sunday in May, which is of course a fundraising event for M.E. and everyone who came to that had M.E. But there is a big overlap in symptoms between M.E. and other energy limiting conditions, often also brought on post-virally, such as Fibromyalgia and Long Covid. And we all know that the route to diagnosis is far from straightforward for any of them, so I don’t want anyone to feel excluded by the name.
I bring this up because I experienced a piece of gatekeeping from someone within the M.E. community myself not that long ago. Because my own diagnosis from the Rheumatologist happens to officially be “Fibromyalgia/CFS” this person decided to “lecture” me on the difference between Fibromyalgia and M.E., questioning me and my diagnosis, and basically making me feel very unwelcome. As if I haven’t just spent 7 years living with this, knowing that I meet the diagnostic criteria for M.E., have two family members with it (one being my mother who was diagnosed with it in the 90s when I was a teenager, so I am far from a newbie to all of this), and spend most of my days resting in bed.
I understand the desire to educate people outside of the community, or to help those who are new to being ill and who are asking for advice when their doctors have been less than helpful. But I will not stand for any gatekeeping around M.E. Friends. I chose the name because it felt good and I couldn’t think of a more inclusive one. Fatigue Friends didn’t really do it, because we all know that our illnesses are so much more than just fatigue! But I do not want anyone to feel that are not welcome here. The idea behind it is to create a warm and welcoming and safe place for people to come together on a monthly basis, from wherever they’re at, whether that is their bed or their back garden, to chat with people who understand what it’s like. So if your life is limited in any way by an energy limiting illness such as those I have mentioned, you are welcome to join M.E. Friends!
Sign up for the M.E. Friends email list
Sign up here to join the M.E. Friends email list, and I’ll send you details of each zoom call. I hate marketing emails filling up my inbox as much as the next person, so I promise I will only send you emails with details of the zoom calls. And you can unsubscribe at any time!
I look forward to seeing you there!
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