Join the Smash Long Covid movement. Even Severe people could contribute
TL;DR. Share Long Covid awareness content on your facebook, to push for solutions without leaving your bed. All are welcome. You will be provided with stuff to post. Keep posting every 5-6 days for at least several months. Along with each meme write a very short text. Even Severe people might be able to contribute. If you have enough energy, help spread the movement by sharing this blog post. If you have even more energy, help us create and collect more content to post. Even if this activism movement completely fails it still wont cost you very much to try.
Before I got Long Covid when I was still working, a big part of my job involved communication and public relations. Everything I write here is based on principles of communication skills. Follow these rules to make your awareness-raising as impactful as possible.
Golden Rules When Posting Memes
I have this. Say this this affects you personally e.g. ”I have long covid” or ”My son has long covid”. If the content talks about a symptom you have then say that e.g. ”I have brain fog” or ”I’ve had pains like this”. If you have another disease similar to Long Covid say that. Including personal experience is a very important part because it improves credibility.
Duration. Say for how long this has been going on.
Impact on life. In one sentence say the effect on the long hauler’s life. Focus for the most scary effect e.g. problems at work, unpleasant symptoms, not going to school.
Medicine inadequate. If the medical system hasnt been helping you much then say that.
Age. If not obvious from your facebook profile, say the long hauler’s age e.g. ”My friend has long covid. He’s 25”. This raises awareness that any age group can get long covid.
Reinfection. If the person got long covid from a reinfection say that e.g. “I got it from my 4th covid infection”. This raises awareness that repeat infections also give people Long Covid.
Vaccination. (Optional) If the person was vaccinated for covid say so. Say how the vax-and-relax strategy didnt work for them. OR that if only they’d worn a N95/FFP3 mask. This raises awareness that people can get Long Covid even if they are vaccinated. And so the “vaccine-only” strategy is inadequate and we need a “vaccines-plus” strategy. (See: FAQ vaccines)
Previous health. If not obvious from your facebook profile, then mention the long hauler’s previous health and activity e.g. ”My daughter used to do running, cycling and gymnastics”
Dont talk about any hopes or optimism. In a tough situation it’s natural to try to stay upbeat, but someone who doesnt know anything about Long Covid will get the wrong impression that things arent so bad.
Keep it short. Let the meme do most of the talking. Your accompanying text is just to make the meme more believable by involving personal experience.
Accept that you wont convince 100%. And that’s OK. With anything political you wont convince absolutely everyone, but you dont need to. So dont worry if people unfollow or unfriend you. No one can make you shut up about this. Dont worry if you dont seem to be getting much engagement, as disease is always a scary topic which doesnt really evoke likes/comments, but people will still be see and become more aware. (See: FAQ unfriend/unfollow)
Examples of Accompanying Text
”I’ve have long covid for 2 years. I cant work and have lost my job. Doctors cant seem to help. I was vaccinated but the vax-and-relax strategy didnt work for me. I got long covid from my 3rd covid infection.”
”I’ve had brain fog like this for 3 years ever since I caught covid. I’m having real trouble working and my boss has given me warnings. I was vaccinated but I shouldve worn a N95 mask as well”
”My daughter has long covid like this. It’s been steadily getting worse for the last 4 years. She’s only 17. She’s not going to school. The NHS hasnt been helping her at all. She used to be a normal healthy active child”
”My friend has long covid. He’s had it for 2 years from his 5th covid infection. He recently had to stop working because of it. He’s 31. He used to run marathons. Doctors cant seem to help. He was vaccinated but vax-and-relax strategy didnt work for him.”
”I have ME which is commonly caused by covid. I got it when I caught glandular fever in 2015. In these 10 years I’ve lost my career, lost almost all my social life, and my partner left me. Doctors havent helped me at all.”
”I get fatigue like this. I’ve had long covid for 5 years now. The exhaustion started and just never stopped. I’ve had no help from doctors.”
”I’ve had pains like this. For 14 months now ever since my third covid infection. Sometimes at work I get a headache so bad I just have to grit my teeth. It can go on all day. Doctors cant seem to help”
I suggest post a meme every 5-6 days. Put a reminder in your calendar. Try to post on the weekdays not weekends because more people are online then. Keep doing it for at least several months.
Click here to be taken to the list of memes to post
If you want to get involved but dont know anyone personally with long covid then you have two options:
Read my facebook post about what its like having long covid and Severe ME. Then you can talk about me saying “My friend has this”. (I consider anyone who’s raising awareness about long covid to be my friend).
Find people you know who has long covid. Ask everyone you know “does anyone know anyone who has long-term symptoms that started from a covid infection?”. Read a post I wrote on reddit going into this in detail.
If you have the energy then help spread the movement
Remember the formula for success. Say each facebook user has about 100 active friends. If we can get 10,000 people doing this meme-posting then we should be able to influence 100 x 10,000 = 1,000,000. ONE MILLION PEOPLE. To get that we need to actually get 10,000 people joining the movement and regularly posting.
This movement has multiple names which can all be used: Smash Long Covid, Smash Covid, Smash ME, Smash IACC, Smash MCAS, Smash POTS, Smash Lyme, etc
How to spread the movement:
Tell people you know who are also affected by Long Covid, ME or another IACC about the movement and ask if they’ll take part in meme-posting as well. Send them this blog post.
Regularly post about Smash Long Covid in any Long Covid/ME/IACC/Zero Covid online space you’re in. That goes for bluesky, reddit, X, instagram, facebook groups, tiktok, etc. Everything. Be careful not to spam too much. I suggest a post every 10-14 days (put a reminder in your calendar), because once people have already joined it becomes old news. You can copypaste the TL;DR so people can see without following the link.
If someone in a LC/ME/IACC/ZC online space is venting about the situation and wondering what they could do, then comment telling them about the Smash Long Covid movement. Link this blog post. Tell them how it takes very little time and energy to participate, but could steadily work towards changing the world for the better.
If you see such a post on the online spaces make sure you retweet, upvote, like, comment and/or reply.
If you get a kind comment from a facebook friend then anonymize it (could simply copypaste the text) and share in the Smash Long Covid online spaces:
Subreddit: www.reddit.com/r/smashlongcovid
Facebook group: https://www.facebook.com/groups/1219739519792719
On BlueSky and X use the hashtag #smashlongcovid
Similar for instagram, tiktok, etc but I dont use them so I dont know how they work, hopefully someone will tell me if they have hashtags or whatever.
If you want to suggest another meme to make, or make the meme yourself, then post on one of the Smash Long Covid online spaces.
What's the call to action? You just want as many people as possible posting these memes to raise awareness?