What Can Long Covid Advocacy Groups Be Doing Better?

Greetings to all my fellow Covid & Long Covid advocates, supporters and survivors.

At last count there are hundreds if not over a thousand Long Covid advocacy and support groups scattered around the world. Some are quite formal and organized in their social media make up, others are more kitchen table one on one support style.

For a medical condition that is relatively new, still undefined, still no formal test, reaching this number of support groups in such a short period of time is a remarkable achievement.

If there is one thing that holds true about Long Covid support cohorts it’s the fact they are typically well organized, tech savvy and social media aware. ????

Building from this thought I’d like to share a little social media posting strategy / advice knowing full well its worth exactly what everyone is paying for it. ??

I’ve been in the pandemic social media trenches for 4 ? years. In this time I’ve made more mistakes than I care to count but at the same time I’ve learned a lot of valuable lessons, very often via the hard way. I am just shy of 3 billion social media engagements on my channels which is decent for a non entertainment subject. Does not make me an expert, just means a lot of water has flowed under my social media bridge posts.

It has been my observation for a long time Long Covid groups in general excel at communicating about the pandemic, covid and long covid history, the problems associated, the issues, and the future needs.

Where things begin to fall short for many of these groups is when it comes to getting heard by the decision makers. These would be your local and federal governments.

99.99% of advocacy and support groups are simply way too nice, they play by well defined societal rules, they are polite, they tend to stick to their own expertise lanes and heaven forbid they offend anyones social media sensibilities.

This communicating style typically works well when pointed inward, to a support groups membership, however in this day and age it usually makes for poor “getting heard” results in the outside world where the decisions are made.

There is no shame with taking a page out of your competitor’s social media strategies. Competitors you might ask? ?Yes indeed, every important issue in the world worth fighting for has too compete for ears and eyeballs if they want to get results. Long Covid is no different. It is fierce competition I might add to get and keep someones attention.

In the Long Covid advocacy world we are fighting to get heard by public health policy folks, politicians with limited time, governments with huge agendas. So yes, squeaky wheel strategies are still a very real thing, even more so with social media, always be mindful of this. If you want to make a difference you need to know who your audience is and poke them daily.

While I am on the subject of competing voices, let’s not forget to mention the misinformation, disinformation and mal-information cohorts who want to be heard as well. They want to drown out the Long Covid support groups. Like it or not these despicable people know how to use social media gorilla tactics to keep their message front of mind pushing yours to the side. They are equally skilled at using each other when it convenient to meet their greater social media goals.

In other words, they know how to play well together in a common sandbox when necessary to meet their bigger goals.

This is the social media strategy page I believe Long Covid support agencies could learn from. There may be a thousand Long Covid groups out there, but they do not cross over and play well with each other very often. I think of it as single voices in the forest of Long Covid advocacy instead of a choir singing together when the message needs to be heard loud and clear.

There are over 100 million voices and growing in the Long Covid world, the majority of them are online and participating on social media. Can you imagine for one moment if these people played well together, as a single voice under certain circumstances? Not all the time, but if they shared social media resources, accounts, followers.

Listen, this is not an easy concept to grasp or execute on, companies and corporations struggle with getting heard above the din all the time so why would Long Covid support groups be any different?

The number one failing for not getting heard at the highest levels is going at your advocacy/support work alone. Groups simply can not yell long enough, loud enough nor sustain the daily pressure required to be effective. I see it all the time in our long covid world. I get the news letters, I see the meetings, I see the press clippings, I view the video's. Everyone is fighting to be heard above their fellow advocates.

Little to no cross over mutual support for other groups work. Its like having a thousand separate sand boxes scattered to the wind with each having a little bit of influence compared to a massive sandbox of mutual interest, where the power of numbers through following and sharing common interests comes into play.

Social media is not easy, I get that, it can be nasty business for sure but outward communicating strategies by support groups working together to pound away on the public social media accounts of politicians is free. FREE! It is the most effective work a group can do if they want to make a big difference. ?

Yes, it takes coordinating, yes, it takes willingness to get your hands dirty, yes you may work with other groups who may not share your exact Long Covid agenda, but this communication strategy is not agenda specific.?As a matter of fact I don't think it should be agenda specific other than pro Long Covid messages to the correct ears and eyes.

This is about being kept front of mind with decision makers 24/7/365. How much work is it to follow and share on their accounts to make sure your message is being heard, takes seconds, right? What if a hundred million people were doing this? ?

If you would like to hear more about this type of outbound social media strategy, please leave a comment below and if you don't mind, share this article. This can be done....LarryC

My Long Covid Advocacy

We can all get more together than we can apart. And this is the way we gain power. Power is the ability to achieve purpose, power is the ability to effect change, and we need power. Martin Luther King Jr.,