Following the epidemics of ME in the mid 1980's, thousands found themselves housebound and bedbound, isolated, and with very little way to find likewise people to share experiences. Gradually support groups developed, but the housebound and bedbound were left behind.
Then came the world of internet. While it took at least a full decade to get patients connected, there is a wide variety of internet ressource, communities and social media available. Of course the very severly affected are unable to participate due to sensory overload.
While Facebook provide a great venue for mingling and provide support amd sharing of information, today I want to discuss the power of Twitter and what it can offer patients especially when it comes to advocacy and activism.
The most important features of Twitter is that nothing is private, except private messaging of course. In thhe light of advocacy, it's a good thing. When you send a tweet, it gets queued in all of your followers's feeds. This means that having a lot of followers is helpful in order to make the most out of Twitter. You can also expand who reads your tweets by adding someone or a geoup's handle, or by using the hanshtag sign #.
Briefly, the hashtag is used with keywords that are searchable on Twitter. For example, #mecfs or #fibro. #spoonie is used for all patients who have a limited amount of energy to live with. It encompasses diseases like lupus, rheumatoid arthritis, ME and FM, amongst others.
For an exhaustive list of commonly used hashtags in health care, please visit this link. It is best to use the most common hashtags to increase the chances that your tweets will be found and read. Also of interest for health activists are the hashtags used by and for journalists and politicians, medical and research organizations and government agencies. In Canada, #cdnpoli, #hcsmca and #cdnhealth are the main ones.
Tweet chats are also a great opportunity to mingle, bounce ideas and network. I find that using this link is a very good app for that purpose. There are all kinds of topics and schedules available here. If there is a big turnout, it can get a bit hectic and hard to keep up with the flow especially when one has cognitive dysfunction. I found that participating in more general tweet chats has allowed me to see a bigger picture, beyond my own illness. I have also been impressed with the variety of backgrounds in people showing up, and the moderators are usually very good to keep on topic.
To conclude, Twitter is a great tool to use, in my opinion, by all health activists.