Following exchange of emails with a few patients and Jennifer we agreed to chat using the following questions:
1. Are there ethical or societal effects of calling the disease Myalgic Encephalomyelitis versus Chronic Fatigue Syndrome? How do disease names affect perceptions?
2a. Myalgic Encephalomyelitis is often misdiagnosed and/or mistreated. What additional harms can misdiagnosis and/or mistreatment expose individuals, healthcare professionals, and society to?
2b. A Patient with Myalgic Encephalomyelitis has been held in a Denmark psychiatric facility since February 2013 against her will. What conditions should be met to ethically commit a patient?
3a. Myalgic Encephalomyelitis is not 'rare,' but it can be considered unpopular. What makes (or should make) a disease more likely to get funding or research money?
3b What makes (or should make) a disease more likely to be taught in medical education? How does it affect the patient population if it is not taught?
T4 How can you, patients, health care professionals, and/or others help remove stigma from diseases such as myalgic encephalomyelitis? What's one thing you have learned tonight?
These chats attract health care professionals, ethicians, and the general public. You are welcome to join in the dialogue and share your ideas. All you need is a twitter account! It is an opportunity to raise awareness, and there are big chances that many will learn about ME and its devastation at the personal and societal levels.
In order to participate in the chat at forementioned time, all of your tweets need to include #bioethx in them.
A few website facilitate twitter chats including www.tweetchat.com. You will need a twitter account and log in information, enter the hashtag (bioethx) and enter the virtual room.
There are many Twitter Chats available as it related to health care. You can visit http://www.symplur.com/healthcare-hashtags/tweet-chats/ to look up the different chats and their schedule. I highly recommend you experience a tweet chat before April 7th. It is also a great opportunity to increase your contacts outside our patient community and speak out about your experiences as it related to the tweet chats. Sunday evening's #HCSM (health care social media) are usually fun and general in nature.
There are common sense rules when taking part to a tweet chat.
1) Answer the questions with their number A1, A2a, A2B etc
2) Stay on topic, and engage in the discussion. Have fun!
3) Make sure you have the #bioethx in your tweet otherwise it is not seen by others in the chat or recorded. Other hashtag of use are #mecfs #neuroME #CDC #HHS #NIH #meded #hcldr (health care leaders)
Twitter can be powerful as you can direct advocacy to interest groups, like the NIH and CDC for instance, Dr Frieden at the CDC has an account. The Center for Infection and Immunity (@CII722) (Columbia university) has a twitter account and tweets about ME. We can increase awareness by engaging with different groups and people outside our community. Twitter does that.
The chat will be recorded and will be available afterwards if you missed it. I will update as available.
Share widely and join us on April 7th at 5:30 EST!
Feel free to add me on twitter @Katiissick