Bio-ethics and ME tweet chat on April 7th at 8:30 PM Eastern time (5:30 Pt)

[Kati]

There will be a twitter chat open to all to participate on bioethics and ME early April thanks to the curiosity of Jennifer Chevinsky, a medical student who hosts weekly bioethics chat on Twitter on Monday evenings.

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, administrators, 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. Other hashtag of use are #mecfs #neuroME #CDC #HHS #NIH

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 (Columbia university) has a twitter account and tweets about ME. We can increase awareness by engaging with different groups and people outsode 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!

 

[Kati]

The tweetchat is 8 days away and a few ME members joined me for a weekly tweetchat called "health care social media" (#HCSM) tonight.

Here is a poster for the incoming bioethics chat, share widely and consider joining us. The poster has been made by the chat host, Jennifer who is not a patient herself. i thought she did a great job.

 

[Kati]

Last invite about the Tweet chat tomorrow.

i am a bit surprised at the seemingly lack of interest for this chat as this is a great opprotunity to engage with health care professionals outside our small circle and to raise awareness. Often times the folks that hang out on these chats are influential people.

But here goes.

at 8:30 PM go on this site:

http://www.tchat.io/rooms/bioethx

if you want to chat from a twitter app, all of your tweets need to be accompanied with the bioethx hashtag. The tchat website does it for you.

If you wish to engage and partake in the discussion you will need to log in your twitter account. Feel free to add me as a friend @Katiissick- and send me test tweets, I will reply back.

 

[WillowJ]

bump

 

[barbc56]

@Kati

Thanks for this info. I did not see this thread until today. Is there any way to access what was said?

I don't know the ends and outs of tweeting.

Thanks

Barb

 

[Nielk]

Thank you @Kati

My reservation is that I'm pretty new at twitter and am confused as to how these chats take place. I will try to join though.

 

[Kati]

Hi @barbc56 the chat is tonight 8:30PM New York time. (In just over 4hours)
join us!

and @Nielk, if you use http://www.tchat.io/rooms/bioethx it is user friendly and you can play/pause, because sometimes the chat can go fast. if it's going too fast for you, what is suggested is just reply to the questions, and read/ reply to other people's answers later. Every answers matters.

with my cognitive issues, I cannot keep up at times but it's a great opprotunity to engage and put this disease forward to the larger community.

 

[barbc56]

Lol, I was time traveling, again. I just hate when that happens!

Thanks.

Barb

 

[Kati]

The tweet chat came and went. There were 68 participants and the number of impressions (social reach was over 5 millions.

You can review the transcript here:
http://embed.symplur.com/twitter/tr...7-2014&thour=18&tmin=45&ssec=00&tsec=00&img=1

In general it is definitely cognitive exercise to engage into such chat- keep up with conversations, replying and missing what is currently being said. But I can say that at the very least we have managed to paint a picture of stigma and neglect. We have shared important documents like the ME ICC and David Tuller's piece on the CDC from a couple years back

http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/

Engaging with the larger community is a necessity if we want to move forward in my opinion. We need to provide the general public and the health care community the right information about our disease.

 

[WillowJ]

what is an impression?

 

[Kati]

I believe is the social media reach, a footprint if you will

 

[alex3619]

Maybe twitter should be a primary tool of activism, more than it is?

 

[Kati]

Twitter is a great tool for advocacy and activism. Look up 'health care tweet chats' off google, you will be seeing a smorgasboard of tweetchats for all continents. It's an opportunity to network with people outside our community.

Twitter allows also to interact with politicians and decision makers

 

[peggy-sue]

I cannot make anything out from the transcription... just a load of "I'm here."s or "On my way." s.....
I couldn't find any discussion.

(I can't even use a mobile phone, far less twit or text)

The first question itself is a NON question. It refers to "the disease" and whether "it" should be called one or the other.

ME and CFS are NOT the same things. CFS is just a random collection of symptoms, collected and put together by various psychiatrists. A syndrome, as it says in it's name.
Chronic Fatigue SYNDROME.

 

[Kati]

@peggy-sue the question was used as a way to reach out to the non-ME crowd. we know what patients think, but it was a good opening topic to discuss bioethics and how naming an illness impacts care and funding for research.

 

[peggy-sue]

The bottom line is that ME research needs to be completely seperated from CFS research.

If you get PEM, you don't have "CFS" and no amount of exercise and positive thinking will help.
It will make you worse..
simples.

 

[Kati]

@peggy-sue you are preaching to the choir. Feel free to engage with the larger community.

 

[peggy-sue]

I can't use a mobile phone.

But if somebody else can, and if my words can get the message across in the limited number of characters available, feel free to use them.

 

[Kati]

If you can use a computer you can bring twitter to your desktop.

 

[peggy-sue]

Even my computer use is very limited. I can't even store my photographs on it and find them again.
I can use email.
I can post on forums.
I can sometimes type a letter in a word document, but not neccessarily manage to copy and paste it to an email, because the computer does things I don't want it to do, to it.
That's it. I do not "get" computery stuff or today's technology.

I'm OLD. I used a slide rule and log tables at school.