Migraine

I know everybody doesn't use twitter, but I hope this makes sense - kind of like a place where multiple people are doing lots of little mini blog posts, visible to anyone who has "followed" them.

Since I have cut out gluten I have been getting followed on twitter by a lot of gluten-free and food allergy folks. I think this is fine, I could use more info about these issues, and there is lots of overlap with people who have IBS and are avoiding gluten, and Migraineurs, so if I can be helping them with some info, great, BUT...

This woman started following me today, she's a food allergy person, saw in my twitter profile that I deal with Migraine, so the first thing she does is to tweet to me:

quote:

Migraine attacks are a result of food allergies with the "target" tissue being the arteries

So this is the piece of misinformation that then goes out to everyone that follows her and everyone that follows me...

How do you reply to that in 140 characters or less and not be nasty? I immediately sent out 3 replies:

quote:

wht we eat is impt but #migraine is complex neurological disease and less thn 20% of sufferers are triggered by foods.

quote:

Vascular theory of #migraine more than 20 yrs out of date: blood vessels R affected, but attack is neurological, like seizure

quote:

So, getting food allergies id'd is gr8 idea and will help some #migraine sufferers, and improve overall health, but is not cure!

I didn't even address the difference between food allergies & food triggers - to much to go into!

Twitter poses whole new kinds of problems - it's not like a blog post that sits there and you can post comments and put up other posts in response to it - it moves rapidly and people can put all kinds of misinformation up, and you don't want to be up there being negative and nasty... but really this woman had some nerve, not a Migraineur but someone who is a self-proclaimed newbie to "gluten-free living," introducing herself to me by making a pronouncment about what causes Migraine, that other people can read and go off thinking they're going to cure themselves... it's hard to know how to deal with this. Except hope no-one is relying on any one tweet on Twitter for their information!

- Megs

Megs, as you know, I've been Twittering for a while as well, and I've noticed the same thing. There is a lot of misinformation about Migraine on there (and I would imagine about many other health conditions, too). Not only is there the more "innocent" kind of misinformation, but there are a lot of snake-oil salesmen on there, too.

Typically, what I will do if someone I'm following tweets about something not true, I'll reply to them with a link to MMC. (For example, someone talking about "causes" of Migraine rather than triggers, or to clear up confusion about the four phases of Migraine.) If someone is more malicious in their intent, or are trying to sell something, I'll normally ignore and/or block them. You may not know this, but if enough Twitter users block a person in a short time, that's one of the criteria Twitter uses to close a person's account. That does help cut down on some of the spam users.

I'm not sure if that helps at all, but I thought I'd let you know what I've been doing.

You both know I'm really new to twitter (yesterday!!).

Megs, that twitterer does have some nerve.

MJ, I like your idea of putting links to MMC.

Kelly

I give out the site a lot when I twitter too.

I have to admit I don't twitter that much for the very reason Megs is listing. Sometimes it's just too much too fast, too soon! And it is really hard to try and educate someone in 140 charicters or less! And the even bigger problem is that I WANT to educate them! LOL

So, twitter can get my goat sometimes, but I still kinda like it.

MJ's suggestions are good ones. I do give out links to this site, I also link to my blog and other blogs that have good info and other good articles. just as others can spread misinformation, we can spread good information, and fast! i got on twitter when MJ tweeted a link to the post I did about going down to Headache on the Hill, and that got tons of traffic to my blog, and I think it then generated at least some increase in emails to congressmen, so it can be really useful - but you're right, Eileen, it can be really frustrating too!

I just give you all Kudos for the patience it takes to get the correct info out there. I got a twitter acct when my teenage son wanted to do it and was following a few, MJ included but I really haven't followed it much, except my son and friends. I did start following a few more of you and found some other migraine related ones to follow. There I am Maggienmax.

But honestly I think twitter will be more for fun.

take care,
lisa