#MigraineChat Transcript
Healthcare social media transcript of the #MigraineChat hashtag.
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See #MigraineChat Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Beth Morton @beth_morton Hello everyone! Welcome to #MigraineChat! Thanks for being here today. I hope you’re doing as well as possible. If you haven’t before, take a quick moment to review the chat tips & guidelines: https://t.co/Wuemu2Ihop |
| Beth Morton @beth_morton @jagrsmom Starting now, right here. I’ll be tweeting out questions. There’s a private FB group, too, where questions are posted throughout the month. I can link at the end. #MigraineChat |
| Beth Morton @beth_morton Two tips: (1) I’ll start each question w/Q1, Q2, etc. Remember to start your corresponding reply w/A1, A2, etc. (or quote tweet). (2) Always include the #MigraineChat hashtag! It makes following the conversation easier & ensures your tweets make the transcript. |
| Beth Morton @beth_morton Who is joining #MigraineChat today? If you want, introduce yourself in a way you are comfortable. I’m Beth. I’m tweeting from a waiting room today! #MigraineChat stops for nothing! |
| Beth Morton @beth_morton Co-hosting today’s #MigraineChat is my friend, Ellie (@MigraineEllie), a fierce migraine advocate, blogger, writer, and health policy analyst! |
 | Jenn Heater, Chief Oddity (she/her) @Medical_Oddity @beth_morton I’m Jenn from the San Francisco Bay Area #migrainechat |
| Beth Morton @beth_morton @rachel_x_graves Same here. 💜 Thanks for joining for a bit. #MigraineChat |
| Beth Morton @beth_morton A few standing reminders. This #MigraineChat is purely informational. Nothing shared should be considered medical advice or a substitute for talking with your doctor. |
| Beth Morton @beth_morton Twitter is a public forum and we are discussing health-related topics. Share only what is comfortable for you. Lastly, please refrain from posting GIFs with flashing media. They can be #migraine triggers for some. #MigraineChat |
| Beth Morton @beth_morton Most of us are #migraine advocates, some without even acknowledging it. Advocacy doesn’t need to be something grand and public. It takes many shapes and forms. Maybe you’ve never considered all the ways you’re an advocate. With that in mind, let’s discuss! #MigraineChat |
 | Ellie @MigraineEllie RT @beth_morton: Most of us are #migraine advocates, some without even acknowledging it. Advocacy doesn’t need to be something grand and public. It takes many shapes and forms. Maybe you’ve never considered all the ways you’re an advocate. With that in mind, let’s discuss! #MigraineChat |
| Beth Morton @beth_morton Q1. Is #migraine advocacy important to you? Why? Remember advocacy has a broad definition - it can be self advocacy or advocating for others! #MigraineChat https://t.co/fDdXvt1IIu |
 | ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday @beth_morton Hi everyone! I’m Sarah from NJ. I currently am working full time as an event planner which can be difficult with chronic migraine 😖 This will be my third year attending Headache on the Hill 🧠 #migrainechat |
 | Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Twitter is a public forum and we are discussing health-related topics. Share only what is comfortable for you. Lastly, please refrain from posting GIFs with flashing media. They can be #migraine triggers for some. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Most of us are #migraine advocates, some without even acknowledging it. Advocacy doesn’t need to be something grand and public. It takes many shapes and forms. Maybe you’ve never considered all the ways you’re an advocate. With that in mind, let’s discuss! #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q1. Is #migraine advocacy important to you? Why? Remember advocacy has a broad definition - it can be self advocacy or advocating for others! #MigraineChat https://t.co/fDdXvt1IIu |
 | Lisa Slevin Pierce @lisa3pierce Hey I'm Lisa from Oregon living with chronic migraine brain run amok😎 #MigraineChat |
| ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday RT @beth_morton: Most of us are #migraine advocates, some without even acknowledging it. Advocacy doesn’t need to be something grand and public. It takes many shapes and forms. Maybe you’ve never considered all the ways you’re an advocate. With that in mind, let’s discuss! #MigraineChat |
| ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday A1: Migraine advocacy is important to me, especially due to the stigma of migraine itself. So many people simply do not understand, so they judge. Getting our stories out there through lobbying, blogging, news articles and social media posts is key to our narrative #migrainechat |
| Beth Morton @beth_morton Q2. What is something you do to advocate for yourself or others with #migraine? #MigraineChat https://t.co/r66wIpR920 |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q2. What is something you do to advocate for yourself or others with #migraine? #MigraineChat https://t.co/r66wIpR920 |
 | harbinger of death @HemingwayMuse RT @beth_morton: Q2. What is something you do to advocate for yourself or others with #migraine? #MigraineChat https://t.co/r66wIpR920 |
| Lisa Slevin Pierce @lisa3pierce A1. Advocacy is absolutely necessary! Personally I have to be prepared for each appointment or my care will stall. Also I count on advocates for latest info and to lobby legislators for research funding #MigraineChat |
| Beth Morton @beth_morton @HemingwayMuse @rachel_x_graves Same. I had the benefit of information shared by some great migraine advocates, @GoldenGraine and @winedarkme on their blogs. And I know @HemingwayMuse has since shared her experience. The odds are stacked against #migraine (all) patients applying for SSI/SSDI #MigraineChat |
| harbinger of death @HemingwayMuse RT @beth_morton: @HemingwayMuse @rachel_x_graves Same. I had the benefit of information shared by some great migraine advocates, @GoldenGraine and @winedarkme on their blogs. And I know @HemingwayMuse has since shared her experience. The odds are stacked against #migraine (all) patients applying for SSI/SSDI #MigraineChat |
| Beth Morton @beth_morton Q3. How do your friends, family, and others react to or engage in your #migraine advocacy efforts? Are they supportive? #MigraineChat https://t.co/A0WCjLdfN0 |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q3. How do your friends, family, and others react to or engage in your #migraine advocacy efforts? Are they supportive? #MigraineChat https://t.co/A0WCjLdfN0 |
| harbinger of death @HemingwayMuse RT @beth_morton: Q3. How do your friends, family, and others react to or engage in your #migraine advocacy efforts? Are they supportive? #MigraineChat https://t.co/A0WCjLdfN0 |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: @HemingwayMuse @rachel_x_graves Same. I had the benefit of information shared by some great migraine advocates, @GoldenGraine and @winedarkme on their blogs. And I know @HemingwayMuse has since shared her experience. The odds are stacked against #migraine (all) patients applying for SSI/SSDI #MigraineChat |
| Lisa Slevin Pierce @lisa3pierce A2. Research and more research! I'm happy to share links to the most reliable research-based sites with others. Most important is that folks know it's a neurological full body disease- *Not Just a Headache!* I try to amplify advocate's voices too #MigraineChat |
 | NeurologyLive® @neurology_live RT @beth_morton: Q3. How do your friends, family, and others react to or engage in your #migraine advocacy efforts? Are they supportive? #MigraineChat https://t.co/A0WCjLdfN0 |
| Beth Morton @beth_morton I appreciate that you and everyone who participates takes that risk to be public about your #migraine experience. I truly believe we’re helping normalize the disease and fighting stigma. #MigraineChat |
| ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday A2: I try be as authentic (and sometimes raw) as possible when describing and sharing my story of living with migraine. Whether that’s through Headache on the Hill, another advocating campaign or social media It’s important to speak up for others who are unable. #migrainechat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: I appreciate that you and everyone who participates takes that risk to be public about your #migraine experience. I truly believe we’re helping normalize the disease and fighting stigma. #MigraineChat |
 | Jessie defund police fund abortions Losch💚🇺🇾🌱 @JessieLosch @beth_morton A1. I wouldn't have known how to advocate for myself if it weren't for migraine and pain advocates. So many of us are raised to trust the first doctor we go to, to think it's "just us" or that we should under represent the pain. #migrainechat |
| Beth Morton @beth_morton Q4. Because of #stigma, #migraine is drastically underfunded compared to diseases that are considered similarly disabling. What are some ways we could bring more attention to our cause? #MigraineChat https://t.co/khEDUlFcTg |
| harbinger of death @HemingwayMuse RT @beth_morton: Q4. Because of #stigma, #migraine is drastically underfunded compared to diseases that are considered similarly disabling. What are some ways we could bring more attention to our cause? #MigraineChat https://t.co/khEDUlFcTg |
| Ellie @MigraineEllie RT @beth_morton: I appreciate that you and everyone who participates takes that risk to be public about your #migraine experience. I truly believe we’re helping normalize the disease and fighting stigma. #MigraineChat |
| Lisa Slevin Pierce @lisa3pierce Advocate orgs like @MigraineAgain @amfmigraine and all their contributors have changed my life #migrainechat |
| Beth Morton @beth_morton @HemingwayMuse @winedarkme Yes! And the fact that many of us who are disabled by #migraine are on #Medicare, @CMSGov needs to step up and cover innovative treatments & devices, not exclude financial assistance like copay cards, etc. #MigraineChat |
| Beth Morton @beth_morton Q5. It can be hard to advocate if you have #migraine, especially chronic migraine. What are some tips you can give newer migraine advocates? How can someone start? #MigraineChat https://t.co/tx3GOberVS |
| harbinger of death @HemingwayMuse RT @beth_morton: @HemingwayMuse @winedarkme Yes! And the fact that many of us who are disabled by #migraine are on #Medicare, @CMSGov needs to step up and cover innovative treatments & devices, not exclude financial assistance like copay cards, etc. #MigraineChat |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q4. Because of #stigma, #migraine is drastically underfunded compared to diseases that are considered similarly disabling. What are some ways we could bring more attention to our cause? #MigraineChat https://t.co/khEDUlFcTg |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q5. It can be hard to advocate if you have #migraine, especially chronic migraine. What are some tips you can give newer migraine advocates? How can someone start? #MigraineChat https://t.co/tx3GOberVS |
| Beth Morton @beth_morton Absolutely!! This was how I started... through researching treatments for myself, then trying to share with you all as I was learning. It felt like pretty empowing. #MigraineChat |
| harbinger of death @HemingwayMuse RT @beth_morton: Q5. It can be hard to advocate if you have #migraine, especially chronic migraine. What are some tips you can give newer migraine advocates? How can someone start? #MigraineChat https://t.co/tx3GOberVS |
| ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday A4: As someone who struggles to work full time, I think turning the narrative back to how much it’s changing the workforce (missed work days, unemployment, disability). Migraine patients are super passionate & hard workers, but most are unable to work #migrainechat |
| Beth Morton @beth_morton Q6. We’ve touched on this a bit... but what types of policy/advocacy efforts would you like to see #migraine patients have more say in or be more involved in (e.g., talking with elected officials, engaging with pharma, shaping research, etc.)? #MigraineChat https://t.co/JdlECjw1yo |
| Dr. Alexandria Szeman: Award-Winning Author @Alexandria_SZ RT @beth_morton: Q6. We’ve touched on this a bit... but what types of policy/advocacy efforts would you like to see #migraine patients have more say in or be more involved in (e.g., talking with elected officials, engaging with pharma, shaping research, etc.)? #MigraineChat https://t.co/JdlECjw1yo |
| NeurologyLive® @neurology_live A5: Especially for those with chronic migraine, obtaining a referral to a headache specialist from your PCP is an important request to make to improve the quality of your care. @DawnBuse spoke on this topic: https://t.co/icjtMNER1W |
| NeurologyLive® @neurology_live A5: Especially for those with chronic migraine, obtaining a referral to a headache specialist from your PCP is an important request to make to improve the quality of your care. @DawnBuse spoke on this topic: https://t.co/Thc7NT4RVR #MigraineChat |
 | Marco Meglio @marcomeglio1 @beth_morton A6: #Migraine patients need to be transparent and communicative with doctors and vice versa. Understanding what drugs are in the pipeline and what progress is being made can ultimately create a stronger voice in the community and increase advocacy efforts. #MigraineChat |
| Lisa Slevin Pierce @lisa3pierce A6. Patients need to be included in forming research! Every treatment now is aimed at 1 thing- headache pain (which is huge). This is *not* a 1 thing disease and ignoring that puts all patients at greater risk for becoming chronic #MigraineChat |
| Ellie @MigraineEllie RT @marcomeglio1: @beth_morton A6: @beth_morton A6: #Migraine patients need to be transparent and communicative with doctors and vice versa. Understanding what drugs are in the pipeline and what progress is being made can ultimately create a stronger voice in the community and increase advocacy efforts. #MigraineChat |
| Beth Morton @beth_morton @HemingwayMuse 🙌🏻 AMEN #MigraineChat https://t.co/80YHmD66gB |
| Beth Morton @beth_morton CT (Closing Thoughts): Any big takeaways you’d like to share? Questions? Any resources that we can share to help you get started on your advocacy journey? #MigraineChat |
| Beth Morton @beth_morton Thanks, Ellie, for co-hosting this month’s chat and everyone for joining! Mark your calendars for #MigraineChat on March 2nd (or add a reminder ⬇️). I’ll share a list of a few accounts to follow to start your advocacy efforts below. https://t.co/L1cZXowv8Z |
| ChronicMigraine Girl 🌈✨🌈 she/her @migrainesallday A5: Work together! More migraine brains are better than one. I know personally some tasks can seem daunting or you don’t know where to start. If we combine our efforts, the message will come across stronger. Our migraines may have a bite to them but we don’t! 💜#migrainechat |
| Beth Morton @beth_morton Just a few #migraine & #ChronicPain orgs to kickstart your advocacy: Miles for Migraine @miles4migraine CHAMP @CoalitionCHAMP AHDA @AHDAorg CMA @CMAware HMPF @headachepolicy US Pain @US_Pain GHLF @GHLForg #MigraineChat |
| harbinger of death @HemingwayMuse A4. Another stigma that I don’t know if we talk about is the way commercials portray migraine sufferers. It isn’t realistic when people’s only exposure to migraine is an Emgality commercial, how we actually respond to treatments + some symptoms don’t go away. |
| Beth Morton @beth_morton I’m going to hop off to head into my appointment, then probably crash, but promise to engage more later. Sorry for being less responsive today. Keep chatting! #MigraineChat |
| Lisa Slevin Pierce @lisa3pierce It looks like most here are well-educated about migraine and chronic migraine, so our advocacy and education about it as a neurological disease that needs more funding is huge! Tell everyone it's #NotJustAHeadache ! Take good care, friends💜 #MigraineChat |
#MigraineChat content from Twitter.