#CreakyChats Transcript
Healthcare social media transcript of the #CreakyChats hashtag.
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See #CreakyChats Influencers/Analytics.
| Profile | Tweet |
|---|---|
 | Shelley Fritz @Dividivigirl RT @TheSeatedView: Great #CreakyChats with @CureArthritis today at 6 PM ET! Are you joining us? https://t.co/kwITZhdzJe |
 | CreakyJoints.org @CreakyJoints Good evening and welcome to #CreakyChats! Tonight we are talking about research with @CureArthritis. #CreakyChats |
| CreakyJoints.org @CreakyJoints #CreakyChats follows a Q1; A1 format. Please make sure to label your responses. Example: to answer the first question, reply with A1. And make sure to us the hashtag #CreakyChats at the end! |
 | Seth D. Ginsberg @SethSaidSo RT @CreakyJoints: Good evening and welcome to #CreakyChats! Tonight we are talking about research with @CureArthritis. #CreakyChats |
| CreakyJoints.org @CreakyJoints Before we get started let’s introduce ourselves. Who’s joining us tonight? #CreakyChats |
 | Eddie Applegate @IAmEddie75 RT @CreakyJoints: Good evening and welcome to #CreakyChats! Tonight we are talking about research with @CureArthritis. #CreakyChats |
 | Deb Constien @debconstien @CreakyJoints Deb Constien popping in when I can. #CreakyChats |
 | DB @DB_562 @CreakyJoints @DB_562 here... Marketing Director for @CureArthritis :) Thanks for having us @CreakyJoints! #CreakyChats |
| Eddie Applegate @IAmEddie75 @CreakyJoints Hey y’all. Eddie is here from Alpharetta (aka Atlanta suburb) #CreakyChats |
| CreakyJoints.org @CreakyJoints Happy to have you! https://t.co/htKG2i8WZA |
| Shelley Fritz @Dividivigirl Hi! This is Shelley from Florida #creakychats |
| Deb Constien @debconstien @CreakyJoints Hey there!! Glad to hop in! #CreakyChats |
| CreakyJoints.org @CreakyJoints Alright, let's get started! Q1: What words or feelings come to mind when you think of research? #CreakyChats |
 | Arthritis National Research Foundation @CureArthritis @CreakyJoints Brandi from #CureArthritis checking in! Looking forward to today's chat! #CreakyChats |
 | Annette McKinnon @anetto Hi, Annette here in Toronto. Patient, research partner, involved in many roles engaged patients can play. #creakychats |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints A1: Hope and knowledge are the words that come to mind. Hope that we can #CureArthritis one day. Knowledge so that we can get smarter in the search to find solutions, treatments and a better understanding of these diseases. #CreakyChats |
 | Laurie Proulx @ProulxLaurie Laurie from Ottawa Canada here. Diagnosed w/Juvenile Rheumatoid Arthritis 27 years ago @ age 14. Executive of @CAPA_Arthritis #CreakyChats |
 | Ross @Rossco006 @TheSeatedView @CureArthritis Hey Lene! Great to see you! #CreakyChats |
 | Thérèse💙 @TerezHumphrey Terez here..will try to follow and be a part as best I can. Very interested in this topic- #Research! so very needed to finding answers and possibly a damn cure! #creakychats |
| Shelley Fritz @Dividivigirl A1: Hope, encouragement, seeking a cure #creakychats |
 | Tami Morse @morse_tami @CreakyJoints A1 Help, hope, brilliant scientists! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Alright, let's get started! Q1: Alright, let's get started! Q1: What words or feelings come to mind when you think of research? #CreakyChats |
| Annette McKinnon @anetto Great to see so many #rheum people in one place. #creakychats |
| DB @DB_562 @CreakyJoints A1: Hope for a future without #arthritis. Innovative scientists, patients, doctors and donors coming together to #CureArthritis! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @DB_562: @CreakyJoints A1: @CreakyJoints A1: Hope for a future without #arthritis. Innovative scientists, patients, doctors and donors coming together to #CureArthritis! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @morse_tami: @CreakyJoints A1 Help, hope, brilliant scientists! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @DB_562: @CreakyJoints @DB_562 here... Marketing Director for @CureArthritis :) Thanks for having us @CreakyJoints! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @CreakyJoints Brandi from #CureArthritis checking in! Looking forward to today's chat! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @anetto: Hi, Annette here in Toronto. Patient, research partner, involved in many roles engaged patients can play. #creakychats |
| CreakyJoints.org @CreakyJoints RT @Dividivigirl: Hi! This is Shelley from Florida #creakychats |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: |
| CreakyJoints.org @CreakyJoints RT @BamaEd: @CreakyJoints Hey y’all. Eddie is here from Alpharetta (aka Atlanta suburb) #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @debconstien: @CreakyJoints Deb Constien popping in when I can. #CreakyChats |
| DB @DB_562 RT @CureArthritis: @CreakyJoints A1: @CreakyJoints A1: Hope and knowledge are the words that come to mind. Hope that we can #CureArthritis one day. Knowledge so that we can get smarter in the search to find solutions, treatments and a better understanding of these diseases. #CreakyChats |
| Annette McKinnon @anetto A1 Research makes me think of smart people, to be simplistic about it. #creakychats |
| Ross @Rossco006 @CreakyJoints Ross here from frigid Saskatchewan! #CreakyChats |
| Eddie Applegate @IAmEddie75 @CreakyJoints A1. Previously I thought it meant I’d be a lab rat or end up with a sugar pill. Now, I know it means anything that helps scientists know more about my disease, even if it’s just a survey #CreakyChats |
| Annette McKinnon @anetto A1 When I look at research links I can't help but wonder sometimes "What were they thinking?" #creakychats |
| CreakyJoints.org @CreakyJoints RT @anetto: A1 Research makes me think of smart people, to be simplistic about it. #creakychats |
 | Catherine @Catheri79513784 #CreakyChats yep it's me! |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A1: |
| CreakyJoints.org @CreakyJoints RT @Spondydoc: |
| CreakyJoints.org @CreakyJoints RT @DB_562: @CreakyJoints A1: @CreakyJoints A1: Hope for a future without #arthritis. Innovative scientists, patients, doctors and donors coming together to #CureArthritis! #CreakyChats |
 | 🌻Wren🌻 @RheumaBlog_Wren @TO_dpr A1: Hope. I would so love to live the rest of my life without pain and fatigue. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @anetto: Great to see so many #rheum people in one place. #creakychats |
| Thérèse💙 @TerezHumphrey @CreakyJoints A1. Better treatments, credibility when patients involved, Knowledge, hope, a better future for us, cure, answers! #CreakyChats |
| Laurie Proulx @ProulxLaurie A1: New knowledge, evidence based medicine and meeting relevant patient needs - newly diagnosed & old folks like me 😉 #CreakyChats |
| Ross @Rossco006 @Dividivigirl That’s where I need to be!! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @ProulxLaurie: A1: A1: New knowledge, evidence based medicine and meeting relevant patient needs - newly diagnosed & old folks like me 😉 #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @TerezHumphrey: @CreakyJoints A1. Better treatments, credibility when patients involved, Knowledge, hope, a better future for us, cure, answers! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @Spondydoc: |
| CreakyJoints.org @CreakyJoints RT @RheumaBlog_Wren: @TO_dpr A1: @TO_dpr A1: Hope. I would so love to live the rest of my life without pain and fatigue. #CreakyChats |
| Ross @Rossco006 @unitedadvocacy @CreakyJoints Hi Judy! #CreakyChats |
 | CAPA @CAPA_Arthritis Great to see #creakychats talking about research |
| CreakyJoints.org @CreakyJoints RT @BamaEd: @CreakyJoints A1. Previously I thought it meant I’d be a lab rat or end up with a sugar pill. Now, I know it means anything that helps scientists know more about my disease, even if it’s just a survey #CreakyChats |
 | Lilly Stairs @LillyStairs RT @BamaEd: @CreakyJoints A1. Previously I thought it meant I’d be a lab rat or end up with a sugar pill. Now, I know it means anything that helps scientists know more about my disease, even if it’s just a survey #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren #CreakyChats https://t.co/eeV4L8I4tB |
 | Michele Rhee @michelerhee A1: hope, options, and education! And sometimes, #scifi and I-live-in-the-future lol. #creakychats https://t.co/MUa9m9bE8g |
 | Lene Andersen @TheSeatedView @Rossco006 @CureArthritis Going to scarf down dinner, then I'll be back #CreakyChats |
| Laurie Proulx @ProulxLaurie @TerezHumphrey @CreakyJoints Like your point about engaging patients! #CreakyChats |
| Ross @Rossco006 @anetto Hi Annette! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @michelerhee: A1: A1: hope, options, and education! And sometimes, #scifi and I-live-in-the-future lol. #creakychats https://t.co/MUa9m9bE8g |
| Annette McKinnon @anetto A1 Enthusiastic to see all the bases of #rheum covered by research - self management, science, psychosocial, drug effectiveness #creakychats |
 | Patient Advisors @PatientAdvisors RT @michelerhee: A1: A1: hope, options, and education! And sometimes, #scifi and I-live-in-the-future lol. #creakychats https://t.co/MUa9m9bE8g |
| Thérèse💙 @TerezHumphrey @CreakyJoints A1. cont'd ...Need More of it! Being a patient, I want to be more involved in research- take me- I'm yours! #CreakyChats |
 | Dr Mary Ann Wilmarth @Back2backPT Hello All @Back2backPT here from New England Yes, we are 🏈☹️ today... And I followed that w/ #Rheum appt getting failing grades for #Orencia & #Methotrexate Looking forward to #positivity w/ #CreakyChats @CreakyJoints @curearthritis ☀️✨ https://t.co/RLjtz5jdpL |
| CreakyJoints.org @CreakyJoints RT @anetto: A1 Enthusiastic to see all the bases of #rheum covered by research - self management, science, psychosocial, drug effectiveness #creakychats |
| CreakyJoints.org @CreakyJoints RT @K_Betteridge: |
| Laurie Proulx @ProulxLaurie RT @TO_dpr: |
| Ross @Rossco006 A1: The first thing that comes to mind is that there is hope for some of the answers that we are needing! #CreakyChats https://t.co/mmS2VkbT17 |
 | Nora Sundin @nora_sundin @CreakyJoints Additional options #CreakyChats |
| Arthritis National Research Foundation @CureArthritis @anetto It's definitely exciting to see where #rheum research is going! So many different leads being covered. #CreakyChats |
 | DawgPoundHound @DawgPoundHound Hi! Lisa here with RA. I've already had 2 joints replaced and I'm 53. My knee was replaced in 1999 https://t.co/IBHX5lUtvD |
 | Barby Ingle Official @BarbyIngle A1. Hope, new opportunity, treatment options, access to proper and timely care #CreakyChats https://t.co/liqzv6SmkY |
 | International Pain Foundation® @iPainOfficial RT @BarbyIngle: A1. Hope, new opportunity, treatment options, access to proper and timely care #CreakyChats https://t.co/liqzv6SmkY |
 | Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A1. Hope, new opportunity, treatment options, access to proper and timely care #CreakyChats https://t.co/liqzv6SmkY |
| Ross @Rossco006 @RheumaBlog_Wren @CreakyJoints Good to see you! #CreakyChats |
| CAPA @CAPA_Arthritis RT @TO_dpr: @cateepoo88 @RheumaBlog_Wren I hear you re: |
| CreakyJoints.org @CreakyJoints Q2: What kind of questions about chronic disease would you like to see answered by research and/or what are some of the research topics in chronic disease that you would like to see? #CreakyChats |
| Lene Andersen @TheSeatedView @CreakyJoints A1: hope. Research is all about hope. I grew up w/#JA when little was known & no treatment. And look where we are are now! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Q2: Q2: What kind of questions about chronic disease would you like to see answered by research and/or what are some of the research topics in chronic disease that you would like to see? #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @BarbyIngle: A1. Hope, new opportunity, treatment options, access to proper and timely care #CreakyChats https://t.co/liqzv6SmkY |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @anetto It's definitely exciting to see where #rheum research is going! So many different leads being covered. #CreakyChats |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints We are most interested in finding out what causes the various forms of #arthritis. If we can understand the causes, then we can develop research to figure out how to prevent and/or reverse these conditions. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @Rossco006: A1: A1: The first thing that comes to mind is that there is hope for some of the answers that we are needing! #CreakyChats https://t.co/mmS2VkbT17 |
| CreakyJoints.org @CreakyJoints RT @TheSeatedView: @CreakyJoints A1: @CreakyJoints A1: hope. Research is all about hope. I grew up w/#JA when little was known & no treatment. And look where we are are now! #CreakyChats |
| Ross @Rossco006 @cateepoo88 Hi! Great to see you here. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @CreakyJoints We are most interested in finding out what causes the various forms of #arthritis. If we can understand the causes, then we can develop research to figure out how to prevent and/or reverse these conditions. #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren @TO_dpr @cateepoo88 Good to know! #CreakyChats |
| DB @DB_562 RT @CureArthritis: @CreakyJoints We are most interested in finding out what causes the various forms of #arthritis. If we can understand the causes, then we can develop research to figure out how to prevent and/or reverse these conditions. #CreakyChats |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints A2 cont: Research topics we’re currently supporting involve genetics, the gut microbiome, adult stem cells & new molecular treatments for a variety of conditions. Innovation & getting us closer to new treatments and a cure. More @ https://t.co/Gfby2LSTUQ #CreakyChats |
| Ross @Rossco006 @rbouchard007 @CreakyJoints Awesome to see you Ray! #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren @Rossco006 @CreakyJoints Ditto! 😊#CreakyChats |
| Ross @Rossco006 RT @TO_dpr: |
| DB @DB_562 RT @CureArthritis: @CreakyJoints A2 cont: @CreakyJoints A2 cont: Research topics we’re currently supporting involve genetics, the gut microbiome, adult stem cells & new molecular treatments for a variety of conditions. Innovation & getting us closer to new treatments and a cure. More @ https://t.co/Gfby2LSTUQ #CreakyChats |
| Arthritis National Research Foundation @CureArthritis @SimonRStones @CreakyJoints Hi there, Simon! Glad to have you! #CreakyChats |
| Laurie Proulx @ProulxLaurie A2: pregnancy & arthritis a big one for me and many others. A lot of great work @MotherToBaby but more data needed #CreakyChats |
| Tami Morse @morse_tami @CreakyJoints I want to know what caused Rheumatoid Disease in my body. Therein lies the crux of the problem. Seems like THAT would get us closer to a cure. #CreakyChats |
| Barby Ingle Official @BarbyIngle A2. I'd like more answers on Neuro-Autoimmune diseases & rare/less known pain diseases through research studies. #CreakyChats https://t.co/7ABD5LCBC1 |
| CAPA @CAPA_Arthritis A1 Patients can be involved as partners on research teams. That really helps in avoiding researching outcomes that don't matter to patients. #creakychats |
| DawgPoundHound @DawgPoundHound Where can I sign up? I need a cure https://t.co/uebZB7CGQ8 |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A2. I'd like more answers on Neuro-Autoimmune diseases & rare/less known pain diseases through research studies. #CreakyChats https://t.co/7ABD5LCBC1 |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A2. I'd like more answers on Neuro-Autoimmune diseases & rare/less known pain diseases through research studies. #CreakyChats https://t.co/7ABD5LCBC1 |
 | iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A2. I'd like more answers on Neuro-Autoimmune diseases & rare/less known pain diseases through research studies. #CreakyChats https://t.co/7ABD5LCBC1 |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A1: |
| CreakyJoints.org @CreakyJoints RT @morse_tami: @CreakyJoints I want to know what caused Rheumatoid Disease in my body. Therein lies the crux of the problem. Seems like THAT would get us closer to a cure. #CreakyChats |
| Michele Rhee @michelerhee A2: I'd like to know more about the misdiagnosed and undiagnosed. I know a lot of us struggled without the right diagnosis for too long, and I'd love to see research and answers on how to improve the diagnostic journey. #CreakyChats https://t.co/tkVKt4BrAE |
| CreakyJoints.org @CreakyJoints RT @ProulxLaurie: A2: A2: pregnancy & arthritis a big one for me and many others. A lot of great work @MotherToBaby but more data needed #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: |
| Arthritis National Research Foundation @CureArthritis RT @michelerhee: A2: A2: I'd like to know more about the misdiagnosed and undiagnosed. I know a lot of us struggled without the right diagnosis for too long, and I'd love to see research and answers on how to improve the diagnostic journey. #CreakyChats https://t.co/tkVKt4BrAE |
| CreakyJoints.org @CreakyJoints RT @michelerhee: A2: A2: I'd like to know more about the misdiagnosed and undiagnosed. I know a lot of us struggled without the right diagnosis for too long, and I'd love to see research and answers on how to improve the diagnostic journey. #CreakyChats https://t.co/tkVKt4BrAE |
| CreakyJoints.org @CreakyJoints RT @CAPA_Arthritis: A1 Patients can be involved as partners on research teams. That really helps in avoiding researching outcomes that don't matter to patients. #creakychats |
| Shelley Fritz @Dividivigirl A2: I'm interested in the correlation between RA and Celiac/gluten intolerance/gut biome and possible cause/effect of RA and pulmonary embolisms #creakychats |
| Ross @Rossco006 @TerezHumphrey As am I! I think we are all looking for answers within research! It gives us hope that someone is trying to help us! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A2: |
| 🌻Wren🌻 @RheumaBlog_Wren @CureArthritis @CreakyJoints I think you're doing some of the most important work in the world. Thank you! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @Dividivigirl: A2: A2: I'm interested in the correlation between RA and Celiac/gluten intolerance/gut biome and possible cause/effect of RA and pulmonary embolisms #creakychats |
| Eddie Applegate @IAmEddie75 @CreakyJoints A2. I think discussing specific types of arthritis. But also different symptoms such as fatigue. Ones that aren’t quantifiable in blood tests. #CreakyChats |
| DB @DB_562 @ProulxLaurie @MotherToBaby Dr. Jawaheer at Oakland Children’s just got her R01 on this exactly. Exciting work! #CreakyChats |
| Dr Mary Ann Wilmarth @Back2backPT A1: Historically, #statistics Currently, #necessary #patient-centered #Research that will help #cure #arthritis & other #illnesses #diseases Need segue between #researchers #clinicians #patients #CreakyChats @Back2backPT @CreakyJoints @curearthritis https://t.co/0UKL95ZQJR |
| Nora Sundin @nora_sundin @CreakyJoints A2 More focus on Ankylosing Spondylitis and a better understanding of its impacts; medications with less side effects; #creakychats |
| Laurie Proulx @ProulxLaurie A2: or sometimes answers to very tangible issues like how do I manage side effects of meds like MTX? How do I keep working? #CreakyChats |
| Michele Rhee @michelerhee RT @TO_dpr: A2: |
| Arthritis National Research Foundation @CureArthritis @RheumaBlog_Wren @CreakyJoints Thank you, Leslie! We're doing everything we can to #CureArthritis! Even everyone's participation today makes an impact! #CreakyChats |
| Thérèse💙 @TerezHumphrey @CAPA_Arthritis I'm constantly looking for availability of research ops but not having much luck! #creakychats |
| DB @DB_562 @TO_dpr Scientists at U of Michigan are working with zebra fish to finds ways to do this! #CreakyChats |
| Annette McKinnon @anetto A2 People with arthritis live longer through better treatments. What happens to the aging #rheum body? #creakychats |
| Dr Mary Ann Wilmarth @Back2backPT Good one👍 @TO_dpr @Back2backPT #CreakyChats https://t.co/zNsWdLRvQr |
| Arthritis National Research Foundation @CureArthritis @TerezHumphrey @CAPA_Arthritis Try https://t.co/4IMuWLcFX5 for available ops! #CreakyChats #CreakyChats |
| Ross @Rossco006 @BamaEd @CreakyJoints Great seeing you here Eddie! #CreakyChats |
 | Alan Brewington @abrewi3010 A2 I would like to see more research into the costs of chronic illnesses related to public health & employers. This would help develop better policies & fight stigmas. #creakychats |
| CreakyJoints.org @CreakyJoints RT @anetto: A2 People with arthritis live longer through better treatments. What happens to the aging #rheum body? #creakychats |
| Annette McKinnon @anetto RT @TO_dpr: A2: |
| CreakyJoints.org @CreakyJoints RT @Spondydoc: |
| 🌻Wren🌻 @RheumaBlog_Wren @CreakyJoints A2: #CreakyChats What is the root cause of RA; why does it affect each of us differently; and why do meds help each of us differently (or not at all)? |
| Arthritis National Research Foundation @CureArthritis @TerezHumphrey @CAPA_Arthritis Try https://t.co/4IMuWLcFX5 for available ops! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @nora_sundin: @CreakyJoints A2 More focus on Ankylosing Spondylitis and a better understanding of its impacts; medications with less side effects; #creakychats |
| CreakyJoints.org @CreakyJoints Q3: Have you ever participated in research? If so what kind (clinical, patient reported outcomes, observational)? #CreakyChats |
| Ross @Rossco006 This! #CreakyChats https://t.co/ipopCqpJCp |
| Dr Mary Ann Wilmarth @Back2backPT I concur 200%‼️ @michelerhee @Back2backPT #CreakyChats https://t.co/8SxmiBDyyQ |
| CreakyJoints.org @CreakyJoints RT @RheumaBlog_Wren: @CreakyJoints A2: @CreakyJoints A2: #CreakyChats What is the root cause of RA; why does it affect each of us differently; and why do meds help each of us differently (or not at all)? |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Q3: Q3: Have you ever participated in research? If so what kind (clinical, patient reported outcomes, observational)? #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @abrewi3010: A2 I would like to see more research into the costs of chronic illnesses related to public health & employers. This would help develop better policies & fight stigmas. #creakychats |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @TerezHumphrey @CAPA_Arthritis Try https://t.co/4IMuWLcFX5 for available ops! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @Back2backPT: I concur 200%‼️ @michelerhee @Back2backPT #CreakyChats https://t.co/8SxmiBDyyQ |
| CreakyJoints.org @CreakyJoints RT @Rossco006: This! #CreakyChats https://t.co/ipopCqpJCp |
| Shelley Fritz @Dividivigirl RT @CureArthritis: @TerezHumphrey @CAPA_Arthritis Try https://t.co/4IMuWLcFX5 for available ops! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints A3: We don’t personally participate, but we have the pleasure of funding over $1 million in #ArthritisResearch every year. There is still a lot of work to do and we’re grateful for the #CureArthritis community that helps us fund this research. #CreakyChats |
| Thérèse💙 @TerezHumphrey @CreakyJoints A2. What causes our immune systems to go against us & why do we all respond so differently to treatments/meds, Need to find better answers to stop progression of inflammation, Personally speaking.. aging with rheumatoid arthritis, menopause/hormonal influence on RA #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren @JediMaster941 @CreakyJoints A2: YES! Also, how can we know if we will pass on RA, AS, etc. to our kids for sure? #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @TerezHumphrey: @CreakyJoints A2. What causes our immune systems to go against us & why do we all respond so differently to treatments/meds, Need to find better answers to stop progression of inflammation, Personally speaking.. aging with rheumatoid arthritis, menopause/hormonal influence on RA #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @CreakyJoints A3: @CreakyJoints A3: We don’t personally participate, but we have the pleasure of funding over $1 million in #ArthritisResearch every year. There is still a lot of work to do and we’re grateful for the #CureArthritis community that helps us fund this research. #CreakyChats |
| DawgPoundHound @DawgPoundHound @CreakyJoints A3. I have not, but would absolutely love to participate #creakychats |
| DB @DB_562 RT @CureArthritis: @CreakyJoints A3: @CreakyJoints A3: We don’t personally participate, but we have the pleasure of funding over $1 million in #ArthritisResearch every year. There is still a lot of work to do and we’re grateful for the #CureArthritis community that helps us fund this research. #CreakyChats |
| Annette McKinnon @anetto A3 In research I have been a research partner, a subject, a co-author, all at different times. #creakychats |
| 🌻Wren🌻 @RheumaBlog_Wren @anetto @CreakyJoints #CreakyChats As an aging rheum body, I'd like the answer to this one, too. ;o) |
| Annette McKinnon @anetto RT @RheumaBlog_Wren: @anetto @CreakyJoints #CreakyChats As an aging rheum body, I'd like the answer to this one, too. ;o) |
| CreakyJoints.org @CreakyJoints RT @anetto: A3 In research I have been a research partner, a subject, a co-author, all at different times. #creakychats |
| CreakyJoints.org @CreakyJoints Pssst.... we have https://t.co/7rLVjiwRLj #CreakyChats https://t.co/lTbqg3HC1O |
| CreakyJoints.org @CreakyJoints RT @DawgPoundHound: @CreakyJoints A3. I have not, but would absolutely love to participate #creakychats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A2: |
| CAPA @CAPA_Arthritis RT @TerezHumphrey: @CreakyJoints A2. What causes our immune systems to go against us & why do we all respond so differently to treatments/meds, Need to find better answers to stop progression of inflammation, Personally speaking.. aging with rheumatoid arthritis, menopause/hormonal influence on RA #CreakyChats |
| Barby Ingle Official @BarbyIngle A3. I have personally participated in multiple clinical trials, pt reported outcomes, observational, surevy reports, 20 year studies. My case has been documented in multiple medical journals as well. #CreakyChats https://t.co/Vca9aPR4Z7 |
| Arthritis National Research Foundation @CureArthritis RT @BarbyIngle: A3. I have personally participated in multiple clinical trials, pt reported outcomes, observational, surevy reports, 20 year studies. My case has been documented in multiple medical journals as well. #CreakyChats https://t.co/Vca9aPR4Z7 |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A3. I have personally participated in multiple clinical trials, pt reported outcomes, observational, surevy reports, 20 year studies. My case has been documented in multiple medical journals as well. #CreakyChats https://t.co/Vca9aPR4Z7 |
| Ross @Rossco006 Yes! Yes! And once again Yes! #CreakyChats https://t.co/Svdrvs4WI8 |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A3. I have personally participated in multiple clinical trials, pt reported outcomes, observational, surevy reports, 20 year studies. My case has been documented in multiple medical journals as well. #CreakyChats https://t.co/Vca9aPR4Z7 |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A3. I have personally participated in multiple clinical trials, pt reported outcomes, observational, surevy reports, 20 year studies. My case has been documented in multiple medical journals as well. #CreakyChats https://t.co/Vca9aPR4Z7 |
| Barby Ingle Official @BarbyIngle RT @Rossco006: Yes! Yes! And once again Yes! #CreakyChats https://t.co/Svdrvs4WI8 |
| Tami Morse @morse_tami A3. No, I live in Broken Arrow, OK, a suburb of Tulsa. There haven’t been any opportunities in my state I’ve seen. I’ve had RA since I was about 3 yo, I’m 58 now😳 A CURE is coming in my lifetime. My 3 granddaughters depend on it! #CreakyChats https://t.co/8MHIdaIRqd |
| Arthritis National Research Foundation @CureArthritis RT @morse_tami: A3. No, I live in Broken Arrow, OK, a suburb of Tulsa. There haven’t been any opportunities in my state I’ve seen. I’ve had RA since I was about 3 yo, I’m 58 now😳 A CURE is coming in my lifetime. My 3 granddaughters depend on it! #CreakyChats https://t.co/8MHIdaIRqd |
| Thérèse💙 @TerezHumphrey @CreakyJoints A3. I participated w/ pharm & researchers discussing clinical trials etc. Pros & cons as a patient. It was awesome! I want to do it again! #CreakyChats |
 | Linda Girgis MD @DrLindaMD RT @abrewi3010: A2 I would like to see more research into the costs of chronic illnesses related to public health & employers. This would help develop better policies & fight stigmas. #creakychats |
| CreakyJoints.org @CreakyJoints RT @morse_tami: A3. No, I live in Broken Arrow, OK, a suburb of Tulsa. There haven’t been any opportunities in my state I’ve seen. I’ve had RA since I was about 3 yo, I’m 58 now😳 A CURE is coming in my lifetime. My 3 granddaughters depend on it! #CreakyChats https://t.co/8MHIdaIRqd |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A3: |
| CreakyJoints.org @CreakyJoints RT @BarbyIngle: A3. I have personally participated in multiple clinical trials, pt reported outcomes, observational, surevy reports, 20 year studies. My case has been documented in multiple medical journals as well. #CreakyChats https://t.co/Vca9aPR4Z7 |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A2: |
| Annette McKinnon @anetto A3 Useful if primary care doctors were able to recognize inflammatory arthritis more easily, so diagnosis would speed up. #creakychats |
| 🌻Wren🌻 @RheumaBlog_Wren @CreakyJoints A3: Yes. I've been filling out the National Data Bank for Rheumatic Diseases questionnaire every six months since 2010. I guess that's patient reported, observational? #CreakyChats |
| Shelley Fritz @Dividivigirl A3: YES! I have participated in clinical trials and I participate in patient reported outcome research #ArthritisPower @CreakyJoints #creakychats It is easy to participate and is a win-win for patients and the research community. |
| CreakyJoints.org @CreakyJoints RT @TerezHumphrey: @CreakyJoints A3. I participated w/ pharm & researchers discussing clinical trials etc. Pros & cons as a patient. It was awesome! I want to do it again! #CreakyChats |
 | Denise Michelle @ladyinlksd RT @CreakyJoints: Pssst.... we have https://t.co/7rLVjiwRLj #CreakyChats https://t.co/lTbqg3HC1O |
| Ross @Rossco006 I’d like to find out what is linking so many chronic diseases together. We commonly see more than one chronic disease being diagnosed in an individual. #CreakyChats https://t.co/bebClo9YK6 |
| CreakyJoints.org @CreakyJoints RT @Dividivigirl: A3: A3: YES! I have participated in clinical trials and I participate in patient reported outcome research #ArthritisPower @CreakyJoints #creakychats It is easy to participate and is a win-win for patients and the research community. |
| Dr Mary Ann Wilmarth @Back2backPT A2: I would like to see #research on how people with #arthritis both #OA & #InflammatoryArthritis & #immune issues ie. #IgG #CVID etc do compared to those w/only arthritis @Back2backPT #CreakyChats @CreakyJoints @curearthritis https://t.co/ytnsofM5Bf |
| Thérèse💙 @TerezHumphrey A3. I want to find and become more involved with more opportunities! I'm raising my hand high!!!! 🙋🙋#CreakyChats https://t.co/KFtUlNUrxC |
| Michele Rhee @michelerhee A3: I've been in 2 observational studies for my #raredisease. I didn't realize until I was a study coordinator and then worked for study sponsors how important and vital observational studies and participants are. Every patient matters. #CreakyChats https://t.co/Q0L8weizka |
 | Catherine @starweaver @CreakyJoints A3: yes. Early clinical trials of biologics! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A3: |
| CreakyJoints.org @CreakyJoints RT @RheumaBlog_Wren: @CreakyJoints A3: @CreakyJoints A3: Yes. I've been filling out the National Data Bank for Rheumatic Diseases questionnaire every six months since 2010. I guess that's patient reported, observational? #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @anetto: A3 Useful if primary care doctors were able to recognize inflammatory arthritis more easily, so diagnosis would speed up. #creakychats |
| Tami Morse @morse_tami @SimonRStones @CreakyJoints Yes!! I’ve been on biologics 10 years. On #4 for passed 6 years. Great response!! #CreakyChats |
| CreakyJoints.org @CreakyJoints Q4: In your experience, what are the benefits of participating in research? #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Q4: Q4: In your experience, what are the benefits of participating in research? #CreakyChats |
| Shelley Fritz @Dividivigirl @Rossco006 Me too. I'd like to know what causes the domino effect of piling on autoimmune diseases and how many people have multiple autoimmune conditions develop after their initial diagnosis. #creakychats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A3: |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints A4: Scientists need samples to test in the lab. There is only so much that can be done in culture and in mouse models before human cells and subjects are needed. Participating in a clinical trial is beneficial for yourself and for others. https://t.co/4IMuWLcFX5 #CreakyChats |
 | IndieSF&FantasyBooks @indieSFFbooks RT @michelerhee: A1: A1: hope, options, and education! And sometimes, #scifi and I-live-in-the-future lol. #creakychats https://t.co/MUa9m9bE8g |
| CreakyJoints.org @CreakyJoints RT @starweaver: @CreakyJoints A3: @CreakyJoints A3: yes. Early clinical trials of biologics! #CreakyChats |
| CreakyJoints.org @CreakyJoints Please make sure to practice #selfcare during #CreakyChats. That could mean stretching, grabbing water or turning up your favorite tracks. #CreakyChats https://t.co/1CJKFuL1HR |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A3: |
| Ross @Rossco006 A2: I’d like to know why we are seeing so many people being diagnosed with more than one chronic disease. #CreakyChats https://t.co/bebClo9YK6 |
| CreakyJoints.org @CreakyJoints RT @michelerhee: A3: A3: I've been in 2 observational studies for my #raredisease. I didn't realize until I was a study coordinator and then worked for study sponsors how important and vital observational studies and participants are. Every patient matters. #CreakyChats https://t.co/Q0L8weizka |
| CreakyJoints.org @CreakyJoints RT @TerezHumphrey: A3. I want to find and become more involved with more opportunities! I'm raising my hand high!!!! 🙋🙋#CreakyChats https://t.co/KFtUlNUrxC |
| CreakyJoints.org @CreakyJoints RT @Back2backPT: A2: A2: I would like to see #research on how people with #arthritis both #OA & #InflammatoryArthritis & #immune issues ie. #IgG #CVID etc do compared to those w/only arthritis @Back2backPT #CreakyChats @CreakyJoints @curearthritis https://t.co/ytnsofM5Bf |
 | starweaver @chronicallyfab1 And we love you for all your hard work @CureArthritis https://t.co/KYKqU0lTcD |
| DB @DB_562 RT @CureArthritis: @CreakyJoints A4: @CreakyJoints A4: Scientists need samples to test in the lab. There is only so much that can be done in culture and in mouse models before human cells and subjects are needed. Participating in a clinical trial is beneficial for yourself and for others. https://t.co/4IMuWLcFX5 #CreakyChats |
| Annette McKinnon @anetto A4 Being a partner in research gives you more insight into how to frame the questions, and ability to know good res. from bad #creakychats |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Please make sure to practice #selfcare during #CreakyChats. That could mean stretching, grabbing water or turning up your favorite tracks. #CreakyChats https://t.co/1CJKFuL1HR |
| CreakyJoints.org @CreakyJoints RT @Rossco006: I’d like to find out what is linking so many chronic diseases together. We commonly see more than one chronic disease being diagnosed in an individual. #CreakyChats https://t.co/bebClo9YK6 |
| Ross @Rossco006 RT @BarbyIngle: A2. I'd like more answers on Neuro-Autoimmune diseases & rare/less known pain diseases through research studies. #CreakyChats https://t.co/7ABD5LCBC1 |
| Deb Constien @debconstien @TerezHumphrey A3- I have participated in many types of research. I also currently am participating in a Advanced Care project... I am a patient helping in the introductory roll out of this PCORI funded 4 year study. Great patient participation #CreakyChats |
| Dr Mary Ann Wilmarth @Back2backPT A2: #Research looking at #functionaloutcomes w/ primary vs secondary #Sjogren's w/ #chronic #illness #arthritis etc would be interesting. @Back2backPT @CreakyJoints @curearthritis #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @debconstien: @TerezHumphrey A3- I have participated in many types of research. I also currently am participating in a Advanced Care project... I am a patient helping in the introductory roll out of this PCORI funded 4 year study. Great patient participation #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A4: |
| CreakyJoints.org @CreakyJoints RT @Rossco006: A2: A2: I’d like to know why we are seeing so many people being diagnosed with more than one chronic disease. #CreakyChats https://t.co/bebClo9YK6 |
| DB @DB_562 @CreakyJoints Collaboration between scientists and patients opens up the dialog so that the work can be more translational from the start. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @CreakyJoints A4: @CreakyJoints A4: Scientists need samples to test in the lab. There is only so much that can be done in culture and in mouse models before human cells and subjects are needed. Participating in a clinical trial is beneficial for yourself and for others. https://t.co/4IMuWLcFX5 #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @DB_562: @CreakyJoints Collaboration between scientists and patients opens up the dialog so that the work can be more translational from the start. #CreakyChats |
| CAPA @CAPA_Arthritis @CreakyJoints A4 As a subject in a research study, I got such good care that I felt much less anxious. It helped me to move ahead, even though the drug involved was ineffective. #creakychats |
| starweaver @chronicallyfab1 A1: Hope. As a life long RA patient I am running out of options. Research gives me hope for a cure, for new treatments - options to keep fighting! https://t.co/r1Je62mHTU |
| Barby Ingle Official @BarbyIngle A4. You become more engaged in your care, know more info on the hows & why's of the tx's, learn more about your condition, & you help others who have same condition at the same time. #CreakyChats https://t.co/YuTdrkv37n |
| CreakyJoints.org @CreakyJoints RT @DB_562: @CreakyJoints Collaboration between scientists and patients opens up the dialog so that the work can be more translational from the start. #CreakyChats |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A4. You become more engaged in your care, know more info on the hows & why's of the tx's, learn more about your condition, & you help others who have same condition at the same time. #CreakyChats https://t.co/YuTdrkv37n |
| Thérèse💙 @TerezHumphrey @CreakyJoints A4. Huge benefits, as a patient, leads to better credibility with results! Participating & knowing you are helping others & contributing to the possible development of better treatments etc that hopefully could lead to a cure! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A4: |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A4. You become more engaged in your care, know more info on the hows & why's of the tx's, learn more about your condition, & you help others who have same condition at the same time. #CreakyChats https://t.co/YuTdrkv37n |
| Ross @Rossco006 @CreakyJoints Hey everyone I have to step away for an appointment I’ll try and get back again. #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @TerezHumphrey: @CreakyJoints A4. Huge benefits, as a patient, leads to better credibility with results! Participating & knowing you are helping others & contributing to the possible development of better treatments etc that hopefully could lead to a cure! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @BarbyIngle: A4. You become more engaged in your care, know more info on the hows & why's of the tx's, learn more about your condition, & you help others who have same condition at the same time. #CreakyChats https://t.co/YuTdrkv37n |
| DawgPoundHound @DawgPoundHound @CreakyJoints I've been one of those people that will try just about anything, medical or homeopathic, for relief. #creakychats |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A4. You become more engaged in your care, know more info on the hows & why's of the tx's, learn more about your condition, & you help others who have same condition at the same time. #CreakyChats https://t.co/YuTdrkv37n |
| Michele Rhee @michelerhee A4: I felt like I could help others even if I wasn't helping myself. For studies with interventions, they might make a difference in your disease. For observational & interventional, the info learned changes what we know & how we treat! #CreakyChats https://t.co/TCsUUKXLGU |
| CreakyJoints.org @CreakyJoints RT @CAPA_Arthritis: @CreakyJoints A4 As a subject in a research study, I got such good care that I felt much less anxious. It helped me to move ahead, even though the drug involved was ineffective. #creakychats |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A4: |
| Tami Morse @morse_tami A4 No experience from me. #CreakyChats https://t.co/H67rORi18w |
| CreakyJoints.org @CreakyJoints RT @TerezHumphrey: @CreakyJoints A4. Huge benefits, as a patient, leads to better credibility with results! Participating & knowing you are helping others & contributing to the possible development of better treatments etc that hopefully could lead to a cure! #CreakyChats |
| CAPA @CAPA_Arthritis RT @michelerhee: A4: A4: I felt like I could help others even if I wasn't helping myself. For studies with interventions, they might make a difference in your disease. For observational & interventional, the info learned changes what we know & how we treat! #CreakyChats https://t.co/TCsUUKXLGU |
| Ross @Rossco006 RT @CureArthritis: @CreakyJoints A4: @CreakyJoints A4: Scientists need samples to test in the lab. There is only so much that can be done in culture and in mouse models before human cells and subjects are needed. Participating in a clinical trial is beneficial for yourself and for others. https://t.co/4IMuWLcFX5 #CreakyChats |
| Shelley Fritz @Dividivigirl A4: It is highly beneficial to participate in research in contributing to finding answers. Without patients participating in research, we lose out on getting those answers and in moving closer toward a cure or even just better treatment options for future patients. #creakychats |
| CAPA @CAPA_Arthritis RT @ProulxLaurie: Laurie from Ottawa Canada here. Diagnosed w/Juvenile Rheumatoid Arthritis 27 years ago @ age 14. Executive of @CAPA_Arthritis #CreakyChats |
| DB @DB_562 A4: Also, remember that scientists are usually accessible as most have their emails listed on their lab webpages. If you see research that interests you, speak up and reach out. #CreakyChats |
| CAPA @CAPA_Arthritis RT @TO_dpr: |
| CreakyJoints.org @CreakyJoints RT @Dividivigirl: A4: A4: It is highly beneficial to participate in research in contributing to finding answers. Without patients participating in research, we lose out on getting those answers and in moving closer toward a cure or even just better treatment options for future patients. #creakychats |
| CAPA @CAPA_Arthritis #creakychats https://t.co/UzyKwc3AiA |
| CreakyJoints.org @CreakyJoints RT @DB_562: A4: A4: Also, remember that scientists are usually accessible as most have their emails listed on their lab webpages. If you see research that interests you, speak up and reach out. #CreakyChats |
| CreakyJoints.org @CreakyJoints Q5: What are some exciting research projects that you’ve heard about? What should the chronic disease community look for in terms of new research? #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Q5: Q5: What are some exciting research projects that you’ve heard about? What should the chronic disease community look for in terms of new research? #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren @CreakyJoints A4: I might be helping myself, but that's not most important. Participating might help many, many others in the future. I would be so happy if other people who get this disease don't suffer with it like I and so many have.#CreakyChats |
| starweaver @chronicallyfab1 A2: right now I have vital organ involvement in my disease (heart/lungs). I’d love to understand how they’re interconnected. #creakychats https://t.co/Xhxw6yLXKy |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints A5: We’re always working on sharing our new research. There is so much going on it’s often hard to keep up with. Latest projects include a #Lupus project aimed at preventing heart attacks, understanding special cells in #rheum that might show how rheum starts... #CreakyChats |
| Dr Mary Ann Wilmarth @Back2backPT A3: I would be interested in seeing how many #patients have delays in #diagnosis of #autoimmune #illnesses when there is history of significant #Osteoarthritis beforehand. @Back2backPT @curearthritis @CreakyJoints #CreakyChats |
| Lene Andersen @TheSeatedView A4: Helping to advance knowledge, which will lead to helping other people live better lives #creakychats |
| DB @DB_562 RT @CureArthritis: @CreakyJoints A5: @CreakyJoints A5: We’re always working on sharing our new research. There is so much going on it’s often hard to keep up with. Latest projects include a #Lupus project aimed at preventing heart attacks, understanding special cells in #rheum that might show how rheum starts... #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @CreakyJoints A5: @CreakyJoints A5: We’re always working on sharing our new research. There is so much going on it’s often hard to keep up with. Latest projects include a #Lupus project aimed at preventing heart attacks, understanding special cells in #rheum that might show how rheum starts... #CreakyChats |
| Lene Andersen @TheSeatedView RT @CreakyJoints: Please make sure to practice #selfcare during #CreakyChats. That could mean stretching, grabbing water or turning up your favorite tracks. #CreakyChats https://t.co/1CJKFuL1HR |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints A5 cont: using epigenetics to possibly switch off gout, using #BigData to find genetic clues in #psoriaticarthritis, showing a genetic connection for kids with #JA, & #OA research to understand the aging process & using stem cells to reverse cartilage damage. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @TheSeatedView: A4: A4: Helping to advance knowledge, which will lead to helping other people live better lives #creakychats |
| CAPA @CAPA_Arthritis RT @chronicallyfab1: A2: A2: right now I have vital organ involvement in my disease (heart/lungs). I’d love to understand how they’re interconnected. #creakychats https://t.co/Xhxw6yLXKy |
| Ross @Rossco006 A4: One of the benefits for sure is that you the patient are part of the solution. You as a patient give the researchers a piece of the puzzle that they need. #Creakychats https://t.co/8yEe8HcafK |
| Tami Morse @morse_tami I’m on it 😉 It’s so cold right now!! Wind chill is 21. My joints are screaming at me! #CreakyChats https://t.co/RskimCyKG8 |
| DB @DB_562 RT @CureArthritis: @CreakyJoints A5 cont: @CreakyJoints A5 cont: using epigenetics to possibly switch off gout, using #BigData to find genetic clues in #psoriaticarthritis, showing a genetic connection for kids with #JA, & #OA research to understand the aging process & using stem cells to reverse cartilage damage. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @Rossco006: A4: A4: One of the benefits for sure is that you the patient are part of the solution. You as a patient give the researchers a piece of the puzzle that they need. #Creakychats https://t.co/8yEe8HcafK |
| 🌻Wren🌻 @RheumaBlog_Wren @CreakyJoints A5: I don't really know of any, personally. I'm hoping they'll find the cause(s) for these diseases--then the cure(s)! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A5: |
| CreakyJoints.org @CreakyJoints RT @RheumaBlog_Wren: @CreakyJoints A5: @CreakyJoints A5: I don't really know of any, personally. I'm hoping they'll find the cause(s) for these diseases--then the cure(s)! #CreakyChats |
| Annette McKinnon @anetto A2 Would love to see answers to the "minor" side effects - fungal infections, rashes, dry eyes, effects of NSAIDS long term... #creakychats |
 | Lupus News @lupus_news RT @CureArthritis: @CreakyJoints A5: @CreakyJoints A5: We’re always working on sharing our new research. There is so much going on it’s often hard to keep up with. Latest projects include a #Lupus project aimed at preventing heart attacks, understanding special cells in #rheum that might show how rheum starts... #CreakyChats |
| Lene Andersen @TheSeatedView RT @TO_dpr: |
| Shelley Fritz @Dividivigirl A5: I read about a study on contaminated milk and meat linked to causing Rheumatoid Arthritis. I'm very interested in this one. #creakychats |
| Annette McKinnon @anetto A4 I'd like to see more research on self management, self efficacy, and the idea that low disease activity is a good endpoint #creakychats |
| Barby Ingle Official @BarbyIngle Q5. Look for more non-invasive research, look at project funders to understand motivations behind study, there are always new studies coming about you can find in web searcges, from your providers, & social media posts. #CreakyChats https://t.co/OGDkxgWS7d |
| CreakyJoints.org @CreakyJoints RT @anetto: A4 I'd like to see more research on self management, self efficacy, and the idea that low disease activity is a good endpoint #creakychats |
| Ross @Rossco006 Ok I’m out! It’s been a great chat and I’ll follow up with the rest later. See everyone soon! #CreakyChats |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: Q5. Look for more non-invasive research, look at project funders to understand motivations behind study, there are always new studies coming about you can find in web searcges, from your providers, & social media posts. #CreakyChats https://t.co/OGDkxgWS7d |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A5: In @CAPA_Arthritis we've done small research projects via survey where patients have said they need help: |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: Q5. Look for more non-invasive research, look at project funders to understand motivations behind study, there are always new studies coming about you can find in web searcges, from your providers, & social media posts. #CreakyChats https://t.co/OGDkxgWS7d |
| Thérèse💙 @TerezHumphrey #creakychats |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: Q5. Look for more non-invasive research, look at project funders to understand motivations behind study, there are always new studies coming about you can find in web searcges, from your providers, & social media posts. #CreakyChats https://t.co/OGDkxgWS7d |
| Lene Andersen @TheSeatedView RT @anetto: A4 I'd like to see more research on self management, self efficacy, and the idea that low disease activity is a good endpoint #creakychats |
| Arthritis National Research Foundation @CureArthritis @Rossco006 Good having you, Ross! Thanks for participating, as always! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @BarbyIngle: Q5. Look for more non-invasive research, look at project funders to understand motivations behind study, there are always new studies coming about you can find in web searcges, from your providers, & social media posts. #CreakyChats https://t.co/OGDkxgWS7d |
| Dr Mary Ann Wilmarth @Back2backPT I think it would be interesting to look at #daily #activity #ADLs & #exercise #levels & compare w/ #pain #painsomnia #painmed use including following day(s). Need to look at whole interaction. @Back2backPT @CreakyJoints @curearthritis #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A5: |
| CreakyJoints.org @CreakyJoints Q6: Do you feel that research has an impact on your everyday life? Why or why not? #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren @CodaJen @CreakyJoints YES! Cannabis research into how it works for pain short and long term is so important! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis @Back2backPT @CreakyJoints Interesting pespective - that would certainly be worth looking at! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Q6: Q6: Do you feel that research has an impact on your everyday life? Why or why not? #CreakyChats |
| Tami Morse @morse_tami A5. I don’t really know of any. I do have something to be addressed. What is the relationship between Rheumatoid Arthritis and Chronic Migraine? My thought is pain. It seems I’m not the only one suffering. #CreakyChats https://t.co/y0TQjOaZf6 |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A5: you can also read about some Cdn #arthritis research here: |
| Annette McKinnon @anetto "collaboratively developed a list of 12 lessons we have learned about how to ensure effective research partnerships .. to help foster more patient-centered research via productive and enjoyable research collaborations" https://t.co/bOtf6dDh52 … @vmontori @hwitteman #creakychats https://t.co/JSP3ZxtOTD |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A5: |
| Thérèse💙 @TerezHumphrey A5. (1) I volunteer for @IFAArthritis & involved w/ a planning project (ACT) aiming to test & develop new collaboration strategies to enhance engagement between industry, researchers, & a global pool of #autoimmune #inflammatory #arthritis patients. #creakychats |
| Arthritis National Research Foundation @CureArthritis @lucybball Don't lose hope just yet! Exciting new findings are being made daily! #CreakyChats |
| Lene Andersen @TheSeatedView RT @RheumaBlog_Wren: @CodaJen @CreakyJoints YES! Cannabis research into how it works for pain short and long term is so important! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A5: |
| Arthritis National Research Foundation @CureArthritis A6: Research for the Foundation is an everyday part of what we do. We are constantly working to share the findings, raise more funds and support more research. We truly believe research is the key to finding a cure and together we can #CureArthritis! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @TerezHumphrey: A5. (1) I volunteer for @IFAArthritis & involved w/ a planning project (ACT) aiming to test & develop new collaboration strategies to enhance engagement between industry, researchers, & a global pool of #autoimmune #inflammatory #arthritis patients. #creakychats |
| DB @DB_562 RT @CureArthritis: A6: A6: Research for the Foundation is an everyday part of what we do. We are constantly working to share the findings, raise more funds and support more research. We truly believe research is the key to finding a cure and together we can #CureArthritis! #CreakyChats |
 | Michelle Ward @justmichellem77 RT @BarbyIngle: Q5. Look for more non-invasive research, look at project funders to understand motivations behind study, there are always new studies coming about you can find in web searcges, from your providers, & social media posts. #CreakyChats https://t.co/OGDkxgWS7d |
| Thérèse💙 @TerezHumphrey A5. (2) .. to improve endpoints, expedite processes, & better utilize research $$ in the early drug development phase (pre-clinical trial) of the rheumatology Research & Development (R&D) continuum. I'm proud to be a part of @IFAArthritis #creakychats |
| 🌻Wren🌻 @RheumaBlog_Wren @CreakyJoints A6: I do, because I've been able to try new medications, biologic and otherwise, that I hoped might affect my RA in positive ways. Also, older meds I take are keeping it under some control. Without research, none of them wld be available. Research is SO important! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @RheumaBlog_Wren: @CreakyJoints A6: @CreakyJoints A6: I do, because I've been able to try new medications, biologic and otherwise, that I hoped might affect my RA in positive ways. Also, older meds I take are keeping it under some control. Without research, none of them wld be available. Research is SO important! #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @RheumaBlog_Wren: @CreakyJoints A6: @CreakyJoints A6: I do, because I've been able to try new medications, biologic and otherwise, that I hoped might affect my RA in positive ways. Also, older meds I take are keeping it under some control. Without research, none of them wld be available. Research is SO important! #CreakyChats |
| Annette McKinnon @anetto @TO_dpr Actually would not accept being called a subject anymore. We've moved on from that but attitudes and language hard to change #creakychats |
| Arthritis National Research Foundation @CureArthritis RT @SimonRStones: A6: |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A6: |
| Lene Andersen @TheSeatedView A6: Yes! I wouldn't be here without research. #Biologics saved my life 12yrs ago, saving it every day. Saved it again when I had #ARDS 2 years ago, currently getting better w/#PTSD due to CPT developed specifically for this. research has changed my life #creakychats |
| Arthritis National Research Foundation @CureArthritis RT @TheSeatedView: A6: A6: Yes! I wouldn't be here without research. #Biologics saved my life 12yrs ago, saving it every day. Saved it again when I had #ARDS 2 years ago, currently getting better w/#PTSD due to CPT developed specifically for this. research has changed my life #creakychats |
| Shelley Fritz @Dividivigirl A6: Maybe not daily but often, yes. I'm always looking for the most recent research findings that could support or negate my treatment plan and help me with choices that impact my pain levels. #creakychats |
| Lene Andersen @TheSeatedView RT @CureArthritis: A6: A6: Research for the Foundation is an everyday part of what we do. We are constantly working to share the findings, raise more funds and support more research. We truly believe research is the key to finding a cure and together we can #CureArthritis! #CreakyChats |
 | Cheryl Crow, Arthritis Life @realcc @CreakyJoints A3 - I fill out surveys every 6 months for the National Data Bank for Rheumatic Diseases/Arthritis Research Center Foundation Inc! So easy and it feels good to know I’m helping! @CreakyJoints #CreakyChats |
| Annette McKinnon @anetto A6 Research changed my life. If I had not read research papers I would not have advocated for better treatment for myself. #creakychats |
| CreakyJoints.org @CreakyJoints RT @Dividivigirl: A6: A6: Maybe not daily but often, yes. I'm always looking for the most recent research findings that could support or negate my treatment plan and help me with choices that impact my pain levels. #creakychats |
| Tracie @Tracie82130941 RT @CreakyJoints: Q5: Q5: What are some exciting research projects that you’ve heard about? What should the chronic disease community look for in terms of new research? #CreakyChats |
| Michele Rhee @michelerhee A6: Personally, yes, in that I would be dead if it weren't for research, but no, in that I don't think about that fact every day. Professionally, I work every day in research to develop #raredisease treatments, so...it pretty much runs my life lol. #CreakyChats https://t.co/y65575kIHh |
| CreakyJoints.org @CreakyJoints RT @anetto: A6 Research changed my life. If I had not read research papers I would not have advocated for better treatment for myself. #creakychats |
| Cheryl Crow, Arthritis Life @realcc @CreakyJoints A6 - Without a doubt, research has an impact on my everyday life! The research that originally led to the development of biological enables me to function and helps with my quality of life. #CreakyChats |
| CAPA @CAPA_Arthritis RT @Dividivigirl: A6: A6: Maybe not daily but often, yes. I'm always looking for the most recent research findings that could support or negate my treatment plan and help me with choices that impact my pain levels. #creakychats |
| DawgPoundHound @DawgPoundHound @CreakyJoints I would love to champion & be an advocate of medical marijuana. Opiods for long term use are too hard on the body and becoming a challenge to obtain. With 2 replaced joints already, facing major reconstructive wrist surgery, pain mgmt is always at my forefront #creakychats |
| Lene Andersen @TheSeatedView RT @anetto: A6 Research changed my life. If I had not read research papers I would not have advocated for better treatment for myself. #creakychats |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A6: |
| CreakyJoints.org @CreakyJoints RT @michelerhee: A6: A6: Personally, yes, in that I would be dead if it weren't for research, but no, in that I don't think about that fact every day. Professionally, I work every day in research to develop #raredisease treatments, so...it pretty much runs my life lol. #CreakyChats https://t.co/y65575kIHh |
| CAPA @CAPA_Arthritis RT @TO_dpr: A5: In @CAPA_Arthritis we've done small research projects via survey where patients have said they need help: |
| Tami Morse @morse_tami A6 Oh my goodness, yes!!! It gives me HOPE! It gives me COURAGE! I so appreciate every research project across the globe. It brings us so much closer to the CURE!! Thank you to ALL of you ♥️ #CreakyChats https://t.co/zKknm3Rj4X |
| CAPA @CAPA_Arthritis RT @TO_dpr: .@CAPA_Arthritis has a survey open right now on workplace and #arthritis - feel free to fill out: |
| Arthritis National Research Foundation @CureArthritis RT @realcc: @CreakyJoints A6 - Without a doubt, research has an impact on my everyday life! The research that originally led to the development of biological enables me to function and helps with my quality of life. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @morse_tami: A6 Oh my goodness, yes!!! It gives me HOPE! It gives me COURAGE! I so appreciate every research project across the globe. It brings us so much closer to the CURE!! Thank you to ALL of you ♥️ #CreakyChats https://t.co/zKknm3Rj4X |
| Cheryl Crow, Arthritis Life @realcc Yes!! https://t.co/fTJnI4MZUY |
| 🌻Wren🌻 @RheumaBlog_Wren @susanb4thestorm @CreakyJoints Research has brought us such a long way and offers so much hope. I took oral gold in the late 80s, myself. No luck, but there were few choices. #CreakyChats |
| Barby Ingle Official @BarbyIngle A6. Yes, my life is better due to participating in research, I know others benefit from my participating too. I thank all who actively participate in research studies as it improves our chronic care life daily. #CreakyChats https://t.co/4m3jUbrrdG |
| CreakyJoints.org @CreakyJoints RT @realcc: @CreakyJoints A6 - Without a doubt, research has an impact on my everyday life! The research that originally led to the development of biological enables me to function and helps with my quality of life. #CreakyChats |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A6. Yes, my life is better due to participating in research, I know others benefit from my participating too. I thank all who actively participate in research studies as it improves our chronic care life daily. #CreakyChats https://t.co/4m3jUbrrdG |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A6. Yes, my life is better due to participating in research, I know others benefit from my participating too. I thank all who actively participate in research studies as it improves our chronic care life daily. #CreakyChats https://t.co/4m3jUbrrdG |
| CreakyJoints.org @CreakyJoints RT @RheumaBlog_Wren: @susanb4thestorm @CreakyJoints Research has brought us such a long way and offers so much hope. I took oral gold in the late 80s, myself. No luck, but there were few choices. #CreakyChats |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A6. Yes, my life is better due to participating in research, I know others benefit from my participating too. I thank all who actively participate in research studies as it improves our chronic care life daily. #CreakyChats https://t.co/4m3jUbrrdG |
| CreakyJoints.org @CreakyJoints Q7: How do you determine if an org/company/institution that is conducting research is ethical? #CreakyChats |
| Lene Andersen @TheSeatedView @realcc @CreakyJoints I'm with you! Such a profound difference in my life because of these meds #creakychats |
| CreakyJoints.org @CreakyJoints RT @BarbyIngle: A6. Yes, my life is better due to participating in research, I know others benefit from my participating too. I thank all who actively participate in research studies as it improves our chronic care life daily. #CreakyChats https://t.co/4m3jUbrrdG |
| Catherine @Catheri79513784 #CreakyChats A4 participating helps others - assists comprehension off #ra & helps you feel that you can do something! |
| Arthritis National Research Foundation @CureArthritis RT @CreakyJoints: Q7: Q7: How do you determine if an org/company/institution that is conducting research is ethical? #CreakyChats |
| Dr Mary Ann Wilmarth @Back2backPT A4: Research is so #beneficial 🤩 Let me count the ways...123... But don't forget #compassion too❣️ 📊🔎 #newconcepts #provetheories #cures #meds #collaboration #understanding #empathy #meetlikemindedpeople #communities @Back2backPT @CureArthritis @CreakyJoints #CreakyChats |
| Tami Morse @morse_tami @SimonRStones @raiiseuk @Sophie_ains I LOVE that!! #CreakyChats |
 | L Graves @LGSentinel What key information do you think needs better communication to the public? What misconceptions need dispelling? https://t.co/E6L8kagsnW |
| CreakyJoints.org @CreakyJoints RT @Catheri79513784: #CreakyChats A4 participating helps others - assists comprehension off #ra & helps you feel that you can do something! |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints A7: All research supported by the Foundation is placed through a rigorous review process by our Scientific Advisory Board. They vet the scientist, the institution and the quality of the research proposed. Only the best science is supported and given the green light. #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @Back2backPT: A4: A4: Research is so #beneficial 🤩 Let me count the ways...123... But don't forget #compassion too❣️ 📊🔎 #newconcepts #provetheories #cures #meds #collaboration #understanding #empathy #meetlikemindedpeople #communities @Back2backPT @CureArthritis @CreakyJoints #CreakyChats |
| Thérèse💙 @TerezHumphrey A6. Without a doubt! I would not be walking today if it weren't for the research that has been done & Biological meds that are available! I took Gold injections & hi doses of aspirin in 80's- I was desperate for relief & ending the debilitating progression of my RA! #CreakyChats https://t.co/Gq0ZzXKVXE |
| CreakyJoints.org @CreakyJoints RT @CureArthritis: @CreakyJoints A7: @CreakyJoints A7: All research supported by the Foundation is placed through a rigorous review process by our Scientific Advisory Board. They vet the scientist, the institution and the quality of the research proposed. Only the best science is supported and given the green light. #CreakyChats |
| Tami Morse @morse_tami @CureArthritis AMEN!!! Thank you from the bottom of my heart ♥️ #CreakyChats |
| DawgPoundHound @DawgPoundHound @CreakyJoints A6. Absolutely. I got a knee replaced at age 35, in 1999. My hip was replaced 3 years ago. Biologic medicine probably kept those surgeries that far apart. #creakychats |
| Cheryl Crow, Arthritis Life @realcc @CreakyJoints A7 - Check to see if conflicts of interest exist, and check the rigor of the research h methodology! #CreakyChats |
| Lene Andersen @TheSeatedView RT @CureArthritis: @CreakyJoints A7: @CreakyJoints A7: All research supported by the Foundation is placed through a rigorous review process by our Scientific Advisory Board. They vet the scientist, the institution and the quality of the research proposed. Only the best science is supported and given the green light. #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren @CreakyJoints A7: I would try to research the org/co/inst., but confess I'm not sure how. Google? Is there a specific way to do this? #CreakyChats |
| Michele Rhee @michelerhee A7: There's the baseline IRB/Ethics Committee approvals, etc., but I think of it like, would I be proud to work at that org/company/institution? If the answer is no, then there's probably something shady going on. #CreakyChats https://t.co/Yu9I2mQHsN |
| Arthritis National Research Foundation @CureArthritis @morse_tami No need to thank us! People like you are the reason we continue to press forward. We won't stop until we find a cure! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @michelerhee: A7: A7: There's the baseline IRB/Ethics Committee approvals, etc., but I think of it like, would I be proud to work at that org/company/institution? If the answer is no, then there's probably something shady going on. #CreakyChats https://t.co/Yu9I2mQHsN |
| CreakyJoints.org @CreakyJoints RT @RheumaBlog_Wren: @CreakyJoints A7: @CreakyJoints A7: I would try to research the org/co/inst., but confess I'm not sure how. Google? Is there a specific way to do this? #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @realcc: @CreakyJoints A7 - Check to see if conflicts of interest exist, and check the rigor of the research h methodology! #CreakyChats |
| Annette McKinnon @anetto A6 If research had no effect on our lives, we'd all be on high doses of prednisone, aspirin or Nsaids #creakychats |
| CreakyJoints.org @CreakyJoints RT @TerezHumphrey: A6. Without a doubt! I would not be walking today if it weren't for the research that has been done & Biological meds that are available! I took Gold injections & hi doses of aspirin in 80's- I was desperate for relief & ending the debilitating progression of my RA! #CreakyChats https://t.co/Gq0ZzXKVXE |
| 🌻Wren🌻 @RheumaBlog_Wren RT @realcc: @CreakyJoints A7 - Check to see if conflicts of interest exist, and check the rigor of the research h methodology! #CreakyChats |
| DB @DB_562 @TerezHumphrey Love hearing this as it shows the power of research! Motivates us in th office to keep working harder and harder to find cures and better treatments! #CreakyChats |
| CreakyJoints.org @CreakyJoints RT @anetto: A6 If research had no effect on our lives, we'd all be on high doses of prednisone, aspirin or Nsaids #creakychats |
| CreakyJoints.org @CreakyJoints RT @SimonRStones: A7: I ask myself these 3 questions: |
| Shelley Fritz @Dividivigirl @CureArthritis @CreakyJoints A7 And this is why I have so much gratitude for what you do at the Arthritis National Research Foundation @CureArthritis . I appreciate the process you go through so that we can have guidance on what is ethical, quality research. #creakychats |
| Arthritis National Research Foundation @CureArthritis RT @DB_562: @TerezHumphrey Love hearing this as it shows the power of research! Motivates us in th office to keep working harder and harder to find cures and better treatments! #CreakyChats |
| 🌻Wren🌻 @RheumaBlog_Wren RT @CureArthritis: @CreakyJoints A7: @CreakyJoints A7: All research supported by the Foundation is placed through a rigorous review process by our Scientific Advisory Board. They vet the scientist, the institution and the quality of the research proposed. Only the best science is supported and given the green light. #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @Dividivigirl: @CureArthritis @CreakyJoints A7 And this is why I have so much gratitude for what you do at the Arthritis National Research Foundation @CureArthritis . I appreciate the process you go through so that we can have guidance on what is ethical, quality research. #creakychats |
| Barby Ingle Official @BarbyIngle A7. Look at their financials and see if it's widespread, transparent, any know bias. Are you ok w what you see? It's a personal decision for sure. #CreakyChats https://t.co/Wbf1s169Os |
| Lene Andersen @TheSeatedView Agree - google the crap out of it, check other reasearch that has been done. You can check a charity's rating before giving - is there a way to do the same with reseach? (if not, there should be) #creakychats https://t.co/3WQuxpeUbC |
| CreakyJoints.org @CreakyJoints A7: We are proud that our ArthritisPower research is guided by Patient Governors. #CreakyChats |
| Annette McKinnon @anetto A7 Look at who is funding the research, and the authors. I used to think that Drs who were funded by everyone could not have a conflict but the funders affect the questions #creakyChats |
| Lene Andersen @TheSeatedView @anetto Been there, done that. And it did nothing. #creakychats |
| Thérèse💙 @TerezHumphrey @DB_562 Thank you for ALL you do for not only myself but our entire community! 💙👏#CreakyChats |
 | Marie #StopAsianHate 💜🤍💚 @LittleMsLogic RT @CureArthritis: In less than an hour, we'll be joining @CreakyJoints to talk about the importance of #research! Be sure to stop by & add to the discussion! #CreakyChats |
| DB @DB_562 @BarbyIngle Great advice. We always suggest people verify any org using @CharityNav and @GuideStarUSA here in the states. #CreakyChats |
| International Pain Foundation® @iPainOfficial RT @BarbyIngle: A7. Look at their financials and see if it's widespread, transparent, any know bias. Are you ok w what you see? It's a personal decision for sure. #CreakyChats https://t.co/Wbf1s169Os |
| Arthritis National Research Foundation @CureArthritis RT @DB_562: @BarbyIngle Great advice. We always suggest people verify any org using @CharityNav and @GuideStarUSA here in the states. #CreakyChats |
| iPain Foundation Research Projects @iPain_Research RT @BarbyIngle: A7. Look at their financials and see if it's widespread, transparent, any know bias. Are you ok w what you see? It's a personal decision for sure. #CreakyChats https://t.co/Wbf1s169Os |
| DB @DB_562 RT @TerezHumphrey: @DB_562 Thank you for ALL you do for not only myself but our entire community! 💙👏#CreakyChats |
| Catherine @Catheri79513784 #CreakyChats A2 having tried to conquer #ra with dietary changes - I would love to see definitive data (via research) of the effect of diet on #ra. |
| Tami Morse @morse_tami @SimonRStones You’re so right! My father suffered through Polio. He was so happy when the vaccine was available for his 6 children! I’m so glad he and my mother weren’t on this earth at my dx!! It would have broken them. #CreakyChats |
| Thérèse💙 @TerezHumphrey Thank you! 👏 💙 https://t.co/hOZ3FJEo6c |
| DawgPoundHound @DawgPoundHound @CreakyJoints Or maybe I should say, that is a great question! how would one find that information? #creakychats |
| Thérèse💙 @TerezHumphrey RT @Dividivigirl: @CureArthritis @CreakyJoints A7 And this is why I have so much gratitude for what you do at the Arthritis National Research Foundation @CureArthritis . I appreciate the process you go through so that we can have guidance on what is ethical, quality research. #creakychats |
| Michele Rhee @michelerhee A7: YES! You should never feel pressure to participate, and you always have the right to stop participating. NEVER feel that you are obligated, and never let anyone make you feel otherwise. "Informed consent" means that you are fully informed of all of your choices. #creakychats https://t.co/KF6o6sPQHA |
| Tami Morse @morse_tami A7. I’m coming straight to you!! That’s how I’m gonna roll. Not a single question in my mind on this. #CreakyChats https://t.co/PEiZn74GCF |
| CreakyJoints.org @CreakyJoints RT @Catheri79513784: #CreakyChats A2 having tried to conquer #ra with dietary changes - I would love to see definitive data (via research) of the effect of diet on #ra. |
| CreakyJoints.org @CreakyJoints RT @TO_dpr: A7: |
 | Paul C. McLean @paulcmclean RT @anetto: A4 I'd like to see more research on self management, self efficacy, and the idea that low disease activity is a good endpoint #creakychats |
| Lene Andersen @TheSeatedView RT @DB_562: @BarbyIngle Great advice. We always suggest people verify any org using @CharityNav and @GuideStarUSA here in the states. #CreakyChats |
| Nora Sundin @nora_sundin @CreakyJoints Q6 Absolutely! Before biologics there was no way to slow the progression of AS, that's exciting and gives me hope there will be additional options for us in the future.#creakychats |
| Dr Mary Ann Wilmarth @Back2backPT A3: More research ideas😬 I'm curious about how adults w/ #chronicarthritis fare compared w/ those who grew up w/ #jia Some adults have new #arthritis whereas others have had #OA when younger -or other #illnesses @Back2backPT #CreakyChats @CreakyJoints @CureArthritis |
| Arthritis National Research Foundation @CureArthritis @CreakyJoints We're always honored to help out @CreakyJoints! A big thank you to everyone for your time & valuable input! #CreakyChats |
| Shelley Fritz @Dividivigirl YES!! https://t.co/9AzRDZfoCU |
| DB @DB_562 RT @CureArthritis: @CreakyJoints We're always honored to help out @CreakyJoints! A big thank you to everyone for your time & valuable input! #CreakyChats |
| Thérèse💙 @TerezHumphrey Thank you for All you do for us & community! I'm honored to know you guyz! Respect! 👊💙#CreakyChats https://t.co/Vp97cyJkX9 |
| Catherine @Catheri79513784 #CreakyChats A6 I love the fact that my Rheumy is very up to date with current research but having tried 6 biologics & not having success makes me wonder if its going to be sufficient for me & patients like me. |
| DB @DB_562 More on research from @CureArthritis is available at https://t.co/Ion4kDZnrL or https://t.co/RWlNGQsSd4 #CreakyChats |
| Arthritis National Research Foundation @CureArthritis RT @DB_562: More on research from @CureArthritis is available at https://t.co/Ion4kDZnrL or https://t.co/RWlNGQsSd4 #CreakyChats |
| Ken Taylor, RPIC @KenRayTaylor RT @BarbyIngle: A7. Look at their financials and see if it's widespread, transparent, any know bias. Are you ok w what you see? It's a personal decision for sure. #CreakyChats https://t.co/Wbf1s169Os |
 | Lilian Chiwera @lilian_chiwera RT @SimonRStones: A7: I ask myself these 3 questions: |
| Dr Mary Ann Wilmarth @Back2backPT A6: Research definitely has effect on my everyday life. I've gone thru 3 biologic & many meds & have to "try" new ones today or once my #insurance approves. I 🙏 that I don't run out of options. Keep up the #Research ‼️👏 @Back2backPT #CreakyChats @CureArthritis @CreakyJoints |
| Laurie Proulx @ProulxLaurie RT @TO_dpr: A5: In @CAPA_Arthritis we've done small research projects via survey where patients have said they need help: |
| Tami Morse @morse_tami @CreakyJoints @CureArthritis Thank you @CreakyJoints for these #CreakyChats. I loved participating this evening!! |
| Dr Mary Ann Wilmarth @Back2backPT A7: I do my #DueDiligence & #Research them. @Back2backPT #CreakyChats @CureArthritis @CreakyJoints https://t.co/dKgHff93Js |
| Laurie Proulx @ProulxLaurie RT @CAPA_Arthritis: A1 Patients can be involved as partners on research teams. That really helps in avoiding researching outcomes that don't matter to patients. #creakychats |
| Thérèse💙 @TerezHumphrey RT @CureArthritis: A6: A6: Research for the Foundation is an everyday part of what we do. We are constantly working to share the findings, raise more funds and support more research. We truly believe research is the key to finding a cure and together we can #CureArthritis! #CreakyChats |
 | dSavannah = #disabled #MEep (#pwME) @dSavannahCreate @CreakyJoints A3. Other than @CreakyJoints’s ArthritisPower, no. Only because everytime I’ve tried, I’ve basically been told there’s too much wrong with me. #CreakyChats |
| dSavannah = #disabled #MEep (#pwME) @dSavannahCreate @CreakyJoints A5. I’m so excited to see the research that @OpenMedF will be able to do for #pwME with the donation from the Pineapple Fund. #CreakyChats |
| Dr Mary Ann Wilmarth @Back2backPT Thank you very much for an important #CreakyChats on a vital topic #Research ‼️ We all need it & it's best to have a variety of people involved from #patients to #researchers to #healthcare workers & all of you... et al. @Back2backPT @CureArthritis @CreakyJoints https://t.co/hzXPxoCRp0 |
 | Kelly English @steveston_gal empowering; patient engagement; applicable (given with patient engagement from beginning. https://t.co/1S4EuQ5Jcm |
#CreakyChats content from Twitter.