#MEAction Network

[pandemichub]

[myalgicencephalomyelitiscfstom]

From The #MEAction Network

Wondering about the terms PEM or pacing? Have you seen #StopRestPace and were curious as to what it referenced? Maybe you have been in our community a long time and want to save some easy ways to explain these concepts to others. Perhaps you have seen pacing misused and want to help clear that up. We hope this post helps!

#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.

What is PEM? Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Sometimes exertion is misunderstood as exercise. Exercise is simply one form of exertion. Exertion is defined here as anything that stresses or strains the system. Exertion can be physical, orthostatic, sensory, cognitive, emotional, or environmental. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.

Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. While this sounds simple, it is incredibly difficult. Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population.

#MEAction offers three pacing guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with Long Covid families. Our clinician's guide was developed with Patient-Led Research. https://www.meaction.net/resource/pacing-and-management-guide

[thegreatlukeski]

Today is my friend @handsomehugs birthday. They were the Storyboard Revisionist for the very end of Season One and all of Season 2 of "Mighty MagiSwords", and they co-storyboarded the S1 episode "Squideo Games". They are an amazing talent, and they went above and beyond on SO MANY occasions to help SAVE MY BUTT when I was up against a deadline, not to mention the butts of many other storyboarders on the MM staff. So to honor them on their birthday, I want to share with you all some of their revision artwork from my S2 episodes that have aired so far, to show you all how awesome they are.

To say Ang is having a tough time right now is a vast understatement. They have an illness and are fighting their hardest while getting no helpful diagnosis or treatments from the USA's craptastic health care system. They have asked for their birthday for people to donate to this cause to raise awareness of their illness and to help others with it: https://www.facebook.com/donate/2154481997926192/10214590657092941/?fundraiser_source=feed #MEAction

I'm going to be the presumptive ego-mad obnoxi-tron that everyone says I am and say on behalf of everyone who worked on "Mighty MagiSwords" that ANG IS AWESOME AND THE BEST AND OUR SHOW WAS SO SO MUCH BETTER BECAUSE YOU WERE A PART OF IT, AND WE ALL LOVE YOU SO GOD DAMN MUCH!!! ALSO, IT'S YOUR BIRTHDAY, SO HAVE A HAPPY ONE OF THOSE!!! ANG ANG ANG ANG ANG ANG ANG ANG ANG!!!!!!!!!!!!!!!!!!!!!!!! yours with subtlety,~ Luke

[thasminlove]

Hey you lovely followers/ mutuals/ Tumblr users!

Starting today, I will be posting a bit more about my chronic illness, Myalgic Encephalomyelitis (M.E., or CFS), because May is M.E. awareness month.

I am not doing this for my own attention, or for people to feel sorry for me or some such tosh (yes that was a Jessica Kellgren-Fozard reference for all you fellow fans 😁). I have a wonderful life and a wonderful support network, and I do not personally want or need pity or attention.

I am doing this to raise awareness of a chronic illness that 17-24 million people have worldwide, which can last for decades, has the same severity for a lot of patients as late stage cancer or AIDS, and yet that not many people have heard of. There is barely any biomedical research being done, no cure currently, and, in the UK at least, the only treatment offered by official guidelines is extremely harmful and causes many patients’ symptoms to worsen.

I will be posting a bit about the #MillionsMissing campaign set up by MEAction, and the #GoBlueForME campaign set up by The ME Association, as well as my own stuff.

I am asking you to read and reblog these posts and any other #millionsmissing or M.E. awareness posts you may see on Tumblr, and talk to people in your life about it. Most patients with M.E. are very very ill, so it is vital that this disabling and life changing illness has not only patients campaigning for us, but abled allies too.

M.E. varies in severity, and I am extremely lucky to not have it as badly as some other patients, so some of what I post may not necessarily apply to me, but to thousands/ millions of people these issues will be daily struggles (a lot of it will apply to me as well just to be clear).

Thank you all in advance, and love to all my fellow spoonies and #pwme (people with M.E.) 💙

[sixwheelriker]

Not well today so I'm just gonna share this link with some cool stuff to commemorate Juneteenth, brought to us by the collective efforts of 6 Black museums.

On the page there's an embeded 80 minute video, which becomes available today at 12pm ET/9am PT here in the US. There's also shareable fact cards formatted for instagram, a printable Juneteenth flag for coloring, and a bunch of other info.

For fellow #pwME, ME Action Network made an instagram post sharing the same as above as well as info for BIPOC with ME and about the intersection of race and illness. The text of that post is as follows:

"In our ongoing effort to share resources by activists and movements that fight for racial justice, we would like to recognize the significance of today - Juneteenth.

Juneteenth, an annual holiday commemorating the end of slavery in the United States, has been celebrated by African-Americans since the late 1800s. This year it may resonate in a new way with many of us with the widespread protests across the US and the globe in pursuit of racial justice.

If you are looking for a virtual way to commemorate Juneteenth, six Black museums are joining forces to commemorate the 155th anniversary. Watch the video today at 9 am Pacific/ 12 pm Eastern.

If you are #BIPOC with ME (black, indigenous, person of color) or wish to be an ally to BIPOC/BAME in our community, you can join this Facebook group: https://www.facebook.com/groups/1291247507695050/

https://www.blkfreedom.org/ @blkfreedomdotorg

For the allies in our community that would like to take today to learn more about racism and ME, we offer resources on our site. Link in bio under Black Lives Matter article.

#pwME #Juneteenth #MyalgicE #BlkFreedom ***For those wondering why #MEAction is sharing racial justice resources please see our statement at link in bio under Black Lives Matter article."

[jesseneufeld]

2018 Top 10 Patient Leader Heroes

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  These are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community. 

  Kristal Kent

Fibromyalgia Patient Leader

Facebook | Instagram

“As an advocate chronicling my daily struggles with Fibromyalgia (FM), my goal is to promote Fibromyalgia Awareness, Education and Support online to unite the FM Community on Facebook. For many years my annual Fibromyalgia Awareness Campaign “POP and PUT ON PURPLE to Promote Fibromyalgia Awareness” has shed light on this Central Nervous System disorder, promote understanding, connect fellow Fibro Fighters from over 30 countries and validate Fibromyalgia as a tangible, medically defined Invisible Illness. I’ve recently established the “FOURTH FRIDAY FIBRO DAY” which is a Facebook Fibromyalgia Awareness event on the 4th Friday of each month. Kristal at The Fibromyalgia Pain Chronicles.” Connect with Kristal

Heather Von St James

Mesothelioma Patient Leader

Facebook | Twitter | Instagram

“I am a 12+ year survivor of mesothelioma, patient advocate, speaker and freelance writer/blogger. I began blogging about my journey when I realized that people needed hope when diagnosed with mesothelioma. I was given just 15 months to live upon my diagnosis, but have gone on to outlive their best case scenario. Advocacy is more than what I do, it is part of me. I speak for those who can’t and for those who have yet to be diagnosed. I believe until there is more awareness about mesothelioma, nothing will change. That is my mission, Awareness and advocacy are everything.” Follow Heather

Gustavo San Martin

Multiple Sclerosis Patient Leader

Facebook

“I was diagnosed with Multiple Sclerosis (MS) in 2011. The day I heard about the disease, my mother start researching about MS on Internet. The references she found were not positive! A few minutes later she came into my room, sobbing from crying, and asked: Son, are you going to die? From that day on I decided to work so that any other people would not come across the scenario that my mother found. Today, 4 years later, AME (the page I created to inform) is the largest association / platform of people with MS in Brazil.”

Gustavo is the winner of the 2017 WEGO Health Award for Best in Show: Facebook because the Facebook group he’s created for Brazilians living with MS is one of a kind! By sharing his story and his sincere passion for helping other patients, Gustavo has built a platform that supports thousands of patients daily. Learn more about Gustavo

Dawn Gibson

Chronic Illness Patient Leader

Facebook | Twitter

Dawn Gibson, best known as @DawnMGibson is a well known patient advocate and e-patient, writer, and patient experience consultant working in an advisory capacity with corporations, foundations, researchers, and other thought leaders to form an accurate and helpful understanding of chronic illness and disability. She is the founder and host of the Spoonie Chat Twitter and Facebook communities, regularly fields questions posted to Twitter and the #SpoonieChat tag between events, and works to connect patients with essential self-care concepts, appropriate advocacy organizations, and each other. Connect with Dawn

Candace Lerman

Rare Disease Patient Leader

Twitter | Instagram

“I am a rare disease patient who began advocating for others after researching and using an off-label chemotherapy treatment to put my blood disorder in remission. Thanks to my success with my treatment, I graduated from law school in 2.5 years, obtained my certification in Healthcare Compliance from Seton Hall Law School and passed the Florida Bar Exam. In addition to practicing law, I consult on pharmaceutical projects, advertising campaigns, political strategy and legislative initiatives. My unique experience allows me to address a variety of issues from a patient and professional perspective. I’m also working in translational research after the loss of my dog Kona Bear to canine glioma.”Follow Candace

Lara Bloom

Rare Disease Patient Leader

Facebook | Twitter | Instagram

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert. She is known for her documentary Issues with my Tissues about her attempts to walk the London Marathon. Click here to learn more about Laura’s journey

Deb Constien

RA Patient Leader

Facebook | Twitter | Instagram

“I’ve had Rheumatoid Arthritis for 35 of my 48yrs. Had a wrist fusion, knee replacement & 2 cervical neck fusions. My husband and son are my greatest support. I’m the Board Chair of the Arthritis Foundation & Advocacy Chair.  I regularly speak about advocacy. I am a 3x Platinum Ambassador winner from Arthritis Foundation and I’m also a representative for IFAA and the Leader of a Arthritis Support Network in Madison Wisconsin. I host monthly meetings in Madison. I also serve on the WREN advisory group & member of leadership board. I’m blessed to be able to do what I LOVE. Advocating for myself and others. Patient Council member for Creaky Joints. Research PCORI projects for ACP. Highly involved Volunteer.” Follow Deb

Terry Arnold

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

Terry Arnold was diagnosed with Triple Negative Inflammatory Breast Cancer, (TN IBC) in her right breast in August of 2007 after months of misdiagnosis. Also discovered her left breast had TN breast cancer as well. She realized this “orphaned form of breast cancer” was in dire need of research and educational funding. She formed the IBC Network Foundation in August of 2011, a 503c1 charity that she runs full time as a volunteer, to encourage education and fund research. The charity’s impact is now global as there is a sister charity in the UK as well. A milestone for education was realized with the development of an app available for a free download and is recommended by IBC specialists. Learn more about Terry and her foundation. 

Sue Jackson

Chronic Illness Patient Leader

Instagram | Twitter

“I have had the immune system disorder ME/CFS (known in the US as Chronic Fatigue Syndrome) since 2002, and both of my teen sons have had it since 2004. My older son also has Lyme disease plus two other tick infections. ME/CFS is a very debilitating illness with few effective treatments available; it requires serious lifestyle changes and activity restriction. I started writing my blog Learning to Live with CFS in 2006, and I cover topics ranging from research updates to treatments I have tried to dealing with the emotional impact of living with a chronic illness. I try to maintain a positive attitude and focus on joy and support. In addition, I started a local group in my community and surrounding states for families whose kids have ME/CFS and two online groups on Facebook, one for parents of kids who are sick and another for the teens and young adults themselves. Although my family has lived with some serious challenges these past 12 years, we are happy and try to find moments of joy in even the most difficult days.” Follow Sue.

Terri Wilder

ME Patient Leader

Facebook | Twitter

Terri was diagnosed with myalgic encephalomyelitis (ME) in March 2016. Since her diagnosis she has worked with elected officials, public health departments, health care providers, and activists to raise awareness about ME in New York State and across the globe. She volunteers for#MEAction and represents the group on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC). She has worked and/or volunteered in HIV services since 1989. She recently served on the New York Governor’s Task Force to End AIDS and was recognized by POZ magazine in 2017 for her work in HIV. Her articles on HIV can be found : www.thebody.com, www.thebodypro.com. ME webinars & work: www.meaction.ne Connect and Follow Teri.

A huge thank you to these tremendous Patient Leaders for proving true superheroes don’t always wear capes! Authentic but determined, these fierce leaders continue to inspire, teach and support their communities. It would be a mistake to not scroll back up and follow them all.

The post 2018 Top 10 Patient Leader Heroes appeared first on WEGO Health.

2018 Top 10 Patient Leader Heroes published first on https://drugaddictionsrehab.tumblr.com/

[lauramalchowblog]

2018 Top 10 Patient Leader Heroes

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  These are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community. 

  Kristal Kent

Fibromyalgia Patient Leader

Facebook | Instagram

“As an advocate chronicling my daily struggles with Fibromyalgia (FM), my goal is to promote Fibromyalgia Awareness, Education and Support online to unite the FM Community on Facebook. For many years my annual Fibromyalgia Awareness Campaign “POP and PUT ON PURPLE to Promote Fibromyalgia Awareness” has shed light on this Central Nervous System disorder, promote understanding, connect fellow Fibro Fighters from over 30 countries and validate Fibromyalgia as a tangible, medically defined Invisible Illness. I’ve recently established the “FOURTH FRIDAY FIBRO DAY” which is a Facebook Fibromyalgia Awareness event on the 4th Friday of each month. Kristal at The Fibromyalgia Pain Chronicles.” Connect with Kristal

Heather Von St James

Mesothelioma Patient Leader

Facebook | Twitter | Instagram

“I am a 12+ year survivor of mesothelioma, patient advocate, speaker and freelance writer/blogger. I began blogging about my journey when I realized that people needed hope when diagnosed with mesothelioma. I was given just 15 months to live upon my diagnosis, but have gone on to outlive their best case scenario. Advocacy is more than what I do, it is part of me. I speak for those who can’t and for those who have yet to be diagnosed. I believe until there is more awareness about mesothelioma, nothing will change. That is my mission, Awareness and advocacy are everything.” Follow Heather

Gustavo San Martin

Multiple Sclerosis Patient Leader

Facebook

“I was diagnosed with Multiple Sclerosis (MS) in 2011. The day I heard about the disease, my mother start researching about MS on Internet. The references she found were not positive! A few minutes later she came into my room, sobbing from crying, and asked: Son, are you going to die? From that day on I decided to work so that any other people would not come across the scenario that my mother found. Today, 4 years later, AME (the page I created to inform) is the largest association / platform of people with MS in Brazil.”

Gustavo is the winner of the 2017 WEGO Health Award for Best in Show: Facebook because the Facebook group he’s created for Brazilians living with MS is one of a kind! By sharing his story and his sincere passion for helping other patients, Gustavo has built a platform that supports thousands of patients daily. Learn more about Gustavo

Dawn Gibson

Chronic Illness Patient Leader

Facebook | Twitter

Dawn Gibson, best known as @DawnMGibson is a well known patient advocate and e-patient, writer, and patient experience consultant working in an advisory capacity with corporations, foundations, researchers, and other thought leaders to form an accurate and helpful understanding of chronic illness and disability. She is the founder and host of the Spoonie Chat Twitter and Facebook communities, regularly fields questions posted to Twitter and the #SpoonieChat tag between events, and works to connect patients with essential self-care concepts, appropriate advocacy organizations, and each other. Connect with Dawn

Candace Lerman

Rare Disease Patient Leader

Twitter | Instagram

“I am a rare disease patient who began advocating for others after researching and using an off-label chemotherapy treatment to put my blood disorder in remission. Thanks to my success with my treatment, I graduated from law school in 2.5 years, obtained my certification in Healthcare Compliance from Seton Hall Law School and passed the Florida Bar Exam. In addition to practicing law, I consult on pharmaceutical projects, advertising campaigns, political strategy and legislative initiatives. My unique experience allows me to address a variety of issues from a patient and professional perspective. I’m also working in translational research after the loss of my dog Kona Bear to canine glioma.”Follow Candace

Lara Bloom

Rare Disease Patient Leader

Facebook | Twitter | Instagram

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert. She is known for her documentary Issues with my Tissues about her attempts to walk the London Marathon. Click here to learn more about Laura’s journey

Deb Constien

RA Patient Leader

Facebook | Twitter | Instagram

“I’ve had Rheumatoid Arthritis for 35 of my 48yrs. Had a wrist fusion, knee replacement & 2 cervical neck fusions. My husband and son are my greatest support. I’m the Board Chair of the Arthritis Foundation & Advocacy Chair.  I regularly speak about advocacy. I am a 3x Platinum Ambassador winner from Arthritis Foundation and I’m also a representative for IFAA and the Leader of a Arthritis Support Network in Madison Wisconsin. I host monthly meetings in Madison. I also serve on the WREN advisory group & member of leadership board. I’m blessed to be able to do what I LOVE. Advocating for myself and others. Patient Council member for Creaky Joints. Research PCORI projects for ACP. Highly involved Volunteer.” Follow Deb

Terry Arnold

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

Terry Arnold was diagnosed with Triple Negative Inflammatory Breast Cancer, (TN IBC) in her right breast in August of 2007 after months of misdiagnosis. Also discovered her left breast had TN breast cancer as well. She realized this “orphaned form of breast cancer” was in dire need of research and educational funding. She formed the IBC Network Foundation in August of 2011, a 503c1 charity that she runs full time as a volunteer, to encourage education and fund research. The charity’s impact is now global as there is a sister charity in the UK as well. A milestone for education was realized with the development of an app available for a free download and is recommended by IBC specialists. Learn more about Terry and her foundation. 

Sue Jackson

Chronic Illness Patient Leader

Instagram | Twitter

“I have had the immune system disorder ME/CFS (known in the US as Chronic Fatigue Syndrome) since 2002, and both of my teen sons have had it since 2004. My older son also has Lyme disease plus two other tick infections. ME/CFS is a very debilitating illness with few effective treatments available; it requires serious lifestyle changes and activity restriction. I started writing my blog Learning to Live with CFS in 2006, and I cover topics ranging from research updates to treatments I have tried to dealing with the emotional impact of living with a chronic illness. I try to maintain a positive attitude and focus on joy and support. In addition, I started a local group in my community and surrounding states for families whose kids have ME/CFS and two online groups on Facebook, one for parents of kids who are sick and another for the teens and young adults themselves. Although my family has lived with some serious challenges these past 12 years, we are happy and try to find moments of joy in even the most difficult days.” Follow Sue.

Terri Wilder

ME Patient Leader

Facebook | Twitter

Terri was diagnosed with myalgic encephalomyelitis (ME) in March 2016. Since her diagnosis she has worked with elected officials, public health departments, health care providers, and activists to raise awareness about ME in New York State and across the globe. She volunteers for#MEAction and represents the group on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC). She has worked and/or volunteered in HIV services since 1989. She recently served on the New York Governor’s Task Force to End AIDS and was recognized by POZ magazine in 2017 for her work in HIV. Her articles on HIV can be found : www.thebody.com, www.thebodypro.com. ME webinars & work: www.meaction.ne Connect and Follow Teri.

A huge thank you to these tremendous Patient Leaders for proving true superheroes don’t always wear capes! Authentic but determined, these fierce leaders continue to inspire, teach and support their communities. It would be a mistake to not scroll back up and follow them all.

The post 2018 Top 10 Patient Leader Heroes appeared first on WEGO Health.

2018 Top 10 Patient Leader Heroes published first on https://venabeahan.tumblr.com

[edsenger]

2018 Top 10 Patient Leader Heroes

There are thousands of Patient Leaders working day in and day out to educate, raise awareness and support their patient community. The WEGO Health Awards give us the chance to recognize Patient Leaders across all condition areas and platforms, to ultimately find the top Patient Leaders in each space.

To recognize the Patient Leaders community members endorsed, we’ve compiled the Top 10 Patient Leaders in each category.  These are a particularly special group of Patient Leaders. Their dedication is igniting change and their impact is indisputable. They embody the spirit of a healthcare influencer and continue to go above and beyond for their communities. These Patient Leaders are truly the heroes of the online health community. 

  Kristal Kent

Fibromyalgia Patient Leader

Facebook | Instagram

“As an advocate chronicling my daily struggles with Fibromyalgia (FM), my goal is to promote Fibromyalgia Awareness, Education and Support online to unite the FM Community on Facebook. For many years my annual Fibromyalgia Awareness Campaign “POP and PUT ON PURPLE to Promote Fibromyalgia Awareness” has shed light on this Central Nervous System disorder, promote understanding, connect fellow Fibro Fighters from over 30 countries and validate Fibromyalgia as a tangible, medically defined Invisible Illness. I’ve recently established the “FOURTH FRIDAY FIBRO DAY” which is a Facebook Fibromyalgia Awareness event on the 4th Friday of each month. Kristal at The Fibromyalgia Pain Chronicles.” Connect with Kristal

Heather Von St James

Mesothelioma Patient Leader

Facebook | Twitter | Instagram

“I am a 12+ year survivor of mesothelioma, patient advocate, speaker and freelance writer/blogger. I began blogging about my journey when I realized that people needed hope when diagnosed with mesothelioma. I was given just 15 months to live upon my diagnosis, but have gone on to outlive their best case scenario. Advocacy is more than what I do, it is part of me. I speak for those who can’t and for those who have yet to be diagnosed. I believe until there is more awareness about mesothelioma, nothing will change. That is my mission, Awareness and advocacy are everything.” Follow Heather

Gustavo San Martin

Multiple Sclerosis Patient Leader

Facebook

“I was diagnosed with Multiple Sclerosis (MS) in 2011. The day I heard about the disease, my mother start researching about MS on Internet. The references she found were not positive! A few minutes later she came into my room, sobbing from crying, and asked: Son, are you going to die? From that day on I decided to work so that any other people would not come across the scenario that my mother found. Today, 4 years later, AME (the page I created to inform) is the largest association / platform of people with MS in Brazil.”

Gustavo is the winner of the 2017 WEGO Health Award for Best in Show: Facebook because the Facebook group he’s created for Brazilians living with MS is one of a kind! By sharing his story and his sincere passion for helping other patients, Gustavo has built a platform that supports thousands of patients daily. Learn more about Gustavo

Dawn Gibson

Chronic Illness Patient Leader

Facebook | Twitter

Dawn Gibson, best known as @DawnMGibson is a well known patient advocate and e-patient, writer, and patient experience consultant working in an advisory capacity with corporations, foundations, researchers, and other thought leaders to form an accurate and helpful understanding of chronic illness and disability. She is the founder and host of the Spoonie Chat Twitter and Facebook communities, regularly fields questions posted to Twitter and the #SpoonieChat tag between events, and works to connect patients with essential self-care concepts, appropriate advocacy organizations, and each other. Connect with Dawn

Candace Lerman

Rare Disease Patient Leader

Twitter | Instagram

“I am a rare disease patient who began advocating for others after researching and using an off-label chemotherapy treatment to put my blood disorder in remission. Thanks to my success with my treatment, I graduated from law school in 2.5 years, obtained my certification in Healthcare Compliance from Seton Hall Law School and passed the Florida Bar Exam. In addition to practicing law, I consult on pharmaceutical projects, advertising campaigns, political strategy and legislative initiatives. My unique experience allows me to address a variety of issues from a patient and professional perspective. I’m also working in translational research after the loss of my dog Kona Bear to canine glioma.”Follow Candace

Lara Bloom

Rare Disease Patient Leader

Facebook | Twitter | Instagram

Lara Bloom is the international Executive Director of the Ehlers-Danlos Society and responsible for globally raising awareness of rare and invisible diseases, specializing in the Ehlers-Danlos syndromes, hypermobility spectrum disorders (HSD) and related disorders. Lara manages coordinated medical collaboration, raising funds for research and focusing on the global progression of EDS and HSD. She speaks at conferences all over the world, lecturing to medical students and professionals, and supports specialists in the field by offering her experience as a leading patient expert. She is known for her documentary Issues with my Tissues about her attempts to walk the London Marathon. Click here to learn more about Laura’s journey

Deb Constien

RA Patient Leader

Facebook | Twitter | Instagram

“I’ve had Rheumatoid Arthritis for 35 of my 48yrs. Had a wrist fusion, knee replacement & 2 cervical neck fusions. My husband and son are my greatest support. I’m the Board Chair of the Arthritis Foundation & Advocacy Chair.  I regularly speak about advocacy. I am a 3x Platinum Ambassador winner from Arthritis Foundation and I’m also a representative for IFAA and the Leader of a Arthritis Support Network in Madison Wisconsin. I host monthly meetings in Madison. I also serve on the WREN advisory group & member of leadership board. I’m blessed to be able to do what I LOVE. Advocating for myself and others. Patient Council member for Creaky Joints. Research PCORI projects for ACP. Highly involved Volunteer.” Follow Deb

Terry Arnold

Breast Cancer Patient Leader

Facebook | Twitter | Instagram

Terry Arnold was diagnosed with Triple Negative Inflammatory Breast Cancer, (TN IBC) in her right breast in August of 2007 after months of misdiagnosis. Also discovered her left breast had TN breast cancer as well. She realized this “orphaned form of breast cancer” was in dire need of research and educational funding. She formed the IBC Network Foundation in August of 2011, a 503c1 charity that she runs full time as a volunteer, to encourage education and fund research. The charity’s impact is now global as there is a sister charity in the UK as well. A milestone for education was realized with the development of an app available for a free download and is recommended by IBC specialists. Learn more about Terry and her foundation. 

Sue Jackson

Chronic Illness Patient Leader

Instagram | Twitter

“I have had the immune system disorder ME/CFS (known in the US as Chronic Fatigue Syndrome) since 2002, and both of my teen sons have had it since 2004. My older son also has Lyme disease plus two other tick infections. ME/CFS is a very debilitating illness with few effective treatments available; it requires serious lifestyle changes and activity restriction. I started writing my blog Learning to Live with CFS in 2006, and I cover topics ranging from research updates to treatments I have tried to dealing with the emotional impact of living with a chronic illness. I try to maintain a positive attitude and focus on joy and support. In addition, I started a local group in my community and surrounding states for families whose kids have ME/CFS and two online groups on Facebook, one for parents of kids who are sick and another for the teens and young adults themselves. Although my family has lived with some serious challenges these past 12 years, we are happy and try to find moments of joy in even the most difficult days.” Follow Sue.

Terri Wilder

ME Patient Leader

Facebook | Twitter

Terri was diagnosed with myalgic encephalomyelitis (ME) in March 2016. Since her diagnosis she has worked with elected officials, public health departments, health care providers, and activists to raise awareness about ME in New York State and across the globe. She volunteers for#MEAction and represents the group on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC). She has worked and/or volunteered in HIV services since 1989. She recently served on the New York Governor’s Task Force to End AIDS and was recognized by POZ magazine in 2017 for her work in HIV. Her articles on HIV can be found : www.thebody.com, www.thebodypro.com. ME webinars & work: www.meaction.ne Connect and Follow Teri.

A huge thank you to these tremendous Patient Leaders for proving true superheroes don’t always wear capes! Authentic but determined, these fierce leaders continue to inspire, teach and support their communities. It would be a mistake to not scroll back up and follow them all.

The post 2018 Top 10 Patient Leader Heroes appeared first on WEGO Health.

2018 Top 10 Patient Leader Heroes published first on https://brightendentalhouston.weebly.com/

[myalgicencephalomyelitiscfstom]

2024 leaflet that can be printed out from #MEAction Network UK

Note that the CPD course is free for people around the world. And non-doctor healthcare professionals can also do it.

[myalgicencephalomyelitiscfstom]

MEAction Network @MEActNet “Dear Doctors” written by Jes Gordon and performed by @meactionga . #MEAction Georgia created this powerful video and they also have a #TeachMETreatME event coming up Sept.18 at 4 pm ET. The target is nursing students and medical professionals but all are welcome! Spread the word!

[myalgicencephalomyelitiscfstom]

The #MEAction Network

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Wondering about the terms PEM or pacing? Have you seen #StopRestPace and were curious as to what it referenced? Maybe you have been in our community a long time and want to save some easy ways to explain these concepts to others. Perhaps you have seen pacing misused and want to help clear that up. We hope this video helps! You can also find this info in recent posts/tweets if the video moves too quickly for you.

What is PEM? Post-exertional malaise (PEM) is the cardinal symptom of ME/CFS. PEM is a flare of symptoms and/or the appearance of new symptoms after exertion, often presenting 24 hours after the triggering event. Physical activity, cognitive overexertion, and sensory overload can all trigger PEM.

Sometimes exertion is misunderstood as exercise. Exercise is simply one form of exertion. Exertion is defined here as anything that stresses or strains the system. Exertion can be physical, orthostatic, sensory, cognitive, emotional, or environmental. No trigger can be controlled all of the time. The goal of pacing is to MINIMIZE post-exertional malaise rather than eliminate it.

#StopRestPace is a campaign created by #MEAction to help our community spread the word to those who were experiencing PEM after COVID-19 to rest and pace their activity.

Pacing is a self-management strategy for activity. Patients who pace well are active when able and rest when tired. Proper pacing involves building up awareness of the levels of daily activity that do not trigger relapse of symptoms through PEM. While this sounds simple, it is incredibly difficult. Activity management in severe patients can be very challenging since even activities like eating or brushing teeth may lead to a crash. Pacing advice may not always be useful in this population.

#MEAction offers three pacing guides - adult, pediatric, and clinician - on our site. Our pediatric guide was developed in conjunction with Long Covid families. Our clinician's guide was developed with Patient-Led Research. https://ow.ly/7kmp50OURm4

[myalgicencephalomyelitiscfstom]

The #MEAction Network

https://www.facebook.com/MEActNet/photos/a.1413464488935953/3005597943055925/

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Just a reminder for the weekend! When you have a complex chronic disease like myalgic encephalomyelits (ME) self-care is not a buzzword. It is a necessity.

It is not spas and manicures - or at least rarely. It is enforced aggressive rest and drinking your fluids and saying no when you want to say yes. It is also sometimes saying yes and hoping for the best. In other words, it can be complicated. What does it look like for you today?

Image description: When you have a complex chronic disease self-care is not a buzzword. It is a necessity. Self-care is necessary. Self-care isn't selfish. Pictured in the middle of stylized wording is a graphic of a person lying comfortably with an appearance of resting. 

[myalgicencephalomyelitiscfstom]

The #MEAction Network UK The NICE draft guideline on ME has been published and...GET is gone!! #GETLost

From the section on physical activity

"DO NOT offer people with ME/CFS: any programme based on fixed incremental increases in physical activity or exercise, for example GRADED EXERCISE THERAPY" (our capitals)

Find out how to get involved in our response: https://www.meaction.net/countries/uk/nice/

[myalgicencephalomyelitiscfstom]

From: Michiel Tack Me-cfs

Press Release from the European ME coalition (EMEC): 'Scientists call for more European research on ME/CFS'.

More than one hundred scientists have signed an open letter calling for more European research into the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). On 17 June, the European Parliament plans to vote on a resolution on ME/CFS research following a popular petition signed by thousands of patients and their loved ones.

This press release has been translated into French, Italian, Spanish, Dutch and German and has been sent to various media outlets and patient organizations in Europe.

If you have press contacts feel free to pass it on.

Many thanks to ME Action (The #MEAction Network) and Open Medicine Foundation (Open Medicine Foundation) for their help with the petition and open letter. Also big thanks to the many European ME/CFS patient organizations that supported these initiatives.

💪 Together we are strong! 💪