The #MEAction team will be taking memorial weekend off and will be out of the office until Tuesday!

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Category Archives: Awareness

South Carolina Raises Awareness about ME

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My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years. Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a paucity of medical care available to patients with ME/CFS, ...

#MillionsMissing from ME: Your Stories

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Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we want to share more of your stories. While not all ...

The Unique Challenge of Aging with M.E.

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Aging can be a challenging time for anyone but people with the debilitating, chronic disease of myalgic encephalomyelitis (ME) often find that their symptoms are dismissed as a "normal" part of aging, and so are left without the diagnosis, care and support that they need from their medical providers and community ...
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CBT and GET survey results published by Forward-ME Group

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In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who ...

GET and CBT are not safe for ME – summary of survey results

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#MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME report ...

Plan for #MillionsMissing Now! Read the Toolkit!

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#MillionsMissing 2019 is fast approaching, and now is the time to get started! Demonstrations calling for health equality for Myalgic Encephalomyelitis (ME) will take place around the globe throughout the week of May 5th - 12th, 2019. We are only two months away! How will you join the movement? Check out ...

Advocate for ME on the Hill! Only One Week left to Register!

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You still have one week left to register for Advocacy Day 2019 in Washington, DC! You may be trying to decide whether or not you should come (and, please, put your health first) or send a loved one in your place, so we thought we would ask some people who have attended about ...

Announcing #MillionsMissing 2019! Join us!

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Listen to the article:   We are thrilled to announce #MillionsMissing 2019! This May, we will take to the streets - or demonstrate from our beds - to show the world we are here, we are the #MillionsMissing, we will continue to fight for our demands for people with myalgic encephalomyelitis (ME) ...

Get involved: support science and advocacy this April

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April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME.  Concurrently, there will be a Congressional lobbying push hosted ...

Proud Accessible Activism: The ME Debate Virtual Demonstration

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Throughout history, activism and campaigning have been a driving force for positive change across the world. From civil rights to LGBTQ rights and more. However much of this has been inaccessible to large swathes of the disability community. For the ME community - the #MillionsMissing -  the nature of this illness ...