#MEAction & Body Politic: We Are Stronger Together

Announcing #MEAction and Body Politic’s new collaboration: we are excited to announce that #MEAction will now host Body Politic’s advocacy work as a project of #MEAction.

Many of you know that Body Politic’s support group has officially closed. This was a devastating loss to the community – we know so much of the Long COVID and ME community have mourned the shutdown of their wonderful space and continue to grieve this loss. #MEAction knew we must keep the advocacy work alive that Body Politic so carefully and thoughtfully built over these last few years. 

The Body Politic Project will be ONE of #MEAction’s many projects. Our goal is and has always been, to support people with ME. As more people with Long COVID begin to be diagnosed with ME, and as Long COVID research opportunities still continue to thrive, this joining of forces is an opportunity that we believe will be very beneficial to us all. 

The ME community has fought so hard for those with Long COVID since the beginning of 2020, encouraging pacing, giving advice on finding healthcare, and so much more.  In return, Body Politic and many other Long COVID groups have built wonderful relationships with key advocacy partners including policymakers, clinicians, and researchers as they advocated for both people with Long COVID and ME through the last three years. Both communities will benefit from this collaboration.

The ME community offers the historical perspective, the wisdom from the long-time struggle, the insight and lived experience of accessing medical care and advocating for better care and research over many years when little public awareness or funding was available. The Long COVID community offers strength in numbers in grassroots advocacy, new opportunities for research and clinical education, and significant public awareness and education. We know that we are stronger when we work together, when our demands and tactics align. 

Over the coming months, we will thoughtfully put together a plan to align these two communities and build out our Body Politic Project. We will keep you up to date as our intentions and plans develop. 

In the meantime, #MEAction is very pleased to welcome those from Body Politic who are looking for social media-based support into our Facebook Support groups: either the #ME Action Living with ME Support Group or the #ME Action Long COVID-19 support group.

On a personal note, we at MEAction want to acknowledge the amazing leadership at Body Politic. They have accomplished so much under difficult conditions and we certainly understand that struggle. We are honored to be able to step in and further the work together. 

 

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3 thoughts on “ #MEAction & Body Politic: We Are Stronger Together”

  1. Thank you for posting this information on your website.

    With all the problems that have been happening to twitter it can be difficult to get information from that site these days. I’ll be checking this website more often than I used to.

    1. Hi, Linda! Here’s some more information on this (taken from our Instagram post):

      WHO: Dr. Benjamin Natelson at the Mount Sinai Hospital (New York)

      WHAT: The Pain and Fatigue Study Center at Mount Sinai is looking to examine why post activity fatigue (Post-exertional malaise) occurs in patients with ME/CFS and at what level. We are looking for patients that are between the ages of 25-60 and BMI of 30 and below.

      In order to confirm your eligibility, we will complete a brief phone intake.

      WHEN: The study will run for two years or until we reach our target number of participants.

      WHERE: The Mount Sinai Hospital: One Gustave L. Levy Place, New York, NY 10029. Reimbursement for time and travel will be available.

      HOW: If you are interested in possibly participating in this study, please call us at 212-844-6665 or email us at [email protected].

      Please email any questions to [email protected]. This is not an #MEAction study, so we cannot answer specific questions.

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