#MillionsMissing: Dr. Mady Hornig to speak at New York ME/CFS Protest

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A Movement

 

The #MEAction Networks #MillionsMissing round 2 protests for ME/CFS will hit around the globe on the 27th of this month, with even more unprecedented numbers getting involved. At last count protests in 24 cities are now taking place. 

The #MEAction platform really has helped form a global movement for ME/CFS. Advocacy has been hitting all new levels and new highs with increasing organizing in the community across countries. It has also become increasingly more strategic and targeted. Independent advocates and organizations are also working collaboratively with patients through #MEAction groups on specific actions to work on key issues for ME/CFS.

It is not an easy feat making it possible for patients to advocate when many are homebound or bedbound, but #MEAction is making this possible by making actions simplified and accessible. They have quite a number of successful campaigns now under their belt to show for their work. Hundreds of volunteers are involved across the globe!

There is a dedicated #MillionsMissing website where you can find information and contact points for any protests that may be in your area along with options of how to get involved at most levels of functioning. If you sign up on the main #MEAction Network website, you will hear about many of the latest happenings, news and calls for action. Why not become part of a community that is making change happen for millions of people.

 

#MEAction are masters of social media to help people to participate and feel connected to events!

 

Research Funding

Research funding in ME/CFS is a massive issue and the reason why the Microbe Discovery Project (MDP) exists. We formed to crowdfund and fundraise because world class researchers Dr. Ian Lipkin and Dr. Mady Hornig at the Columbia University Center for Infection and Immunity could not get the funds needed to do critical ME/CFS research. The funding situation is dire. Dr. Lipkin has also previously stressed the need for our community to speak to congressional representatives.

The #MEAction Network in collaboration and with the community’s help in the US, recently charged forward to do just that with a successful campaign to get 55 congressional representatives to sign a letter to the NIH. Thank you #MEAction and everyone participating in advocacy!

 

Dr. Hornig to speak at the NYC Demo

Dr Mady Hornig
Dr. Mady Hornig

Huge thanks to Dr. Hornig for adding her voice to the call on issues for people with ME/CFS. We wish we could be there and we hope many will be able to make it to this event – so please share widely! ME/CFS physician Dr. Susan Levine who is also Chair of the Chronic Fatigue Syndrome Advisory Committee will be speaking as well. We don’t know at this time if there will be a live feed like previous demonstrations or any recordings. If we hear more about this we will let you know. Check out #MEAction’s latest information on the NYC protest here.

Let’s get louder

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What: Protest for Myalgic Encephalomyelitis (ME)

Why: Urgent Need for Increased Funding

Where: 26 Federal Plaza, New York, NY 10278

When: September 27th 2016 at 4:30pm (please arrive early)

CALLING ALL ME PATIENTS, ALLIES, FAMILY, FRIENDS, CARETAKERS, MEDICAL PROVIDERS AND RESEARCHERS:

Let’s join together to make this invisible illness visible!

Please join us for an hour on September 27th outside of the NYC Health and Human Services office.

#MillionsMissing is a dedicated to the millions of Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of medical providers are missing out on proper training to diagnose and help patients manage this illness.

EMAIL US: MILLIONSMISSING@MEACTION.NET

Details are from this PDF flyer for the NYC protest: marketing-flyer-ny-1