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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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The advocacy group of Evelien Van Den Brink and Francis Martin (of which I’m part) now has an official name and website.

Check it out here: https://europeanmecoalition.wordpress.com/

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For those who might not remember, this is the group that has submitted the successful European petition for more biomedical research into ME. Evelien subsequently gave a speech in the EU parliament. They now have the following message to share, which I will post in full:

“Dear friends,

Hopefully, this message finds you well. The COVID-19 outbreak has a deep impact on our societies. We hope you and your loved ones are safe.

Despite the difficult circumstances, there are hopeful signs from our community. Many of us are still working tirelessly to improve the situation of ME patients worldwide. This is a reason to be hopeful.

As you know, our group is working on a project to raise awareness of ME in the European Union. The COVID-19 measures have led to a pause in our advocacy work because all meetings had to be postponed.

We are trying to use the available time to restructure and improve our internal communication so that our group will be stronger and more efficient when our projects can be resumed.

We have some good news that we would like to share with you. We have adopted an official name: European ME Coalition (EMEC). And in addition, we are also launching our new website. You can find it here; https://europeanmecoalition.wordpress.com/

We are very proud of it and hope you will enjoy it as much as we do.

Best wishes on behalf of the whole team,

Francis, Alice, Michiel, Joachim, Giada and Evelien

PS: You can still support the petition if you haven’t done so already! EU-citizens can sign the petition online and non-EU-citizens can sign the petition on paper. Please find detailed instructions on how to sign here; https://europeanmecoalition.wordpress.com/2020/04/04/how-to-sign-the-petition/
 
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