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#MEAction’s press team has corresponded with the SF Chronicle reporter for months on the backstory for this piece. We've had so many discussions on the abysmal state of ME clinical care, research and what we need going forward. We're thrilled see it live!
I have worked w/ Laurie 4+ years. One strength of #MEAction is always empowering the individual & helping us come together to do more than we have ever seen happen before. Laurie excels at empowering those around her. You might not see it but you have been seeing the results.
"Laurie comes to the work with a genuineness that makes her easy to respect, an openness that allows her to see strategic advantages in actions & in how to best utilize resources...& adaptability to lead (#MEAction) as it grows into & beyond the vision .."
Holly Latham
"Laurie has been a long time advocate for the community & #MEAction is lucky to have her... She is gracious, respectful & a truly wonderful person. She genuinely cares about all of us & ... I know that #MEAction will continue to do great things under her leadership." Terri Wilder
Lack of Dr education is why, though Im mostly homebound, I go to each appointment for my son! A parent that isn't educated about #mecfs would have no clue graded exercise therapy could make long covid worse! If I hadn't just protested with #meaction I'd take to the streets 😡
"Laurie comes to the work with a genuineness that makes her easy to respect, an openness that allows her to see strategic advantages in actions & in how to best utilize resources...& adaptability to lead (#MEAction) as it grows into & beyond the vision .."
Holly Latham
We are so excited to have Laurie Jones as the Executive Director of #MEAction! Laurie is empathetic, dedicated, & laser-focused on the needs of the ME community. She is also a brilliant manager and community-builder. I can't imagine a more perfect person to lead the organization.
#MEAction Board Co-Chairs Beth Mazur and Jill Hinson have an announcement they would like to share with you all.
MEAction is thrilled to announce Laurie Jones @LaurieMichelleJ has been named Executive Director effective immediately.
Thank you to those gathering for #MECFS today in #London !
My plush piglet helped me with holding the red thread ;)
We demand commitment to the £100 million missing from research funding.
"I know this: living with ME is incredibly hard, and fighting for people with ME is definitely not for the faint of heart. There is no one I trust more to lead #MEAction, to support our team, to have my back than Laurie...."
Ben Hsuborger
Getting an Echocardiogram. First time #CovidLongHauler over here. Fingers cross things are well. These fevers, shortness of breath, and fatigue are insane! #MEaction 10 months in!! Results next week!
"#MEAction has been and will remain in good hands with Laurie!... I have never worked at a non-profit organization that makes sure to center the needs of the community so effectively and worked alongside individuals whose hearts are poured into their work so continuously..." Erin
We are excited for the future of #MEAction! This community and our voice has never been stronger. Under Laurie’s leadership we can accomplish even more in the coming months and years.
#MEAction staff is just as thrilled as our board & shared some of our thoughts as well! ⬇️
“Shame on Biden!” activist Terri Wilder of New York yelled through a megaphone as #MEAction livestreamed the action. “Tell him your story of living with long COVID! Of living with ME! That people are still getting disabled!”
"We think it’s absolutely absurd,” said Jaime Seltzer, director of scientific and medical outreach at the nonprofit #MEAction."
Adds Adriane Tillman, who does the group’s outreach, “They’ll be reinventing the wheel.”
about how to diagnose and treat #LongCovid patients who are developing ME/CFS.
A great interview to share for folks who are trying to figure out if they have #MECFS.
Art Mirin, #MEAction CA Chapter Lead, recently published a preliminary analysis of the annual economic impact of Long COVID in the US in Fatigue: Biomedicine, Health and Behavior which shows the total annual economic impact of Long Covid ranging from $140 billion to $600 billion.