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Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National Institutes of Health’s (NIH) response to long Covid and ME, we co-hosted and organized a seminar for those with long Covid with amazing organizations and activists, #MEAction UK wrote an open letter to the National Institute for Health and Care Excellence (NICE), and #MEAction activist Terri Wilder was featured in a popular CNN article by Ryan Prior. That’s a big week already, and then we honored those with Severe ME on August 8th with an accessible chat, virtual choir, and poetry. Your responses and stories were beautiful and heartbreaking.  It reminds us why we fight and work so hard. The advocacy at the NIH and NICE, the educational seminars, and the press outreach is all so we can improve the lives of people with ME, and ultimately fight for the cure that everyone so desperately deserves. Read the details of the week below. If you don’t have the energy to read fully, you can save the article here for later reading.

Highlights from last week:

A handful of the US Advocacy Community Meeting participants saying hello! In all, we had a group just shy of 100 in the call. 

US Advocacy Meeting

The US Advocacy Community Meeting about the NIH’s handling of long Covid and ME was a great success! It was exciting to see 98 people attend to challenge our federal agencies and demand an urgent response to this growing crisis. Ben HsuBorger, #MEAction’s Community and Campaigns Director, and a team of awesome volunteers presented details from their full report on what the NIH is and isn’t doing for ME. Take a look! We are more motivated more than ever to move forward with next steps of a robust campaign. Want to get involved? Tell us more about yourself here.

Some members of the Long-Covid Seminar Panel. Dr. Lucinda Bateman (top center), Bottom row from left to right: Wilhelmina Jenkins, Jaime Seltzer, Terri Wilder, JD Davids, Alison Sbrana. 

Long-Covid Seminar

Thank you to all the presenters (Terri Wilder, Wilhelmina Jenkins, Dr. Lucinda Bateman, Brian Vastag, and JD Davids!) who participated in #MEAction‘s Long-Covid seminar on Friday presented in conjunction with Body Politic and the Covid-19 Working Group- New York. #MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, worked so hard to ensure this seminar was informative and not overwhelming for those attending. We will be sharing the video soon. The feedback we are already receiving from participants is so moving (We are only using initials below for privacy reasons). “The entire thing was so so good. The one clinical speaker did a great job and I learned a lot from her, and I was glad that the rest of the speakers were speaking from their own experiences as patients with specific things to bring to the table — every one of them gave me solid takeaways and they were all excellent speakers. Thank you so much!!” – Y.“…just a huge thank you. I am so grateful for your time and energy” – K.R. “I had been doing GET therapy and found it aggravated my symptoms but didn’t know what else I was supposed to be doing. This webinar has given me the confidence to listen to my body and do what I think I need.” – L.O.

UK Advocacy

#MEAction UK have once again written to the National Institute for Health and Care Excellence (NICE) imploring them to act to safeguard people with ME from harm, after their recent statement cautioning that the recommendation of graded exercise therapy should not be assumed to apply to patients with post-COVID symptoms. You can read their full open-letter here.

CNN Press Hit

#MEAction Activist Terri Wilder, MSW and #MEAction were featured in a new CNN article by Ryan Prior discussing connections between Long Covid/ Post Covid and ME/CFS. “Wilder fears that hundreds of thousands of people with Covid-19 could develop the same illness plaguing her. And leading medical experts have the same concern.” “Living with ME/CFS, seeing Covid-19 pillage her city and reading press reports of Covid-19 patients not recovering has left Wilder on edge. She has been using all her connections from her career in public health to help raise the alarm about chronic symptoms that so-called Covid “long-haulers” are likely to face for months or years to come.”

James before (left) and after (right) getting ME. He actually wasn’t able to stand that much light for the photo, which was taken in the dark with a long exposure. 

Severe ME Day

#MEAction honored those with Severe ME on August 8th, a tradition started by the 25% group. We shared stories, poetry, a virtual choir, and a chance to connect via Telegram (which is more accessible for people with Severe ME). We were honored to feature a poem by James Strazza. The response to his poetry was moving. People said it was “touching the core,” “powerful” and “painfully poignant.”  Thank you for sharing your poetry with us, James.

Upcoming Events

August 29th is right around the corner! Please help us spread the word that our Clinical Seminar on ME and Long Covid still has availability!

We are working hard for you and your loved ones to fight for treatments, care, and a cure. Help us keep up our fight by making a donation to #MEAction today.

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