"A Personal Message from Solve CEO Oved Amitay"

"More than three years after joining Solve, reflecting on this critical moment, I now feel that it is time for me to make some changes. In the months ahead, I’ll be stepping down from my role as President and CEO [of Solve M.E.]"

Full text of message here:

https://www.s4me.info/threads/usa-news-from-solve-me.19489/page-7#post-481890

#MEcfs #PwME #Advocacy #SolveME #LongCovid

I hope this is more than just words. I hope this project helps break down some of the barriers and helps patients, clinicians, and researchers work together.

Long Covid Alliance website:

https://longcovidalliance.org/

#LongCovid #MEcfs #POTS #Dysautonomia #MCAS #EhlersDanlos #Lyme #SolveME

From the Washington Post:

"For covid long-haulers, the pandemic is far from over.

The end of the public health emergency leaves many fearful they will be forgotten"

Mentions the #MillionsMissing 2023 event at the Washington Monument (see attached photo).

#COVID #LongCovid #MEcfs #PostCovid #SolveME

@longcovid
@mecfs

Solve M.E. calls for new NIH Office for Infection-Associated Chronic Illness Research (IACIR)

"This office would be responsible for overseeing and coordinating research and development efforts into infection-associated chronic illnesses within the NIH, accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others"

https://solvecfs.org/solve-spearheads-call-for-new-nih-office-for-infection-associated-chronic-illness-research-iacir/

#LongCovid #MEcfs #POTS #Fibromyalgia #SolveME

I'm so grateful to all the folks who met with members of Congress today as part of Solve M.E.'s advocacy week!

Please contact your Senators and Representative to ask them to support the Care for Long Covid Act using this link -

https://p2a.co/Xpr5nVf

#LongCovid #MEcfs #SolveME
#USPol #USPolitics

A snippet from a twitter thread about Solve ME's Advocacy Week (happening now) and meetings with members of Congress.

The upshot seems to be that focusing more generally on chronic illnesses that are triggered by a virus, post-viral issus, seems to be a better strategy. Interesting thought.

#LongCovid #MEcfs #SolveME #Advocacy #USPolitics

For my USA followers:

If reading so many stories about Long Covid leaves you asking, "How can I help?" then here's a suggestion:

Ask your Members of Congress to support the CARE for Long COVID Act. The link below goes to a "one click" tool that will send a message to your Senators and your Representative.

https://p2a.co/Xpr5nVf

#LongCovid #MEcfs #SolveME #MillionsMissing
#USPol #USPolitics

From Solve M.E. - a call to action for Advocacy Week:

"Ask your Members of Congress to support the CARE for Long COVID Act!"

Link below goes to a form that can send email to your officials with one click.

You can modify the message (pre-filled) before sending.

https://p2a.co/Xpr5nVf

#MEcfs #LongCovid #PwME #Advocacy #SolveME #USPol #USPolitics

@mecfs
@longcovid

Upcoming Solve M.E. webinar:

CDC Update: Recent Strides in Long Covid

Wednesday, March 29
10 - 11 am Pacific

Solve M.E. President Oved Amitay welcomes Dr. Elizabeth Unger and her CDC colleagues to share updates and progress.

Online via Zoom, registration required. Here's the link with more details:

https://solvecfs.org/event/cdc-update-recent-strides-in-long-covid/

#LongCovid #MEcfs #Webinar #SolveME #CDC #Research

@mecfs
@longcovid

Reminder for US folks who want to participate in Solve ME's Advocacy Week scheduled for April 17 - 21, 2023.

Deadline to register for in-person or Zoom meetings is this Sunday, March 26.

Registration for In-person Senate Meetings: https://lobbydayregistration.wufoo.com/forms/z1q7hmh21lr1kwk/

Registration for Virtual Meetings with U.S. House Members: https://lobbydayregistration.wufoo.com/forms/z1adjibw0c3ltzm/

Details and FAQ: https://solvecfs.org/advocacy/advocacyweek2023/

#MEcfs #PwME #LongCovid #USPolitics #Advocacy #SolveME

Here's where you can sign up for Solve ME Advocacy Week:

https://solvecfs.org/advocacy/advocacyweek2023/

In addition to the higher energy activities, such as meeting with Congress representatives, there are lower energy activities such as email, phone calls, and posting on social media.

#MEcfs #LongCovid #PwME #SolveME #Advocacy #AdvocacyWeek

"ET: Whether it’s the person with the illness or a representative you appoint, your healthy ally, Solve ME focuses on making the program fully accessible.

We offer all the training, support, and materials needed to make that journey as easy as possible.

Patient stories matter and the more stories we can directly share with those in power, the greater our chance for change. Advocacy Week is a chance for those impacted to share their stories directly."

#MEcfs #LongCovid #SolveME #Advocacy

"ET: Advocacy Week is our flagship program built on a single principle: 'No one tells your story better than you.'

The week provides both in-person and virtual opportunities for the community to speak directly with their Senators and/or Representatives. We try to make it as easy as possible to bring your stories into the halls of power."

#MEcfs #LongCovid #PwME #SolveME #Advocacy

"ET: Long Covid has caused Solve ME to expand our mission to look more closely at post infectious illnesses in general. Post infectious illness is a board term covering a whole family of illnesses. It’s a similar concept to cancer, which has a lot of different subtypes. Post infectious disease also has a lot of subtypes. We are looking at them as a family of diseases to see what can be learned at a more macro level."

#MEcfs #LongCovid #PwME #SolveME #Advocacy #AdvocacyWeek

"MK: For folks not intimately involved in the ME/CFS or Long Covid community, can you describe Solve ME and what your primary mission is? Has Long Covid changed anything for Solve ME?

ET: Solve ME is a non-profit organization dedicated to research, education and advocacy for post infectious illnesses, specifically ME/CFS and Long Covid."

#MEcfs #LongCovid #PwME #SolveME #Advocacy #AdvocacyWeek

"I had the honor of interviewing Emily Taylor, Vice President of Advocacy and Engagement at Solve ME. Solve ME is one of the oldest ME/CFS advocacy groups, founded in 1987. We chatted about Solve ME in general, Long Covid, and their upcoming Advocacy Week program.

Patients, caregivers, and allies, this is your chance to participate in a major advocacy event that already has momentum. Momentum creates more momentum, so jump on board!"

#MEcfs #LongCovid #PwME #SolveME #Advocacy #AdvocacyWeek

From Calling all ME/CFS Allies!

"Solve ME Advocacy Week: Sign Up Today!"

An interview with Solve ME (Emily Taylor) about this year's upcoming Advocacy Week:

"No One Tells your Story Better than You"

https://encephalogirl.substack.com/p/solve-me-advocacy-week-sign-up-today

I'll post a few quotes from the blog post in the replies.

#MEcfs #LongCovid #PwME #SolveME #Advocacy #AdvocacyWeek

@mecfs @longcovid

From the Solve M.E. group:

"We hope you’ll celebrate Presidents’ Day this year by signing up to meet with your elected officials as part of Solve M.E. Advocacy Week in April 2023. Advocacy is patriotic!"

Register here: https://solvecfs.org/advocacy/advocacyweek2023/

#Advocacy #MEcfs #LongCovid #SolveME #USPolitics #USPol

Webinar reminder:

“Long Covid: What Will It Take To Accelerate Therapeutic Progress?”

Solve M.E. and The Biotechnology Innovation Organization (BIO) will co-host this 3 hour webinar on Tuesday, February 21, 10:00 AM - 1:00 PM Pacific Time / 1:00 - 4:00 PM Eastern Time

Register here: https://bio-org.zoom.us/webinar/register/7416748364515/WN_j0hhpdzFQpujJRcVanmnMg

#COVID #LongCovid #MEcfs #SolveME

@longcovid

Webinar announcement from Solve M.E.:

“Long Covid: What Will It Take To Accelerate Therapeutic Progress?”

Solve M.E. and The Biotechnology Innovation Organization (BIO) will co-host this 3 hour webinar on Tuesday, February 21, 10:00 AM - 1:00 PM Pacific Time / 1:00 - 4:00 PM Eastern Time

Register here: https://bio-org.zoom.us/webinar/register/7416748364515/WN_j0hhpdzFQpujJRcVanmnMg

#COVID #LongCovid #MEcfs #SolveME

@longcovid