USA: News from Solve ME

TheNewHappy.com IS consumerism. Huge numbers of people, especially sick/disabled and families, are struggling to pay basic bills, buy food, etc. Preaching Happiness during financial recessions/austerity etc is sickeningly crass.

She is selling consumer goods, toxic positivity. What the hell is Solve playing at? At a time like this - Solve is regressing.
 
Did anyone watch this? I meant to, but by the time I remembered it was half way through and impossible to register.
 
From an email:

A Personal Message from Solve CEO Oved Amitay

Dear Friends,

Today, I am sharing an important personal message with you. In February of 2020, I made my commitment to join Solve, and soon thereafter the global COVID-19 pandemic came upon us. We all had to make major adjustments and I'm proud that Solve was one of the first organizations to step up and act, partner with Long Covid patient advocates and researchers to highlight the connection between ME/CFS and Long Covid, and to help both communities. I believe that Solve is now well positioned to provide leadership in the quest for better solutions to these growing unmet needs.

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.

I have been personally encouraged by the research driven by COVID-19 into the biological basis of these conditions, confirming many notions we've had about ME/CFS. These new insights are creating new opportunities that can get us closer to finding solutions, and I have renewed excitement to leverage my experience to help advance diagnostics and therapeutics — areas where I can best use my skill set and connections, serving the community and Solve in a different role. I will also dedicate more time to emerging needs within my family.

I am thankful to Solve’s Board for accommodating my decision and immediately starting a national search for a successor. I will remain in my current position until a new leader is identified, ensuring a productive transition.

In the meantime, nothing changes. I maintain all my organizational duties, engagements, and collaborations. There is work ahead of us, and my commitment is unwavering.

Leading Solve on behalf of our community during this challenging time was a privilege that changed me forever. But, Solve is not about one individual. It’s the dedicated staff, Board, and above all you who support us and the community we serve, who make our work possible.

I am grateful to all of you for your friendship and support, and no doubt you’ll continue to see me around.

With my heartfelt regards,

oved-headshot-image.png

oved-signature-image.png

Oved Amitay, President & CEO
Solve M.E.
 
From a Solve email:

Dear Friends,

By now you’ve heard directly from Oved Amitay regarding his need to step down as President and CEO of Solve M.E. over the coming months. While all of us at Solve regret ultimately losing his wisdom and collaborative spirit as our leader, we’re also excited to hear his plans to remain active with Solve and for our community by focusing his energies on finding better diagnostic and therapeutic solutions for us.

First and foremost, I wish to ask you to join me and the entire Solve Board in sharing our deepest words of appreciation for the outstanding work that Oved has done to advance the cause in support of the ME/CFS and Long Covid communities as our CEO over these past three plus years. He possesses a unique understanding of our community and the complexity of struggles faced by people affected by these devastating diseases. Those insights have proven to be incredibly valuable to Solve and to those we serve. In that light, we are very pleased that Oved will stay committed and involved with the cause going forward. For your past AND future contributions, Oved, thank you so very much.

As Chair, I also want to share with you that the Solve M.E. Board has mobilized as a priority to find a new CEO with confidence. We’ve established a search committee that has already engaged a leading executive recruitment firm to help us find an ideal new CEO — one who has the knowledge, vision and leadership ability to carry Solve forward into a new era of discovery and innovation. That person will join an amazing staff of smart, creative and compassionate people who are eager to take our battle against Long Covid and ME/CFS to the next level. Until we onboard our next CEO, Oved has generously agreed to remain as President and CEO to ensure a seamless transition.

We’ll keep you up to date on our progress in the coming months as we narrow down the list of qualified candidates for the job. Rest assured that the high standard set by Oved will inform our decision. I’m excited for what the future holds for Solve, and look forward to sharing news of our incoming CEO with you very soon.

Thanks to this community for the tremendous support you have always provided to Solve,

John_Nicols_Headshot.png

John Nicols
Chair, Solve M.E. Board of Directors
jnicols@solvecfs.org
 
July Advocacy Cafe

July 21 @ 12:00 pm PDT/ 3:00 pm EDT

https://solvecfs.org/event/july-advocacy-cafe/

No registration required.
Solve M.E. said:
Advocacy Cafe is a community-favorite event that brings you more stories, inspiration, and conversations to connect and empower our advocates. This month’s session will take place 7/21 at 12 pm PT/ 3 pm ET and feature a conversation with Solve M.E.’s Emily Taylor about our appropriations process.
Click to expand...

Find the time in your time zone here:

https://www.timeanddate.com/worldcl...uly+Advocacy+Cafe&iso=20230721T13&p1=137&ah=1
 
Solve M.E. webinar about the new STAT Health wearable, an in-ear device to track blood flow:
The Future of Symptom Tracking:
Exploring STAT Health’s Revolutionary In-Ear Device That Measures Blood Flow to Head

July 25, 2-3 PM Pacific Time

https://solvecfs.org/event/the-futu...-ear-device-that-measures-blood-flow-to-head/

Find the time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=Solve+ME+Webinar:+STAT+Health+In-Ear+Device+To+Measure+Blood+Flow&iso=20230725T14&p1=137&ah=1

Register here:

https://us02web.zoom.us/webinar/register/WN_FI9bvWzpTnCYbBhP7lNwzw#/registration

This forum thread has more information and discussion about this device:

https://www.s4me.info/threads/new-i...elp-understand-dizziness-and-brain-fog.33688/
 
I watched the webinar. Very interesting. They are still in the research stage. The device is designed to fit in the ear and measure cerebral blood flow. It will also be able to measure if you are upright, standing, lying down, etc.. It measures heart rate, blood pressure also. He did at one point state something that seemed to indicate his feedback and information is coming from the Dysautonomia/POTS community, not ME/CFS.

He said he just presented at the Dysautonomia international conference a couple weeks ago.

The dude just wanted to help his dad, who started fainting. you gotta like that.
 
This message was posted on twitter by Solve ME. It's a call to action for US folks.

Solve ME said:
Take Action: A House majority bill seeks to cut billions of dollars of funding for critical NIH, CDC, and other health research programs. This would be a major setback for the Long Covid and ME/CFS communities.

https://p2a.co/sz0vjme
Click to expand...

However, if you click the link it takes you to an automated tool that has "Long Covid Alliance" written across the top.
Screen Shot 2023-09-08 at 8.56.51 PM.png

I'm guessing this is a joint effort with several groups supporting it. I'm posting it here since I first saw it posted by Solve ME. Feel free to move this if you think it fits elsewhere.

Some text from the automated email tool:
Oppose the harmful budget cuts to federal health agencies in the House majority’s Labor-HHS new bill!

The Appropriations Committee seeks to cut BILLIONS from our federal health agencies, bringing devastating consequences to those enduring the life-altering and often disabling effects of infection-associated chronic conditions like Long COVID.
  • The National Institutes of Health (NIH) will lose $3 billion
  • The Centers for Disease Control and Prevention (CDC) will lose $1.6 billion
  • The Advanced Research Projects Agency for Health (ARPA-H) will lose $1 billion
  • The Agency for Healthcare Research and Quality (AHRQ) will be completely dissolved
Click to expand...
 
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Solve M.E. Welcomes Chief Scientific Officer,
H. Timothy Hsiao, Ph.D.

Solve M.E. is pleased to announce that H. Timothy Hsiao, Ph.D. recently joined us as Chief Scientific Officer, Head of Research Strategy and Alliances. In this role, Tim will create a roadmap for advancing translational research, oversee Solve M.E.’s research investments, and forge collaborations with other research-focused organizations.

Tim’s addition to the team is the latest exciting update to research at Solve — earlier this week, we launched our new patient-centered data platform, Solve Together. He shares his thoughts below:

“With sincere gratitude, I am excited for this privilege to stand, walk, and run with you in the journey of medical research to understand and fight against the mystery and toll of ME/CFS and Long Covid. I believe that research is a powerful tool that can not only enrich the collective knowledge of humankind but also, more importantly, bring hope to patients, families, and all of us who care about one another’s wellbeing.”

Before joining Solve, Tim spent more than twenty years running research projects or managing research programs and funding in both non-profit and federal institutions, including the National Center for Advancing Translational Sciences (NCATS) and the National Institute of Allergy and Infectious Diseases (NIAID). He is deeply dedicated to the power of collaboration in advancing medicine.

Please join us in welcoming Tim to our community, and read his full letter below:

Letter to the Community
 
Solve Together Basics: A Walkthrough from the Participant's Perspective
October 4 @ 11:00 am - 12:00 pm PDT

https://solvecfs.org/event/39221/
Solve M.E. said:
Join Solve Senior Director of Research Leslie E. Phillips, PhD for a walkthrough of our new patient-centered data platform, Solve Together!

In this webinar, we’ll share information about joining the platform, share tips for maximizing built-in tools for participants, and answer your questions.

Solve Together is fully accessible by smartphone and will allow participants to track symptoms, connect wearables, download reports for doctor visits, link electronic health records, and expend less time and energy on participation through short, infrequent surveys and passive data collection.

Stay tuned for additional webinars in the Solve Together series.
Click to expand...
 
Merged thread

An expanded agenda for Solve

Not sure howI feel about this, but today I got this in an email from Solve:

" In 2021, Solve co-founded the Long Covid Alliance (LCA) with a simple vision: create a space where all voices affected by post-infection chronic conditions, especially ME/CFS and Long Covid, could be heard, amplified, and empowered.

"Over the past two years, the Long COVID Alliance has grown into a powerful force for change, and has led us to the next chapter in our community building story— the foundations of the Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACC-PAC). "
 
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A copy of the whole email:

Solve Advocacy: Emily Taylor Reports on Efforts to Form New Disease Coalition
Energy Saving Summary
  • Read: Solve’s Emily Taylor shares insights on building an infection-associated chronic conditions coalition
  • Register: October 24 national webinar to feature findings of critical needs-assessment report
Solve Leads New Disease Coalition Building
Uniting Voices: The Journey from Long COVID Alliance to IACC-PAC
Dear Solve Community,

As Vice President of Advocacy and Engagement, I'm excited to share our remarkable journey in uniting voices, forging connections, and expanding our community.

In 2021, Solve co-founded the Long Covid Alliance (LCA) with a simple vision: create a space where all voices affected by post-infection chronic conditions, especially ME/CFS and Long Covid, could be heard, amplified, and empowered.

Over the past two years, the Long COVID Alliance has grown into a powerful force for change, and has led us to the next chapter in our community building story— the foundations of the Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACC-PAC).

In recent months, I’ve been privileged to work with the leadership of the LCA, COVID-19 Longhauler Advocacy Project, Patient-Led Research Collaborative, and Dysautonomia International. Together, we’ve created a report, set to be published on October 24th alongside a national webinar, which encapsulates the stories, insights, and challenges faced by our collective communities.

I want to express my gratitude to every individual who has contributed to the Long COVID Alliance and the creation of the IACC-PAC. Your passion, resilience, and commitment have transformed a vision into a vibrant reality. Together, we are not just advocates; we are a force for change, and our collective strength knows no bounds.

With heartfelt appreciation,

Emily Taylor
Vice President of Advocacy and Engagement
Solve M.E.

Read the Full Letter Here


Register for the Infection-Associated Chronic Conditions Patient Advocacy Coalition (IACCPAC) Webinar
IACCPAC_October_Webinar_Graphic__1_.png

Witness the power of community on Tuesday, October 24 at 12PM ET / 9AM PT as the IACC-PAC team presents findings from a new report about the needs and priorities of the infection-associated chronic conditions community.

During our webinar, we’ll present findings from our workshop sessions and identify a roadmap that we hope will strengthen support for individuals experiencing IACC through strategic collaboration.

Register Here


 
An email:

Dear Friends,

It is with great enthusiasm that I announce that Kristin Jacobson, a fierce patient advocate and member of Solve’s Board of Directors, will lead our organization as our newest President and CEO. She succeeds Oved Amitay, who served from June 2020 - October 2023.

When we mobilized to find a new CEO in July, our search committee sought to identify someone with the knowledge, vision and leadership ability to carry Solve forward into a new era of discovery and innovation. It became immediately apparent that Kristin, who joined Solve’s board in May 2023, was a natural fit for this role.

Kristin has extensive and relevant experience as a CEO and patient advocacy leader, and brings with her over 30 years of expertise in healthcare, including executive roles in both corporate and nonprofit sectors. In all her work she has been a patient advocate first, with a special focus on medically underserved communities. She has transformed and empowered California’s autism community by leading key initiatives to establish coverage, advance health policy, and spur legal enforcement of insurance coverage for autism and other mental health conditions. I share the confidence of my fellow board members in Kristin, and her ability to bring her successes to Solve.

During my tenure as a board member and as Solve’s board chair, I have witnessed the leadership of three CEOs, each bringing their unique strengths and perspective to the role. Throughout the years, Solve has grown in its ambitions, influence, and impact; and never wavered in its commitment to improving the lives of all individuals suffering from ME/CFS, Long Covid, and other post-infection diseases.

As with many other former members of Solve’s leadership, Oved remains committed to the organization and our efforts — he will stay on to guide Kristin and the team through the end of the year as a strategic advisor. We thank him for his ongoing dedication, insights, and leadership.

I hope you’ll join me in wishing Kristin the very best of luck as she steers at the helm of Solve — a beloved organization to me and my family, and to many of you in our community.

With excitement,
John Nicols
Chair, Solve M.E. Board of Directors
 
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