USA: News from Solve ME

Watch! Solve Ramsay Research Grant winner Rob Wüst, PhD presents "Skeletal Muscle Fatigue & Post-Exertional Malaise (PEM) in People with Long Covid & Implications for ME/CFS."

Dr. Wüst received a Solve M.E. Ramsay Research Grant in 2022 to study muscle pain, PEM, and treatments for pain and malaise in patients with diseases like Long Covid and ME/CFS. He found that, at the physiological and molecular levels, PEM differs from general fatigue. These differences have big implications for how physical exercise affects patients with Long Covid or ME/CFS.

In this webinar, Dr. Wüst updates us on his studies of these two central symptoms of Long Covid and ME/CFS (PEM and general fatigue), and answers questions from attendees.

Watch here:
https://ow.ly/fXYf50TCPwQ

https://twitter.com/user/status/1842264749020479863
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*****
Thread related to the research here:
Muscle abnormalities worsen after post-exertional malaise in long COVID, 2023/4, Wüst, van Vugt, Appelman et al
 
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(posting info on this thread since the link goes to Solve ME website)

Free webinar from Bateman Horne Center and Solve M.E. -

Severe ME/CFS: Care, Rights, and Research, 4-Part Webinar Series
Legal Rights (Pt. 2 of 4)

Wednesday, November 13
10:00 am - 11:00 am PST / 1:00 pm - 2:00 pm EST

https://solvecfs.org/event/severe-m...search-webinar-series-legal-rights-pt-2-of-4/
Solve M.E. website said:
ME/CFS has a broad spectrum of severity, with some able to work while others require total care and support. People living with Severe ME are often confined to their beds and require assistance with basic daily activities such as eating or bathing. Their symptoms can be exacerbated by light, sound, and movement, and some may require round-the-clock care.

These severe symptoms can limit access to medical care and support, leading to isolation from family and friends. About 25% of people with ME/CFS are severely ill and bedbound as a result of their illness. For many, there is a pattern of relapse and remission.

This four-part webinar series presented by Solve M.E. and the Bateman Horne Center will feature medical professionals, legal experts, scientists, and care partners discussing tips for caregiving, legal perspectives on individual rights, strategies for addressing treatment challenges for medical providers, and the latest research breakthroughs impacting people with Severe ME.

While this series is focused on Severe ME, the information shared will be relevant to other severe chronic illnesses, as well as people with moderate to mild ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs).
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Find time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=Severe+ME/CFS:+Care,+Rights,+and+Research+-+Legal+Rights+(Pt.+2+of+4)&iso=20241113T10&p1=202&ah=1

Register for one or more of the events in the series here:

https://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw

Severe ME:CFS webinar, Part 2 - Nov 13 2024.jpg
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"Creating a research home for ME/CFS, Long Covid, and others"

November 5, 2024

"Despite the significant disease burden, Myalgic encephalomyelitis (ME), previously known as chronic fatigue syndrome (CFS), lacks effective diagnostics and therapeutics. Emily Taylor, President and CEO of Solve M.E., explains why dedicated research for Infection-Associated Chronic Conditions and Illnesses (IACCIs) such as ME/CFS is vitally needed"

https://www.openaccessgovernment.or...home-for-me-cfs-long-covid-and-others/184620/

https://twitter.com/user/status/1854170895167742074
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The latest blog post from Solve ME, "a special message from Solve M.E. President and CEO Emily Taylor."

Hope Amid Uncertainty

https://solvecfs.org/hope-amid-uncertainty/

Here's are the hopeful items that she lists, see blog post for full details.
  • The Edge of Medicine Conference
  • Simmaron Research Study Findings and the Rapamycin Trial
  • Ampligen Clinical Trial Results Indicate Success in Treating Fatigue in People with Long Covid
  • Educating Medical Providers with the Inclusion of ME/CFS and Long Covid in Grand Rounds
 
Upcoming Solve ME webinar:

The Future of IACCI and Long Covid Research: ME/CFS and the Unfinished work of the COPVS Task Force

Wednesday, December 18
10 AM Pacific / 1 PM Eastern / 6 PM in Great Britain & Ireland

https://solvecfs.org/event/the-futu...-the-unfinished-work-of-the-copvs-task-force/
SolveME website said:
The [Commonalities with Other Post-Viral Syndromes] Task Force concluded that Long Covid researchers can learn from ME/CFS efforts to identify key symptoms, provide explicit criteria for when a symptom meets the threshold for being considered a problem, and employ tactics to ensure that consistent information is elicited from patient interviews across settings.

The Task Force published a paper on their findings in December 2023 and was then disbanded by NIH. However, there is clearly still a need to educate care providers, researchers, and the public about the connection between ME/CFS and Long Covid.

In this webinar, Emily Taylor and Dr. Jason will discuss their findings and what they signal for the future of research on ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses (IACCIs). The session will conclude with the launch of an important advocacy action.
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Find the time in your time zone here:
https://www.timeanddate.com/worldclock/fixedtime.html?msg=Solve+ME+Webinar:+The+Future+of+IACCI+and+Long+Covid+Research&iso=20241218T10&p1=137&ah=1
 
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Free webinar from Bateman Horne Center and Solve M.E. -

Severe ME/CFS: Care, Rights, and Research, 4-Part Webinar Series
Research (Pt. 4 of 4)

Wednesday, January 15, 2025
10:00 am - 11:00 am PST / 1:00 pm - 2:00 pm EST

Severe ME:CFS webinar - 4 part series.jpg
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More details here:

https://solvecfs.org/event/severe-me-cfs-care-rights-and-research-webinar-series-research-pt-4-of-4/

Register here:

https://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw

Find time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=Severe+ME/CFS:+Care,+Rights,+and+Research+-+Part+4+of+4&iso=20250115T11&p1=220&ah=1
 
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"Solve Sponsors Long Covid Medical Education Event at the University of Rochester"

https://solvecfs.org/solve-sponsors...ucation-event-at-the-university-of-rochester/
Solve ME said:
Emily Taylor reflected, “Solve is proud to help educate care providers. I’m encouraged by the inclusion of Long Covid in the Grand Rounds, and by the interest of attendees in learning more about Long Covid, ME/CFS, and other infection-associated chronic conditions and illnesses (IACCIs). When clinicians are well-informed and have the proper tools, they can provide the quality of care that our community deserves and make a difference in the lives of the millions who suffer.”
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"Solve Board Member Cynthia Adinig Selected for HHS Long Covid Advisory Committee"

https://solvecfs.org/solve-board-me...lected-for-hhs-long-covid-advisory-committee/
Solve ME said:
Solve Board Member Cynthia Adinig has been selected as a member of the Health and Human Services Secretary’s Advisory Committee on Long Covid (ACLC).

Cynthia has been actively engaged in community service for over a decade and was part of the team that helped introduce the Covid-19 Long Haulers Act. She is an advocate for both ME/CFS and Long Covid and has been featured in multiple national news media and is also the creator of a digital guide for medical care for Longhaulers of color. She is co-head of the first BIPOC Long Covid x ME/CFS support group, and co-founded the BIPOC Equity Agency.

Solve CEO Emily Taylor was pleased to nominate Cynthia for the Advisory Committee, which will bring perspectives from outside the government to help inform action of the Executive Branch on Long Covid and associated conditions, with a focus on health equity, by providing recommendations to the Secretary through the Assistant Secretary for Health.
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Important update: This date for this webinar has been changed to January 21.

The dates shown by the website and the registration link have now been changed to the new date.

https://solvecfs.org/event/severe-me-cfs-care-rights-and-research-webinar-series-research-pt-4-of-4/

Severe ME webinar - part 4 - Jan 21 2025.png
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ahimsa said:
Free webinar from Bateman Horne Center and Solve M.E. -

Severe ME/CFS: Care, Rights, and Research, 4-Part Webinar Series
Research (Pt. 4 of 4)

Old date: Wednesday, January 15, 2025
New date: Tuesday, January 21, 2025
10:00 am - 11:00 am PST / 1:00 pm - 2:00 pm EST



More details here:

https://solvecfs.org/event/severe-me-cfs-care-rights-and-research-webinar-series-research-pt-4-of-4/

Register here:

https://us02web.zoom.us/webinar/register/WN_YjCfUvHiQnmuAG6yV3jORw

Find time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=Severe+ME/CFS:+Care,+Rights,+and+Research+-+Part+4+of+4&iso=20250115T11&p1=220&ah=1
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From Solve ME:

New Clinical Trial Will Test How Baricitinib Improves Neurocognitive Function in Patients with Long Covid
Solve ME said:
This clinical trial is especially important for people with Long Covid because it is the first to evaluate a drug that targets chronic organ- and system-level inflammation, which may be a main cause of Long Covid symptoms.
...

The team is now recruiting 550 people from the continental US to participate. There are four enrolling centers—one in California (at the University of California, San Francisco), one in Minnesota (the University of Minnesota), one in Tennessee (Vanderbilt University), and one in Georgia (Emory University). Participants must be at least 18 years old; have results from either an antigen test or a nucleic acid amplification test showing infection by SARS-CoV-2 that happened at least six months ago; and have evidence of Long Covid.

The clinical trial team asks that participants have had symptoms of Long Covid for at least six months because they want to focus on people whose symptoms didn’t spontaneously improve early on. (Indeed, if a person’s Long Covid symptoms persist after five months, they may continue for a year or more.) Importantly, the team is also welcoming people whose symptoms have persisted for up to three years; by including these people, the team may learn how much baricitinib improves long-standing symptoms.

Unlike other trials for which people may participate at home or online, for the REVERSE-LC trial participants must travel to the enrollment sites because researchers must perform rigorous, detailed tests. The team will financially compensate participants for their time and will pay for hotel accommodation during on-site visits.
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Edit: Forum thread on this trial is here - https://www.s4me.info/threads/usa-r...cardiopulmonary-symptoms-lc-reverse-lc.41347/
 
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From Solve ME:

New Solve-Funded Study Backs Stellate Ganglion Block for Long Covid, ME/CFS
Solve ME said:
(line breaks added)

Dr. Deborah Duricka—affiliated assistant professor at the University of Alaska, researcher at Neuroversion, and Solve Ramsay Research Grant Awardee—continues to lead the way in understanding how we may treat people with Long Covid or ME/CFS by using stellate ganglion block.

A stellate ganglion block involves injecting an anesthetic drug into the stellate ganglion nerves, which are in the front part of a person’s neck.

The stellate ganglion regulates sympathetic signals, which control body functions that happen automatically (like blood pressure, heart rate, and sweat).

Because Long Covid and ME/CFS often severely disrupt sympathetic functions, bringing about symptoms like orthostatic intolerance and poor sleep, stellate ganglion blocks may significantly help people with these diseases.

In earlier work, Dr. Duricka’s team at the Neuroversion pain-management clinic in Anchorage showed how stellate ganglion block indeed reduces symptoms in people with Long Covid.

Within a few hours of having injections, people were less anxious, less depressed, less dizzy when standing, less fatigued, and had less post-exertional malaise (PEM).

They also had better focus, better memory, better senses of taste and smell, and more regular heart rates.

Incredibly, patients continued to do well long after getting a single injection.

They reported feeling better for at least 30 days after treatment; and sometimes, for many months.
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The forum thread for this study is here: https://www.s4me.info/threads/stell...ve-cohort-pilot-study-2024-duricka-liu.42528/
 
Part four of the Severe ME/CFS webinar series, recorded on January 21, is now available on SolveME's youtube channel.
The fourth and final webinar in our series focuses on severe ME research. Because traditional research methods are not always accessible to the severely ill, people with severe ME are often missing from clinical research. As they make up nearly 25% of all people with ME/CFS, their absence greatly limits our understanding of the disease. Those with lived experience have fought to change exclusionary research study models and reduce the many barriers to access.

Solve CEO Emily Taylor hosts Sabrina Poirier (co-founder of the ICanCME Research Network) and Dr. David Putrino (Department of Rehabilitation and Human Performance at the Icahn School of Medicine at Mount Sinai in New York City) to discuss how patients are working with researchers to increase research accessibility from concept to real-world execution.
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Severe ME/CFS Research: Removing Barriers to Access (session 4)


Edited to add two links:

Full transcript

Powerpoint slide deck
 
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https://solvecfs.org/the-infection-...ci-community-resource-guide-is-now-available/

The Infection-Associated Chronic Conditions Initiative’s (IACCI) Community Resource Guide is Now Available

In 2023, the Long COVID Alliance (co-founded by Solve M.E.) established a new Infection Associated Chronic Conditions Patient Advocacy Coalition (IACC PAC)using $77,000 in grant funding through the CDC Foundation’s Infection-Associated Chronic Conditions Understanding and Engagement (ICUE) program.

The Coalition brought together patient advocacy groups, medical experts, and community-based organizations working on infection-associated chronic conditions to discuss common objectives among attending organizations and to identify IACC community needs that would benefit from collaboration across organizations.

Together, we’ve engaged with policymakers, supported critical research efforts, and brought much-needed attention to the chronic illness community. The foundation laid by each of these organizations and individuals has enabled the IACC Initiative to take shape and to be positioned for lasting impact. Moving forward, we are committed to continuing this work, expanding research efforts, and ensuring that infection-associated chronic conditions receive the recognition, funding, and comprehensive care they deserve.

To that end, we’re pleased to announce that our community-sourced IACC Resource Guide is now available.
Read it here.

We are so proud to have worked with CDC, LCA partners, and our community to develop the first IACC resource guide. We hope many more soon follow with additional resources for patients!

This collective endeavor follows our series of workshops on the needs and priorities of the infection-associated chronic conditions patient community, by the IACCPAC – a part of the IACC Initiative, led by The Long Covid Alliance, Solve M.E., COVID-19 Longhauler Advocacy Project, and Patient-Led Research Collaborative, with support from the CDC Foundation through the Infection Initiated Chronic Conditions Understanding and Engagement (ICUE).

As the culmination of strategic collaboration between IACC stakeholders, we hope that this resource guide helps to strengthen support for individuals experiencing IACCs. We are so extremely proud of how our community has come together to gather expertise, recommendations, and resources that individuals and families can utilize.

The Resource Guide includes disease-specific patient advocacy organizations, as well as information on specialists, pertinent research, and support services. Our guide is a living document, and we encourage you to share your own preferential resources and insights to continue to help members of our community. We also extend our heartfelt thanks to the advocates and experts who dedicated their time and knowledge in order to enrich our guide.

For more information about the IACC Initiative, or to learn how you can help address the needs of people living with infection-associated chronic conditions, please email: contact@iaccinitiative.org.
 
Solve M.E. Advocacy Week 2025 (USA)
June 23 - 27, 2025
Solve ME said:
Advocacy Week is a nationwide advocacy effort to connect people with ME/CFS and associated conditions; scientists; clinicians, and caregivers to share their unique stories with Congress. Our ultimate goal is to make these conditions widely understood, diagnosable, and treatable.

There will be actions for every energy level and ability to join, from social media posts to virtual meetings with congressional leaders. We will have levels of messaging tailored to beginning, intermediate, and experienced advocates.
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This year’s Advocacy Week is 100% virtual! You can participate from home, making it easier than ever to engage with your representatives and advocate for change.

Schedule:

Monday, June 23rd: Virtual Meet-Ups: Connect With Your Team!

Tuesday, June 24th: Senate Education Day

Wednesday, June 25th: Social Media Day

Thursday, June 26th: House Education Day

Friday, June 27th: EmpowerME
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Online training sessions will be available in May and June.

Registration required, deadline is May 12:

https://lobbydayregistration.wufoo.com/forms/m1m4lhqe1sjot7j/
 
Register today for our April 29 (3 pm PT / 6 pm ET) webinar: Investigating Immune Dysfunction and T-Cell Exhaustion via Single Cell Immune Profiling in ME/CFS and Long COVID.

Join us for a webinar on exciting new research on the immune system in ME/CFS and Long COVID. Two research labs are working together to study how immune cells behave differently in people with these illnesses.

Their goals include:

✅ Learning more about how the immune system is affected
✅ Identifying different patient subgroups
✅ Finding new ways to diagnose and treat these conditions

The Selin Lab will share findings from their study on how certain immune cells (CD8 T-cells) may be linked to ME/CFS and Long COVID symptoms—and how a nebulized antioxidant/anti-pathogen treatment was used in a case study.

Panelists include Liisa K. Selin, MD, PhD, & Anna Gil, PhD (viral immunologists from the Univ. of Massachusetts Chan Medical School), and Roshan Kumar, PhD (clinical stage global biotech company HiFiBiO Therapeutics), as well as the labs' patient representatives, Megan L. Fitzgerald, PhD, and Rivka Solomon, MS.

Join us to learn more about these discoveries!

Sign up here:
https://ow.ly/1Tih50VumPR
 
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