USA: News from Solve ME

The Fall 2023 edition of The Chronicle from Solve M.E. is now available.

Solve M.E. email said:
Our flagship research and advocacy journal, The Chronicle, has arrived! This special edition spotlights our new patient-centered data platform, Solve Together, and features some of the incredible community members and partners that made this resource possible.

We also highlight Solve's impact — made possible through your generous donations — and include letters from our leadership team, including our new President and CEO, Kristin Jacobson!

Inside you'll find:​
  • A Guide to Our New Solve Together Data Platform​
  • Building Solve Together with Lived Experience, Featuring Our Platform Architect and Lived Experience Consultant​
  • Solve Lived Experience Taskforce Partners Share Insights on Solve Together​
  • Solve's Impact and Community of Supporters​
  • Upcoming Events​
  • Letters from Leadership​
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Get the PDF version here:

https://solvecfs.org/wp-content/uploads/2023/10/Chronicle_Fall23_Final.pdf

Use this link if you want a copy of the next print edition delivered free of charge by mail to your home or business:

https://solvecfs.org/news-and-insights/subscribe-to-newsletter/
 
Webinar from Solve M.E.:

The Patient-Doctor Partnership: Optimally Treating People with Long Covid and ME/CFS Across the US

Thursday, December 7, 12:00 pm - 1:00 pm Pacific Time

https://solvecfs.org/event/the-pati...ple-with-long-covid-and-me-cfs-across-the-us/
Solve M.E. said:
Solve welcomes three medical providers who will share their experience with treating Long Covid, ME/CFS, POTS, and dysautonomia patients across rural, urban, and suburban settings.

Dr. Melanie Hoppers (co-founder and Chief Medical Officer at Physicians Quality Care, in Jackson, TN), Dr. William Pittman (co-director of the UCLA Long COVID Program), and Dr. Tiffany Walker (Principal Investigator for the Post-COVID Clinic Grady Hospital, Emory University School of Medicine) will share how integrating a broader understanding of associated post-infection diseases has informed their care, and offer insights into how patients and caregivers can best work together to create an optimal treatment experience.
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Find the time in your time zone here:
https://www.timeanddate.com/worldcl...octor+Partnership&iso=20231207T12&p1=137&ah=1

Registration link:

https://us02web.zoom.us/webinar/register/WN_LDNj6Q7bT9uj38YPfSrUpw#/registration
 
December Advocacy Cafe

"A Virtual Hour of Discussion, Recap and Connection"

December 29 at 12 noon Pacific / 3 PM Eastern

https://solvecfs.org/event/december-advocacy-cafe/
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. The next session will take place 12/29 at 12 pm PT/ 3 pm ET.

Please note — no registration is required.
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Find the time in your time zone here:

https://www.timeanddate.com/worldcl...ber+Advocacy+Cafe&iso=20231229T12&p1=137&ah=1
 
Solve M.E. Webinar:

Changes in the Gut Microbiome in ME/CFS and Long Covid

Monday, Jan. 22
1 PM Pacific / 4 PM Eastern

https://solvecfs.org/event/changes-in-the-gut-microbiome-in-me-cfs-and-long-covid/

Solve M.E. said:
Solve Ramsay Research Grant winner David Esteban, PhD, (Assoc. Professor of Biology, Vassar) will discuss ongoing work in his lab determining whether there is a link between changes in the gut microbiome and disease in ME/CFS and Long Covid.

The collection of bacteria in the gut, known as the gut microbiome, produces many small molecules that can affect the immune, nervous, and gastrointestinal systems. In several other diseases, microbial products of the amino acid tryptophan have been linked to symptoms or disease severity.

In this webinar, Esteban will discuss his work to measure the amounts and activity of these important molecules in people with ME/CFS and Long Covid. Recruitment for Dr. Esteban’s study is being conducted on the Solve Together platform, for more information or to join, visit SolveTogether.org or email us at research@solvecfs.org.
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Find the time in your time zone here:

https://www.timeanddate.com/worldclock/fixedtime.html?msg=Changes+in+the+Gut+Microbiome+in+ME/CFS+and+Long+Covid&iso=20240122T13&p1=224&ah=1
 
Solve: A #GlobalVoiceForME on World ME Day 2024

https://solvecfs.org/solve-a-globalvoiceforme-on-world-me-day-2024/
Solve M.E. said:
As we approach World ME Day on May 12th, 2024, Solve joins the global community in shedding light on the pressing issues surrounding Myalgic Encephalomyelitis (ME). This significant day coincides with the 55th anniversary since the World Health Organization (WHO) officially acknowledged ME in their International Classification of Diseases, underscoring the critical need to address this global health crisis.

In recent times, the landscape of ME has undergone a transformation, with COVID-19 emerging as the most common trigger for this chronic illness. The intersection of these two health challenges has resulted in a significant increase in the number of people affected by ME. Today, we estimate that more than 55 million individuals worldwide are living with the debilitating effects of this condition. Amidst these escalating numbers, Solve stands alongside our peers in the World ME Alliance — of which Solve is a proud founding member. This unified network of organizations across the globe seeks to collectively amplify support for initiatives that address the multifaceted impact of ME on individuals and communities alike.
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Solve M.E. said:
Taking action for World ME Day 2024:

In the coming months, Solve and the World ME Alliance will be announcing actions you can take to create change on May 12th, 2024.

One of our big focuses will be building relationships with health ministries of different nations, as they have the power to advocate with the World Health Organization. Your involvement will be vital to this effort, so keep your eyes peeled for more info coming soon.
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A recording from the Solve M.E. February 28 webinar "Hydrogen Water Testing for ME/CFS: A New Clinical Trial" is now available.
About an hour long (I have not watched it).


YouTube summary said:
Free radicals are molecules with one or more unpaired electrons in their outer shells. They tear holes in cell membranes, releasing an overabundance of even more free radicals and preventing proper cell functionality.

Antioxidants are molecules stable enough to donate an electron to a rampaging free radical and neutralize it, containing the damage it can cause.

Some studies indicate that the antioxidant systems of ME/CFS patients cannot effectively contain an abundance of free radicals, causing inflammation, mitochondria and blood vessel damage, and other symptoms of ME/CFS.

Hydrogen-enriched water is an effective antioxidant with the power to absorb free radicals.

In this webinar, Fred Friedberg, PhD, (Research Professor at Stony Brook University School of Medicine), will discuss his current ongoing clinical trial “Hydrogen Water Dosing Study for ME/CFS,” designed to explore the potential benefit of the over-the-counter (OTC) supplement hydrogen water, for the symptoms of ME/CFS.

Recruitment for Dr. Friedberg’s study is being conducted on the Solve Together platform. For more information or to join, visit SolveTogether.org or email us at research@solvecfs.org.

If you are already a Solve Together participant, you will automatically be considered in eligibility screening for this and all future studies and should hear from us within two weeks of each study announcement.
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Solve ME has announced four training sessions for Advocacy Week 2024

Note: Registration for Advocacy Week closes March 15th

Registration deadline extended to midnight on Monday, March 18!

Registration is required for congressional meetings held during Advocacy Week but not for individual training sessions.

What is Advocacy Week?
Solve ME said:
Advocacy Week 2024 is scheduled for April 15th to April 19th, 2024.

Advocacy Week is a nationwide advocacy effort to connect people with ME/CFS, Long Covid, and associated conditions; scientists; clinicians, and caregivers to share their unique stories with Congress. Our ultimate goal is to make ME/CFS, Long Covid, and post-infection diseases widely understood, diagnosable, and treatable.
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Training sessions are scheduled for Mondays at 4 PM Pacific / 7 PM Eastern
  • March 18: Training 1 – How to tell your story
  • March 25: Training 2 – What to expect in your meetings
  • April 1: Training 3 – What we are advocating for
  • April 8: Training 4 – How to use the Advocacy Associates App
Announcement here: https://solvecfs.org/event/advocacy-week-2024-training-session-1-how-to-tell-your-story/

Zoom link for training sessions: https://us02web.zoom.us/j/88455730827#success
 
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Note: This event is listed on the Solve ME event calendar with the wrong date! (It shows April 2 which has already passed) But the registration link has the correct date, April 24.

Webinar: Comparing immunological signatures between Long Covid and ME/CFS

April 24 at 12:30 pm Pacific / 3:30 pm Eastern

Registration link:

https://us02web.zoom.us/webinar/register/WN_GY4b1ezER7udraoDjGTD8g#/registration

Putrino webinar April 24 2024.png
Description from registration link said:
Dr. David Putrino and Dr. Jamie Wood, of the Icahn School of Medicine at Mount Sinai, have conducted several landmark studies on Long Covid. Their extensive research has led them to suspect that the immune responses of people with Long Covid differ in important ways from the immune responses of other people. If so, these differences (called immunological signatures) may explain why some people develop Long Covid symptoms and hopefully lead to the development of new therapies.

To find this information, the team uses a wide range of cutting-edge technologies to compare blood and saliva samples from people with Long Covid with those from healthy participants.

Because both Long Covid and ME/CFS are post-acute infection syndromes (and have similar symptoms), the team also wants help from people with ME/CFS to find immunological signatures for ME/CFS. Similarities between the ME/CFS and Long Covid signatures may lead to therapeutic options for anyone with a post-acute-infection syndrome.

In this webinar, Dr. Putrino and Dr. Wood will explain their ongoing research and the current study, which has high potential to generate new knowledge and to help people diagnosed with ME/CFS or other post-acute infection syndromes.

The Solve Together Real-World Data Platform (ST-RWD) will soon begin to refer consented ST-RWD users who have relevant profiles to be considered for participating in this study that compares ME/CFS and Long Covid.

If you are interested, please consider joining ST-RWD via https://solvecfs.org/research/solve-together/ by April 30, 2024. You can also email us at research@solvecfs.org if you have any questions.
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The link below is to the Solve ME event calendar. There is a typo so it mistakenly says this event has passed. But the rest of the information is correct.

https://solvecfs.org/event/webinar-comparing-immunological-signatures-between-long-covid-and-me-cfs/

EDIT:
Find the time in your time zone here:

https://www.timeanddate.com/worldcl...ovid+and+ME/CFS&iso=20240424T1230&p1=224&ah=1
 
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Email from Solve ME:

Solve M.E. Announces Emily Taylor as New President and CEO and Publication of New White Paper
Solve ME said:
Energy-Saving Summary

• Solve M.E. is pleased to announce that Emily Taylor, Vice President of Advocacy and Engagement, has been appointed as President and CEO.

• Emily has been a key member of Solve’s leadership team for more than eight years and played a critical role in securing $1.25 billion RECOVER NIH funding for Long Covid research.

• Emily is a co-author of Solve’s latest white paper, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH," which outlines the economic burden caused by IACCIs and the lack of appropriate NIH funding to meet the needs of those who suffer.
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More info about the white paper:
Solve also announces the publication of its newest white paper, “A Home for Infection-Associated Chronic Conditions and Illnesses (IACCIs) at NIH."

Co-written by Solve President and CEO Emily Taylor, accomplished journalist and filmmaker Ryan Prior, and science and policy researcher Melissa Smallwood, the white paper outlines the economic burden caused by IACCIs and the lack of appropriate NIH funding to meet the needs of those who suffer.

The co-authors recommend possible solutions to this problem, which includes the establishment of a dedicated IACCI research entity at NIH.
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Link to Solve ME article about the white paper:

https://solvecfs.org/solve-releases...ronic-conditions-and-illnesses-iaccis-at-nih/
 
I have no idea what Janet Dafoe is talking about in her tweets to Solve ME/CFS saying that ME/CFS isn't mentioned. ME/CFS is mentioned. It's not just about Long COVID.

The letter to email Members of Congress says:
https://p2a.co/tE8DZk8
Educate your Members of Congress about a "HOME" for IACCIs at NIH
Infection-associated chronic illnesses and conditions are a public health crisis!
Diseases like ME/CFS, Long COVID, POTS and other forms of Dysautonomia need your help!
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This link in the Solve ME/CFS tweet goes to their White Paper that says:
https://solvecfs.org/solve-releases...ronic-conditions-and-illnesses-iaccis-at-nih/
IACCIs are a growing, but under-researched, health and economic burden. These illnesses – such as ME/CFS, Long COVID/PASC, POTS/Dysautonomia, fibromyalgia, persistent Lyme disease, MCAS, and more – severely impact patients’ quality of life and ability to work and can often cause a lifetime of disability. Following COVID, major IACCIs are now estimated to impact up to 73.3 million Americans. Research into IACCIs is severely underfunded relative to disease burden, and is decades behind illnesses with similar levels of severity due to their nature as complex, multi-systemic illnesses that aren’t clearly within the domain of any existing medical specialty.
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Laurie P said:
I have no idea what Janet Dafoe is talking about in her tweets to Solve ME/CFS saying that ME/CFS isn't mentioned. ME/CFS is mentioned. It's not just about Long COVID.

The letter to email Members of Congress says:
https://p2a.co/tE8DZk8



This link in the Solve ME/CFS tweet goes to their White Paper that says:
https://solvecfs.org/solve-releases...ronic-conditions-and-illnesses-iaccis-at-nih/
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Yes Janet did exaggerate a lot. I think there is still some fair criticism though which is that not all cases of ME are post infectious and this classification definitely neglects those that aren’t. And more generally, for an association called “solve ME” they spend an awful lot of resources and time focusing on related illnesses (Long covid, lyme, POTS and the like) and in that sense their name may be a little misleading/inaccurate. Obviously they have and are doing an awful lot of amazing work too, any criticism that fits into a tweet will likely fail to capture anywhere near the complexity of the situation.
 
Laurie P said:
My concern is that people who would otherwise participate in advocacy and email their Members of Congress may now not do so because of the misinformation that Janet Dafoe is spreading. Has anyone called her out on Twitter?
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I didn’t see anyone calling her out. Just some long covid people agreeing with her because they believe that ME and LC are completely different (the viral persistance ideologes).
 
Webinar from Solve M.E. -

Covid Vaccinations: Efficacy, Options, and Special Considerations for Chronic Illness

Tuesday, July 2
1 PM Pacific / 4 PM Eastern

https://solvecfs.org/event/covid-va...d-special-considerations-for-chronic-illness/
Solve M.E. said:
People with chronic illnesses often have compromised immune systems or ongoing health issues that can affect how they respond to vaccines. The effectiveness and potential side effects of vaccines may differ for these individuals compared to the general population. Individuals with chronic illnesses may be at a higher risk of experiencing adverse reactions to vaccines. This can make them hesitant to receive the vaccine and necessitates a careful evaluation of risks and benefits.

To help inform our community, Solve is hosting the free webinar, “Covid Vaccinations: Efficacy, Options, and Special Considerations for Chronic Illness.” Solve Chief President & CEO Emily Taylor and Solve Chief Scientific Officer H. Tim Hsiao, PhD. will talk to infectious disease epidemiologist and science communicator Jessica Malaty Rivera, M.S. (Chair, Committee of Scientific and Medical Advisors, Vaccinate Your Family) and distinguished physician Melanie Hoppers, M.D. (Medical Provider, Bateman Horne Center) about the complex issues surrounding Covid vaccination for those with ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses.

This comprehensive session will delve into:

• The effectiveness of Covid vaccinations in preventing Long Covid and other long-term symptoms.
• An overview of the different types of Covid vaccines currently available.
• Insights into how vaccine manufacturers address the special needs of individuals with chronic illnesses during vaccine development.
• Expert advice on how people with ME/CFS, Long Covid, and other infection-associated chronic conditions can make informed decisions about Covid vaccination.

Our experts will provide valuable information, answer your questions, and offer practical guidance tailored to those with chronic health conditions. Don’t miss this opportunity to gain clarity and confidence in your vaccination choices.

This event is funded in part by an educational grant from Novavax.
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Register here:

https://us02web.zoom.us/webinar/register/WN_-vcECdI4QImGHEJpSJOo-Q

(registration link allows you to select your time zone)
 
Yann04 said:
Not sure if this fits into the thread but Janet Dafoe sent some harsh tweets about solve ME a couple days ago.
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I'm a bit late to this, but the Solve paper is about getting a home for infection-associated chronic conditions. Of course Long covid should be focussed on - it is new and is having big impact. It's a reason for change. To a lesser extent, Lyme disease is spreading over the US - again, that's news, and people are and should be scared long Lyme will happen to them.

I don't agree with everything Solve does, but to not acknowledge the fact that politics is the game that is being played and support Solve in playing it seems short-sighted.
 
From the Solve ME mailing list:

"The Summer 2024 Edition of The Chronicle is Available Online Now!

We're excited to share the newest edition of our flagship research and advocacy journal, The Chronicle!"

Inside you'll find:
  • Our Visit to Yale to Honor Immunologist Dr. Akiko Iwasaki
  • Solve's 2024 Appropriations Asks
  • Highlights from Advocacy Week
  • Updates on Solve-Funded Research
  • Our Key Takeaways From the NIH Intramural ME/CFS Clinical Study
  • Solve Together Enrollment for Pioneering Clinical Studies
  • How to Make a Difference with DIY Fundraising
  • Study Using Solve Real-World Data Examines Joint Hypermobility
  • Reflections from Solve President & CEO Emily Taylor
And more!"
​
https://solvecfs.org/wp-content/uploads/2024/06/SolveChronicleSummer2024.pdf
 
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