Solve ME/CFS Chronicle

[Pyrrhus]

Lots of great info in the Autumn 2020 newsletter from Solve ME/CFS!

https://solvecfs.org/wp-content/uploads/2020/11/Chronicle_102320_epub.pdf

Excerpt:

OVED AMITAY has always been interested in scientific discovery.

Long before his days of working at various biotechnology companies, Oved could be found distilling chemicals in a makeshift lab at his parents’ home—the remnants of failed experiments still decorating the ceiling.

Oved now leads Solve M.E. as President and CEO, joining in June 2020 during a period of transition both within the organization, and across the country as the world grappled with the devastating coronavirus pandemic.

@Emily Taylor

 

[Pyrrhus]

And now it's time for the Winter newsletter!

https://solvecfs.org/wp-content/uploads/2020/12/Research_1st_winter_epub.pdf

Excerpt:

LEVERAGING YOU + ME TO UNDERSTAND LONG-COVID

Another new development has been the launch of our long-COVID cohort. It’s become evident that many people who get COVID-19 are not fully recovering. To better understand why, we have expanded our registry community to include those with long-COVID. This is also an opportunity to understand the similarities and differences between ME/CFS and long-COVID, and to learn why some people are susceptible to long term effects after a viral infection.

If you or someone you know has had COVID-19, please encourage them to sign up at youandmeCOVID.com. We are looking for individuals who do and do not have long term effects.

@Emily Taylor

 

[Pyrrhus]

And now it's time for the Spring newsletter!

https://solvecfs.org/wp-content/uploads/2021/04/Chronicle_Spring_2021.pdf

Excerpt:

Victory! Congress Heeds Call to Fund Post-Viral Research

In December 2020, Solve M.E. helped secure one of the biggest congressional investments in postinfectious disease research ever — a whopping $1.15 billion for Long COVID research, diagnostics, and clinical trials at the National Institutes of Health (NIH).

One of our main focuses every year is increasing the federal spending dollars dedicated to research for myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome, or ME/CFS. Early scientific evidence made clear that ME/CFS and Post-Acute Sequelae of SARS-COV-2 infection (PASC) or “Post or Long COVID-19 syndrome” have a lot in common, including symptoms, patient experience, and poor medical education. People with “Long COVID” (the patient-preferred terminology) need help and have turned to the ME/CFS community to find answers. Our federal affairs team quickly recognized that the ME/CFS community and the Long COVID community can work together to call for more federal funding for overlapping areas of research.

 

[Pyrrhus]

Fall newsletter 2021:
https://solvecfs.org/wp-content/uploads/2021/11/Chronicle_Fall_2021.pdf

The You + ME Registry, one of our strategic initiatives, aims to create the world’s largest ME/CFS and Long Covid database and is a vital component of our commitment to identifying diagnostics and treatments.

YEAR 1 ACCOMPLISHMENTS
In only one year:
• We grew to nearly 5,000 members and are on track to reach 10,000 by mid 2022, creating a more and more robust resource for researchers.
• We gathered more than 2.4 million data points, more than doubling the number in four months.
• We incorporated Long Covid data to enhance our understanding of ME/CFS.
• We forged partnerships with UCLA, DecodeME and Action for ME.
• We collaborated with Emerge Australia in a landmark effort to establish the first ME/CFS patient registry Down Under.
• We deployed You + ME data to study a potential ME/CFS diagnostic test and for studies supported by our new Stupski Awards.

We marked the Registry’s one-year anniversary throughout September by celebrating some accomplishments, announcing the 2021 Ramsay Researchers, reaching a milestone and sharing a few of our 2022 initiatives.
[...]
OUR 2021 RAMSAY RESEARCHERS
Our anniversary celebration also included the announcement of our 2021 Ramsay Researchers. You can find details in “2021 Ramsay Researchers Announced” on page 6.

 

[Pyrrhus]

Summer newsletter 2022:
https://solvecfs.org/wp-content/uploads/2022/08/Chronicle_Summer_2022.pdf

On May 12, World ME Day, we launched the first episode of Long Haul Voices: Living with Long Covid and ME/CFS, a mini-series that amplifies the experiences of individuals with Long Covid and ME/CFS, the experts devoted to improving their care, and the challenges surrounding these largely invisible, poorly-understood diseases that affect a rapidly growing population.
[...]
The Solve Long Covid Initiative represents a collection of new and expanded programs in research, advocacy, and education that will improve outcomes for the millions suffering from post-infection diseases. Based on more than 30 years of research and advocacy experience advancing the understanding of post-infection diseases, the Solve Long Covid Initiative takes a strategic approach to integrating pre-pandemic and post-pandemic knowledge and community insights. Our work in the post-infection disease space has allowed us to create connections and build partnerships with researchers, clinicians, patients, government, and industry leaders.
[...]
Each year during Advocacy Month, we host our hallmark EmPOWER M.E. roundtable, during which patient advocates, professionals, and scientists share their expertise on topics relevant to the quality of life for people with ME/CFS, Long Covid, and their caregivers.