USA: News from Solve ME

From a Solve email:

This week, Solve M.E. invited members of the press to a special event announcing the release of our new whitepaper, Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost.

The event was moderated by Megan Greene (Senior Fellow at Harvard Kennedy School; Global Chief Economist at Kroll Institute) and included panelists Oved Amitay (Solve M.E. CEO), David Kotok (Chairman and Chief Investment Officer, Cumberland Advisors), and whitepaper co-authors Emily Taylor (Solve M.E. VP of Advocacy and Engagement), Philippa Dunne (Project Manager, Adroit Data and Insight), and Melissa Smallwood (Graduate Student, Arizona State University: School for the Future of Innovation in Society).

Our panel discussed key findings in the whitepaper, as well as the financial, social, and emotional impact of Long Covid and post-infection illnesses. We also covered the current challenges faced by workplaces and communities, and what is needed moving forward to provide adequate support.

Watch a video of the event here.

We co-authored this whitepaper to fill a void; to provide a preliminary analysis of a looming public health crisis. It is not a final product, but rather an open invitation for others to use their own data and skillsets to better understand the impact of Long Covid so the true scope of this mass disabling event can be addressed.

Long Covid Impact on Adult Americans: Early Indicators Estimating Prevalence and Cost includes statistical breakdowns for all 50 states, plus national figures. Of note:

• 22 million U.S. adults are living with Long Covid (LC) – close to 7% of the population.
• 7 million are experiencing Disabling Long Covid (DLC) – 2.3% of the population.
• As of January 2022, the cumulative cost of LC is estimated at more than $386 billion. (This estimate includes lost wages, lost savings, and medical expenses incurred by individuals. It does not include costs incurred by businesses or government agencies.)
• California has the highest number of cases of all 50 states, with more than 2.4 millionLC cases and 817,000 DLC cases. Cumulative costs are estimated at $43.2 billion.

 

Details on the Solve's Ramsay Research Grant program for 2022 posted here, Solve ME: Ramsay Research Grant Program, applications open April 9 – May 23, 2022

 

I have not watched the video from this event (watching videos is harder for me than reading) so I can't comment on that.

But I do recommend at least skimming the first few sections of the Solve ME white paper on the impact of Long Covid:

https://solvecfs.org/wp-content/uploads/2022/04/Long_Covid_Impact_Paper.pdf

I thought I'd share a couple quotes (extra line breaks added to make it easier to read).

The first quote tries to put Long Covid in context. And it reminds folks that a rise in cases of ME/CFS was predicted back in 2020. As we all know, many groups and individuals predicted a rise in ME cases, not just the Solve ME group.

These two quotes are from the "SUMMARY OF KEY FINDINGS" section:

 

Long Haul Voices Gets Exclusive Premiere on The Disorder Channel!

"Solve M.E. has produced Long Haul Voices, a mini-series created in partnership with Unfixed Media Productions that amplifies the experiences of individuals with ME/CFS and Long Covid, the experts devoted to improving their care, and the challenges surrounding these largely invisible, post-infection diseases that affect a rapidly growing population."

https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

 

Solve M.E. Partners with Global Interdependence Center for Long Covid Series and NYC Conference on May 19

"As part of our work via the Solve Long Covid Initiative, Solve M.E. has partnered with the Global Interdependence Center to launch a year-long conference series, “Long Covid: Research, Policy, and Economic Impact.”

We hope you will also join us for the signature event of this series, a hybrid in-person and virtual conference in New York City on Thursday, May 19, 2022.

Learn more and register here."

https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

 

New Webinars!

Dr. Jarred Younger Presents on ME/CFS and Brain Inflammation on June 23

Dr. Peter Rowe Presents On Long Covid and Children on June 7

Francisco Westermeier Presents on Nitric Oxide (NO) and ME/CFS on June 13

Further details and links to registration, https://go.solvecfs.org/webmail/192...acf39456eef77182e5a5b928514a03a2c9a7fa8ca8530

 

"We're hiring! Check out the listings for Head of Research and Collaborations and for Chief Operating Officer at Solve M.E. solvecfs.org/about-us/join-…"

 

I noticed I've not seen Sadie Whittaker in any Solve ME tweets or webcasts for a while which led me to the above quote. She is not mentioned as being on staff for either Solve ME or the You + Me Registry on their web pages.

For those wondering, and according to her LinkedIn, she left Solve ME in October 2021 and is now Chief External Affairs Officer for Cellevolve.
https://www.linkedin.com/in/sadie-whittaker-7939a75/

I couldn't see whether or not she still holds the role of "Chair of You + ME Innovation Council". Does anyone know?

 

From an Solve M.E. email, received today:

Link to the recording:

https://www.youtube.com/watch?v=S9z99y1YjWg

 

From an Solve M.E. email, received today:

Link to the recording:

https://www.youtube.com/watch?v=iTc3vWJ2ySM

 

From a Solve email.

Solve M.E. spearheads the first nationwide Long Covid PSA campaign
I am excited to share with you a new program being introduced by Solve M.E. and invite you to play an important part in its roll out.

Solve M.E. is on the verge of launching the first of its kind national TV and Radio Public Service Announcement (PSA) campaign about Long Covid entitled “How Long?”. The goal of this campaign is to broaden awareness of Long Covid (ME/CFS and other post-infection diseases), create empathy for those who suffer its devastating impact, and highlight the need for research to better understand it in order to adequately help patients. The campaign will feature :60, :30 and :15 TV and Radio ads in English and in Spanish. You can view the TV PSA here.

We created this campaign in collaboration with the Entertainment Industry Foundation (EIF), a unique non-profit that leverages the powerful voice of the entertainment industry to develop and enhance programs on the local, national and global level that facilitate positive social change. Through this partnership the campaign is expected to be supported by over $20 million in donated airtime. The EIF has been instrumental in developing and promoting many important healthcare initiatives, such as Stand Up to Cancer.

It is important for those in the ME/CFS and post-infection disease communities to know that while these first ads focus on Long Covid, the “How Long?" campaign will evolve to become an umbrella effort that includes these related diseases. We want “How Long?” to become a battle cry that focuses attention on the urgent need for research into all of these little understood and under-funded illnesses.

Like you, we are dedicated to finding diagnostics, treatments and cures for post-infection diseases like ME/CFS and Long Covid. To that end, we encourage you to amplify the message of this campaign – that there is an urgent need for research now. By posting this PSA on your social media platforms and distributing it within your communities, you can help us make "How Long?" go viral.

To the extent that we can extend the reach of this campaign, we will be helping patients, caregivers, clinicians and researchers in their quest to find answers that can help end the devastating impact of these diseases. Together we can help alleviate the suffering of so many.

On social media

Code:

https://www.facebook.com/SolveMECFSInitiative/videos/730086488091525/

 

Exciting Solve are doing this big campaign with proper media budget.
As for the creative, like the “how long?” message but really wish they had used real people instead of actors — would have hit much harder.

 

I'm happy they made this PSA, but I do wish there was at least one mention of ME/CFS in the video (eg, "many Long Covid patients meet the diagnostic criteria for ME/CFS...").

FYI, the link in the PSA - solvelongcovid.org - redirects to https://solvecfs.org/solve-long-covid/

 

Ohh, I'm excited about this.

 

I'm replying to my own comment to add that Solve M.E. obviously has a longer term strategy with this PSA series. They did mention this in their announcement:

So I should probably be patient and wait for the whole thing to play out.

Maybe they decided that unknown terms in the first PSA would make people tune out? I often forget that unlike illnesses like MS, ALS and AIDS the term ME/CFS is not recognized at all by a lot of folks. Not sure if this decision was made based solely on discussion by their team, or if they had focus groups, or polling, or what.

At any rate, I'm trying to reserve judgment until a few more of the videos in this PSA series have been released.

 

The summer 2022 edition of the Solve M.E. Chronicle is now available.

Link to PDF: https://solvecfs.org/wp-content/uploads/2022/08/Chronicle_Summer_2022.pdf

 

Probably one of the most useful threads for occupational therapy is the retail therapy thread on phoenix rising were people have been sharing ways in which they do tasks for less energy. I have been cleaning my bathroom with a drill and brush attachment for example which is a lot less energy than scrubbing. Others talk about using a stool in the shower so they can shower sitting down, others wetwipes for bathing in bed and various ways to make meals for less energy etc etc. These sorts of occupational changes can improve things a little bit, but honestly its not going to make things much more accessible with such extreme energy limitations.