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.
 
Andy said:
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.
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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.
Long Covid Impact on Adult Americans said:
Post-infection illness is not new. It is a documented, yet still misunderstood medical and research challenge.

Two years ago, the Solve ME/CFS Initiative (Solve M.E.) estimated the potential impact and cost of the inevitable post-infection chronic illnesses expected to follow just behind the COVID-19 pandemic.

Drawing from the collected clinical and research knowledge of ME/CFS, Solve M.E. suggested that 3.5 million Americans may never return to health, resulting in $48 billion in economic cost.

Other Post-infection illnesses that exhibit many of the same symptoms as Long Covid include; myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), postural orthostatic tachycardia syndrome (POTS) and other forms of dysautonomia, and mast cell activation syndrome (MCAS). Several studies have found biological and clinical similarities between ME/CFS, POTS, and Long Covid.

The Government Accountability office also recently concluded that between 7.7–23 million Americans have Long Covid.
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These two quotes are from the "SUMMARY OF KEY FINDINGS" section:
Long Covid Impact on Adult Americans said:
The Solve Long Covid Initiative models estimate that through January 31, 2022, the COVID-19 pandemic has potentially caused, at minimum, 22 million cases of Long Covid, with a higher estimate model suggesting more than 43 million cases.

This caseload includes 7 to 13% of the total population of the United States. Of these cases, 7 to 14 million (2–4% of the total U.S. population) are expected to result in long-term disability — placing individuals at risk of lifelong complex health problems and economic ruin from health care costs, unemployment, denied benefits, eviction, and homelessness.
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Long Covid Impact on Adult Americans said:
The widespread disability and economic loss caused by Long Covid has inflicted a significant cost on the United States and its citizens.

When the estimated cost of healthcare expenses, lost savings, and lost income are combined for the full estimated long-hauler population, it is estimated that disability caused by Long Covid has cost over $386 billion since the pandemic began until January 31, 2022.

However, this statistic only captures the financial burden currently experienced by individuals—it does not begin to assess the long-term and indirect effects of this disease on businesses, communities, and federal, state, and local budgets.

The disability caused by Long Covid greatly expands the pool of people experiencing long-term complex disability from illnesses such as ME/CFS, POTS and other forms of dysautonomia, and other post-infection illnesses.

Prior to the pandemic, it is estimated that 2.5 million Americans live with ME/CFS, creating a $51 billion annual cost.

The number of people experiencing disability from Disabling Long Covid (7–14 million) could be 3–5 times the total number of pre-pandemic ME/CFS patients—with over 7 times the cost.
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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
 
Andy said:
• Sadie Whittaker, our chief scientific officer, will transition to found and chair our You + ME Innovation Council as of January 2022. The Council is a key component of our efforts to strengthen and expand our research capacity. Sadie will share more about it soon and we’ll celebrate her many contributions to our work in the coming months.
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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:
Solve ME email said:
Recording Available!
New Hope for Diagnosing and Treating Post-Infection Illnesses:
Lessons Learned from HIV/AIDS

In case you missed it, the recording from New Hope for Diagnosing and Treating Post-Infection Illnesses: Lessons Learned from HIV/AIDS is now available to view online. Drs. Steven Deeks and David Hardy (Solve M.E. Medical Advisor) — two long-time researchers, clinicians, and veterans of the battle against HIV/AIDS, discussed how current studies on Long Covid, informed by knowledge gained in other fields, could help develop improved ways to diagnose and treat the broader challenge of post-infection illnesses, such as ME/CFS.

In their conversation, Drs. Deeks and Hardy discussed the emerging scientific and medical findings, reflected on their HIV/AIDS experience and the importance of patient engagement in research and advocacy, and discussed the prospects for treatments and therapies.
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Link to the recording:
 
From an Solve M.E. email, received today:
Solve ME email said:
Recording Available!
Nuno Sepúlveda, PhD presents
Is There a Herpesviruses-Related Antibody Signature In Patients With ME/CFS?

Many patients with ME/CFS experience common herpesviruses infections at their disease onset. Alternatively, others experience reactivation of the same infections during the disease course. These facts suggest the existence of a disease-specific antibody signature related to these viruses. However, current evidence is conflicting about this signature due to the heterogeneous nature of the disease, the use of distinct lab assays, and small sample sizes, among other reasons.

In this webinar, Ramsay Grant researcher Nuno Sepúlveda, PhD, presented new findings on this signature, which could form the basis for developing a future diagnostic tool for ME/CFS patients with an infectious trigger.
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Link to the recording:
 
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
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Code: 
https://www.facebook.com/SolveMECFSInitiative/videos/730086488091525/
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ahimsa said:
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...").
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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:
Solve M.E. said:
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.
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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
Solve M.E. email said:
The electronic version of our flagship research and advocacy journal, The Chronicle, has arrived! It includes a celebration of our Long Haul Voices: Living with Long Covid and ME/CFS video series, insights from this year’s EmPOWER M.E. roundtable, several advocacy victories and more!

The Chronicle not only features recent initiatives and developments at Solve M.E. but also serves as a way to highlight standout members of the community. In this edition, we showcase the story of Larry Baldwin, a father and former surgeon with ME/CFS, and his daughter, Nicole Baldwin, a neurology resident who is already conducting and publishing ME/CFS research. The Baldwins are long-time supporters of Solve M.E., and we are proud to fight for them and the millions of other families affected by post-infection diseases.

Featured articles include:
  • Solve M.E.’s Long Haul Voices Video Series
  • ME/CFS and Long Covid: Seizing the Moment
  • Creating Change: Local & State Advocacy
  • CDMRP Announces $1.6M for ME/CFS Research
  • An Overview of Our Whirlwind Advocacy Month
  • An ME/CFS ICD Code Tracking Victory
  • How the Ramsay Grants Empower Researchers
  • A Family Tackles ME/CFS
  • Meet Development Director Joe Komsky
  • Reflections from President and CEO Oved Amitay
To have the next print edition delivered free of charge by mail to your home or business, click here
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From an email:



Register Today for September 15 Webinar
OT: The Role of Occupational Therapy in
Care for ME/CFS
Amy_Mooney.png

What is occupational therapy? How can it help people with ME/CFS?

Amy Mooney, MS OTR/L, will join us on September 15 at 10AM PT to share her expertise and what patients should know if they are looking for an occupational therapist (OT).

As an OT with over 20 years of experience, Amy has worked in a variety of settings: school, early intervention, home health and clinic practice. Specializing in care for individuals with chronic disease, Amy has been involved in numerous ME/CFS educational programs for medical professionals and advocacy campaigns for patients and caregivers.

Register Here


Join Our Next Advocacy Cafe Chat on September 2

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Join us Friday, September 2 at 12 pm PT for the next installment of our Advocacy Cafe series!

Click here to watch the recording of the July 29 chat.

Please note that registration is not required — join at the link below.

Click Here to Join


Solve M.E. Partners with Global Interdependence Center for Long Covid Congressional Panel on September 8
GIC_Event_Graphic.png

What are the key priorities for current and future Long Covid policy?

Join us on September 8 at 10 am PT/ 1 pm ET for a conversation with Members of Congress working on this important issue side-by-side with disease experts and patients as we explore legislative solutions.

This Congressional Panel hosted with the Global Interdependence Center will feature Congressmen Jack Bergman and Don Beyer, authors of the COVID-19 Long Hauler Act, as well a discussion of Long Covid Policy with patient, medical, and organization experts.

Learn More and Register Here


Solve M.E in the News
Long Covid Mimics Other Post-Viral Conditions — WebMD, 8.24.22

Long Covid and Chronic Fatigue Syndrome Have A Lot In Common — Bio-IT World, 8.16.22


PixelServer
 
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.
 
BrightCandle said:
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.
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We have threads on a range of such topics in the living with ME area of the forum https://www.s4me.info/forums/living-with-me-cfs-discussions.75/
 
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