USA: News from Solve ME

[Andy]

Solve have announced their latest batch of Ramsay Grant researchers.

We're excited to share the newest class of Ramsay Researchers! Since its launch, our Ramsay Research Grant Program has been successful in attracting new scientists to the fields of ME/CFS and Long Covid. Ramsay researchers have gone on to earn $8 million in follow-on funding, much of it from the National Institutes of Health (NIH). That's a 8x return on our investment in preeminent scientists and researchers driving toward treatments.

This year, one study will explore an animal model of ME/CFS which, if successful, could expedite the discovery of ME/CFS disease mechanisms and treatments. Three others are clinical trials exploring new treatments in ME/CFS and Long Covid.

"The Ramsay Grants this year reflect an intentional focus on research that gets us closer to diagnostics and treatments for ME/CFS and Long Covid. I am thrilled that we are at a point where we can support trials that deploy therapeutic interventions and study if they can meaningfully reduce symptoms in people with ME/CFS," says Solve M.E. CEO Oved Amitay. "I am also encouraged to see how ME/CFS can benefit from progress in Long Covid, as well as the potential to develop animal models, which can help translate basic research into drug development. We look forward to learning more about the progress of these exciting studies in the coming months."

Deborah Duricka, PhD | Effect of Stellate Ganglion Block on ME/CFS Symptoms and Plasma Metabolites

After observing in a previous study that blocking stellate ganglion with regional anesthesia reduced symptoms of Long Covid, Deborah Duricka, PhD, and her team will apply these findings to investigate the effect of this same block on ME/CFS symptoms and physiology. Sympathetic signals routing through the stellate ganglion from the brainstem modulate cerebral blood flow, which is associated with the severity of brain fog and fatigue in ME/CFS and POTS.

If the block is successful in reducing symptoms (including tolerance to orthostatic challenge and cognitive deficits), this study could ultimately lead to a potentially effective treatment.


Avik Roy, PhD | Targeting Atg13 in an Animal Model for ME/CFS

Dr. Avik Roy and his team are developing an animal model to explore the molecular mechanism of ME/CFS. Dr. Roy will investigate how autophagy impairment contributes to the pathogenesis of ME/CFS. His group will study if the genetic ablation of early autophagy protein ATG13 gene might display post-exertional malaise (PEM) pathology in mice.

If the study is successful, it will help to establish the link between autophagy impairment and ME/CFS pathogenesis. The animal model could identify the molecular mechanism of ME/CFS, and also has potential as an important tool for drug discovery.


Katharine Seton, PhD | Immunosenescence and Premature Aging of the Immune System in ME/CFS and the Response to Fecal Microbe Transplantation

Premature immune aging could explain immune dysfunction in ME/CFS. Dr. Katharine Seton will use Ramsay funding to investigate the link between microbial dysbiosis and immune aging and NK cell senescence in ME/CFS. This clinical trial will assess the efficacy of fecal microbe transplantation (FMT) — the transfer of stool microbes from a person with healthy colon flora to another individual for therapeutic purposes — to determine whether FMT is able to restore immune function in ME/CFS patients and whether this affects symptoms.

This is important both for understanding the role of the immune system in ME/CFS, and to understand a mechanism by which FMT could improve quality of life for people with ME/CFS.


Rob Wüst, PhD | Micro-clots, Skeletal Muscle Pain and Post-Exertional Malaise in Patients with Long Covid: From Pathophysiology to Treatment

Dr. Rob Wüst and his team will study the mechanism underlying the development of post-exertional malaise (PEM), and the relationship with the development of microclots to provide a deeper molecular understanding of skeletal muscle adaptations. The primary aim of this study is to unravel the origins of muscle pain, extreme muscle fatigue and PEM in patients with Long Covid.

In its observations of PEM, the hallmark symptom of ME/CFS, this study may have direct implications to ME/CFS, including therapeutic options such as anticoagulants.


Dana Yelin, MD MPH | Enhanced External Counterpulsation (EECP), Non-invasive Approach to Treat Long Covid Fatigue

Dr. Dana Yelin and her team will study the effects of enhanced external counter-pulsation (EECP) on Long Covid patients suffering from fatigue and examinie functional status, vascular markers and quality of life improvement following treatment. EECP is a non-invasive outpatient therapy that has been shown to improve functional status and quality of life in some groups of patients with impaired blood flow and other vascular problems.

This study builds on the use of EECP for cardiac conditions that require improved blood flow to the upper body. A similar mechanism has been documented in some people with ME/CFS. This study in Long Covid could provide additional proof of concept for ME/CFS as well.

 

[Mij]

Rob Wüst, PhD | Micro-clots, Skeletal Muscle Pain and Post-Exertional Malaise in Patients with Long Covid: From Pathophysiology to Treatment

Dr. Rob Wüst and his team will study the mechanism underlying the development of post-exertional malaise (PEM), and the relationship with the development of microclots to provide a deeper molecular understanding of skeletal muscle adaptations. The primary aim of this study is to unravel the origins of muscle pain, extreme muscle fatigue and PEM in patients with Long Covid.

In its observations of PEM, the hallmark symptom of ME/CFS, this study may have direct implications to ME/CFS, including therapeutic options such as anticoagulants.

Study Summary

Skeletal muscle-related symptoms, such as fatigue and post-exertional malaise (PEM), are hallmark symptoms of patients with long-covid and ME/CFS. PEM limits daily life activities in patients, where extreme muscle fatigue and other symptoms worsen after an acute bout of exercise. In this translational project, we will provide a better fundamental understanding of the biological aspects of skeletal muscle adaptations during PEM. The primary aim is to unravel the origins of muscle pain, extreme muscle fatigue and post-exertional malaise in patients with long-covid. For this, we perform molecular analyses on skeletal muscle biopsies and blood obtained before and after the induction of PEM.

I think they're going to discover that micro-clots does not coincide with PEM.

 

[Hutan]

Deborah Duricka, PhD | Effect of Stellate Ganglion Block on ME/CFS Symptoms and Plasma Metabolites

After observing in a previous study that blocking stellate ganglion with regional anesthesia reduced symptoms of Long Covid, Deborah Duricka, PhD, and her team will apply these findings to investigate the effect of this same block on ME/CFS symptoms and physiology. Sympathetic signals routing through the stellate ganglion from the brainstem modulate cerebral blood flow, which is associated with the severity of brain fog and fatigue in ME/CFS and POTS.

If the block is successful in reducing symptoms (including tolerance to orthostatic challenge and cognitive deficits), this study could ultimately lead to a potentially effective treatment.

Disappointing to see this. We've discussed Neuroversion in a few places on the forum, e.g. here
Stellate ganglion block reduces symptoms of Long COVID: A case series (2021) Liu et al
That company is certainly good at marketing, they were all over the IACFSME conference.

I don't think there is enough evidence to warrant SolveME's scarce funds being spent on this. Even if there was, this Neuroversion team do not have the necessary level of equipoise, or, I think, demonstrated scientific rigour to be doing the study.

We serendipitously discovered that blocking the stellate ganglion with regional anesthesia (a ‘stellate ganglion block’ or SGB) reduces the symptom of Long COVID. The purpose of this study is to investigate the effect of SGB on ME/CFS symptoms and physiology. We will measure orthostatic tolerance, cognitive function, subjective rating of symptoms, and plasma markers before and after treatment. Non-longitudinal studies are hampered by the large overlap in the ranges of potential biomarkers in healthy controls and ME/CFS patients. The advantage of our study is that each patient serves as their own control, which may allow us to find a biomarker that correlates with changes in symptom severity. The SGB procedure has the potential to illuminate the pathophysiology of ME/CFS symptoms, and alleviate the suffering of individual patients.

It doesn't look as though the treatment will be blinded, and a whole range of 'potential biomarkers' are being collected, so lots of opportunities for cherry-picking. Edit to add: This funding will give this business a lot of credibility in the ME/CFS community. Really disappointing to see SolveME supporting this.


Nice to see Avik Roy and the ATG13 work getting funding though.

External Counterpulsation? When I click through, the explanation for this study is actually for the Stellate Ganglion study. There's a bit about the correct researcher, but then the wrong explanation. The website needs fixing.

 

[Jaybee00]

Seems like the Avik Roy one is the only good one here. FMT won’t work and I don’t think the EECP will either. Disappointing.

How will you do a sham (control) treatment for this thing?

 

[RedFox]

The FMT study is potentially interesting but they insist on weird outcome measures. I think an FMT would be easy to blind so why not just use symptoms scores or something?

The SGB is also hard to blind because it causes certain side effects.

Wust's research on microclots probably won't find anything. But it might be interesting if it does.

I agree that the animal model is probably the most exciting thing here. Though we should all be aware that the Ramsay Grant program is all about early-stage research.

 

[ahimsa]

From a recent Solve M.E. email announcing their Solve Spotlight webinar series:

==========

In our Solve Spotlight webinar series, we connect with members of our community to share their experiences with ME/CFS, Long Covid, and other post-infection diseases. In the coming months, we’ll focus on authors whose empowering narratives illuminate the complexity of living with complex chronic illness and chronicle the fight for patient-driven change.

Ryan Prior On The Long Haul and
How Patients Can Change the World

In his new book, The Long Haul: Solving the Puzzle of the Pandemic's Long Haulers and How They Are Changing Healthcare Forever, CNN journalist and ME/CFS patient advocate Ryan Prior writes about how chronically ill communities predicted the Long Covid crisis, and how patient voices should shape the medical system of the future.

In this webinar hosted by Solve M.E. VP of Advocacy and Engagement Emily Taylor, Prior talks about The Long Haul and how getting Long Covid treatments right could help revolutionize care for all complex, chronic illnesses.

Join us Monday, November 14 at 10 AM PT.

Register today for the chance to win a free signed copy of The Long Haul!

Register for November 14 Webinar Here


Fiona Lowenstein, Dona Kim Murphey and
The Long Covid Survival Guide

For people living with Long Covid, navigating the uncharted territory of this new chronic illness can be challenging. With over two hundred unique symptoms, and with doctors continuing to work toward a cure, people experiencing Long Covid are often left with more questions than answers. The Long Covid Survival Guide is the first patient-to-patient guide for people living with Long Covid—with expert advice on getting diagnosed, dealing with symptoms, accessing resources and accommodations, and more.

Editor Fiona Lowenstein (award-winning journalist, producer, speaker, and the founder of Body Politic) will join us on Tuesday, November 22 at 10 AM PT to talk about the book. They’ll be joined by contributor Dona Kim Murphey, a board certified clinical neurophysiologist who co-authored with Dr. David Putrino a Survival Guide chapter on diagnosis.

Whether you’re a caregiver or a person with Long Covid, ME/CFS, or another associated condition, this webinar will include relevant information about how to take care of yourself and what comes next. Register today for the chance to win a free signed copy of The Long Covid Survival Guide!

Register for November 22 Webinar Here


Meghan O’Rourke On Her NYT Bestseller
The Invisible Kingdom: Reimagining Chronic Illness

Meghan O’Rourke will join us on Monday, January 23, 2023 at 12 PM PT to discuss her New York Times bestseller The Invisible Kingdom: Reimagining Chronic Illness, which is a finalist for the National Book Award in nonfiction.

Meghan is recipient of numerous literary awards, including a Guggenheim Fellowship, a Radcliffe Fellowship, a Lannan Literary Fellowship, and the Union League Prize for Poetry from the Poetry Foundation. She is also editor of The Yale Review. Her writing has appeared in The Atlantic Monthly, The New Yorker, and The New York Times. Register today for the chance to win a free signed copy of The Invisible Kingdom!

Register for January 23, 2023, Webinar Here


Support Our Educational Webinars Today
Solve M.E. is proud to host free, online webinars that uplift the voices of community members who are dedicated to raising awareness of the devastating impact of chronic diseases. You can help support these efforts by giving today.

Donate Today

==========

 

[Sly Saint]

There is now also
Solve Long-Covid

Long Covid Patient Advocate and ME/CFS Expert Share Insights during WCHM TV Interview Segment

ME/CFS and Long Covid expert Dr. Peter Rowe and Long Covid patient expert Cynthia Adinig were interviewed by WCHM TV and spoke to the devastating personal and economic impact of Long Covid, and how more research for Long Covid cures and treatment will also benefit ME/CFS and associated disease communities. Dr. Rowe is a member of Solve’s Research Advisory Council and Director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center, as well as Professor of Pediatrics at Johns Hopkins Children’s Center. His clinic at Johns Hopkins is one of the country’s leading centers for ME/CFS, and he has treated Long Covid patients at his practice, many of whom meet the criteria for ME/CFS. Dr. Rowe was the first to describe the relationship between ME/CFS and treatable orthostatic intolerance syndromes, as well as the association between Ehlers-Danlos syndrome and ME/CFS. Solve board member Cynthia Adinig is a patient advocate for both ME/CFS and Long Covid, and has been featured in a multitude of national news media and asked to speak at international conferences in this capacity. In addition to her work as a marketing specialist and equity policy advisor, she also created a digital guide for medical care for longhaulers of color.

 

[RedFox]

Wow, they nailed it!

 

[Hutan]

From a Solve ME email, an opportunity to join their 'Lived Experience Taskforce:

Building on our commitment to centering the crucial voices from our community in the leadership and decision-making at Solve M.E., we are transforming our Community Advisory Council (2019 - 2022) into our new Lived Experienced Task Force (LET) launching in 2023.

The Lived Experience Task Force (LET) will serve as leadership partners with Solve M.E. This partnership will be based on the principles of meaningful community engagement where equity is our goal and expectation. LET partners — many from historically under-engaged communities — will improve our ability to deliver responsive services, programming, training and technical assistance to organizations and other partners affected by ME/CFS, Long Covid and other associated conditions.

We are actively seeking community partners who are:

• Partners affected by myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS); these partners can be patients or caregivers
• Partners affected by Long Covid and associated conditions; these partners can be patients or caregivers
• Partners from communities that have been historically economically and/or socially marginalized and are currently affected by ME/CFS, Long Covid and associated conditions.

If you or someone you know would like to join our ambitious program to create real change, fill out a brief application form linked below. Please note: this application will take approximately 5-15 minutes, and will be closed on Sunday, January 8, 2022.

Apply Here

 

[Andy]

Solve M.E. Awarded Grant From Chan Zuckerberg Initiative to Support Patient Engagement in Long Covid Research

"Today, Solve M.E. announced it is the recipient of significant grant funding from the Chan Zuckerberg Initiative (CZI). With the $247,500 in funding, Solve M.E. will develop a groundbreaking program that will train a network of patient leaders, scientists and other stakeholders with diverse backgrounds to enhance patient engagement in Long Covid research. These trained patient representatives will ultimately create a targeted research agenda, a network of empowered patientadvocates and a guide to working with Long Covid patients for researchers. These critical tools will provide urgently needed guidance on achieving patient-centered research in the Long Covid field, as well as help to empower communities in other related fields."

Press release PDF, https://solvecfs.org/wp-content/uploads/2022/12/CZI-Press-Release_FINAL-PDF.pdf

 

[Andy]

"The Fall 2022 Edition of The Chronicle is Available Online Now!",

Featured articles include:

• New Ramsay Grant Researchers Push the Envelope with Innovative ME/CFS & Long Covid Studies
• Milestone: First You + ME Registry Peer-Reviewed Paper Published
• Solve’s Summer Advocacy Roadshow
• Community Support Resource Guide
• Solve M.E. Spearheads the First Nationwide Long Covid PSA Campaign
• Ryan Prior On The Long Haul and How Patients Can Change the World
• Solve Experts Educate Millions About ME/CFS and Long Covid in National Media Tour
• The Transformative Power of Monthly Giving
• Donor Spotlight: Fara Leonard
• An Evolving Landscape: Long Covid’s Impact on ME/CFS

https://solvecfs.org/wp-content/uploads/2022/12/Chron_F22_hiquality.pdf

 

[Trish]

From an email:

Join Us For Solve M.E. Advocacy Week!

We are so excited to announce that next year’s Solve M.E. 2023 Advocacy Week will take place both virtually and in-person throughout the week of April 17th to April 22nd, 2023!

Advocacy Week brings you together with your elected leaders providing YOU with the opportunity to advocate at the highest levels for ME/CFS, Long Covid, and post-infection diseases. Our expert team will manage, customize, and schedule your meeting requests, making it easier than ever to educate lawmakers about the issues that matter to YOU.

Next year’s Senate Day is a full-day Washington D.C. Capitol Hill experience bringing you face-to-face directly with YOUR Members of Congress and their staff. For advocates looking to participate virtually, our House Day will feature fully online Zoom meetings with your Representatives and their staff. Will you join us?

Registration is now open for both in-person and virtual Congressional meetings.

Advocacy Week is a nationwide advocacy effort to connect people with ME/CFS, Long Covid, and associated chronic conditions; scientists; clinicians; and caregivers to share their unique stories with Congress. Your voices inform and empower our advocacy efforts as we fight to make ME/CFS, Long Covid, and other post-infection diseases better understood, diagnosable, and treatable.

No experience? No problem! We will make sure you have everything you need to conduct a successful meeting. Training will take place online and in person in early April, and recordings will be made available. We will also host Zoom office hours for specific questions and 1-on-1 support.

Learn more and register below:

Learn More
Sign Up for In-person Meetings in Washington DC
Sign Up for Virtual Meetings on Zoom

 

[Hutan]

From an email dated 24 Dec 2022:

If it works for Long Covid, can it work for ME/CFS?

Thanks to your donations, 2022 Solve M.E. research grant recipient Deborah Duricka, PhD will attempt to scientifically answer this incredibly important question.

A previous study found that blocking part of the sympathetic nervous system with regional anesthesia reduces the symptoms of Long Covid. Through her Solve research grant, Dr. Duricka will apply these findings to see if the same block works on ME/CFS symptoms such as brain fog and fatigue.

If successful, this could ultimately lead to effective treatments.

Let’s turn hope into healing! With your generosity, we will find solutions.

SolveME is still going on about this research on stellate ganglion blocks. They make it sound as though the treatment has been proven to be useful for Long Covid. I don't think this is honest - on the basis of this they ask for donations. I'm copying my comment made upthread about this, as it doesn't look as though anything has changed. I am left feeling very disappointed in SolveME.

Disappointing to see this. We've discussed Neuroversion in a few places on the forum, e.g. here
Stellate ganglion block reduces symptoms of Long COVID: A case series (2021) Liu et al
That company is certainly good at marketing, they were all over the IACFSME conference.

I don't think there is enough evidence to warrant SolveME's scarce funds being spent on this. Even if there was, this Neuroversion team do not have the necessary level of equipoise, or, I think, demonstrated scientific rigour to be doing the study.

 

[Dolphin]

"The Fall 2022 Edition of The Chronicle is Available Online Now!",

Featured articles include:

• New Ramsay Grant Researchers Push the Envelope with Innovative ME/CFS & Long Covid Studies
• Milestone: First You + ME Registry Peer-Reviewed Paper Published
• Solve’s Summer Advocacy Roadshow
• Community Support Resource Guide
• Solve M.E. Spearheads the First Nationwide Long Covid PSA Campaign
• Ryan Prior On The Long Haul and How Patients Can Change the World
• Solve Experts Educate Millions About ME/CFS and Long Covid in National Media Tour
• The Transformative Power of Monthly Giving
• Donor Spotlight: Fara Leonard
• An Evolving Landscape: Long Covid’s Impact on ME/CFS

https://solvecfs.org/wp-content/uploads/2022/12/Chron_F22_hiquality.pdf

From page 1:

"Ramsay researchers have gone on to earn $8 million in follow-on funding, much of it from the National Institutes of Health (NIH). That's a 8x return on our investment in preeminent scientists and researchers driving toward treatments"

 

[ahimsa]

Blog post by Emily Taylor of Solve M.E.:

Key Takeaways from the New Federal Budget

https://solvecfs.org/key-takeaways-from-the-new-federal-budget/

Highlights:

• $10 Million for Long Covid Research. Solve M.E. was successful in mobilizing efforts through the congressional Labor-Health and Human Services title to bring about greater resources to understand Long Covid and its effects on the daily lives of people. Solve was able to muster support in both the House and Senate to obtain an additional $10 million to deliver patient-centered, coordinated care to those living with Long Covid, including the development and implementation of new models of care to help treat the complexity of symptoms that those with Long Covid experience.

• Access to $370 Million in Congressionally Directed Medical Research Program (CDMRP) Funding. Solve M.E. engaged in an effort to create a separate callout in the Defense Appropriations account, critical to receiving the Defense Department funding ME/CFS is due. Through this account, now, Solve M.E. will be able to successfully receive a portion of the $370 million directed to the CDMRP account. Further, Solve’s efforts to include a rare separate mention for the Department to focus on Myalgic Encephalitis/Chronic Fatigue Syndrome and Long Covid was included in the agreement.

• ME/CFS at the Centers for Disease Control and Prevention (CDC). The agreement allocates $5.4 million to the CDC to support their recent progress in ME/CFS medical education and take several steps to coordinate and bolster ongoing efforts at the agency. For example, CDC would be required under the bill to develop a national epidemiological and disease tracking study of post-infectious syndromes prevalence, specifically the rates of post-acute COVID-19 syndrome and ME/CFS in adults and children. The agreement also urges CDC to strengthen collaboration with, interagency partners, experts and stakeholders, and, the NIH on study design protocol. Additionally, the bill urges CDC to conduct a series of epidemiological studies into the causes, diagnosis, and risk factors of ME/CFS. Finally, it urges CDC to engage physicians and patients in an effort to increase awareness of ME/CFS and disseminate updated clinical guidance.

• Advanced Research Projects Agency for Health (ARPA-H). The bipartisan funding bill includes $1.5 billion—an increase of $500 million above the FY 2022 enacted level—for the President’s Advanced Research Projects Agency for Health (ARPA-H), a historic initiative to help improve the health of all Americans. Solve M.E. has fought hard for ARPA-H to be fully funded because of the unbridled potential for an ARPA-H initiative to overcome research barriers for ME/CFS and Long COVID. ARPA-H is currently hiring program directors – Solve M.E. is proud to join #MEAction and other organizations to “encourage people with expertise in infectiction-associated chronic illness to consider pursuing this opportunity.”

• Postural Orthostatic Tachycardia Syndrome (POTS). POTS is one of the most common forms of dysautonomia, estimated to impact up to 3,000,000 Americans prior to the COVID-19 pandemic. Recent research suggests that many individuals experiencing Long COVID are developing moderate to severe dysautonomia, most commonly presenting as POTS. Due to the sudden increase in the patient population affected by this debilitating disorder, the agreement strongly encourages NIH to support new research on POTS, to address the gaps in current knowledge identified during a previous NIH workshop. The included guidance language strongly encourages NIH to establish a multi-Institute Notice of Special Interest to spur additional needed research addressing the identified gaps in knowledge.

• $350 million approved for Flexible Public Health Infrastructure. $350 million in flexible funding for state and local public health infrastructure needs, an increase of $150 million over FY 2022, and $71 million — a $10 million increase over FY 2022 — for strengthening the public health workforce, including potential medical education about Long COVID and ME/CFS.

• Prepare for and Respond to Existing Viruses, Emerging New Threats (PREVENT) Pandemics Act. In a partial win, the PREVENT Pandemics Act which Solve supported and advocated for did make it into the omnibus – it didn’t include everything we had hoped for but what was included has positive implications for the public health workforce, pathogen tracking, disparities and health outcomes for marginalized populations (such as people with Long COVID and ME/CFS) and pandemic preparedness in the future.

 

[ahimsa]

Webinar hosted by Solve M.E. and BIO:

“Long Covid: What Will It Take To Accelerate Therapeutic Progress?”
February 21 @ 10:00 am - 1:00 pm Pacific / 1:00 pm - 4:00 pm Eastern

Solve M.E. and The Biotechnology Innovation Organization (BIO) will co-host a three-hour virtual event “Long Covid: What Will It Take to Accelerate Therapeutic Progress?” on Tuesday, February 21 from 10:00 AM – 1:00 PM PT (1:00 – 4:00 PM ET).

Our goal is to convene stakeholders to advance research and development to diagnose and treat Long Covid, ME/CFS, and other post-infection diseases. By increasing awareness among drug developers to the unmet needs of our communities, we hope to inspire these industry players to study these diseases and create therapeutic breakthroughs.

The session will establish a knowledge base of emerging research in Long Covid and existing body of data in other post-infection diseases (such as myalgic encephalomyelitis/chronic fatigue syndrome, dysautonomia, mast cell activation, and others). The session also will feature solution-oriented perspectives from government, academic, and industry researchers, patient groups, funding sources, and policymakers.

Full announcement here, includes list of speakers:

https://solvecfs.org/event/solve-m-...l-it-take-to-accelerate-therapeutic-progress/

Register here:

https://bio-org.zoom.us/webinar/register/7416748364515/WN_j0hhpdzFQpujJRcVanmnMg

 

[ahimsa]

Merged thread

New blog post from "Calling all ME/CFS Allies!" - Solve ME Advocacy Week: Sign Up Today!

I discovered this substack blog recently (substack = yet another publishing platform):

Calling all ME/CFS Allies! By Encephalogirl​

Home page: https://encephalogirl.substack.com/

The most recent post interviews Emily Taylor from Solve M.E. about their upcoming Advocacy Week:

https://encephalogirl.substack.com/p/solve-me-advocacy-week-sign-up-today

MK: Advocacy Week seems like an enormous undertaking and an incredible opportunity for the patient, caregiver, and ally communities. Can you tell us what it’s all about?

ET: Advocacy Week is our flagship program built on a single principle: “No one tells your story better than you.”

The week provides both in-person and virtual opportunities for the community to speak directly with their Senators and/or Representatives. We try to make it as easy as possible to bring your stories into the halls of power. Whether it’s the person with the illness or a representative you appoint, your healthy ally, Solve ME focuses on making the program fully accessible.

We offer all the training, support, and materials needed to make that journey as easy as possible. Patient stories matter and the more stories we can directly share with those in power, the greater our chance for change.

Advocacy Week is a chance for those impacted to share their stories directly.

 

[Sly Saint]

CDC Responds to Solve M.E. Comments on Draft Review of Diagnosis and Treatment of ME/CFS

In 2018, the Centers for Disease Control and Prevention (CDC) announced it was soliciting bids to create evidence-based treatment guidelines for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In 2019, the CDC announced a contract with the Pacific Northwest Evidence-Based Practice Center (EPC). The first draft of this work, a Draft Systematic Evidence Review, was shared with the public in 2021 for a public comment review period.

This report is critical because it will inform the final evidence-based CDC guidelines for management practices for patients with ME/CFS. Solve submitted public comments strongly recommending against the adoption of the review — comments that the CDC responded to in January. Solve M.E.’s comments raised strong concerns about the inclusion of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) and whether the inclusion of this weak evidence could cause harm.

Unfortunately, the CDC has determined that there is not enough evidence to formulate the recommended guidelines, and they will instead publish a literature review. Fortunately, the CDC report will help advocates make the case for clinical trials before Congress. This will be followed by additional trials with the hope of eventually being able to conduct a full systematic review.

While we are disappointed by this outcome, we are encouraged that the CDC took the time to reflect on our comments and to respond in a way that not only makes it clear that we need more research in this area, but also directly acknowledges the potential harm that could be caused by a misuse of the information in the articles that were selected for review. We believe that this clarity from the CDC will allow us to advocate more effectively moving forward.

Read the CDC comments here.

https://solvecfs.org/cdc-responds-t...-review-of-diagnosis-and-treatment-of-me-cfs/

 

[rvallee]

Will this "literature review" expand on, or duplicate the IOM report? Because nothing significant has changed since, other than confirming the report's conclusion.

That report took years to produce, and it was largely ignored anyway. Long Covid obviously changed everything, but they're still not even where we were on day one, no one has the courage to come out and end this stalemate, admit that they ruined millions of lives through sheer negligence and ideological fanaticism.

So nice, though, that they committed to a useless process, even though they were told the way they were doing it was useless, and now they're, uh, I don't even know what they're even doing anymore. Just dysfunction and indifference. They produce a report that doesn't have enough evidence to overturn something that doesn't have evidence. The art of not giving a damn.

All this process did was waste 4 years for nothing. Because they did it all wrong. After decades of negligence, it's just more of the same old. Zero sense of urgency. What a total disaster.

 

[ahimsa]

A reminder for US folks who want to participate in Solve ME's Advocacy Week = April 17 - 21, 2023.

The registration deadline for in-person and Zoom meetings is Sunday, March 26.

Here's a schedule summary:



Registration link for In-person Senate Meetings: https://lobbydayregistration.wufoo.com/forms/z1q7hmh21lr1kwk/

Registration link for Virtual Meetings with U.S. House Members: https://lobbydayregistration.wufoo.com/forms/z1adjibw0c3ltzm/

Full details and an FAQ can be found here: https://solvecfs.org/advocacy/advocacyweek2023/