USA: News from Solve ME

From a Solve email:

"Help us shape Advocacy Month 2022! Your feedback and ideas will be used in planning the schedule of events, training, and policy asks. Visit our survey link here.

This expanded Advocacy Month 2022 will take place virtually throughout the month of May, kicking off Monday, May 2. The month will feature dedicated weeks for House and Senate meetings and weekly wrap-up social events to keep you informed and connected with your fellow advocates. This new format will allow us to have more rest days and more training events.

Please take a moment to complete the brief survey at the link below. Whether you’re joining us for the first time or you’re a seasoned advocate, your voice matters.

Click here to take our survey!

If you have any questions about this survey, please email Jessie Brown-Clark at jbrownclark@solvecfs.org.

Thank you for using your voice to 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!"

 

Merged thread.
Note - this webinar had already been posted on this thread here.

"Understanding Your Patient Rights with a Focus on ME/CFS" webinar

A recording of this event can be watched for free here: https://www.youtube.com/watch?v=3O_1wAfSPC8


This was broadcast live on August 13, but I’ve only now had a chance to watch it. Well done to my good friend, Orla, and all the other participants.

There wasn’t a lot of overlap between the talks i.e. they covered different areas; perhaps this was preplanned but it does make it more interesting.



The biographies below give some background information on the participants.

In terms of what they said, it might be briefly summarised as:

- Terri L. Wilder, MSW , looked at things from an activist perspective, focusing on how HIV/AIDS activists fought for their rights and their philosophies.

- Wilhelmina Jenkins described becoming ill in the 1980s before then focusing quite a lot on how she supported her teenage daughter to get an education when she also became ill.

- Orla Ní Chomhraí talked about her illness experience over many years, and what she learned from personal experience and also general resources that she has become aware of in Ireland.

- Emily Taylor drew on her experiences of being a caregiver for her mother to talk generally about how caregivers can support and advocate for the person they care for.



Biographies:

Wilhelmina Jenkins is a longtime patient advocate living in Atlanta, GA, who abruptly became ill with ME/CFS in 1983 at the age of 33. For more than 30 years, she has worked with local and national ME/CFS organizations, including her current work with #MEAction. In 1991, her teenaged daughter also became ill with ME/CFS. Wilhelmina's primary areas of interest are outreach and education to the African American and other underserved communities, as well as engagement with government agencies, including the National Institutes of Health and the Centers for Disease Control and Prevention.


Orla Ní Chomhraí was diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in 1998 and has been on the committee of the Irish ME/CFS Association for over 15 years, currently serving as Secretary. She recently co-authored a research paper entitled "Understanding the economic impact of myalgic encephalomyelitis/chronic fatigue syndrome in Ireland: a qualitative study".


Emily Taylor is the Director of Advocacy and Community Relations for Solve M.E. and she has over fifteen years of experience in policy, organization, and advocacy in both the non-profit and government sectors. Prior to joining Solve M.E., Emily served as the director of policy and advocacy for an award-winning autism organization, where she spearheaded major overhauls in disability, early intervention, and education policies. Emily draws inspiration from her mother who has battled ME/CFS, as well as chronic autoimmune and thyroid conditions since 1999.


Terri L. Wilder, MSW is a social worker and advocate for the rights of people living with HIV/AIDS, the LGBTQ community, and people with Myalgic Encephalomyelitis (ME). She was diagnosed with ME/CFS in March 2016, and since her diagnosis, she has worked with elected officials, public health departments, health care providers, and activists to raise awareness about ME/CFS in New York State and across the globe.

She is currently a volunteer with #MEAction, the co-leader of #MEAction New York, and represented the organization on the federal Chronic Fatigue Syndrome Advisory Committee (CFSAC).

 

Thanks so much, Tom. We did each try to emphasize a different aspect of this disease.

 

Solve email update.


Dear friend,

With an onslaught of Covid-19 cases from the Omicron variant looming, identifying treatments for Long Covid has become even more imperative. Since the beginning of the pandemic, Solve M.E. was one of the first organizations to recognize the emerging threat of the long-term debilitating outcomes of Covid-19. To that end, Solve M.E. co-founded the Long COVID Alliance and helped secure over $1.15 billion for post-infection research.

As I’ve previously shared, the ME/CFS community has much wisdom and experience to offer those suffering from Long Covid, particularly the large number who have or will be diagnosed with ME/CFS. Our work in the post-infection disease space has allowed us to create and support research and advocacy programs that will improve outcomes for the millions suffering from poorly understood, chronic diseases.

That’s why we’re launching our Solve Long Covid Initiative to utilize over 30 years of our research and advocacy experience advancing the understanding of post-infection diseases. This initiative will allow us to continue to expand capacity and investment in programs such as the You + ME Registry, our federal advocacy, the Ramsay Research Grant Program, and more — strengthening our response to this emerging crisis while ensuring that progress made will benefit everyone with a “long haul” disease.

The tragic public health emergency of Long Covid has created a once-in-a-lifetime opportunity to address decades of neglect, raise awareness about ME/CFS, and make unprecedented progress in our search for treatments and cures for post-infection diseases. With the Solve Long Covid Initiative, we are seizing this moment. As we continue to expand our efforts, your voice matters. Stay tuned for more opportunities to get involved and to share your insights.

Thank you,

Oved Amitay
President and CEO

 

As frustrating as it can be on the message side, Long Covid has lead to no real change in how ME or chronic illness are perceived, and likely the only way to get any work done in the next few years will be through the LC label. Nothing will be going directly to anything that happened before, that much is clear, the door is as closed as it ever was. Even with muted recognition of dysautonomia and POTS, even those are still on the blackest list. To speak nothing of brain fog.

So this is the smart thing to do. Mostly because the best option is completely shut out, it has to be done the wrong way. I had low expectations but wow did medicine underdeliver everything. In the end it's the same work, with a label that can get funding, not letting go of another that can't, just pleasing the people who need to tick boxes and have to discriminate against the old labels.

I don't think this will distract. If anything it's institutions who would be distracted by a label they reflexively discriminate against, doing the same thing in the end but satisfied that they checked all the boxes.

For years we've been lied to how some institutions, like the NIH, would like to study this but never had a good opportunity. We only had to look at chronic Lyme to know this was a blatant lie. Even with the best opportunity in history they all simply refuse. So the only way to make this work is to work around it. It's wasteful, inefficient and dysfunctional, but somehow those are explicitly requirements moving forward.

 

From a Solve email:

"New Webinar Alert! Join Us for Ampligen: A General Overview and the Plan for ME/CFS & Long Covid

For the second installment in our clinical diagnostics and treatments webinar series, Solve M.E. welcomes two leaders from bio-pharma company AIM ImmunoTech to discuss their plans for clinical studies of their investigational drug Ampligen in ME/CFS and Long Covid.

Join Solve President and CEO Oved Amitay in conversation with Thomas K. Equels, M.S., J.D. (Chief Executive Officer, AIM), and David R. Strayer, M.D (Chief Scientific & Medical Officer, AIM) to learn more about their plans for Ampligen and how the community may get involved.

Register for the webinar here. To learn more about the history of Ampligen, check out these articles by Health Rising writer Cort Johnson.


Webinar Series: Using Data Analysis to Study ME/CFS and Long Covid

Register for our webinars featuring the 2021 Stupski Awards recipients, Efthymios Kalafatis and Jennifer Stone, PhD, who will discuss their research and answer your questions. Their research will be informed by data in the You + ME Registry.

Visit our events page to learn more and register."

 

This is the second installment in the diagnostics and treatments webinar series, the first of which was the one with the controversial Bruce Patterson.

There is also another new webinar series "exploring the pandemic's long-term healthcare, policy, and economic impact". The first presentation comes from Amy Proal.

 

To be honest, the evidence base for Ampligen seems to be as solid as the evidence base for the snake oil that Patterson was apparently selling.

 

Yes, I actually posted this because I'm not that impressed with the invitees of these new webinar series so far.

 

I hope that Solve will ask serious questions about Ampligen. I completely want guaranteed access for those patients who have left their homes and families and moved to Lake Tahoe and are certain that they are benefiting from Ampligen. But back when Ampligen was turned down for approval by FDA many years ago, they were given a list of things that they needed to do before they could be approved, including a blinded trial. As far as I know, they have taken no steps to do so.

 

From a Solve email.

"Last month, we had the opportunity to connect with a first-time donor who found our organization through their daughter, who suffers from ME/CFS.

After learning about our efforts to fund, inspire, and inform post-infection disease research, he was inspired to give us the biggest gift our organization has ever received. Tom, a real estate investor from Canada, made an extraordinary contribution of over $3,000,000!

In a conversation with CEO Oved Amitay, Tom shared with us his sincere belief that giving to Solve M.E. was his best chance at helping his daughter find diagnostics, treatments, and potentially a cure for her disease. After years of watching her struggle with scores of uninformed doctors, unpredictable energy levels, and declining health, he knew he needed to do something — to become part of the solution. That's how Tom found Solve M.E.

“We are humbled by the trust this donor, and many of you, demonstrate each year with your collaboration, your time, and your contributions,” said Oved. “The best way to honor a gift of any magnitude is to put it to work to achieve breakthroughs that will directly benefit our community.”

Gifts like these will allow us to expand and accelerate our impact for patients in new ways, increase the size and scope of our Ramsay Research Grants, and expand our ambitious ME/CFS and Long Covid database, the You + ME Registry.

Every gift we receive — large or small — fuels the important work we do to end the suffering of those with ME/CFS, Long Covid, and post-infection diseases. We thank you for your support and dedication, and we’re so grateful you’re by our side in this journey.

Stay tuned for updates on how we're putting this generous gift to work in service of our vision of a world free of long haul diseases."

 

A donation of 3 million, it's extraordinary ! Nevertheless, I really hope that all this money will be used wisely.

 

This is more than almost all government funding put together in total. Maybe all but one, it's hard to quantify how much funding in the UK went to real research, doubtful it's more than $3M before DecodeME. And of course if we substract denial research from the total, as it did go towards impairing progress, then it really is all but one as total funding in the UK is firmly in negative amounts.

The real difference-maker would be a desperate billionaire. It would literally change everything. This is just about the lousiest model of scientific research that can be conceived.

Grateful, but sad that it takes the suffering of specific people to make a difference. It kind of reminds of a John Scalzi novel, Head on, where a disease causing locked-in syndrome becomes significant, affecting millions around the world, and the only thing that made a real difference is the president's wife getting it. It wasn't meant as satire either, but it reflects how we still are, same as it was with AIDS: it's who gets affected that counts.

 

Solve M.E. just sent out email about the "CARE for Long COVID Act"

Summary:

Senators Kaine, Markey and Duckworth Introduce CARE for Long COVID Act
Solve M.E. champions post-infection illness research,education, legal, and disability assistance in S. 3726

Yesterday, Senator Tim Kaine (D-VA) led the introduction of S.3726, the Comprehensive Access to Resources and Education (CARE) for Long COVID Act, alongside longtime ME/CFS champion, Senator Ed Markey (D-MA), and Senator Tammy Duckworth (D-IL). This legislation will improve research on and provide resources for people with Long Covid and “related post-viral illnesses,” such as ME/CFS.

Read more about this story in the Washington Post.​

The CARE for Long COVID Act will:

• Accelerate research by centralizing data regarding Long Covid and related post-viral illness patient experiences;
• Increase understanding of treatment efficacy and disparities by expanding research to provide recommendations to improve the health care system’s responses to Long Covid and related post-viral illnesses;
• Educate the public and medical providers by working with the CDC to develop and provide the public with information on common symptoms, treatment, and other related illnesses, specifically ME/CFS;
• Facilitate interagency coordination to educate employers and schools on the impact of Long Covid and related post-viral illnesses
• Create guidance to improve access to services for people with Long COVID and post-viral illnesses, including employment programs, disability assistance, and education rights; and
• Develop partnerships between community-based organizations, social service providers, and legal assistance providers to help people with Long Covid and related post-viral illnesses access needed services.

This is a big win for people with ME/CFS, Long Covid, and other illnesses associated with viruses or viral triggers. Patient voices were centered in the development of this legislation.
​

Twitter post (contains link to text of proposed bill):

 

Yes, the introduction of a bill is just the beginning. It's good news that three senators support this, but if this bill doesn't pass both house and senate, and then get signed by the president, it's not a law and there's no funding for anything.

Folks in the USA can contact to their senators ( also ask friends/family to write) expressing support.

If your senator is one of the three introducing the bill (Kaine - Virginia, Markey - Massachusetts, or Duckworth - Illinois) then you can thank them for supporting it. If your senator is not one of these you can ask them to support it.

I have no idea about when the bill will come up for a vote in either Senate or House.

Solve M.E. has an automated tool for writing to government officials. I'll find it and post it in the next message.

Edit: added a missing word

 

Automated tool to help folks in the USA to contact their senators:

Ask your Senators to support the CARE for Long COVID Act!

URL for those who need/want it:

Code:

https://t.co/q6r4Wt60dL

Tweet from Solve ME/CFS (@PlzSolveCFS) with link to this tool:

Hashtag is #CAREforLongCOVID

 

For information, in the previous video (diagram), Dr. Baraniuk's presentation mentions the concept of nociplastic pain (chronic). This type of pain refers to Central Sensitization (CS)... and observe in this same diagram under the heading " treatment ": Retrain the brain with non-drug therapies... What could these therapies be ? Without having listened to the video, I strongly suspect that this involves the BPS types of approaches !

The article below summarizes the passage from Central Sensatization for chronic pain conditions (ex: fibromyalgia) included grosso modo in Nociplastic Pain, new concept issued by the International Association for the Study of Pain since 2017.

Nociplastic Pain Criteria or Recognition of Central Sensitization? Pain Phenotyping in the Past, Present and Future, J. Clin. Med. 2021 https://www.mdpi.com/2077-0383/10/15/3203/htm

And here are some excerpts from another article * addressing, among other things, the treatment of these nociplastic pain conditions, while barely acknowledging that the mechanisms of this concept are not elucidated ! :

" The mechanisms that underlie this type of pain are not entirely understood, but it is thought that augmented CNS pain and sensory processing and altered pain modulation play prominent roles. The symptoms observed in nociplastic pain include multifocal pain that is more widespread or intense, or both, than would be expected given the amount of identifiable tissue or nerve damage, as well as other CNS-derived symptoms, such as fatigue, sleep, memory, and mood problems. "

" Non-pharmacological therapies : The management of nociplastic pain should prioritise non-pharmacological measures, because most medications provide only a modest benefit and are often associated with adverse effects, which are more likely to occur in nociplastic conditions. Education should highlight the tenets of the biopsychosocial model and promote good lifetime habits, such as engaging in physical activity, weight management, sleep hygiene, and stress reduction. Self-management and a strong internal locus of control should be encouraged. Psychological strategies might include cognitive behavioural therapies, mindfulness and acceptance-based interventions, psychodynamic therapies, biofeedback, and hypnotherapy, all of which should be integrated into a multidisciplinary care programme. A Cochrane review reported that cognitive behavioural therapy (CBT) has small beneficial effects in reducing pain, disability, and distress, whereas the benefits from behavioural therapy were uncertain because of the poor quality of studies included.101 Although strategies such as acceptance commitment therapy, emotional expression, and psychodynamic psychotherapy are commonly recommended, the evidence for their effectiveness (and for adverse effects) is insubstantial,101 as is the case for many treatments for chronic pain. "

* Nociplastic pain: towards an understanding of prevalent pain conditions, The Lancet 2021
https://tryptherapeutics.com/assets/documents/pdf/Tryp-Therapeutics_Nociplastic-Pain_Clauw.pdf

 

In the second screenshot I never heard Dr. Baraniuk explain what the LP represents. He talks about two day cpets and brain changes seen on mri. He doesn’t say a word about the broken gas exchange found in invasive cpet.

In the first slide Baraniuk speaks as if retraining the brain can treat the patients with sensory overload. However he doesn’t tell us how he retrains the brain. @Lilas gave us the information. He lists the drugs that can treat sensory overload. He said the patients who can not tolerate sound and light are trapped in a migraine with a broken off switch. Is that true? Have any of you went from darkness into light, or from silence into noise, after taking antidepressants? Also do you think patients taking low dose Aripiprazole are receiving treatment in this area of the brain?

edit: I’ve got two before one on my screenshots.