Solve ME sent out email reminder for their next webinar:
CDC Update: Recent Strides in Long Covid
In this webinar on Wednesday, March 29 at 10 AM PT, Solve M.E. President Oved Amitay welcomes Dr. Elizabeth Unger, chief of Chronic Viral Diseases Branch at Centers for Disease Control and Prevention, and her CDC colleagues to share updates and progress on The School-Based Active Surveillance Project (presented by Anindita Nanda Issa, MD), the Long Covid Fatiguing Illness Recovery Program (ECHO) (presented by Jennifer Cope, MD, MPH), and initial findings from the Multi-site Study of Post-COVID conditions (Medical chart abstraction project) (presented by Miriam Nji, MD, MPH).
Meet the Members of Solve’s New Lived Experience Task Force (LET)
In December, we told you about a new Solve initiative, The Lived Experience Task Force (LET). LET was designed to serve as leadership partners with Solve M.E., a partnership based on the principles of meaningful community engagement where equity is our goal and expectation.
Our LET partners — many from historically under-engaged communities — will collaborate to improve Solve’s ability to deliver responsive services, programming, training and technical assistance to organizations and other partners affected by ME/CFS and Long Covid.
In forming LET, we sought 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 or Long Covid
We’re pleased to announce the members of LET for the inaugural 2023-24 term! They are:
Tracy Conrad
Ursula Carrie
Janice Frisch
Benjamin Ho
Soh-Yeon Lee
Jailyn Mercadel
Hollis Mickey
Kelly Ruta
Kate Sanchez
Lala Shanks
Jessica Turner
Christina Yesenofski
We’re so excited to work with our LET partners, and one of our first orders of business will be to select the topic for our upcoming EmPOWER ME event for Advocacy Week 2023.
Join Us for Our Advocacy Week Hallmark Event, EmPOWER M.E.!
Hosting EmPOWER M.E. during Advocacy Week each year is one of our favorite ways to connect with our community after a long week of congressional meetings.
This year, our Lived Experience Taskforce (LET) partners helped us choose our topic: Navigating the World with Energy Limiting Disabilities.
This special event on April 21 at 10 AM ET will feature expert ME/CFS and Long Covid advocates sharing tips for overcoming personal, professional, and medical challenges.
During our EmPOWER M.E. roundtables, we convene panels of patient advocates, professionals, and scientists to share their expertise on topics relevant to the quality of life for people with ME/CFS, Long Covid, and their caregivers.
From a Solve M.E. email - webinar on sleep issues is scheduled for Thursday, April 27 at 11 am Pacific time:
Solve Invites SleepScore Lab for Webinar on Effects of Long Covid & ME/CFS on Sleep
Thursday, April 27, 11 am Pacific Time
Many individuals who have had COVID-19 experience long-term symptoms that have a major impact on their lives. One of the most common symptoms is sleep disturbance.
After more than six months from the time of infection, about 60% of people self-report lingering sleep difficulties, even if they had a mild course of acute COVID-19.
Unrefreshing sleep is also part of the diagnostic criteria for ME/CFS, along with other overlapping symptoms such as post-exertional malaise (PEM) or “brain fog.”
To probe deeper into the topic of sleep, we are pleased to invite you to a webinar on the Effects of Long Covid and ME/CFS on Sleep, featuring SleepScore Lab’s neuroscientist, Dr. Elie Gottlieb. The presentation will cover a range of topics including:
The connection between Long Covid, ME/CFS, and sleep disturbances.
The neurological and cognitive aspects of sleep and how brain changes/disruptions may be bi-directionally associated with Long Covid and ME/CFS.
Unrefreshing sleep vs. quality sleep and why people with ME/CFS or Long COVID might experience the former.
The evidence-based methods to improve sleep and how SleepScore Lab’s improvement program addresses them.
Solve Spearheads Call for New NIH Office for Infection-Associated Chronic Illness Research (IACIR)
"This year, Solve is beginning one of our most ambitious advocacy projects to date — one which could alter the research landscape for ME/CFS, Long Covid, and other infection-associated chronic illnesses for decades to come. We’re calling for the creation of a new, dedicated office at the National Institutes of Health (NIH).
This office would be responsible for overseeing and coordinating research and development efforts into infection-associated chronic illnesses within the NIH, accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others. Currently, these diseases are funded across multiple centers and institutes without any method of synergy or oversight to avoid duplication.
There is tremendous value in creating a centralized office to coordinate this research. The multi-systemic nature of infection-associated chronic illnesses requires that research stretch across multiple specialities, focusing not only on specific bodily systems, but the interactions between them. "
Solve Spearheads Call for New NIH Office for Infection-Associated Chronic Illness Research (IACIR)
This year, Solve is beginning one of our most ambitious advocacy projects to date — one which could alter the research landscape for ME/CFS, Long Covid, and other infection-associated chronic illnesses for decades to come. We’re calling for the creation of a new, dedicated office at the National Institutes of Health (NIH).
This office would be responsible for overseeing and coordinating research and development efforts into infection-associated chronic illnesses within the NIH, accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others. Currently, these diseases are funded across multiple centers and institutes without any method of synergy or oversight to avoid duplication.
There is tremendous value in creating a centralized office to coordinate this research. The multi-systemic nature of infection-associated chronic illnesses requires that research stretch across multiple specialities, focusing not only on specific bodily systems, but the interactions between them. An office would also create new opportunities for patient-engagement and stakeholder input.
"This new office would be critical to avoid potentially redundant research and and insure related research is cross-pollinating among different centers at the NIH,” says Emily Taylor, Solve VP of Advocacy and Engagement.
Our decades of experience in the ME/CFS community have also led us to recommend that the office should be located in the Office of Research on Women’s Health (ORWH). It is a common feature of infection-associated chronic illnesses to disproportionately impact women — ME/CFS impacts women 3-4 times more often than men. Like many autoimmune diseases, the predominant impact on women is cited as a factor for underfunding, dismissal and stigma.
Our decades of experience in the ME/CFS community have also led us to recommend that the office should be located in the Office of Research on Women’s Health (ORWH)
This is seriously so disturbing it could derail SolveME's future efforts, wondering how the hell did they think this is a good idea and if they have their priorities set straight. Honestly between this and deciding to do a GET trial, I'm not entirely sure which would be the most absurd.
It's beyond obvious that such an institute will need to happen, and it's too early to do the right thing, too much cultural blockage, but it will likely happen using AIDS research as the foundation and centered on immunology with lots of cross-disciplinary work. Frankly that AIDS continues to be its own thing separate from the rest is starting to become a bit embarrassing. It's way past time to build around those foundations and work out the impacts of chronic infections and the long-term impacts of infectious pathogens.
Maybe they are trying for a compromise, sensing that doing it right the first time around is not politically viable, but we would be stuck with the consequences of building it wrong for too long. Again. This is one of the worst ideas to come out of the sane side of ME research in a long time.
I completely agree. I started out reading the email from SolveMe thinking 'great', and ending up groaning. Actively campaigning for Infection-Associated Chronic Illness Research to be in the Office of Research on Women's Health seems to be an own-goal. I would be very interested to understand their reasoning. It's not as if these chronic illnesses only affect women.
It sounds political to me, and it's possible there could be reasoning behind it. For instance, if they happen to know there are going to be big bucks available for a series of projects to redress the historic imbalances where research was always based on male bodies because female ones are too complicated, they may have taken it as a pragmatic decision.
I'ms second-guessing, of course, and the real truth might be exactly as dumb as it sounds on first reading. But if it is a way to access bigger or longer-running grant programmes, the fact that it appears unlikely the perpetuating mechanism is completely different in men and women might mean there could be some merit in the approach? (Yeah, I know, I have a really annoying habit of looking for the positives. )
CFS, as it was known then, was originally housed in the National Institute of Allergy and Infectious Diseases (NIAID) until it was thrown out from there and landed in the Office of Research on Women's Health (ORWH). For many years, this move was decried by advocates as, unless things have changed, this is a very small office with a very small budget with very limited funding for research programs of any kind. "CFS" languished there for years. It was a happy day when it was finally taken out of this office. So, I find this idea from Solve quite shocking. I would like an explanation from Solve as to why they think going back to this is a good idea. Also, I find this insulting to the many who are not female but who also suffer from post-infectious chronic diseases.
For instance, if they happen to know there are going to be big bucks available for a series of projects to redress the historic imbalances where research was always based on male bodies because female ones are too complicated, they may have taken it as a pragmatic decision.
Yes, I'd also guess this plays a role, go where the funding is. I don't think it's a bad idea per sé; reading Willow's comment above, I'm more worried if the ORWH can "carry" this project.
My understanding is as @Willow says, that this batting back and forth has done nothing but play into the hands of political opponents for at least the last ten years.
I get the impression that Solve ME is run by people who don't actually have any understanding of the realities of medical research, or medical politics for that matter.
This statement:'It is a common feature of infection-associated chronic illnesses to disproportionately impact women — ME/CFS impacts women 3-4 times more often than men. Like many autoimmune diseases, the predominant impact on women is cited as a factor for underfunding, dismissal and stigma.' is just a mish-mash of disinformation.
It is disheartening that Solve seem to have changed significantly for the worse. They used to be one of the best ME charities. I have no idea whether this is due to changes in senior staff and directors, or whether it is due to trying to become a Long Covid organisation as well as ME and losing the plot.
Only scanned -
"accelerating research into a multitude of related illnesses, including ME/CFS, Long Covid, fibromyalgia, multiple sclerosis, chronic lyme disease, and POTS, among others."
multiple sclerosis - we know the cause of most cases - it follows EBV infection, only 1 of 30 ish cases, in the US Army study, didn't follow EBV. As per Jonathan's comments you can treat multiple sclerosis using rituximab. Plus you can diagnose multiple sclerosis & there's a biomarker. Plus an EBV vaccine would prevent most cases (90+%)---
The remaining examples "ME/CFS, Long Covid, fibromyalgia, [delete multiple sclerosis,] chronic lyme disease"
can be investigated via large genome-wide association studies (GWAS). Why don't Solve run a campaign highlighting that we can now make progress in diseases which are currently of unknow cause and have no treatment options ---GWAS and potentially whole genome sequences ++?
Solve seem to be suggesting that we need a new Department --- a cynical bureaucrat might decide to go for that. Not to make any meaningful progress but to do some widow dressing! Guess that's what folks here are concerned about.
Luckily Vicky Whittemore [NIH] won't follow this - she'll aim for genuine attempts to move things forward-
"We are currently in the process of developing an ME/CFS Research Roadmap and Genomics/Genetics are one of the topic areas under discussion. We are aware of the studies you mentioned, and Chris [Ponting] is involved in the group that is discussing genomic/genetic research on ME/CFS. There will be a series of webinars open to the public in the coming months that will provide perspectives from experts in the field regarding research priorities for ME/CFS. If you are not already, you should sign up for the NIH email listserv so you receive notices of the webinar series; go to: https://www.nih.gov/mecfs" https://www.s4me.info/threads/deep-...ction-mina-nath-et-al-2023.33187/#post-474237
It was so incredible seeing members of our community at Advocacy Week last month — both in person and virtually! Thank you so much for the energy and time you gave to fight for those with infection-associated chronic illnesses like ME/CFS and Long Covid.
At a glance: your dedication shone through our 222 congressional meetings, with 354 attendees, and 47 states and DC represented! As we have read through the post-meeting reports, one theme that has come through strongly is that staffers on both sides of the aisle were engaged, open to hearing our stories, and wanting to find ways to support our community.
If you’d like a detailed summary of the events, asks, and other updates, watch this special Advocacy Café Chat session with Solve M.E.’s Emily Taylor.
Please take a moment to complete the survey linked below and share your thoughts or feedback. We would love to hear about your experiences and see your photos from Advocacy Week!
Continue Advocating
Even if you didn’t participate in Advocacy Week, you can still get involved! Our remote action tool allows you to engage with your members of Congress using this link to send customized tweets, emails, and phone calls to help amplify our action. Advocates are encouraged to take action as many times as they like!
We are rallying around the CARE for Long COVID Act in both chambers of Congress. This legislation seeks to increase research and expand resources for those struggling with Long Covid and related conditions, including ME/CFS and other infection-associated chronic illnesses. This year ME/CFS is specifically mentioned in the bill language as one of the key comorbidities which occurs alongside Long Covid.
Our goal is to continue encouraging legislators on both sides of the aisle to support or co-sponsor the bills.
Strengthen Your Advocacy With Our Long Covid Prevalence Chart
Our advocacy team partnered with standout advocate Melissa Smallwood to create the Long Covid Prevalence Chart, which indicates what percentage of the adult population is living with Long Covid, state-by-state and district-by-district. Using CDC data from the Long Covid household pulse survey, the chart is further divided up into those with Long Covid living with activity limitations, and those living with significant activity limitations.
These figures are a powerful resource for advocates. Data of this kind is often sobering and helps demonstrate how many people stand to benefit from legislation like the CARE for Long Covid Act.
Find the Chart Here ICYMI: Watch Our Hallmark EmPOWER M.E. Event Online
Hosting EmPOWER M.E. during Advocacy Week each year is one of our favorite ways to connect with our community after a long week of congressional meetings.
This year, our Lived Experience Taskforce (LET) partners helped us choose our topic: Navigating the World with Energy Limiting Disabilities. This special event featured expert ME/CFS and Long Covid advocates sharing tips for overcoming personal, professional, and medical challenges.
In this webinar series, Stephanie Harrison, founder of The New Happy, joins Solve M.E. to help you cultivate greater well-being. She will share her unique perspective as a caregiver fused with her expertise in applied positive psychology. Her interdisciplinary approach to studying happiness is based on hundreds of academic studies and original research that informs The New Happy philosophy that true, lasting happiness comes from being of service to others.
In this session we will be covering science-backed tools that you can use to help you stay resilient. From small daily practices to longer-term perspective shifts, you will walk away with useful suggestions that can be put into practice right away.
My reaction to the terms 'positive psychology', 'The New Happy Philosophy', 'resilience' etc. makes me groan and feel annoyed with the idea of Solve wasting its time and money on this stuff. And inflicting it on caregivers.
Or, even worse, Solve being used to advertise a quack positive psychology business.
As if we didn't have enough to cope with already, now we have someone invited to tell us - I suspect superficial nonsense - about how to be happy. Or even worse telling us we should be happy because we are serving our caree - with the corollary that if we're not outwardly happy we're doing it wrong.
So are carers now going to feel inadequate or failures if they can't be perpetually radiating happiness.
Happiness comes from deep inside the individual, often in unexpected moments, and can include quiet contentment, momentary relief from pain or worry, glimpses of beauty, ordinary things.
I am very resistant to psychologists telling me techniques for manufacturing happiness.
I await being enlightened with interest and a not completely closed mind...
She sells her stuff to big companies and is writing a book. Her basic idea is that we're told material success brings happiness, but this is wrong, it's serving others that brings happiness. [Ideas as old as the hills, nothing new to see here, move along please!]
And she has gimmicks like a daily email you can sign up for that has a piece of art and a piece of advice. She claims, of course, that it's all science backed.
Yes, not so good this is aimed at carers specifically.
But on a general level, I do think society has a problem with consumerism and all the advertising of material possessions as being seen as the way to happiness. And the US society has a bigger focus on consumerism than most societies.
Also if people spend most or all of their free money on non-essential purchases, they may have little or nothing to donate to ME/CFS causes including research. Some people think governments should pay for all the necessary research but the budgets aren’t nearly big enough to do that and without private money, an illness can be left with fewer researchers to make grant applications particularly those with pilot data so may not get a “fair share” of government grant money.
This site uses cookies to help personalise content, tailor your experience and to keep you logged in if you register.
By continuing to use this site, you are consenting to our use of cookies.
)
