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SolveME
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Registrace 12. 08. 2009
Welcome to the video home for the Solve ME/CFS Initiative (Solve M.E.).
Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.
Our work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world are laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.
Solve M.E. is a non-profit organization that serves as a catalyst for critical research into diagnostics, treatments, and cures for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), Long Covid and other post-infection diseases.
Our work with the scientific, medical, and pharmaceutical communities, advocacy with government agencies, and alliances with patient groups around the world are laying the foundation for breakthroughs that can improve the lives of millions who suffer from various “long haul” diseases.
Covid Vaccinations: Efficacy, Options, & Special Considerations for Chronic Illness
People with chronic illnesses often have compromised immune systems or ongoing health issues that can affect how they respond to vaccines. The effectiveness and potential side effects of vaccines may differ for these individuals compared to the general population. Individuals with chronic illnesses may be at a higher risk of experiencing adverse reactions to vaccines. This can make them hesitant to receive the vaccine and necessitates a careful evaluation of risks and benefits.
Solve Chief Scientific Officer H. Tim Hsiao, PhD. talks to infectious disease epidemiologist and science communicator Jessica Malaty Rivera M.S. (Chair, Committee of Scientific and Medical Advisors, Vaccinate Your Family) and distinguished physician Melanie Hoppers, M.D. (Medical Provider, Bateman Horne Center) about the complex issues surrounding Covid vaccination for those with ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses.
This comprehensive session delves into:
•The effectiveness of Covid vaccinations in preventing Long Covid and other long-term symptoms.
•An overview of the different types of Covid vaccines currently available.
•Insights into how vaccine manufacturers address the special needs of individuals with chronic illnesses during vaccine development.
•Expert advice on how people with ME/CFS, Long Covid, and other infection-associated chronic conditions can make informed decisions about Covid vaccination.
This event was funded in part by an educational grant from Novavax.
Solve Chief Scientific Officer H. Tim Hsiao, PhD. talks to infectious disease epidemiologist and science communicator Jessica Malaty Rivera M.S. (Chair, Committee of Scientific and Medical Advisors, Vaccinate Your Family) and distinguished physician Melanie Hoppers, M.D. (Medical Provider, Bateman Horne Center) about the complex issues surrounding Covid vaccination for those with ME/CFS, Long Covid, and other infection-associated chronic conditions and illnesses.
This comprehensive session delves into:
•The effectiveness of Covid vaccinations in preventing Long Covid and other long-term symptoms.
•An overview of the different types of Covid vaccines currently available.
•Insights into how vaccine manufacturers address the special needs of individuals with chronic illnesses during vaccine development.
•Expert advice on how people with ME/CFS, Long Covid, and other infection-associated chronic conditions can make informed decisions about Covid vaccination.
This event was funded in part by an educational grant from Novavax.
zhlédnutí: 815
Video
Solve Honors Top Immunologist Akiko Iwasaki
zhlédnutí 187Před 2 měsíci
Solve President and CEO Emily Taylor presents Sterling Professor Akiko Iwasaki with an award recognizing her contributions to the study of infection-associated chronic conditions and illnesses.
A Message from Solve President & CEO Emily Taylor
zhlédnutí 91Před 2 měsíci
Solve President & CEO Emily Taylor explains how your support makes a difference.
Solve M.E. in Conversation with Dr. Leonard Jason
zhlédnutí 418Před 2 měsíci
In this presentation filmed in Chicago in November 2023, Dr. Jason talks about ME/CFS and Long Covid research, the impact of the DePaul Symptom Questionnaire, his early ME/CFS data collection partnership with Solve, disease subtyping, and the RECOVER project.
World ME Day: Bridging Borders - Global Voices from the World ME Alliance
zhlédnutí 117Před 3 měsíci
Solve is a proud co-founder of the World ME Alliance, the hosts of this special event in honor of World ME Day 2024. In "Bridging Borders - Global Voices from the World ME Alliance" viewers are taken on a journey across the globe, highlighting the efforts of non-profit organizations dedicated to raising awareness, providing support, and advocating for change within the ME community. This series...
Solve President Emily Taylor at the World ME Alliance "Bridging Borders" Event
zhlédnutí 135Před 3 měsíci
At the World ME Alliance "Bridging Borders" event in honor of World ME Day 2024, Solve M.E. President & CEO and World ME Alliance Co-Chair Emily Taylor talks about this defining moment for the ME/CFS community, calls for unity, and teases the opening of the Solve Together real-world data platform for international users (coming soon!).
Comparing immunological signatures between Long Covid and ME/CFS
zhlédnutí 3,7KPřed 3 měsíci
Dr. David Putrino and Dr. Jamie Wood, of the Icahn School of Medicine at Mount Sinai, have conducted several landmark studies on Long Covid. Their extensive research has led them to suspect that the immune responses of people with Long Covid differ in important ways from the immune responses of other people. If so, these differences (called immunological signatures) may explain why some people ...
Symptom Management and Patient Empowerment Through The Long Covid Wearable Study
zhlédnutí 526Před 4 měsíci
The lived experiences of people with ME and Long Covid have shown that activity management, or pacing, can be an effective method of reducing symptom severity. However, pacing is difficult to implement. Many people living with energy-limiting conditions have utilized wrist-worn wearables, or activity trackers, to help implement pacing. To validate the value of using wearables to implement pacin...
EmPOWER M.E. 2024: How to Build and Work with Your Care Team
zhlédnutí 210Před 4 měsíci
Our annual EmPOWER ME event features panels of patient advocates, professionals, and scientists who share their expertise on a topic relevant to the quality of life for people with ME/CFS, Long Covid, and their caregivers. The theme this year is, "How to Build and Work with Your Care Team." Susannah Fox, author of "Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care" (MIT ...
Advocacy Week 2024 Training Session 4: How to Use the Advocacy Associates App
zhlédnutí 204Před 4 měsíci
Solve's advocacy team walks us through the use of the Advocacy Associates app, a tool for managing your Advocacy Week congressional meetings.
Advocacy Week 2024 Training Session 3: What We Are Advocating For
zhlédnutí 221Před 4 měsíci
For Advocacy Week 2024, we'll use our meetings with legislators to educate them on the emerging science and community efforts under the umbrella of infection-associated chronic conditions and illnesses. We're asking for the establishment of an Office or Center at the NIH that addresses infection-associated chronic conditions and illnesses (IACCIs). This would convene researchers across speciali...
Advocacy Week 2024 Training Session 2: What to Expect In Your Congressional Meetings
zhlédnutí 305Před 5 měsíci
In this training session, the Solve advocacy team lays out exactly what you can expect from your Advocacy Week 2024 meetings with congressional representatives.
Advocacy Week 2024 Training Session 1: How To Tell Your Story
zhlédnutí 487Před 5 měsíci
In this training session, the Solve advocacy team discusses the importance of storytelling in advocacy efforts, providing guidance on effective communication strategies and the use of personal stories to represent their constituents. A storytelling worksheet is included to help participants prepare and share their personal stories effectively.
Hydrogen Water Testing for ME/CFS: A New Clinical Trial
zhlédnutí 1,5KPřed 6 měsíci
Free radicals are molecules with one or more unpaired electrons in their outer shells. They tear holes in cell membranes, releasing an overabundance of even more free radicals and preventing proper cell functionality. Antioxidants are molecules stable enough to donate an electron to a rampaging free radical and neutralize it, containing the damage it can cause. Some studies indicate that the an...
Solve Caregiver Corner: Caregiving, Grief, and Self-Care
zhlédnutí 172Před 6 měsíci
In this session, and in honor of National Caregivers Day (February 16), Stephanie Harrison (The New Happy) will cover the topic of grief. As with patients, sometimes being a caregiver means grieving losses caused by living with a debilitating disease. From changing relationships and missed opportunities to coping with regret, Stephanie will discuss tools for managing these difficult feelings an...
Changes in the Gut Microbiome in ME/CFS and Long Covid
zhlédnutí 2,1KPřed 7 měsíci
Changes in the Gut Microbiome in ME/CFS and Long Covid
Advancing Research By Enhancing Two-Way Communications Between Patients & Researchers
zhlédnutí 251Před 8 měsíci
Advancing Research By Enhancing Two-Way Communications Between Patients & Researchers
The Patient-Doctor Partnership: Optimally Treating People with Long Covid and MECFS Across the U.S.
zhlédnutí 802Před 8 měsíci
The Patient-Doctor Partnership: Optimally Treating People with Long Covid and MECFS Across the U.S.
Solve M.E. Advocacy Cafe Chat October 2023
zhlédnutí 100Před 9 měsíci
Solve M.E. Advocacy Cafe Chat October 2023
Opportunities for Action: Infection- Associated Chronic Conditions
zhlédnutí 553Před 10 měsíci
Opportunities for Action: Infection- Associated Chronic Conditions
Explore Our New Patient-Centered Data Platform, Solve Together
zhlédnutí 419Před 11 měsíci
Explore Our New Patient-Centered Data Platform, Solve Together
Federal Policy Webinar: How to Make an Impact with Support Long COVID and a National Taskforce
zhlédnutí 307Před 11 měsíci
Federal Policy Webinar: How to Make an Impact with Support Long COVID and a National Taskforce
Caregiver Corner: Resilience Tools for Difficult Times
zhlédnutí 335Před rokem
Caregiver Corner: Resilience Tools for Difficult Times
The Future of Symptom Tracking: Exploring STAT Health’s Revolutionary In-Ear Device (Solve Webinar)
zhlédnutí 3,3KPřed rokem
The Future of Symptom Tracking: Exploring STAT Health’s Revolutionary In-Ear Device (Solve Webinar)
The Appropriations Process: Advocacy Café Chat (Session 7/21/23)
zhlédnutí 155Před rokem
The Appropriations Process: Advocacy Café Chat (Session 7/21/23)
Improving the Lives of Millions - with expert ME/CFS & Long Covid Clinician Dr. Peter Rowe
zhlédnutí 407Před rokem
Improving the Lives of Millions - with expert ME/CFS & Long Covid Clinician Dr. Peter Rowe
Fighting for You - with Solve M.E. Board Member Cynthia Adinig
zhlédnutí 267Před rokem
Fighting for You - with Solve M.E. Board Member Cynthia Adinig
Thank you for creating the most inclusive title regarding these diseases i have witnessed in almost 7 years of being ill. I really do feel it is the most considerate to all approach. So many infection associated chronic conditions arise other than the often mentioned ME and Longcovid. As though there are only two outcomes/damage/ autoimmunity after viruses or bacteria. I, myself, like others i know of have been very ill after a viruses and bacterias. Mine was a hideously terrifying neurological onslaught of flu in 2018 where i had all the same systems as those with Covid -19. Even my GP could not believe it when the pandemic hit and what was happening to people. They said it's exactly like your symptoms. Like my medical records were psychic or something. Not possible. Even down to loosing my complete sense of smell and taste, balance and vision for months to years on end. I have never had PEM and certainly don't have ME and I'm in absolutely no doubt. And to be honest I have gotten sick of people who constantly try to poo-hoo and disbelief my experience when i I have do e nothing but believe theirs over the years. I have had other incredibly debilitating disabling issues that don't fit under the MEcfs label or any other common comorbities. And all my doctors agree. The 6.5 years of now long chronic EBV detected always active in PCR and IgM in my blood cause increased reactivations for months on end and I am in need on 24/7 care until my lymphocytes CD19 kick in. I also have hyperadrogenic POTS and no other comorbities. But also vision impairment /damage neurology finds. Basically, to cut a long story short. Thank you for thinking outside of this horrendous box of illness. For it in my experience and others I got to know, it is a spectrum of varying conditions and illnesses. Like you are highlighting with : ' IACC'. Thank you, so very much for thinking of everyone. And being much more inclusive. Unlike other organisations, unfortunately that don't ever mention other conditions/people suffering too out there. Everyone deserves help and research and respect and belief in these devastating conditions.
We need a treatment STAT on the unrefreshing sleep. People going mad. I use to love sleeping.
Any follow up on this research?
As a me/CFS survivor since 2020… the very first thing we must do is seek an experienced functional medical or intergrative Dr that specializes in CFS. Get tested. Whether it’s for metals, hormones, food allergies… etc. Since being chronically ill I’ve desperately done it all. Acupuncture, asian herbal medicine, kinetic energy, vitamin drips… etc. What finally worked for me was getting monthly treatments of UBI ozone therapy & NAD drips. It is not a cure but now I’m in a place where I can function. I refuse to get crashes or be bedridden. These treatments have got me out of both. Yes, pacing & setting realistic goals are key. Also finding support system thru friends or family can truly empower you as well. Some days are better than others but honestly I choose death. It’s very costly, debilitating & consumes your whole life.
I have recently had Covid. And developed long Covid. Can the inflammation of the brain be tested for long Covid question they headaches I have are horrible and the only thing that will do it is the pentene you know I can’t can’t think much with Covid I’m sorry I just dictate and and as it is, and I can’t, I’m not up to even correcting it, but thank you very much if you could reply.
Genetic to adhd autism hypomobility
Apparently you cant be diagnosed with cfs if you have chronic migraine because thats the cause even though i am? With heds
Is CFS/ME being seen in patients post-covid?
🎉🎉🎉🎉🎉
I am moderate to severe for 16 years. I really wanna participate in the study and I’m willing to travel to Alabama.
Does CFS cause Migranes ?
Terrible audio!
Thank you.
Want us to have the real cause
Any updates on BC007 from Berlin Cures? They have an aptamer in stage two clinical trials to neutralize autoantibodies
I made it 12 minutes into the video and gave up. It's too long. Seems like it is just more of the same info we already had. Same general statistics that have been public knowledge for a long time now. I could use a summary with only the results of studies/trials that included people with ME/CFS. From what I've learned over the past few years, we are intentionally excluded from studies and trials, so the results don't apply to us. Their advice on what to do before and after vaccination is not doable for me and probably many others with ME/CFS. Rest? I need to live my life and I have responsibilities. I am always trying to rest, but there is only so much time to do that. Am I supposed to try to rest even more? Not really possible. Take H1 and H2 blockers...can't take them due to side effects. Reschedule around PEM...how can you do that when it's unpredictable and appointments are hard to get? So I quit watching. Seems like the rest of the hour will be a waste of my time/energy.
I find it difficult to imagine that anyone with MECFS would voluntarily take vaccines in a trial.
A real good youtube channel on Vaccines and all of the myths surrounding them is "debunk the funk". If you are going to trust authorities the incidences of injuries are very very very low. I've heard the analogy taking tylenol is statistically less safe than most vaccines for most complications. I used to be anti vaccine not so much anymore. Still have a lot of distrust towards authorities especially the once trying to push the BS that CFS/ME is psychological and can be cured through graded exercise and cognitive behavioral therapy. Far as I am concerned they are criminals. A lot of the claims to vaccine injury are flukes in other words not statistically significant. But you hear about those not all the recipients who got there vaccine without incident. There is also cause and correlation. If someone got a stroke that doesn't mean the wouldn't have gotten it anyways. Or in other words correlation doesn't "necessarily" mean causation. And then there are people with invisible illnesses like covid and me/cfs. There is no way for authorities to quantify this since they can't confirm it with a diagnosis. Where I'm going with this is "Long covid vaccine injury" or "Long Vaccine" There is no way to quantify something like this cause there is no way to A confirm it, and B confirm the vaccine was responsible. IE the person could have gotten covid and not known it. And dr's never mention this because of political correctness but there are lots of people put plainly who are full of crap. Those people ruin it for everyone else especially those who are suffering from these debilitating illnesses.
Is the data from the referenced studies available for anybody who is interested in doing their own analysis?
Is there consideration of vaccine contamination during manufacturing process?
Thank you! I was diagnosed with Fibromyalgia in 2013 and ME CFS I'm 2018. Praying for more funding and hopeful for better treatment.
So I fell asleep listening when it was live. Just listened to it. I didn't find this helpful at all. We kept getting the same responses. I understand every person is different and react differently to just about everything. But I wanted more than what I read on MEaction, which was suggested to us to read from medical provider in this. My doctors don't know much about ME, so I feel like I can't even go and ask my doctor for their recommendations. If there is no scientific data to show if the risks outweigh the benefits, not sure what the point was of this.
Thank you for this comment; I suspected committing a full hour to this might be a waste of precious spoons, so I’ll skip it. I’ll add here what my functional medicine doctor (extremely well versed in LC) told me last summer when I asked him if I should consider getting any of the upcoming fall vaccines: “I cannot recommend that any of my long hauler patients take any vaccines at this point. We just don’t know enough about what they will do to an already amped up immune response.”
I wonder if this is why many ppl can't deal with temps above 75 deg F. At least the folks who have chemical sensitivities have this issue. As well as hyper sweating symptoms.
🐑💉🧪🧬🦠⏱💣🫀💥🚑
Uhm, I think Long COVID on top of CFS/ME is worse than just having the potential to contract COVID. Why risk it? Anyway, who are these CFS/ME sufferers walking about and putting themselves in a position to get COVID? 😂
Disregarding the fact that CFS/ME sufferers can still have a limited social life, they probably aren't going to be able to take good care of themselves on their own and will be around people who do go out and potentially bring back the covid virus. Also, people seem to be misconstruing the ideas "the virus and vaccine can both potentially cause long covid" with "the virus and vaccine have an equal risk of causing long covid." They're not even close to comparable, the virus is far more likely to cause long covid than the vaccine.
But how do you treat it???
I've had ME/CFS for 31 years and there was no way on God's Earth that I was going to risk that Covid shot on my illness and I'm so glad I didn't fall for the spin and lies as I now know many people who are very injured or worse from it.
Only wealthy middle aged women in Western countries get this disease. It’s fake, it’s just laziness and depression.
7 years ago .. nothing came of this??
🔴Anyone help me PLEASE.Is it known/heard of as a Symptom of people with M.E,to be unable to produce CORTISOL?? = Req.cortisone etc meds to vaguely function & also prevent Adrenal Crisis?? Thank you😊
Solve M.E.Thank you for ALL you do.Great info here,thanks Dr. L.Jason😊
As someone w/ ME & homebound I'm terrified to even leave the house. I'm fully vaccinated.
What helps me to sleep is 10mg of melatonin, magnesium citrate and zinc before bedtime every night. Then I get up around 3a.m. , use the restroom and then eat a banana and yogurt with honey. That puts me back to sleep 😴😴😴😴😴. Nighty-nite!!!! Studies can be good, but why waste time and money when natural remedies can help just as well. My opinion of the so-called studies going on are again a waste of time and money. Doctor's and nurses need to be trained using Dr. Sarah Myhill's book snd Dr. Jacob Teitelbaums book. Reading and studying those two books i have gone from bed ridden in 2021to now about 80 to 90 percent well. MECFS is such an individual disease we need more naturopathic doctors trained in caring for those with MECFS. Just my 2-cents.😮 Miss Monique
Do you follow any utube MECFS recovery story examples to aid in your research? Why are some people recovering with certain coaches?
Thanks Akiko Iwasaki for all you do for M.E., Myalgic Encephalomyelitis/cfs and Long Covid!
Here's to sub grouping with larger scale studies! We've known we need this for ages. About time someone (who actually has the funds) actually funds them. We're being held back by this dramatically. Here's also to studying PEM, the NIH feedback from the community was full of people saying why haven't you mentioned PEM, you must study this, it's so important to us as patients, and yet it's so under studied. From my perspective, if I had to choose just a single one of these horrific symptoms that I have, to get rid of, it would be PEM! For sure. It's hell on earth. And almost impossible to get a grip on when you reach the severe end and are having to fight to get the right level of support to help you literally stay alive. You can't pace to remove PEM if you're not able to get the right support. I'd really love some kind of medication that could help manage it. I feel like it's the key to this illness!!! When I remove PEM I improve. When I keep triggering it I get sicker over time. How is it not more of a big deal in the research world???
Well deserved for Dr. Iwasaki!
I have been dealing with ME/CFS since I was 16, now 53.. it’s been a long hard road, I so wish that they could find a cure for this thing or at the very least find something to make the quality of life better.. one day, I hope
When Dr Patterson is finished with this ...hopefully he can figure out why ppl with connective tissue disorders (Ehlers-Danlos, Hypermobility Spectrum, Marfans Syndromes). Somehow we as a population get MCAS, POTS, chemical sensitivities, ME/CFS, fibromyalgia, etc.
Odd question: has anyone lost their body's response to sexual stimuli? I wondered if it could have something to do with the vascular inflammation and micro clots? (Had vascular ultrasounds last year as had leg heaviness and couldnt walk far...results showed abnormality..but since I have no visual leg symptoms...vascular said there was nothing there..though my PCP rushed a referral to vascular.) Makes me think that vascular dept wasnt up to date with latest research.
The Ugg in mice says it all….balance, pain extremities…yahoo……get on it everyone……we are desperate….xxx
I need to share this with a family member. In place of the usual icons, there is ink a link to an ad by the CDC, stating that the vaccine is safe and effective.
Is there any way on how a private person with ME/CFS can do these brain scans to diagnose neuroinflammation? I would love to finally have a way to at least diagnose this horrible disease...
I have heard for over ten years now about mitochondrial etiologies for ME/CFS, and it seems like a reasonable, well motivated, possibility based on some of the symptoms. Research papers seem to extend this association all the time. However, it seems that none of these pts are worked up by properly trained and experienced biochemical metabolism and medical genetics / mitochondrial disorders specialists. Dr. Fran Kendall, as one example of a competent expert, who has worked in mitochondrial medicine for well over thirty years. These people are out there in good numbers. They know all about specialty testing, which is available from competent, CLIA-certified labs. The kind of thorough metabolic and genetic work-up they can provide is needed by thousands of pts. If only a few pts are sorted out of the murky ME/CFS category as a result of a more definitive diagnosis, that will be a great leap forward for them. And what else might we learn in the fall out? Perhaps a panel discussion of these experts at an ME/CFS conference, as a start towards involving more of them, will help clarify this topic.
Have you done TCR/BCR sequencing? Still have peripheral blood samples to gather that info? We may collaborate.
Great presentation, especially the second half where you got into the practicalities of pacing and modification and adaptation of tasks. I wish I'd seen this months ago when I was first really sick rather than have to cobble it together from different sources myself!
Thank you for your work for the ME/CFS community.
Hello to everyone here that is also struggling and suffering in silence I just started used “visible” the company are tracking our great rate in an app I have been using it a few days and I’m finding most helpful I hope this helps other also 🫶 and thank for your research and dedication in this field ❤
Not had time to listen yet BUT so glad to see ME only,has been used in your info👍🏻FINALLY😊& NOT cfs & long Covid tacked on.Thanks SolveME for all your efforts & support😊
SolveME: How do we get an update on this research?
Thank you for this message of hope. I’m very much hoping that I have a new MP on July 4, who may be more empathetic towards people with ME. As a 66-year-old mother with moderate ME left as the sole carer for my 41-year-old daughter with severe ME and CRPS, who has been bedridden for five years, apparently her needs are too complex for Adult social care to be able to provide carers, but I am expected to do it all myself! I have been trying to get Disabilty adaptations carried out for her for the last 3 1/2 years, but have not been able to find the energy to drive the project forward, and there is no advocacy available to support me with those efforts We don’t want to be ill.We want to be out in the world, working full-time jobs, being useful Citizens, making up for lost time. Making friends all over again, having lost most of the people who used to be in our lives. Every little bit of hope that comes our way is like a candle in the darkness 🕯️